Dementia is often regarded as a disease that destroys the person who has it. Wrong! Dementia, also destroys families and friendships, and, is not a disease.
The stigma surrounding dementia, makes it the modern version of leprosy. Those living with dementia, are treated as if they should be carrying a bell and crying "Unclean!" Yet, it is not a disease, and should not be treated as such. Dementia is merely a term used to describe a collection of conditions and illnesses that affect the brain, and have an effect, to a greater or lesser extent, upon the cognitive abilities of those who have it.
It is not contagious. And, the majority of us who live beyond the age of 80, are very likely to develop the symptoms of one or more forms of the condition.
Main carers of those with dementia, will often find themselves isolated. Isolated from family, as visits diminish, and blame seeking becomes rife. And friends, friends who don't understand, wither away, and that's what they see - the person they once knew - withering away.
Families can become quite nasty - they turn on the carer - the one person who understands, and protects. Protection, in their eyes, becomes confrontation. This perceived confrontation, creates tensions - the carer is often left alone, fighting a classic David and Goliath battle.
To continue the loosely religious cliches, friends and relatives follow in the footsteps of Pontius Pilate, they wash their hands. Often at a time, when the carer and caree needs them most.
For many living with dementia, and those caring for them, the emotional and financial burdens, become almost, or completely, unbearable. Just when help is needed, finances fail, and no-one wants to know - you become a risk. Unfortunately, this risk extends beyond the personal, and even extends as far as the State.
Once dementia takes over, as far as many families are concerned, that person has gone. They're only interested in what they may ultimately inherit. However, that person has not gone. It may be many years before they do. Yet, the stigma of dementia, has already condemned them to the fate of being an individual, who in the eyes of a large number of people, no longer exists.
At whatever stage they find themselves, along the long and arduous road of living with dementia, that person, is still a person. They need to be, and must be, treated with the utmost respect. A respect they deserve, having already completed a long, and often interesting and fascinating, journey through life.
Wednesday 29 May 2013
Sunday 26 May 2013
Why we need to keep talking about dementia...
Dementia Awareness Week may now be over, but the message continues - Talk Dementia. All of us who have been affected by dementia - living with, caring for, and medical, health and care professionals - need to keep spreading the word.
The number of people living with dementia, will continue to rise. Earlier diagnosis, increased longevity, and early onset, will result in a greater number of people needing to know more about dementia. At the moment, many of us, outside the medical, health and care services, and indeed some within these services, are provided with precious little information about the condition. We often have to find this information, for ourselves.
This needs to change, and is changing. Thanks to initiatives, like Dementia Friends, more and more people, are learning about dementia. But, we still have a long way to go, and very little time.
I personally, in my own family, have encountered two of the most common forms of dementia. My Uncle died as a result of Alzheimer's Disease, and my Mum, my Uncle's sister, now has vascular dementia. Thanks to my Uncle's dementia, I learned to recognise some of the signs and symptoms, indicating that a person may have dementia. I later saw some of these in Mum, which eventually led to the diagnosis of her dementia.
Looking back, my Uncle was cared for in a completely different way, from the way in which I now care for my Mum. Fairly early on, he was placed in a nursing home - his wife had decided she could no longer cope with his behaviour, and his wandering. Whilst I have no first hand evidence of the way my Uncle was treated - he was in Blackpool, whilst we were in Sussex - from what I have gathered, much of his behaviour was controlled by medication.
My Mum, by comparison, only has medication to treat the illnesses which caused her dementia, along with Vitamin B Complex tablets. She has, Type 2 Diabetes, Hypertension and Hypothyroidism.
Her behaviour, which is rarely a problem, is not controlled using medication. I try to stimulate her now reduced cognitive abilities, with activities, music and entertainment, along with discussions about whichever subject she chooses. I try to engage with her as much as possible, and, where necessary, play along with what she is saying, or what she wants.
My aim, is to keep her feeling happy, loved and safe.
Although some hospitals and care homes, are now changing the way they treat patients with dementia, there is still much room for improvement. Hospitals can be frightening places for many of us, even more so, for those with dementia. They are easily confused and frightened when confronted with unfamiliar surroundings, and strange people, who don't communicate or engage with them, in a friendly, understanding manner.
For many years, there have been children's wards, and children's nursing and medical teams. A similar approach is needed for patients with dementia. They need people who understand their condition, an environment in which they feel safe, and friendly staff who can communicate, engage and understand their needs.
Through talking about it, we can help medical, health and care professionals, and the wider population, understand dementia. We all need to learn about the journey, which through no choice of their own, people living with dementia, have embarked upon. One day, many of us may have to follow in their footsteps.
We must keep talking dementia - the journey goes on.
The number of people living with dementia, will continue to rise. Earlier diagnosis, increased longevity, and early onset, will result in a greater number of people needing to know more about dementia. At the moment, many of us, outside the medical, health and care services, and indeed some within these services, are provided with precious little information about the condition. We often have to find this information, for ourselves.
This needs to change, and is changing. Thanks to initiatives, like Dementia Friends, more and more people, are learning about dementia. But, we still have a long way to go, and very little time.
I personally, in my own family, have encountered two of the most common forms of dementia. My Uncle died as a result of Alzheimer's Disease, and my Mum, my Uncle's sister, now has vascular dementia. Thanks to my Uncle's dementia, I learned to recognise some of the signs and symptoms, indicating that a person may have dementia. I later saw some of these in Mum, which eventually led to the diagnosis of her dementia.
Looking back, my Uncle was cared for in a completely different way, from the way in which I now care for my Mum. Fairly early on, he was placed in a nursing home - his wife had decided she could no longer cope with his behaviour, and his wandering. Whilst I have no first hand evidence of the way my Uncle was treated - he was in Blackpool, whilst we were in Sussex - from what I have gathered, much of his behaviour was controlled by medication.
My Mum, by comparison, only has medication to treat the illnesses which caused her dementia, along with Vitamin B Complex tablets. She has, Type 2 Diabetes, Hypertension and Hypothyroidism.
Her behaviour, which is rarely a problem, is not controlled using medication. I try to stimulate her now reduced cognitive abilities, with activities, music and entertainment, along with discussions about whichever subject she chooses. I try to engage with her as much as possible, and, where necessary, play along with what she is saying, or what she wants.
My aim, is to keep her feeling happy, loved and safe.
Although some hospitals and care homes, are now changing the way they treat patients with dementia, there is still much room for improvement. Hospitals can be frightening places for many of us, even more so, for those with dementia. They are easily confused and frightened when confronted with unfamiliar surroundings, and strange people, who don't communicate or engage with them, in a friendly, understanding manner.
For many years, there have been children's wards, and children's nursing and medical teams. A similar approach is needed for patients with dementia. They need people who understand their condition, an environment in which they feel safe, and friendly staff who can communicate, engage and understand their needs.
Through talking about it, we can help medical, health and care professionals, and the wider population, understand dementia. We all need to learn about the journey, which through no choice of their own, people living with dementia, have embarked upon. One day, many of us may have to follow in their footsteps.
We must keep talking dementia - the journey goes on.
Friday 24 May 2013
Three weeks - four wards - five moves - is this the way to treat a patient with dementia?
Mum went into hospital at the end of October 2012, with a UTI. She was to spend three weeks there, before coming home again. For a dementia patient, was this a good or bad experience?
Mum was admitted, under the recommendation of an out-of-hours doctor (Harmoni), he organised the admission via A&E. As far as A&E were concerned, she was expected. However, on arrival, we first had to wait fifteen minutes, for a free cubicle.
Next, a four hour wait, for a bed. Mum was severely dehydrated, and drifting in and out of consciousness. During that time, all she was offered was one glass of water, in order to take some Paracetamol.
Eventually, a bed became available, on a ward where she was to spend just one night. She had both a cannula inserted, for a drip, and a catheter. Once she was settled, and on the drip, I made my way home - still very concerned. I had no idea how she would be the following day. Incidentally, the room on the ward had eight beds - only two were occupied.
Prior to my visit the following day, I received a phone call to let me know Mum had been moved to another ward. Such calls, were to prove to be very rare events during her stay, even though she was to be moved several times.
On my first visit, Mum had visibly improved. Yet, in front of me, was a frail elderly little lady, who had no idea why she was there, and just wanted to be nice, kind and polite to everyone. In many of the wards, she became the "baby", as far as the patients were concerned. They looked out for her, and expressed any concerns to me.
One of the wards she was to find herself on, was excellent. A volunteer came in several times a week, and sat with Mum to discuss various aspects of her life. A more able patient sat with Mum at meal times, and helped and encouraged her to eat.
On other wards however, she was left to fend for herself - meals and drinks were provided, and then removed, unfinished, or not consumed at all. As a result of this poor oral intake, she was prescribed nutritional supplements, unfortunately, these would also often go untouched. By comparison, when visiting, I was able to encourage Mum to eat and drink quite successfully.
The worst experience, from my point of view, and already described in an earlier post, was when, on another visit, I discovered that Mum had been moved, again. The day before, she had been in the Acute Stroke Ward (the only bed available), but was moved, after midnight, to another ward. I received no phone call about this, and during my visit the next day, went to the stroke ward, and the bed that Mum had been occupying.
The curtains around the bed were drawn. In the bed, was a little old lady - very similar to Mum - with a doctor checking her responses. The board at the nurses station, still had Mum's name displayed for that bed. Fortunately, after the initial shock, I was able to make out that the lady in the bed, was not Mum. I eventually found out which ward she had been moved to - no thanks to the staff, as I had to stand and wait until they eventually acknowledged my presence, and finally gave me the answer.
As so often happens, some of Mum's patient notes were wrong. For a number of days, Mum's skin risk was recorded on the board by her bed as "Red" high risk. Yet in her notes, there was an "Amber" medium risk card. Why? It took a conscientious nurse to realise a serious mistake had been made, and to correct that mistake. Previous note checks, had failed to notice the mistake.
On another occasion, whilst visiting, Mum needed a bed pan. A nurse was duly called, and confirmed that one would be arranged. Twenty minutes later, still no bed pan. I had to ask a passing nurse to arrange for one, which she did. The first nurse eventually returned, and explained that he had been carrying out a hand-over/take-over. Sorry, but where do the priorities lie?
At other times Mum's bedding was stained as a result of drink and food spillages - more food and drink probably ended up that way, than was actually consumed. The worst staining was as a result of her spilling Fortisip, which left a large hard sticky patch, the bedding remained unchanged throughout the duration of the visit.
She was often cold, and even though I had provided a fleecy shawl for her to wear around her arms and shoulders - I had to put this on her virtually every time I visited. After, that is, I had managed to find it.
As a result of long stays in bed, she developed a sore on one of her heels - this should have been avoidable. It was treated, and a foam heel cup placed over the sore, to protect it. A clear case of ignoring the "prevention is better than cure" principle.
Mum would frequently refuse medication, but little or no effort was made to encourage her to take it. By encourage, I mean a gentle, softly, softly approach to persuade, not to coerce.
Sometimes she would become agitated and shout at staff, and would very occasionally, lash out. This would undoubtedly have been due to the fear and confusion caused by her dementia - and clearly illustrated a lack of understanding when treating patients with dementia.
Needless to say, these incidents were recorded as "patient being difficult" or "patient being aggressive".
When Mum was eventually declared fit for discharge, she still had to endure another seven days in hospital, whilst arrangements were made for equipment to be put in place, to enable her to return home. In other words, seven days of "bed-blocking".
Whilst the Occupational Therapists and Hospital Social Workers were very helpful, it was clear that Mum was no longer receiving anything other than minimal nursing care, just routine medical checks and medication. Physiotherapists made just two attempts to get her to mobilise. She was now just a little old lady who no longer needed to be there. Needless to say, during this time, she was moved yet again.
The day before Mum came home, the Discharge Nurse at least made some effort to improve Mum's appearance. Her hair had become very matted at the back, and the nurse supplied a shampoo cap, so that I could wash her hair, and then, as best I could, tease out the matted hair.
Her nails were filthy, and the skin on her legs, very dry and flaky. No cream had been applied, and no effort had been made to clean her nails. This, fortunately, was all to change, once she returned home.
Even on the day Mum was discharged, there were problems. The air mattress, which only arrived that day, was faulty. This was replaced with another, which also proved to be faulty, but which at least inflated to a degree. The engineer was called out again.
The first Regaining Independence Service carer arrived just before Mum came home, but said she could only stay for half and hour. I had to spend some time on the phone to her supervisor, begging that she be allowed to stay longer, as the hospital would not discharge Mum, if the carer was not there. Fortunately, the carer was able to stay.
When the ambulance finally brought Mum home, we still had the faulty air mattress. I just kept my fingers crossed that no-one noticed - fortunately no-one did. Mum was home, but her ordeal still wasn't over. No sooner had she arrived, than she had to be hoisted on to a chair, so that the mattress could be replaced. All credit to the engineer, who stayed until he was satisfied that the latest one was fully functioning.
At last, Mum was in bed, and comfortable in her own home.
Three weeks, four wards and five moves - is this really the way a patient with dementia should be treated? Somehow, I don't think so.
Mum was admitted, under the recommendation of an out-of-hours doctor (Harmoni), he organised the admission via A&E. As far as A&E were concerned, she was expected. However, on arrival, we first had to wait fifteen minutes, for a free cubicle.
Next, a four hour wait, for a bed. Mum was severely dehydrated, and drifting in and out of consciousness. During that time, all she was offered was one glass of water, in order to take some Paracetamol.
Eventually, a bed became available, on a ward where she was to spend just one night. She had both a cannula inserted, for a drip, and a catheter. Once she was settled, and on the drip, I made my way home - still very concerned. I had no idea how she would be the following day. Incidentally, the room on the ward had eight beds - only two were occupied.
Prior to my visit the following day, I received a phone call to let me know Mum had been moved to another ward. Such calls, were to prove to be very rare events during her stay, even though she was to be moved several times.
On my first visit, Mum had visibly improved. Yet, in front of me, was a frail elderly little lady, who had no idea why she was there, and just wanted to be nice, kind and polite to everyone. In many of the wards, she became the "baby", as far as the patients were concerned. They looked out for her, and expressed any concerns to me.
One of the wards she was to find herself on, was excellent. A volunteer came in several times a week, and sat with Mum to discuss various aspects of her life. A more able patient sat with Mum at meal times, and helped and encouraged her to eat.
On other wards however, she was left to fend for herself - meals and drinks were provided, and then removed, unfinished, or not consumed at all. As a result of this poor oral intake, she was prescribed nutritional supplements, unfortunately, these would also often go untouched. By comparison, when visiting, I was able to encourage Mum to eat and drink quite successfully.
The worst experience, from my point of view, and already described in an earlier post, was when, on another visit, I discovered that Mum had been moved, again. The day before, she had been in the Acute Stroke Ward (the only bed available), but was moved, after midnight, to another ward. I received no phone call about this, and during my visit the next day, went to the stroke ward, and the bed that Mum had been occupying.
The curtains around the bed were drawn. In the bed, was a little old lady - very similar to Mum - with a doctor checking her responses. The board at the nurses station, still had Mum's name displayed for that bed. Fortunately, after the initial shock, I was able to make out that the lady in the bed, was not Mum. I eventually found out which ward she had been moved to - no thanks to the staff, as I had to stand and wait until they eventually acknowledged my presence, and finally gave me the answer.
As so often happens, some of Mum's patient notes were wrong. For a number of days, Mum's skin risk was recorded on the board by her bed as "Red" high risk. Yet in her notes, there was an "Amber" medium risk card. Why? It took a conscientious nurse to realise a serious mistake had been made, and to correct that mistake. Previous note checks, had failed to notice the mistake.
On another occasion, whilst visiting, Mum needed a bed pan. A nurse was duly called, and confirmed that one would be arranged. Twenty minutes later, still no bed pan. I had to ask a passing nurse to arrange for one, which she did. The first nurse eventually returned, and explained that he had been carrying out a hand-over/take-over. Sorry, but where do the priorities lie?
At other times Mum's bedding was stained as a result of drink and food spillages - more food and drink probably ended up that way, than was actually consumed. The worst staining was as a result of her spilling Fortisip, which left a large hard sticky patch, the bedding remained unchanged throughout the duration of the visit.
She was often cold, and even though I had provided a fleecy shawl for her to wear around her arms and shoulders - I had to put this on her virtually every time I visited. After, that is, I had managed to find it.
As a result of long stays in bed, she developed a sore on one of her heels - this should have been avoidable. It was treated, and a foam heel cup placed over the sore, to protect it. A clear case of ignoring the "prevention is better than cure" principle.
Mum would frequently refuse medication, but little or no effort was made to encourage her to take it. By encourage, I mean a gentle, softly, softly approach to persuade, not to coerce.
Sometimes she would become agitated and shout at staff, and would very occasionally, lash out. This would undoubtedly have been due to the fear and confusion caused by her dementia - and clearly illustrated a lack of understanding when treating patients with dementia.
Needless to say, these incidents were recorded as "patient being difficult" or "patient being aggressive".
When Mum was eventually declared fit for discharge, she still had to endure another seven days in hospital, whilst arrangements were made for equipment to be put in place, to enable her to return home. In other words, seven days of "bed-blocking".
Whilst the Occupational Therapists and Hospital Social Workers were very helpful, it was clear that Mum was no longer receiving anything other than minimal nursing care, just routine medical checks and medication. Physiotherapists made just two attempts to get her to mobilise. She was now just a little old lady who no longer needed to be there. Needless to say, during this time, she was moved yet again.
The day before Mum came home, the Discharge Nurse at least made some effort to improve Mum's appearance. Her hair had become very matted at the back, and the nurse supplied a shampoo cap, so that I could wash her hair, and then, as best I could, tease out the matted hair.
Her nails were filthy, and the skin on her legs, very dry and flaky. No cream had been applied, and no effort had been made to clean her nails. This, fortunately, was all to change, once she returned home.
Even on the day Mum was discharged, there were problems. The air mattress, which only arrived that day, was faulty. This was replaced with another, which also proved to be faulty, but which at least inflated to a degree. The engineer was called out again.
The first Regaining Independence Service carer arrived just before Mum came home, but said she could only stay for half and hour. I had to spend some time on the phone to her supervisor, begging that she be allowed to stay longer, as the hospital would not discharge Mum, if the carer was not there. Fortunately, the carer was able to stay.
When the ambulance finally brought Mum home, we still had the faulty air mattress. I just kept my fingers crossed that no-one noticed - fortunately no-one did. Mum was home, but her ordeal still wasn't over. No sooner had she arrived, than she had to be hoisted on to a chair, so that the mattress could be replaced. All credit to the engineer, who stayed until he was satisfied that the latest one was fully functioning.
At last, Mum was in bed, and comfortable in her own home.
Three weeks, four wards and five moves - is this really the way a patient with dementia should be treated? Somehow, I don't think so.
Wednesday 22 May 2013
Dementia - the darker side
Many people living with dementia, can live quite happily - but, there are darker sides to the condition.
Paranoia, guilt, yearnings, accusations, mistrust, stubbornness, disbelief, confabulation, and very occasionally, unintentional (due to diminished responsibility) killing.
Dementia causes a persons brain to disconnect. What was acceptable becomes unknown. Behaviour becomes unpredictable. The difference between what is, and what is not acceptable, becomes blurred.
My Uncle, who had Alzheimer's, had no issue, when in a nursing home, with dropping his trousers and exposing himself to everyone around. Apparently, something he used to do, as a child. Some can become very obsessed, sexually.
When it comes to money, my Mum, trusts no-one. She wants to know exactly what has happened to her money, and how it's been spent. She was always meticulous with her bank accounts, and is almost manically obsessed with money.
These are just some of the extremes, yet dementia presents other, more mundane problems.
There are times, no matter how hard you try, Mum or Dad will tell you that eating and drinking is not essential. For a care giver, this can be almost unbearable. You know they need to eat and drink, yet they refuse, and tell you, "you are talking rubbish".
As a carer for a loved one, this is incredibly difficult to handle. The more you tell them they need to eat or drink, the more stubborn they can become. Patience, and gentle persuasion, is the order of the day. Yet, it is so difficult to maintain. You care. You know they need to eat and drink. You become angry and frustrated. Their response is to become more stubborn still. Walk away. Stay calm. Reason.
Go back, discuss, and gently, not forcibly, try to get them to understand. Sometimes, it is better to leave it for half an hour, or more. They may have calmed, may have forgotten, and may have become more receptive. Try again - calmly. Don't force or provoke. If they appear receptive, build on it. If they're still belligerent, leave it. You may not think it's right, but they have a choice, to which they're entitled. Forcing them to do something is abuse, and needs to be avoided at all costs.
If you're a main carer, you will undoubtedly bear the full barrage of insults and accusations. Whatever the problem, it will be your fault. They'll still love you, but will also hold you responsible for anything that has gone wrong. Accept it. Don't fight it.
Yearning for the past, is common. They want to go back to a time when they remember love, happiness and security. Don't resist. Play along. This can be difficult at first. Just remember the memories of the times when you were a child. That, is what they're yearning for.
DANGER - there have been a few (very few) isolated incidents, when dementia has led to a killing. This has often been due to paranoia, mistrust and irrational jealousy. Whilst these conditions and emotions are not uncommon, it is essential that they are understood. Especially when a spouse, is caring for a spouse.
Most people living with dementia, can continue to lead a perfectly normal life. Awareness of the darker side, can help those living with dementia, and especially those caring for them.
Paranoia, guilt, yearnings, accusations, mistrust, stubbornness, disbelief, confabulation, and very occasionally, unintentional (due to diminished responsibility) killing.
Dementia causes a persons brain to disconnect. What was acceptable becomes unknown. Behaviour becomes unpredictable. The difference between what is, and what is not acceptable, becomes blurred.
My Uncle, who had Alzheimer's, had no issue, when in a nursing home, with dropping his trousers and exposing himself to everyone around. Apparently, something he used to do, as a child. Some can become very obsessed, sexually.
When it comes to money, my Mum, trusts no-one. She wants to know exactly what has happened to her money, and how it's been spent. She was always meticulous with her bank accounts, and is almost manically obsessed with money.
These are just some of the extremes, yet dementia presents other, more mundane problems.
Eating and drinking
There are times, no matter how hard you try, Mum or Dad will tell you that eating and drinking is not essential. For a care giver, this can be almost unbearable. You know they need to eat and drink, yet they refuse, and tell you, "you are talking rubbish".
As a carer for a loved one, this is incredibly difficult to handle. The more you tell them they need to eat or drink, the more stubborn they can become. Patience, and gentle persuasion, is the order of the day. Yet, it is so difficult to maintain. You care. You know they need to eat and drink. You become angry and frustrated. Their response is to become more stubborn still. Walk away. Stay calm. Reason.
Go back, discuss, and gently, not forcibly, try to get them to understand. Sometimes, it is better to leave it for half an hour, or more. They may have calmed, may have forgotten, and may have become more receptive. Try again - calmly. Don't force or provoke. If they appear receptive, build on it. If they're still belligerent, leave it. You may not think it's right, but they have a choice, to which they're entitled. Forcing them to do something is abuse, and needs to be avoided at all costs.
If you're a main carer, you will undoubtedly bear the full barrage of insults and accusations. Whatever the problem, it will be your fault. They'll still love you, but will also hold you responsible for anything that has gone wrong. Accept it. Don't fight it.
Yearning for the past, is common. They want to go back to a time when they remember love, happiness and security. Don't resist. Play along. This can be difficult at first. Just remember the memories of the times when you were a child. That, is what they're yearning for.
DANGER - there have been a few (very few) isolated incidents, when dementia has led to a killing. This has often been due to paranoia, mistrust and irrational jealousy. Whilst these conditions and emotions are not uncommon, it is essential that they are understood. Especially when a spouse, is caring for a spouse.
Most people living with dementia, can continue to lead a perfectly normal life. Awareness of the darker side, can help those living with dementia, and especially those caring for them.
Sunday 19 May 2013
Dementia - change the name, and change the game...
For far too long, there has been too much of a stigma surrounding the word "dementia". There is still the opportunity for a radical name change - to remove the stigma of dementia, and enable communities to embrace those who have it, so that those with dementia, can once more become widely accepted as important and integral to our society.
A similar exercise, surrounding those with cerebral palsy - in the past referred to as "spastics" in the UK - resulted in the Spastics Society changing its name to Scope, in 1994 - the word spastic then gradually fell out of use, and cerebral palsy became the accepted term.
If society is going to successfully accept that dementia exists, and that those with it can still live a happy and contented life, and indeed continue to integrate with society - such a similar name change is well overdue.
Many people are aware of Alzheimer's (even if they don't know what it is), and Alzheimer's alone, is but one of the many causes of dementia. Many organisations around the world already use the name Alzheimer's, yet also include all other forms of dementia, as part of their agenda.
Perhaps the name Alzheimer's, being so well known, could become an "umbrella" name for all forms of dementia (in many ways it already is). Unfortunately, Alzheimer's also suffers from the same stigmas as dementia.
With an umbrella name (X), the various forms of dementia could be re-named - X Vascular, X Lewy Body, X Pick's, X Early Onset, X Proteopathic (true Alzheimer's) etc.
The name Alzheimer's, from a design and PR point of view, is already well known, and has well established and associated colours and images. "Forget-me-not", is both a phrase, along with related images (forget-me-nots and purple ribbons), and colours (blue and purple), already in use, and widely known.
This is but one proposal to try to end the stigma of dementia. There may well be other solutions, but the brief remains the same - "Dementia - change the name, and change the game"...
A similar exercise, surrounding those with cerebral palsy - in the past referred to as "spastics" in the UK - resulted in the Spastics Society changing its name to Scope, in 1994 - the word spastic then gradually fell out of use, and cerebral palsy became the accepted term.
If society is going to successfully accept that dementia exists, and that those with it can still live a happy and contented life, and indeed continue to integrate with society - such a similar name change is well overdue.
Many people are aware of Alzheimer's (even if they don't know what it is), and Alzheimer's alone, is but one of the many causes of dementia. Many organisations around the world already use the name Alzheimer's, yet also include all other forms of dementia, as part of their agenda.
Perhaps the name Alzheimer's, being so well known, could become an "umbrella" name for all forms of dementia (in many ways it already is). Unfortunately, Alzheimer's also suffers from the same stigmas as dementia.
With an umbrella name (X), the various forms of dementia could be re-named - X Vascular, X Lewy Body, X Pick's, X Early Onset, X Proteopathic (true Alzheimer's) etc.
The name Alzheimer's, from a design and PR point of view, is already well known, and has well established and associated colours and images. "Forget-me-not", is both a phrase, along with related images (forget-me-nots and purple ribbons), and colours (blue and purple), already in use, and widely known.
This is but one proposal to try to end the stigma of dementia. There may well be other solutions, but the brief remains the same - "Dementia - change the name, and change the game"...
Dementia - a time to "SHOUT" about it - and a time to change its name...
There are still far too many people who know little, if anything, about dementia. As soon as the word "dementia" is mentioned, they change the subject. Yet, these are the very people who will ultimately, either have a family member with dementia, or develop it themselves. How will they, and their families, deal with it, then?
I don't wish to go into medical details about dementia, that is for the experts, one of which I'm not. I am a carer for my wonderful Mum, who has vascular dementia. She may be affected by the illnesses she has, diabetes, hypertension and hypothyroidism. However, she lives with dementia - for the most part, very happily, in her own little world that exists in her own mind, made up of past experiences and memories, and the love and kindness she receives now.
Dementia is not a disease! It is a combination of other factors and illnesses, that cause certain parts of the brain to cease functioning correctly. With help, knowledge and understanding, people living with dementia, can continue to lead a happy and contented life. Unfortunately, such help, knowledge and understanding is seriously lacking, throughout our society.
It is lacking in hospitals, care homes, GP's surgeries, work places, shops, and the wider community. If you tell someone your Mum has dementia, the first thing they are likely to say is, "Oh, I am sorry". Why? Why be sorry? There's is currently nothing that can be done about it. My Mum is still a person, she still has a personality. Yes, things are more difficult for her to do now, and this will only worsen over time. But, she still deserves the respect and kindness we all deserve.
My Mum is not, as the name dementia would imply, demented! A new term is needed. In the past it was referred to by the even more demeaning name, senile dementia. Senile was dropped - it is now time to drop dementia. Demeaning names for other conditions, have been dropped in favour of friendlier, more accurately descriptive names - from a designer's point of view, dementia needs a new, friendly, person centred brand.
I don't wish to go into medical details about dementia, that is for the experts, one of which I'm not. I am a carer for my wonderful Mum, who has vascular dementia. She may be affected by the illnesses she has, diabetes, hypertension and hypothyroidism. However, she lives with dementia - for the most part, very happily, in her own little world that exists in her own mind, made up of past experiences and memories, and the love and kindness she receives now.
Dementia is not a disease! It is a combination of other factors and illnesses, that cause certain parts of the brain to cease functioning correctly. With help, knowledge and understanding, people living with dementia, can continue to lead a happy and contented life. Unfortunately, such help, knowledge and understanding is seriously lacking, throughout our society.
It is lacking in hospitals, care homes, GP's surgeries, work places, shops, and the wider community. If you tell someone your Mum has dementia, the first thing they are likely to say is, "Oh, I am sorry". Why? Why be sorry? There's is currently nothing that can be done about it. My Mum is still a person, she still has a personality. Yes, things are more difficult for her to do now, and this will only worsen over time. But, she still deserves the respect and kindness we all deserve.
My Mum is not, as the name dementia would imply, demented! A new term is needed. In the past it was referred to by the even more demeaning name, senile dementia. Senile was dropped - it is now time to drop dementia. Demeaning names for other conditions, have been dropped in favour of friendlier, more accurately descriptive names - from a designer's point of view, dementia needs a new, friendly, person centred brand.
Friday 17 May 2013
Just a small thought about caring for someone with dementia...
I wrote this in response to a post on Facebook, I'd like to share it here...
When I tweeted it I used this header:
Don't think about what you can't do - think about what you have done
Always think about what you have done - don't think about what you could have done, if there is something you can do - do it! Remember, it is only you that will feel guilty about what you haven't done. The person with dementia, the one you care for, will not. Nor, will they ultimately hold it against you. Love and security is what they need, that is what they will remember.
The post I replied to was headed
When I tweeted it I used this header:
Don't think about what you can't do - think about what you have done
Always think about what you have done - don't think about what you could have done, if there is something you can do - do it! Remember, it is only you that will feel guilty about what you haven't done. The person with dementia, the one you care for, will not. Nor, will they ultimately hold it against you. Love and security is what they need, that is what they will remember.
Thursday 16 May 2013
Can we truly claim to be a wheelchair friendly society?
It has only been around six months since Mum needed to use a wheelchair, or rather needed a wheelchair, with an attendant (me), to enable her to get out and about. During that time, she has only been out a few times, thanks to the winter weather.
Now, with the weather improving, it should be possible to take her out more often. However, the few times she has been out, has shown how much still needs to be done, to help those in wheelchairs.
Whilst access to some shops is good, others still have much to do. Even if wheelchair access is possible, one of the first hurdles encountered is doors. Aside from automated doors, or those with push button access, glazed shop front doors are often heavy and difficult to open, for those in wheelchairs. Self-closing devices, can make the situation even worse. An attendant propelled wheelchair is difficult enough to manoeuvre through such doors, and would be even more difficult, for those who self-propel.
Sometimes access involves the use of inadequate, flimsy, and often steep, ramps. These are a seriously poor attempt to comply (in some cases not) with disabled access regulations, and when combined with a door that needs to be opened by the user, can even prove to be dangerous.
Most major retailers generally provide sufficient width between shelving and displays to enable wheelchair access. However, there are often temporary displays, special offer containers, or even shelf stacking cages, that intrude into the aisles, creating pinch points. These restrict access, as there may only be sufficient room for one trolley, let alone a wheelchair.
The attitude of other customers towards wheelchair users, frequently results in the disabled person being forced to "yield" or "give way" to the oncoming trolley traffic - hardly good practice, when it comes to avoiding discrimination. Admittedly, the lack of information about the realities of living with a disability, available to the general public, also has a role to play - and the sooner such information is disseminated, the better.
The gap between till units at checkouts is often difficult for wheelchair users to negotiate, and even if there are a wheelchair friendly checkouts, these are often unattended during quieter periods. The very periods that wheelchair users will often choose to use, as there are fewer people in the shop to impede on their shopping experience.
Smaller retail outlets, often have insufficient space for wheelchairs, on their premises. So, even if a disabled person can gain access to the premises, much of what is inside, is denied to them.
Over the years, many pedestrian walkways have been "dug up" for the installation or renewal of various services. However, the "make good" requirements imposed on contractors, are rarely sufficient to ensure smooth problem free surfaces for wheelchair users.
Kerb drops with textured surfaces for the blind or partially sighted, can also cause problems. Whilst providing a tactile indicator for those who are unable to see, certain designs with ruts, can deflect the small front wheels of a wheelchair, and those with small bumps, can prove very uncomfortable for the person in the wheelchair, especially those who through illness or frailty, are more sensitive to the effects of riding over such bumps.
Roads and road surfaces are often very wheelchair unfriendly. Too rough, potholed, insufficient crossing points with kerb drops, no central refuge, crossing points too close to blind corners, or junctions - in fact, so many problems, there too many mention. There are of course many safe crossing points, but even some of these can be let down by the road surface itself.
Street furniture is often poorly located, causing pinch points and restricting access, in other cases, pedestrian walkways are just too narrow. Raised flower beds may look attractive, but these too can cause problems, either forcing the wheelchair user to divert away from their original course, or once again creating even more pinch points.
Rail crossings pose a very serious hazard. The gap needed for the wheels of a train, between the level areas of the crossing, can easily trap a front wheel of a wheelchair, and if the jolt is sufficient enough, can even eject the person from the chair, unless they are strapped in. Whilst, a speedy recovery may be possible for an attendant propelled wheelchair, the same may not be the case for a self-propelled user. There is also the real possibility of injuries being sustained.
It should not be too difficult to design and provide a self-retracting surface, within the gap for train wheels, to ensure that rail crossings are safer for wheelchair users.
An unfortunate combination of several of the above, resulted in the death of an elderly, yet able-bodied, gentleman close to where I live. He was crossing a road, close to a junction with another road. The unmarked, kerb dropped, pedestrian crossing, was outside the train station. Next to which, was a road/rail crossing, alongside a footbridge at the station, over the tracks. This created a blind spot, just before the junction and pedestrian crossing.
A car came over the rail crossing, turned into the road with the pedestrian crossing, and collided with the gentleman as he crossed. He was airlifted to hospital, but died soon after, as a result of his injuries.
Such an accident could just as easily have happened to someone in a wheelchair.
Many establishments providing a service to the public, are required under the Disability Discrimination Act, to provide certain facilities for the disabled, and many go above and beyond that requirement. The Act requires that all new builds and full refurbishments, provide suitable access and facilities for the disabled.
However, existing buildings need only carry out what can be considered to be reasonable, dependent upon the size and turnover of the business. This is often used as an excuse for not having disabled toilet facilities. There is an argument though, where, for example, a small restaurant, with both male and female facilities, could combine these into one larger unisex facility, designed for use by the disabled, as well as other customers.
Some restaurants and hostelries are both family and wheelchair friendly, providing both baby changing and wheelchair accessible toilet facilities. These hostelries also tend to have good level-entry access. Many however do not, having steps or door thresholds that deny access to wheelchairs, and offering no other facilities for the disabled.
Some restaurants provide good access, yet many, understandably, base their prices on the number of covers they can cater for, and cram in as many chairs and tables as possible, significantly restricting wheelchair access.
Clearly there is still much to be done, before we can really claim to be a truly friendly society for those living with a disability. These members of our society are still denied access to far too many experiences, the more able bodied of us, are able to enjoy.
Time for change...
Now, with the weather improving, it should be possible to take her out more often. However, the few times she has been out, has shown how much still needs to be done, to help those in wheelchairs.
Retail outlets
Whilst access to some shops is good, others still have much to do. Even if wheelchair access is possible, one of the first hurdles encountered is doors. Aside from automated doors, or those with push button access, glazed shop front doors are often heavy and difficult to open, for those in wheelchairs. Self-closing devices, can make the situation even worse. An attendant propelled wheelchair is difficult enough to manoeuvre through such doors, and would be even more difficult, for those who self-propel.
Sometimes access involves the use of inadequate, flimsy, and often steep, ramps. These are a seriously poor attempt to comply (in some cases not) with disabled access regulations, and when combined with a door that needs to be opened by the user, can even prove to be dangerous.
Width of aisles
Most major retailers generally provide sufficient width between shelving and displays to enable wheelchair access. However, there are often temporary displays, special offer containers, or even shelf stacking cages, that intrude into the aisles, creating pinch points. These restrict access, as there may only be sufficient room for one trolley, let alone a wheelchair.
The attitude of other customers towards wheelchair users, frequently results in the disabled person being forced to "yield" or "give way" to the oncoming trolley traffic - hardly good practice, when it comes to avoiding discrimination. Admittedly, the lack of information about the realities of living with a disability, available to the general public, also has a role to play - and the sooner such information is disseminated, the better.
Checkouts
The gap between till units at checkouts is often difficult for wheelchair users to negotiate, and even if there are a wheelchair friendly checkouts, these are often unattended during quieter periods. The very periods that wheelchair users will often choose to use, as there are fewer people in the shop to impede on their shopping experience.
Smaller retail outlets, often have insufficient space for wheelchairs, on their premises. So, even if a disabled person can gain access to the premises, much of what is inside, is denied to them.
On the street
Over the years, many pedestrian walkways have been "dug up" for the installation or renewal of various services. However, the "make good" requirements imposed on contractors, are rarely sufficient to ensure smooth problem free surfaces for wheelchair users.
Kerb drops with textured surfaces for the blind or partially sighted, can also cause problems. Whilst providing a tactile indicator for those who are unable to see, certain designs with ruts, can deflect the small front wheels of a wheelchair, and those with small bumps, can prove very uncomfortable for the person in the wheelchair, especially those who through illness or frailty, are more sensitive to the effects of riding over such bumps.
Roads and road surfaces are often very wheelchair unfriendly. Too rough, potholed, insufficient crossing points with kerb drops, no central refuge, crossing points too close to blind corners, or junctions - in fact, so many problems, there too many mention. There are of course many safe crossing points, but even some of these can be let down by the road surface itself.
Street furniture is often poorly located, causing pinch points and restricting access, in other cases, pedestrian walkways are just too narrow. Raised flower beds may look attractive, but these too can cause problems, either forcing the wheelchair user to divert away from their original course, or once again creating even more pinch points.
Rail crossings
Rail crossings pose a very serious hazard. The gap needed for the wheels of a train, between the level areas of the crossing, can easily trap a front wheel of a wheelchair, and if the jolt is sufficient enough, can even eject the person from the chair, unless they are strapped in. Whilst, a speedy recovery may be possible for an attendant propelled wheelchair, the same may not be the case for a self-propelled user. There is also the real possibility of injuries being sustained.
It should not be too difficult to design and provide a self-retracting surface, within the gap for train wheels, to ensure that rail crossings are safer for wheelchair users.
When a combination of situations can prove fatal
An unfortunate combination of several of the above, resulted in the death of an elderly, yet able-bodied, gentleman close to where I live. He was crossing a road, close to a junction with another road. The unmarked, kerb dropped, pedestrian crossing, was outside the train station. Next to which, was a road/rail crossing, alongside a footbridge at the station, over the tracks. This created a blind spot, just before the junction and pedestrian crossing.
A car came over the rail crossing, turned into the road with the pedestrian crossing, and collided with the gentleman as he crossed. He was airlifted to hospital, but died soon after, as a result of his injuries.
Such an accident could just as easily have happened to someone in a wheelchair.
Hotels, restaurants and hostelries
Many establishments providing a service to the public, are required under the Disability Discrimination Act, to provide certain facilities for the disabled, and many go above and beyond that requirement. The Act requires that all new builds and full refurbishments, provide suitable access and facilities for the disabled.
However, existing buildings need only carry out what can be considered to be reasonable, dependent upon the size and turnover of the business. This is often used as an excuse for not having disabled toilet facilities. There is an argument though, where, for example, a small restaurant, with both male and female facilities, could combine these into one larger unisex facility, designed for use by the disabled, as well as other customers.
Some restaurants and hostelries are both family and wheelchair friendly, providing both baby changing and wheelchair accessible toilet facilities. These hostelries also tend to have good level-entry access. Many however do not, having steps or door thresholds that deny access to wheelchairs, and offering no other facilities for the disabled.
Some restaurants provide good access, yet many, understandably, base their prices on the number of covers they can cater for, and cram in as many chairs and tables as possible, significantly restricting wheelchair access.
Clearly there is still much to be done, before we can really claim to be a truly friendly society for those living with a disability. These members of our society are still denied access to far too many experiences, the more able bodied of us, are able to enjoy.
Time for change...
Wednesday 15 May 2013
A year in the life of a carer for a loved one living with dementia
My life changed at the beginning of 2012. Prior to that, although I was even then a carer, albeit part-time, I was still able to work and socialise. However, as a result of a number of incidents late in 2011, it became increasingly clear, that work and caring was no longer an option.
Mum had started to wander. Fortunately, on the few occasions she did, she did not venture very far. The worst was when she was found wandering outside the apartment block where we then lived, freezing cold, and having no idea where she was, and how to get home. She was discovered by a salesman from a nearby bathroom showroom, who knew she lived in the block, and helped her to the Caretaker's apartment, where she was given a hot drink and then taken back to our apartment.
The Caretaker rang me on my mobile. Unfortunately, the company I was working for had a strict policy on mobile phones, so, although the phone was on silent but vibrate, I was not able to answer the call. Shortly after, I received a text informing me I had a voice mail. When I was finally able to use my phone, I discovered, to my horror, what had happened.
After contacting the Caretaker, I was at least assured that Mum was now safe, and back home.
Clearly, I had to make a life-changing decision. This was all just before Christmas, 2011.
After Christmas was over, I handed in my notice, and ceased full-time employment in January 2012.
Even though I was now a full-time carer, I still didn't consider myself as such, and received no outside help or support. I still "pretended" I would be able to find some kind of work that would also allow me to continue caring. It was also becoming clear that Mum was starting to have difficulties with stairs. As we then lived on the second floor of a block with no lifts - finding alternative accommodation became imperative.
We moved to our new apartment at the beginning of August 2012. It is in a small block of four, on the ground floor, level access throughout, wheelchair friendly doors, and complete with a wet room.
I managed most of the move myself, with the help of a few friends. Everything, so far, seemed fine.
At the end of September, Mum was taken into hospital with a suspected TIA. She was kept in for a few days for tests and assessments, had some of her medication changed, and then discharged.
There was one further wandering incident, early in the morning, whilst I was still asleep. Fortunately, the local postman (who lives just across the way), was on his rounds, and brought her back. It was the first, and probably the last time, that Mum would be delivered by the Royal Mail!
Mum's condition continued to change (I suppose deteriorate would be more appropriate - but that is a little negative), and her mobility began to diminish. As the result of a number of symptoms, and complaints from Mum, I called the local surgery several times, asking for a Doctor to come and see her.
What happened next, is almost unbelievable! Yes, a Doctor did come to see Mum - and as a result of her complaining about a pain in her shoulder, probably caused by a number of near falls - she was prescribed with painkillers. Also, because of the number of calls I had made to the surgery, the Dementia Crisis Team was called in. This was not for Mum, but for me!
They arranged for a carer to come in to see Mum first thing in the morning. A few days later, when the first carer arrived, Mum's condition had worsened - to the extent that she'd now spent the last couple of days, confined to bed.
The carer was shocked by Mum's condition, and immediate arrangements were made for a Doctor to come and see her. The Admission Avoidance Team was also contacted, and they (two nurses) arrived first. They both agreed that Mum had a UTI, and was severely dehydrated - this of course, should have been diagnosed by the GP, who had visited just two days earlier!
When the Doctor arrived, he also agreed with the diagnosis of a UTI. Mum was once again admitted to hospital. She was put on a drip, and had a catheter inserted. I was now very concerned, even frightened, about what might happen next.
During her stay in hospital, she was moved between a number of wards. Some of which were excellent, some less so. She, of course, had no idea why she had been moved - nor for that matter, apart from one occasion, did I.
The worst experience, from my point of view, was when visiting one day, I went straight to the ward Mum had been in the previous day, only to find the curtains drawn around the bed she had been occupying. Panic mode set in! I took a quick look behind the curtains, in the bed was a little old lady, being attended to by a Doctor, and clearly unresponsive. This, was the stroke ward. Fortunately, I saw enough to establish that that little old lady, was not Mum.
Mum had been moved to another ward - after midnight - to free up the bed for the lady who had had the stroke. No-one took the time to call me, and let me know.
Mum's stay in hospital would last three weeks, during which time further tests and assessments would be carried out. Medication was revised once more, and arrangements put in place for her to return home.
Those arrangements involved a community bed (hospital bed) with air mattress, hoists, commode and wheelchair, along with an initial rehabilitation care package, lasting six weeks. This would then be replaced by a continuing care package from another agency. I was also given training, albeit briefly, on the use of the hoists.
Her discharge was delayed, thanks to the District Nurse team failing to order an air mattress in time. In fact, they had claimed to have placed the order, but no such order appeared on the system. A system also used by the Occupational Therapists planning Mum's discharge. An urgent instruction was issued for the order to be made for next day delivery.
Once all this was in place, Mum was returned home. I breathed a small sigh of relief.
Her stay in hospital, whilst helping to assess Mum's condition, did not help her in other ways. Only one ward provided the care and attention required by a dementia patient. In the others, she was effectively left to fend for herself when it came to eating and drinking. If she refused to eat or drink, or take her medication, this was recorded as "patient being difficult". If she got angry, or lashed out, because she was frightened and confused, this was recorded as "aggressive behaviour".
Once home, I, along with the agency carers, was able to provide the more understanding, patient centred care needed.
My life had now completely changed. Working was definitely out of the question. I now had to put in place claims for Attendance Allowance (higher rate), Carer's Allowance and Income Support.
Whilst at home, Mum began to improve significantly. Her skin was creamed everyday. The once very dry and flaking skin on her legs, as a result of her UTI, dehydration, and stay in hospital, became smooth and soft, once more. Encouraging her to eat and drink was difficult to start with, but this improved slowly over time. Initially, I had to spoon feed her, but she is now able to do this for herself - with the aid of items originally designed for children, including drip-free sip cups, spoons and feeding bowls. Medication is taken, when required, with no significant problems.
Mum suffers continence issues, and needs to wear pads at all times. These are thankfully supplied as an integral part of her care package.
She spends most days in bed, but with the summer now approaching, the plan is to get her into the wheelchair more often, and take her outside. Living close to the sea, there is an easily accessible path right next to the beach, and a beach front cafe within easy walking (and wheeling) distance.
In her room, she has plain, but brightly coloured bedding. A TV, a DVD player, an activity box, a cuddly toy box, and a memory box. There are old photos on the wall, including pictures of her Mother (whom she often wants to visit), my late Father, a much loved Golden Retriever we once had, Mum herself, when younger, and me.
I always make sure she has fresh flowers, which she loves, and there a three flower pictures on another wall. Her favourite items are two baby dolls. She loves them and talks to them as if they are real. (Doll therapy - a subject I will cover later).
All of these things help her to keep calm, and feel happy and secure.
My days now follow a pretty set routine. Up in the morning to make us both a cup of tea. Then helping the first carer of the day, wash Mum and change her clothing and pads.
On the subject of clothing, before Mum returned from hospital, I found three polyester kaftans, that she had bought a number of years earlier. These have proven to be perfect, as both a substitute for a nightdress and as day clothing. Being very loose fitting, they are easy to put on and take off.
Next, it's breakfast and medication, along with another cup of tea. Off to check emails, Twitter, Facebook, a carers' forum etc. Then the next call from the carers. This visit, is more often than not simple and speedy. Check Mum's pad - change it if needed, cream Mum's arms and legs, and face if she wants it. Commode, if needed.
Then lunch. In the winter months, this would often be soups, specifically those with a higher fibre content. Now, with warmer weather, it tends to be sandwiches, these nearly always contain salad leaves, along with other fillings, using wholemeal bread.
Any washing that needs doing, is placed in the washing machine, including her absorbent bed mats. Then, subsequently, into the tumble dryer (low heat for the bed mats).
In the afternoon, I normally get a little time to go out to the shops (only around seven minutes walking distance away), to buy any essentials, and have a short break for myself.
At around four in the afternoon, the next carer arrives. Similar routine to lunch time, unless Mum needs the commode - which rarely happens when the carers are around.
Dinner comes next, this is usually either spoon friendly food, or finger food.
At around eight in the evening, the last carer calls. Again, a similar routine to lunch and evening, check pad, change if needed, settle for the night.
On the subject of the commode, Mum still has no routine. So such a need can occur at any time. Being in bed for the most part, Mum's appetite, whilst now healthy, means she does not need to eat as much as she would if she was still mobile. So bowel movements only tend to occur every few days - until yesterday that is, when suddenly it was two days in a row.
Need for the commode can occur at any time, day or night, and invariably, as I have already mentioned, rarely occurs when the carers are around. Fortunately, Mum is quite small, and I am able to carry out all the related duties, on my own. It does however mean, that I need to be around pretty much all of the time.
Mum's demeanour is, for the most part, happy and friendly - it is my intention to try to keep it that way. Her carers very much enjoy the time they spend with her, and look forward to seeing her - which can only be good for all concerned, Mum most of all.
Socialising is now out of the question, unless people visit us. This of course, hardly ever happens. The stigma of dementia, results in many, including family, who would have visited before, now staying away. I am sure if I asked them to visit, they would come up with a multitude of excuses as to why such a visit would not be possible, "at the moment".
Without modern technology, and social networks, I would now be completely isolated. This would very much have been the case for carers, in the past. Were it not for my blogs, the likes of Twitter and Facebook, and more importantly, the carers' forum, of which I am a member, my life would be very lonely indeed.
A great big thank you, to all of you out there, who have helped me to maintain my sanity, and find at least a little virtual respite, from my demanding role as a carer.
Most important of all, thanks go to Naboo, my little Jenday Conure (small parrot), who provides endless hours of entertainment, and loads of affection.
As a footnote, I would add, as a result of an initiative started by someone who has dementia, a regular on both Twitter and the carers' forum, I contacted my local NHS Trust. In the next couple of weeks, their Dementia Nurse Specialist will be visiting us, to discuss their initiative surrounding care for dementia patients, in their hospitals. And, to discuss any suggestions I may have, and any help I can give.
Mum had started to wander. Fortunately, on the few occasions she did, she did not venture very far. The worst was when she was found wandering outside the apartment block where we then lived, freezing cold, and having no idea where she was, and how to get home. She was discovered by a salesman from a nearby bathroom showroom, who knew she lived in the block, and helped her to the Caretaker's apartment, where she was given a hot drink and then taken back to our apartment.
The Caretaker rang me on my mobile. Unfortunately, the company I was working for had a strict policy on mobile phones, so, although the phone was on silent but vibrate, I was not able to answer the call. Shortly after, I received a text informing me I had a voice mail. When I was finally able to use my phone, I discovered, to my horror, what had happened.
After contacting the Caretaker, I was at least assured that Mum was now safe, and back home.
Clearly, I had to make a life-changing decision. This was all just before Christmas, 2011.
After Christmas was over, I handed in my notice, and ceased full-time employment in January 2012.
Even though I was now a full-time carer, I still didn't consider myself as such, and received no outside help or support. I still "pretended" I would be able to find some kind of work that would also allow me to continue caring. It was also becoming clear that Mum was starting to have difficulties with stairs. As we then lived on the second floor of a block with no lifts - finding alternative accommodation became imperative.
We moved to our new apartment at the beginning of August 2012. It is in a small block of four, on the ground floor, level access throughout, wheelchair friendly doors, and complete with a wet room.
I managed most of the move myself, with the help of a few friends. Everything, so far, seemed fine.
At the end of September, Mum was taken into hospital with a suspected TIA. She was kept in for a few days for tests and assessments, had some of her medication changed, and then discharged.
There was one further wandering incident, early in the morning, whilst I was still asleep. Fortunately, the local postman (who lives just across the way), was on his rounds, and brought her back. It was the first, and probably the last time, that Mum would be delivered by the Royal Mail!
Mum's condition continued to change (I suppose deteriorate would be more appropriate - but that is a little negative), and her mobility began to diminish. As the result of a number of symptoms, and complaints from Mum, I called the local surgery several times, asking for a Doctor to come and see her.
What happened next, is almost unbelievable! Yes, a Doctor did come to see Mum - and as a result of her complaining about a pain in her shoulder, probably caused by a number of near falls - she was prescribed with painkillers. Also, because of the number of calls I had made to the surgery, the Dementia Crisis Team was called in. This was not for Mum, but for me!
They arranged for a carer to come in to see Mum first thing in the morning. A few days later, when the first carer arrived, Mum's condition had worsened - to the extent that she'd now spent the last couple of days, confined to bed.
The carer was shocked by Mum's condition, and immediate arrangements were made for a Doctor to come and see her. The Admission Avoidance Team was also contacted, and they (two nurses) arrived first. They both agreed that Mum had a UTI, and was severely dehydrated - this of course, should have been diagnosed by the GP, who had visited just two days earlier!
When the Doctor arrived, he also agreed with the diagnosis of a UTI. Mum was once again admitted to hospital. She was put on a drip, and had a catheter inserted. I was now very concerned, even frightened, about what might happen next.
During her stay in hospital, she was moved between a number of wards. Some of which were excellent, some less so. She, of course, had no idea why she had been moved - nor for that matter, apart from one occasion, did I.
The worst experience, from my point of view, was when visiting one day, I went straight to the ward Mum had been in the previous day, only to find the curtains drawn around the bed she had been occupying. Panic mode set in! I took a quick look behind the curtains, in the bed was a little old lady, being attended to by a Doctor, and clearly unresponsive. This, was the stroke ward. Fortunately, I saw enough to establish that that little old lady, was not Mum.
Mum had been moved to another ward - after midnight - to free up the bed for the lady who had had the stroke. No-one took the time to call me, and let me know.
Mum's stay in hospital would last three weeks, during which time further tests and assessments would be carried out. Medication was revised once more, and arrangements put in place for her to return home.
Those arrangements involved a community bed (hospital bed) with air mattress, hoists, commode and wheelchair, along with an initial rehabilitation care package, lasting six weeks. This would then be replaced by a continuing care package from another agency. I was also given training, albeit briefly, on the use of the hoists.
Her discharge was delayed, thanks to the District Nurse team failing to order an air mattress in time. In fact, they had claimed to have placed the order, but no such order appeared on the system. A system also used by the Occupational Therapists planning Mum's discharge. An urgent instruction was issued for the order to be made for next day delivery.
Once all this was in place, Mum was returned home. I breathed a small sigh of relief.
Her stay in hospital, whilst helping to assess Mum's condition, did not help her in other ways. Only one ward provided the care and attention required by a dementia patient. In the others, she was effectively left to fend for herself when it came to eating and drinking. If she refused to eat or drink, or take her medication, this was recorded as "patient being difficult". If she got angry, or lashed out, because she was frightened and confused, this was recorded as "aggressive behaviour".
Once home, I, along with the agency carers, was able to provide the more understanding, patient centred care needed.
My life had now completely changed. Working was definitely out of the question. I now had to put in place claims for Attendance Allowance (higher rate), Carer's Allowance and Income Support.
Whilst at home, Mum began to improve significantly. Her skin was creamed everyday. The once very dry and flaking skin on her legs, as a result of her UTI, dehydration, and stay in hospital, became smooth and soft, once more. Encouraging her to eat and drink was difficult to start with, but this improved slowly over time. Initially, I had to spoon feed her, but she is now able to do this for herself - with the aid of items originally designed for children, including drip-free sip cups, spoons and feeding bowls. Medication is taken, when required, with no significant problems.
Mum suffers continence issues, and needs to wear pads at all times. These are thankfully supplied as an integral part of her care package.
She spends most days in bed, but with the summer now approaching, the plan is to get her into the wheelchair more often, and take her outside. Living close to the sea, there is an easily accessible path right next to the beach, and a beach front cafe within easy walking (and wheeling) distance.
In her room, she has plain, but brightly coloured bedding. A TV, a DVD player, an activity box, a cuddly toy box, and a memory box. There are old photos on the wall, including pictures of her Mother (whom she often wants to visit), my late Father, a much loved Golden Retriever we once had, Mum herself, when younger, and me.
I always make sure she has fresh flowers, which she loves, and there a three flower pictures on another wall. Her favourite items are two baby dolls. She loves them and talks to them as if they are real. (Doll therapy - a subject I will cover later).
All of these things help her to keep calm, and feel happy and secure.
My days now follow a pretty set routine. Up in the morning to make us both a cup of tea. Then helping the first carer of the day, wash Mum and change her clothing and pads.
On the subject of clothing, before Mum returned from hospital, I found three polyester kaftans, that she had bought a number of years earlier. These have proven to be perfect, as both a substitute for a nightdress and as day clothing. Being very loose fitting, they are easy to put on and take off.
Next, it's breakfast and medication, along with another cup of tea. Off to check emails, Twitter, Facebook, a carers' forum etc. Then the next call from the carers. This visit, is more often than not simple and speedy. Check Mum's pad - change it if needed, cream Mum's arms and legs, and face if she wants it. Commode, if needed.
Then lunch. In the winter months, this would often be soups, specifically those with a higher fibre content. Now, with warmer weather, it tends to be sandwiches, these nearly always contain salad leaves, along with other fillings, using wholemeal bread.
Any washing that needs doing, is placed in the washing machine, including her absorbent bed mats. Then, subsequently, into the tumble dryer (low heat for the bed mats).
In the afternoon, I normally get a little time to go out to the shops (only around seven minutes walking distance away), to buy any essentials, and have a short break for myself.
At around four in the afternoon, the next carer arrives. Similar routine to lunch time, unless Mum needs the commode - which rarely happens when the carers are around.
Dinner comes next, this is usually either spoon friendly food, or finger food.
At around eight in the evening, the last carer calls. Again, a similar routine to lunch and evening, check pad, change if needed, settle for the night.
On the subject of the commode, Mum still has no routine. So such a need can occur at any time. Being in bed for the most part, Mum's appetite, whilst now healthy, means she does not need to eat as much as she would if she was still mobile. So bowel movements only tend to occur every few days - until yesterday that is, when suddenly it was two days in a row.
Need for the commode can occur at any time, day or night, and invariably, as I have already mentioned, rarely occurs when the carers are around. Fortunately, Mum is quite small, and I am able to carry out all the related duties, on my own. It does however mean, that I need to be around pretty much all of the time.
Mum's demeanour is, for the most part, happy and friendly - it is my intention to try to keep it that way. Her carers very much enjoy the time they spend with her, and look forward to seeing her - which can only be good for all concerned, Mum most of all.
Socialising is now out of the question, unless people visit us. This of course, hardly ever happens. The stigma of dementia, results in many, including family, who would have visited before, now staying away. I am sure if I asked them to visit, they would come up with a multitude of excuses as to why such a visit would not be possible, "at the moment".
Without modern technology, and social networks, I would now be completely isolated. This would very much have been the case for carers, in the past. Were it not for my blogs, the likes of Twitter and Facebook, and more importantly, the carers' forum, of which I am a member, my life would be very lonely indeed.
A great big thank you, to all of you out there, who have helped me to maintain my sanity, and find at least a little virtual respite, from my demanding role as a carer.
Most important of all, thanks go to Naboo, my little Jenday Conure (small parrot), who provides endless hours of entertainment, and loads of affection.
As a footnote, I would add, as a result of an initiative started by someone who has dementia, a regular on both Twitter and the carers' forum, I contacted my local NHS Trust. In the next couple of weeks, their Dementia Nurse Specialist will be visiting us, to discuss their initiative surrounding care for dementia patients, in their hospitals. And, to discuss any suggestions I may have, and any help I can give.
Tuesday 14 May 2013
Tales of Parrot antics bringing cheer to those in need
I have a little Jenday Conure called Naboo, and very recently tales of his antics have been bringing cheer to members of a UK forum for carers, of which I am a member.
Here's an example of a couple of the posts I made yesterday:
"If typing goes wrong, blame it on the parrot, he's walking over the keyboard at the momnthiusoiyuosdbjbf."
"May, just have sorted the relative problem, ahve to wait a coup[ple of days thopugh - Naboo! Get off the keyboard!"
"Problem with the parrot is, he wants to take the keys off the keyboard! He can undo keyrings, spring clips, screw clips, and has worked out that he can take the keys off the keyboard. He steals slices of lemon or lime from drinks, "shares" yoghurt and ice cream - sort of, and loves spaghetti. And, demands red grapes everyday. If you wear specs, he just takes them off, and throws them on to the floor, and tries to take my mobile phone out of my shirt pocket. Oh, and takes a shower with me - occasionally (him, not me, that is). But, he still loves his Daddy. Parrot kisses all round."
Little posts such as these, help some of the forum members who are going through very difficult times at the moment - here are just a few examples of their responses:
"Welcome Naboo"
"That parrot needs a few more typing lessons but not bad as a first go!"
"You'll have to get Naboo his own laptop - bet if he pecked at the keys long enough he'd end up writing a bestseller"
"I'd have trouble if I came to visit you - blind as a bat without my specs"
"Do you think Naboo could be persuaded to paint? This could be quite a good source of income. For a small(ish) fee, I could be his agent. Chimpanzees have made good money for their artwork so why not parrots?"
"Naboo's antics gave me a much needed chuckle. We should give him his own thread"
Now there's a thought - A day in the life of a parrot...
 |
| Naboo the Jenday Conure |
Here's an example of a couple of the posts I made yesterday:
"If typing goes wrong, blame it on the parrot, he's walking over the keyboard at the momnthiusoiyuosdbjbf."
"May, just have sorted the relative problem, ahve to wait a coup[ple of days thopugh - Naboo! Get off the keyboard!"
"Problem with the parrot is, he wants to take the keys off the keyboard! He can undo keyrings, spring clips, screw clips, and has worked out that he can take the keys off the keyboard. He steals slices of lemon or lime from drinks, "shares" yoghurt and ice cream - sort of, and loves spaghetti. And, demands red grapes everyday. If you wear specs, he just takes them off, and throws them on to the floor, and tries to take my mobile phone out of my shirt pocket. Oh, and takes a shower with me - occasionally (him, not me, that is). But, he still loves his Daddy. Parrot kisses all round."
Little posts such as these, help some of the forum members who are going through very difficult times at the moment - here are just a few examples of their responses:
"Welcome Naboo"
"That parrot needs a few more typing lessons but not bad as a first go!"
"You'll have to get Naboo his own laptop - bet if he pecked at the keys long enough he'd end up writing a bestseller"
"I'd have trouble if I came to visit you - blind as a bat without my specs"
"Do you think Naboo could be persuaded to paint? This could be quite a good source of income. For a small(ish) fee, I could be his agent. Chimpanzees have made good money for their artwork so why not parrots?"
"Naboo's antics gave me a much needed chuckle. We should give him his own thread"
Now there's a thought - A day in the life of a parrot...
Sunday 12 May 2013
Slowly losing a loved one to the evils of dementia.
Dementia, in its various guises, is an evil affliction. I use the term
affliction, as dementia doesn't even have the decency to be a disease in
its own right. It is a compendium of other diseases, such as
Alzheimer's, cerebral vascular degeneration, strokes, in some cases
non-stroke related severe brain trauma, and Lewy Body, that ultimately
cause irreparable damage to the brain.
The first signs are often dismissed as forgetfulness due to old age - DANGER! It is at this point that real diagnosis is needed. There is currently no cure, and probably won't be one for the foreseeable future. The main treatments - when diagnosis is ultimately made, often later than should be the case - are aimed at the underlying diseases that cause dementia.
These treatments may delay the stages of dementia - in some cases successfully, in many not. Ultimately, the person we love begins a slow, sometimes incredibly slow, decline, and we begin to lose the person we knew and loved so much.
The worst aspect of dementia is that the person concerned, also knows something is not right. They become agitated, frightened, and in some cases terrified. Neither they, nor we, know what is happening.
Dementia doesn't just affect the person who has it, but everyone else close to them. It is often accompanied by, and indeed caused by, acute diseases such as Diabetes, Hypertension, Hypothyroidism, TIAs (Transient Ischaemic Attacks) etc. All of which contribute to the condition.
My Mum has what is now mid to late stage vascular dementia. Everyday is precious. Some are good, some not so. But, I still love my "little lady" (ickle lady), and will do everything I can for her. Despite the fact that she is no longer able to do many things for herself, and relies on me and her carers to look after her.
She still has a wicked sense of humour, and her carers look forward to their visits, because of her friendly, smiley attitude towards them. Yet, deep down inside, I know that slowly, but surely, my beloved Mum is disappearing, before my very eyes.
If you're in the same situation, treasure every moment you can. Give them the love and security they crave, and above all, treat them with the kindness and respect they deserve.
The first signs are often dismissed as forgetfulness due to old age - DANGER! It is at this point that real diagnosis is needed. There is currently no cure, and probably won't be one for the foreseeable future. The main treatments - when diagnosis is ultimately made, often later than should be the case - are aimed at the underlying diseases that cause dementia.
These treatments may delay the stages of dementia - in some cases successfully, in many not. Ultimately, the person we love begins a slow, sometimes incredibly slow, decline, and we begin to lose the person we knew and loved so much.
The worst aspect of dementia is that the person concerned, also knows something is not right. They become agitated, frightened, and in some cases terrified. Neither they, nor we, know what is happening.
Dementia doesn't just affect the person who has it, but everyone else close to them. It is often accompanied by, and indeed caused by, acute diseases such as Diabetes, Hypertension, Hypothyroidism, TIAs (Transient Ischaemic Attacks) etc. All of which contribute to the condition.
My Mum has what is now mid to late stage vascular dementia. Everyday is precious. Some are good, some not so. But, I still love my "little lady" (ickle lady), and will do everything I can for her. Despite the fact that she is no longer able to do many things for herself, and relies on me and her carers to look after her.
She still has a wicked sense of humour, and her carers look forward to their visits, because of her friendly, smiley attitude towards them. Yet, deep down inside, I know that slowly, but surely, my beloved Mum is disappearing, before my very eyes.
If you're in the same situation, treasure every moment you can. Give them the love and security they crave, and above all, treat them with the kindness and respect they deserve.
Friday 10 May 2013
How family members react to dementia - and why everyone needs to understand this condition...
This is a short observation of the reaction of a close relative, to my Mother's condition:
From
a simple psychological point of view - my cousin is going through denial,
and a form of grieving. She can not accept that her Aunt is now as she
is. Therefore, she is seeking someone to blame. Of all people, and
unfortunately so very common under such circumstances, she has targeted
the person closest to her Aunt. This is, as I say, very common.
After my Mother left hospital, my cousin would only visit for a couple
of hours each week. Prior to going into hospital, my Mother was still
mobile, and reasonably
compus mentis. Now, however, she is immobile, and confused, albeit (as
described in her hospital report), pleasantly so. Prior to hospitalisation, it was my Mother who would frequently visit my cousin. After discharge, there was a
definite change in my cousin's routine, as she now had to visit my Mother.
My cousin would appear to be
undergoing a premature, but common, grieving process. This happens,
quite frequently, with members of families, who are in frequent, but not daily contact, with the person concerned. After each visit, they remember
the person as they used to be, and not as they are. On subsequent
visits, they think they detect a worsening of the situation, even when
this is not the case.
As a result of her dementia, my Mother is no longer the person my cousin once knew - this, is the main problem.
My cousin believes, she has lost the friend (my
Mother) she once had, and all blame for this, is then directed at the person closest
to my Mother, and who cares for my Mother. This is partly because my cousin feels a certain amount of guilt, in that she could do nothing to prevent
what happened, she is unable (and many are) to handle the caring situation, and also because she is seeking to blame someone else
for the what has happened.
The
fact that my cousin has an additional, unrelated reason, that she can use to
punish the person whom she holds responsible, only makes matters worse.
Under such circumstances, there is only one course of action. And that,
is to sever all ties, to
enable her (my cousin) to accept her loss, and find closure.
This
of course, means, my cousin can never come into contact with me or my Mother
again, as the level of hostility imparted, would be unacceptable.
My cousin, may at some time in the future, feel that she can approach me again - unfortunately, at a time when the main carer needs help and support from close family, they find instead, they are being treated as if they are totally responsible for the illness, shunned and indeed treated as outcasts.
For those who take up the burden of caring - forgiveness towards those who have chosen to both abandon them, and indeed blame them, is almost impossible.
If you are a relative, or indeed friend, of a carer, bear this in mind. You may think you have already lost the person you knew, or the person you knew is no longer there. However, the person who provides the caring, has a different view. Their loss, and their grieving, only begins when their caring has ended. That, can often be, many years away,
They, the carers, will benefit from their experience, and be more balanced, understanding, and indeed caring for others. A finer group of people, you could not wish to meet.
We, as carers, in the words of Shakespeare - "suffer the slings and arrows of outrageous fortune".
Total number of carers - 5.8 million, up from 5.2 million in 2001
Those providing care for more than 20 hours per week - 2.1 million, up nearly half a million since 2001
Those providing care for more than 50 hours per week - 1.36 million, up 270,000 since 2001
An overall increase of 11% between 2001 and 2011
2011 UK census revealed increase in carer numbers
Total number of carers - 5.8 million, up from 5.2 million in 2001
Those providing care for more than 20 hours per week - 2.1 million, up nearly half a million since 2001
Those providing care for more than 50 hours per week - 1.36 million, up 270,000 since 2001
An overall increase of 11% between 2001 and 2011
Monday 6 May 2013
Retro designs to help people living with dementia
Research has shown that people living with dementia often benefit from seeing items and objects from their past, helping to trigger memories, both about a time they can remember, and of objects they know how to use.
Consider using a retro telephone in place of a modern cordless phone. There are a number available, ideally choose one with an old fashioned rotary dial, and real bell ringer. The telephone illustrated above, is a modern reproduction, and works on modern telephone networks, it has a rotary dial, and bell ringer, but also more modern features. The telephone can be "hands free", by pushing a button that is in fact the centre of the dial. It is also capable of last number redial using the finger stop, and has two extra holes in the dial for the hash and star keys.
Use retro posters from a person's past, to trigger memories. Use them in appropriate places, the two above can be placed in the kitchen, and laundry room.
If the individual likes to listen to music, use either an old radio, or a retro-styled new radio. If they have a collection of CDs, or old vinyl records, why not use a retro-styled, Record/CD Player with Radio?
Think about using old fashioned soaps such as Pears, the scent can also trigger memories, and help remind people to wash.
As mentioned in another post, use toilets seats that contrast with the toilet bowl, either black plastic or a wooden seat. Textures, shapes and colours they remember and recognise. These can also help reduce continence problems.
Decorate the person's room in a slightly older style, this can make the surroundings feel safer, and more familiar. Furnish it with familiar pieces of older style furniture, preferrably their own. Have photos from their past, either on the wall, or placed on a shelf or piece of furniture, where they can see them.
You may find, that even if they have used a duvet in the past, they might now feel more comfortable with blankets and sheets, just as they did when they were younger. Look to see if they still have an old bedspread or quilt, use these to help promote a feeling of comfort security.
These are just a few ideas, to help someone living with dementia feel less agitated, using items and objects that are familiar, and easy to use.
Retro Telephones
Consider using a retro telephone in place of a modern cordless phone. There are a number available, ideally choose one with an old fashioned rotary dial, and real bell ringer. The telephone illustrated above, is a modern reproduction, and works on modern telephone networks, it has a rotary dial, and bell ringer, but also more modern features. The telephone can be "hands free", by pushing a button that is in fact the centre of the dial. It is also capable of last number redial using the finger stop, and has two extra holes in the dial for the hash and star keys.
Retro posters
Use retro posters from a person's past, to trigger memories. Use them in appropriate places, the two above can be placed in the kitchen, and laundry room.
Retro style radios
If the individual likes to listen to music, use either an old radio, or a retro-styled new radio. If they have a collection of CDs, or old vinyl records, why not use a retro-styled, Record/CD Player with Radio?
Bathroom
Think about using old fashioned soaps such as Pears, the scent can also trigger memories, and help remind people to wash.
As mentioned in another post, use toilets seats that contrast with the toilet bowl, either black plastic or a wooden seat. Textures, shapes and colours they remember and recognise. These can also help reduce continence problems.
Retro decorating
Decorate the person's room in a slightly older style, this can make the surroundings feel safer, and more familiar. Furnish it with familiar pieces of older style furniture, preferrably their own. Have photos from their past, either on the wall, or placed on a shelf or piece of furniture, where they can see them.
You may find, that even if they have used a duvet in the past, they might now feel more comfortable with blankets and sheets, just as they did when they were younger. Look to see if they still have an old bedspread or quilt, use these to help promote a feeling of comfort security.
These are just a few ideas, to help someone living with dementia feel less agitated, using items and objects that are familiar, and easy to use.
Friday 3 May 2013
Helping people living with dementia - through design
A good place to start? Well, not really, as only two of the ideas featured involve design in the true sense.
Buddiband
The buddiband is an idea from buddi, developers of a unique 24/7 personal alarm system. The buddiband will use technology similar to the existing buddi personal alarm, but in the form of a discreet wristband. It will utilse the latest mobile phone and satellite technology, it will feature an emergency alarm, automatic fall alert, location finder and connect to a 24/7 emergency monitoring centre. http://www.livingwellwithdementia.com/buddi/ . In view of the recent "bad press" regarding the use of a similar system, supported in a small number of cases by Sussex Police - the development of such systems indicates the need for them.
Ode
Ode is a mains powered device that releases three different food fragrances a day, adjustable to coincide with meal time. It is recognised that weight loss is common, especially in late stage dementia - Ode is intended to help stimulate appetite among people with dementia. http://www.myode.org/
The other ideas featured are:
Dementia Dog - assistance dogs helping people with dementia lead more fulfilled, independent and stress-free lives
Grouple – a private social online hub to help people share the responsibilities of a loved one Trading Times – a web-based service to match carers with local businesses for flexible paid work
What else is out there?
Day Clock for Digital Photo Frames
Of course at this point, it would be a little remiss of me not to mention my own little project. Creating a Day Clock using a Digital Photo Frame.
Yes, there is a commercially available Day Clock that works on the same principle, but many Digital Photo Frames can be simply adapted to create a day clock. And, I think my version looks better (then again, I would, wouldn't I?). I won't go any further into the details here, as all the information needed can be found here.
At home
Many organisations and institutions have been looking into design for dementia, and a lot of it has been centred around Care Homes and Hospitals. However, many of the principles can be equally applied at home.
Kitchen
Cupboard doors create a block if they are solid, you can't see what is behind the closed door. Replacing them with glazed doors will enable the person to view what is inside, and be more likely to open them a take something out – especially food. Also consider a glass fronted fridge.
Flooring
Flooring should ideally be the same colour throughout. Colour change can cause confusion, and even fear. I know when my Mother was still mobile, but progressively becoming less so, she became very agitated when moving from the Living Room and into the hall, because the two carpets were different colours. She felt she either had to step over something or step up. Yet the apartment is level access throughout.
Doors
Doors you want the person to use, should contrast with their surroundings, doors you don't want them to use, should be approximately the same colour as their surroundings. Contrasting doors are easy to see, same colour doors blend in.
Bathroom
Apart from making a bathroom more accessible, either through a walk-in bath or level access shower, other things can also make a difference. Toilet seats for example, should contrast with the surroundings, making them easy to see. Choose either a brightly coloured one, or a black one. Avoid patterned seats, as these will confuse even more. Remove as many toiletries as possible, leave only what the person needs for personal hygiene. Treat medicine cabinets as you would with children, ideally they should be lockable, and out of reach. Ideally, fixtures and fittings should contrast with wall colours.
Signs
If you're considering using signs to label rooms and items, consider the colours carefully. Black on yellow creates a strong visible contrast, both between the lettering on the sign, and the sign against its background. For rooms such as the toilet, consider using a pictorial image of the toilet, along with the word.
Visual or pictorial prompts can be used in a variety of situations, to help orientate and identify.
What sort of products are readily available?
We should look at what has been designed for children. Some of the products designed for children are also suitable for people with dementia. I have bought a number of products designed for children, for my mother. One of my favourites is the Tommee Tippee Easy Drink Beaker. It's a sip mug, that has a non-return anti spill valve. Mum has a habit of just placing a sip mug somewhere on her bed, regardless of whether it is the right way up or not. The Tommy Tipper sip mug doesn't leak. So its great for her to use, as no matter which way round she leaves it, it doesn't spill onto the bedclothes. At £3 in major supermarkets, it saves its weight in gold, as I don't have to keep changing bedding due to spillages.
Also available from one of the major supermarkets is a range of items, some quite cheap, that are also suitable for people with dementia.Such as a range of polypropylene picnic-ware, consisting of small bowls, small plates, small beakers and a set of knives, forks and spoons. Each set of six costs just £1, and are all brightly coloured in blue, green and deep pink, providing contrast between the container and the food. The size of the plates and bowls is ideal for less mobile patients, as the portions they can contain are just right for the amount of food intake needed.
Project: To adapt a readily available container to aid eating
There are of course specially made eating and drinking aids, but these are often quite expensive, and are not suitable for everyone. My Mum spends a lot of time in bed, and eating from various containers using a spoon is often difficult - she tends to push food to the front of the bowl, and this then spills over. I am currently looking into how a readily available container can be adapted, in order to alleviate this problem. There'll be more on this subject in a future blog. If, of course, I find a solution.
Just a quick footnote to this project...
I have found another Tommee Tippee product that fits the bill, however, as it's designed for babies and young children, it is generally too small for adults, other than for breakfast cereals, small desserts and yoghurt.
Well that's it for now, there will be more in-depth blogs about various aspects of Design for Dementia soon.
Thursday 2 May 2013
Introduction
I am by profession a Graphic Designer, but I've deliberately kept the appearance of this blog simple so as not to detract from the content.
Before I approach the main subject of this blog, I'd like to share the reasons why I am no longer a Graphic Designer working in marketing, and why I have chosen to use my skills and experience to help others who care for someone with dementia, and those who have dementia.
In 2011 my Mother was diagnosed with vascular dementia. Many of us have close relatives who have been diagnosed with some form of dementia - the two main types of dementia found in the elderly are, Alzheimer's and vascular dementia. I have, unfortunately, experience of both.
My Uncle (my Mother's brother) died as a result of Alzheimer's a number of years ago, and now my Mother has vascular dementia. Thanks, in a way, to the symptoms I saw in my Uncle, I was able to understand, even before diagnosis, that my Mother was developing some form of dementia.
Until the beginning of 2012, I was a full-time Graphic Designer, and had been since graduating in 1981. 2012 changed all of that. I am an only child. Therefore, when my Mother started to reach the stage of needing help - it was quite natural for me to take on the role of carer.
The early symptoms were seemingly trivial. She would forget how to use the stove, or the washing machine, claiming that she had never used that particular one before. Yet at other times had no problems at all. The first warning sign, as I know now, came several years earlier, when she had a mini stroke, or Transient Ischaemic (US: Ischemic) Attack (TIA).
Later CT scans revealed this old infarction, and the scarring it had caused to that part of her brain.
Prior to diagnosis, she'd had a number of falls, none serious until she broke her wrist. At this point she was still, in almost every way, perfectly able to carry out everyday tasks. Yet, somehow I knew something wasn't quite right. As well as being a Graphic Designer, I was also a part-time (Territorial Army) soldier. Weekends away, were not a problem, but two weeks Annual Camp became more difficult. Especially by the time my TA responsibilities, through promotion, became more involved and complex. On the one hand, I was helping young soldiers, whilst on the other, beginning to care for an increasingly elderly relative.
Juggling my duties, between having to call Mum to make sure everything was OK, several times a day, and carrying out my TA role, resulted in me ultimately leaving the TA. I could no longer carry out both. My last Annual Camp showed me where my responsibility should be in the years ahead. I could no longer commit to my military duties, and look after Mum, at the same time.
A couple of years later, this also became the case with working. I'd worked, on a freelance basis, for a very understanding company until 2011, by this time Mum was living with me. That work came to end in early 2011, after which I ended up working for a different company, with a completely different approach. By early 2012 it became clear once more that I could no longer carry on working, and look after Mum at the same time.
I became a full-time carer. Not that the government rewards us well for this, but more of that another time.
During 2012, it became clear that where we were living was no longer suitable for Mum. So in August we moved to a two bedroom ground floor apartment, well adapted for people with disabilities. Wider doors, level access throughout, and a wet room with a fold down shower stool.
All was fine, for a short while. Until late September, when Mum had a small number of TIAs (Transient Ischaemic Attacks or Mini Strokes). She ended up in hospital for a few days, then returned home. Her already decreasing mobility, continued to decrease still further. By the end of October, she was hospitalised again, this time for three weeks, thanks to a severe Urinary Tract Infection (UTI).
Initially she had a cannula inserted, and was put on a drip, along with a catheter - the day she was admitted, I almost thought I was going to lose her. She was drifting in and out of sleep, and almost motionless. Fortunately, by the time I visited the following day, she had improved.
Hospital visits were difficult to say the least. I was now learning that the Mum I had known for all my life, was becoming a frail and vulnerable little old lady, and was losing the ability to do many things for herself.
Whilst she was in hospital, Occupational Therapists started making arrangements, at home, in time for her discharge. These included, a community bed (often referred to as a hospital bed) complete with air mattress, a commode, a hoist, wheelchair etc.
Mum was no longer able to weight bear, her leg muscles had become weak, and she was no longer able to stand or walk. Initially transfers to and from the wheelchair and the commode were carried out using the hoist, but she hated that. So, now, transfers are carried out using my strength and a slide board. She still doesn't like it, but it is far quicker than the hoist, and she doesn't have to be put in a hoist sling.
Carers come in four times a day to assist with washing, and the commode where necessary, and also provide Mum with a little extra company.
My cousin used to visit once a week, for a while, after Mum came out of hospital. These visits, however, became shorter and shorter, and it was becoming increasingly clear, that she felt she (my cousin) had better things to do. After a disagreement, when she brought up a subject, which I had already told her not to raise in front of Mum, I made it clear she was no longer welcome.
This sort of situation is all too common with relatives, and indeed friends, as they begin to distance themselves from someone with an illness, they don't understand.
There are others, however, who have a completely different approach. One friend of mine, who is also going through a difficult time - his Father has asbestosis, and is undergoing both chemotherapy and radiotherapy - visits on a regular basis, and fully understands Mum's condition. In fact, we are able to give each other some much needed support - even if it's just spending an evening chatting over a few drinks. I understand his situation, as my own Father died in 1994, as a result of cancer of the oesophagus and multiple myeloma.
Mum's conversational abilities are still good, even though she may go off at extreme tangents at times, and she still has a wicked sense of humour. However, her cognitive skills have diminished over time. She enjoys her cuddly toys, and treats them all as if they were real living pets - talking to them and cuddling them. She can still read, but no longer reads books or magazines - there's just too much information to take in - and she'd probably forget what she's just read anyway.
Mum has a TV in her room, and enjoys watching that, though she sometimes believes whoever is on TV is actually in the room with her, and sometimes gets agitated or upset over some programmes. So I have to be careful about what she watches. News programmes in particular are generally avoided, as these can upset her.
There is also a DVD player, and she particularly enjoys watching older TV comedies - we have As Time Goes By, The Good Life, To The Manor Born, Yes Minister, Yes Prime Minister and The Vicar Of Dibley on DVD. Her favourite though, is watching Andre Rieu concerts, we have four on DVD. Using a video sender/receiver, she can now watch Sky, rather than the more limited Freeview channels, and is now able to watch Gold, where many of her favourite comedies can be found.
I've also put together an activity tray full of various objects that she can "play" with. They consist of pieces of coloured wood of various shapes and sizes (originally purchased for my small parrot), a child's shape recognition toy, cardboard tubes, various craft items, and some splash balls, one in the shape of a pink octopus, affectionately known as "Olly".
She can still feed herself, but only by using a spoon. So meals are either spoon friendly, or finger meals. Drinking is not a problem, although she did need to be encouraged during the first few months after leaving hospital. She drinks from sip cups, and the type I've purchased for her are from the Tommee Tippee range for children. These are ideal, as they have a non-return valve, and most spillages are avoided.
Although I can't fully answer the question, I have made it my mission to help others in a similar situation, both by using my skills as a designer, and my experiences as a carer.
One small project, still undergoing development can be found on another of my blogs here Dementia Day Clock using a Digital Photo Frame
Before I approach the main subject of this blog, I'd like to share the reasons why I am no longer a Graphic Designer working in marketing, and why I have chosen to use my skills and experience to help others who care for someone with dementia, and those who have dementia.
2011
In 2011 my Mother was diagnosed with vascular dementia. Many of us have close relatives who have been diagnosed with some form of dementia - the two main types of dementia found in the elderly are, Alzheimer's and vascular dementia. I have, unfortunately, experience of both.
My Uncle (my Mother's brother) died as a result of Alzheimer's a number of years ago, and now my Mother has vascular dementia. Thanks, in a way, to the symptoms I saw in my Uncle, I was able to understand, even before diagnosis, that my Mother was developing some form of dementia.
Then everything changed
Until the beginning of 2012, I was a full-time Graphic Designer, and had been since graduating in 1981. 2012 changed all of that. I am an only child. Therefore, when my Mother started to reach the stage of needing help - it was quite natural for me to take on the role of carer.
Early symptoms
The early symptoms were seemingly trivial. She would forget how to use the stove, or the washing machine, claiming that she had never used that particular one before. Yet at other times had no problems at all. The first warning sign, as I know now, came several years earlier, when she had a mini stroke, or Transient Ischaemic (US: Ischemic) Attack (TIA).
Later CT scans revealed this old infarction, and the scarring it had caused to that part of her brain.
Juggling
Prior to diagnosis, she'd had a number of falls, none serious until she broke her wrist. At this point she was still, in almost every way, perfectly able to carry out everyday tasks. Yet, somehow I knew something wasn't quite right. As well as being a Graphic Designer, I was also a part-time (Territorial Army) soldier. Weekends away, were not a problem, but two weeks Annual Camp became more difficult. Especially by the time my TA responsibilities, through promotion, became more involved and complex. On the one hand, I was helping young soldiers, whilst on the other, beginning to care for an increasingly elderly relative.
Juggling my duties, between having to call Mum to make sure everything was OK, several times a day, and carrying out my TA role, resulted in me ultimately leaving the TA. I could no longer carry out both. My last Annual Camp showed me where my responsibility should be in the years ahead. I could no longer commit to my military duties, and look after Mum, at the same time.
Working no longer viable
A couple of years later, this also became the case with working. I'd worked, on a freelance basis, for a very understanding company until 2011, by this time Mum was living with me. That work came to end in early 2011, after which I ended up working for a different company, with a completely different approach. By early 2012 it became clear once more that I could no longer carry on working, and look after Mum at the same time.
I became a full-time carer. Not that the government rewards us well for this, but more of that another time.
During 2012, it became clear that where we were living was no longer suitable for Mum. So in August we moved to a two bedroom ground floor apartment, well adapted for people with disabilities. Wider doors, level access throughout, and a wet room with a fold down shower stool.
UTI and TIAs
All was fine, for a short while. Until late September, when Mum had a small number of TIAs (Transient Ischaemic Attacks or Mini Strokes). She ended up in hospital for a few days, then returned home. Her already decreasing mobility, continued to decrease still further. By the end of October, she was hospitalised again, this time for three weeks, thanks to a severe Urinary Tract Infection (UTI).
Initially she had a cannula inserted, and was put on a drip, along with a catheter - the day she was admitted, I almost thought I was going to lose her. She was drifting in and out of sleep, and almost motionless. Fortunately, by the time I visited the following day, she had improved.
Hospital visits were difficult to say the least. I was now learning that the Mum I had known for all my life, was becoming a frail and vulnerable little old lady, and was losing the ability to do many things for herself.
Whilst she was in hospital, Occupational Therapists started making arrangements, at home, in time for her discharge. These included, a community bed (often referred to as a hospital bed) complete with air mattress, a commode, a hoist, wheelchair etc.
Back home
Mum was no longer able to weight bear, her leg muscles had become weak, and she was no longer able to stand or walk. Initially transfers to and from the wheelchair and the commode were carried out using the hoist, but she hated that. So, now, transfers are carried out using my strength and a slide board. She still doesn't like it, but it is far quicker than the hoist, and she doesn't have to be put in a hoist sling.
Carers come in four times a day to assist with washing, and the commode where necessary, and also provide Mum with a little extra company.
Family conflict
My cousin used to visit once a week, for a while, after Mum came out of hospital. These visits, however, became shorter and shorter, and it was becoming increasingly clear, that she felt she (my cousin) had better things to do. After a disagreement, when she brought up a subject, which I had already told her not to raise in front of Mum, I made it clear she was no longer welcome.
This sort of situation is all too common with relatives, and indeed friends, as they begin to distance themselves from someone with an illness, they don't understand.
Understanding friends
There are others, however, who have a completely different approach. One friend of mine, who is also going through a difficult time - his Father has asbestosis, and is undergoing both chemotherapy and radiotherapy - visits on a regular basis, and fully understands Mum's condition. In fact, we are able to give each other some much needed support - even if it's just spending an evening chatting over a few drinks. I understand his situation, as my own Father died in 1994, as a result of cancer of the oesophagus and multiple myeloma.
Where we are now
Mum's conversational abilities are still good, even though she may go off at extreme tangents at times, and she still has a wicked sense of humour. However, her cognitive skills have diminished over time. She enjoys her cuddly toys, and treats them all as if they were real living pets - talking to them and cuddling them. She can still read, but no longer reads books or magazines - there's just too much information to take in - and she'd probably forget what she's just read anyway.
Entertainment and activities
Mum has a TV in her room, and enjoys watching that, though she sometimes believes whoever is on TV is actually in the room with her, and sometimes gets agitated or upset over some programmes. So I have to be careful about what she watches. News programmes in particular are generally avoided, as these can upset her.
There is also a DVD player, and she particularly enjoys watching older TV comedies - we have As Time Goes By, The Good Life, To The Manor Born, Yes Minister, Yes Prime Minister and The Vicar Of Dibley on DVD. Her favourite though, is watching Andre Rieu concerts, we have four on DVD. Using a video sender/receiver, she can now watch Sky, rather than the more limited Freeview channels, and is now able to watch Gold, where many of her favourite comedies can be found.
I've also put together an activity tray full of various objects that she can "play" with. They consist of pieces of coloured wood of various shapes and sizes (originally purchased for my small parrot), a child's shape recognition toy, cardboard tubes, various craft items, and some splash balls, one in the shape of a pink octopus, affectionately known as "Olly".
Eating and drinking
She can still feed herself, but only by using a spoon. So meals are either spoon friendly, or finger meals. Drinking is not a problem, although she did need to be encouraged during the first few months after leaving hospital. She drinks from sip cups, and the type I've purchased for her are from the Tommee Tippee range for children. These are ideal, as they have a non-return valve, and most spillages are avoided.
That's the story so far - where now?
Although I can't fully answer the question, I have made it my mission to help others in a similar situation, both by using my skills as a designer, and my experiences as a carer.
One small project, still undergoing development can be found on another of my blogs here Dementia Day Clock using a Digital Photo Frame
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