The Dementia Sufferer and Life
Loved One Diagnosed with dementia? What to do? What about the Future, Life and Dignity?
This page is based on my experience of my mother with multi-infarct vascular dementia, but the information is very applicable to any dementia, such as alzheimer's disease. I hope that being a psychologist, has allowed to me to see things about dementia and what a dementia sufferer goes though, a bit more clearly.
Diagnosis Dementia and Fighting Back.
When you first hear about the diagnosis of dementia, the response will often be a wave of grief emotions - anger, denial, blame, guilt, depression - to name but a few. Dementia is a mind shattering diagnosis to receive, that leaves one thinking all is over, they wont recognise me in the end, my loved one is dieing.
Firstly, the diagnosis of alzheimers disease or dementia may be wrong - have a read of our other two pages on alzheimers disease and vascular dementia to learn more about the conditions and what you may do that may be able to help, alleviate, postpone or prevent the inevitable onslaught of the dementia.
This page is about the future and dignity and life. If the shattering diagnosis of dementia is correct, then life will likely still continue for some years ahead, if not many.
People are really afraid of getting alzheimers disease, vascular dementia or any form of dementia, so when the diagnosis is made, the reaction can be really dramatic, upsetting, if not devastating for the dementia sufferer and their friends and family. By the time mum found out she had vascular dementia, she was already at the stage where I don't think she would remember it. She understood what I was saying to her and was upset, but I don't know if she actually recalled us ever talking. The impact on me, though, was one of horror. I was losing my mum.
That's what society has lead us to believe about dementia. Most modern societies place an enormous amount of value on intelligence and memory and tend to shun those less fortunate, such as those with dementia. Reality is, the dementia sufferer has possibly several years left to live, so it is how we treat the dementia sufferer that counts. The classic response to the person with dementia is for everyone to do what they can at the start, but as the dementia deteriorates, people tend to start saying it's all too hard to cope with them. At that point the dementia sufferer is often removed from their home, locked into a dementia ward or nursing home against their wishes. If that wasn't enough harm, the dementia sufferer then finds all their family has basically deserted them. A dementia sufferer is lucky if they see their family once a year! How can such infrequent visits do anything to normalise and support the dementia sufferer? I will talk about this later - what you can do, even when the dementia sufferer is in a locked ward.
Anyway, getting back to mum and the dementia in the earlier stages, I did everything I could think of to try and fight the dementia using vitamins, chemicals, medicines and so on. I think it helped reduce the sypmtoms of the dementia for a while. As each new dementia treatment I used begun to fail, I would move onto another treatment or add another treatment. Vitamin E was big on the list of treatments in those days.
As you can see, I'm not one to accept dementia and just move on with life. I believe in fighting the dementia head on.
One of the problems we have with dementia, talking about people in general, is that it's so scary. I agree with that, dementia is horrifying, BUT, one can still lead a good life, perhaps for many years after the shattering diagnosis of dementia, as my mother did.
LIFE OF A DEMENTIA SUFFERER
Alzheimer's disease, vascular dementia, these are conditions that often take years to crush the mental processing. Things may get a bit more difficult with the dementia, but as that happens the life of the dementia sufferer is changing to take it into account. Instead of going to Bingo at the club, they may end up going on a short government sponsored bus ride to play bingo at a more supportive establishment. Instead of them doing all their house work and cooking all their meals, they may end up getting help with those things. At the start, these changes can be a bonus to those with dementia, as social life can expand, particularly if in pre-dementia they led an isolated life.
Alzheimer's disease and vascular dementia are NOT the end of life, it's simply life moving in a different direction.
Yes, as dementia progresses, which can take years, the dementia sufferer will need more and more help, but as the dementia sufferer needs more and more help, they wont realise they are needing it and if they do, it will likely slip from their mind very quickly. Dementia can be kind in this regard.
The thing we dread the most, being unable to look after ourselves, means less to the dementia sufferer the more advanced the dementia becomes. That is one of the saving graces of alzheimers disease and of vascular dementia. The more advanced the dementia becomes, the less the sufferer realises it, the less they worry about it. What might seem a devastating thing now, will come to mean nothing to them.
What am I getting at? That although dementia is a daunting thing to look at suddenly with all your fears and everything about the future, the dementia sufferer STILLS HAS A FUTURE. A future that can be shared with your family and others. Never underestimate the value / love of what you are to them and vice versa.
You know, my mum is so incapacitated now with dementia, that she can't look after herself in any way, but she still comes to visit via a wheel chair bus we arrange and we all enjoy her visits - it's like a family reunion time and a time when all the kids and I actually sit down and talk about things as a group. Even though mum is no longer able to directly participate, it is because she visits us still that this cherished family interaction occurs. Her life continues to support and add meaning and quality to ours, even though she has now entered the very advanced stage of demenita disease.
DEMENTIA SUFFERERS NEED SUPPORT: General considerations in supporting a dementia sufferer.
OK, lets get back to the earlier train of thought about the dementia sufferer, locked wards and nursing homes. Fact is, even if you can no longer look after the dementia sufferer at home any more, the dementia sufferer stills needs you to be there. If the dementia sufferer still recognises you, which is highly likely at the start of the dementia suffereres stay in the institution, then they still have feelings for you. One of those feelings is grief over separation. This is important, as one thing staff may say to you is that your visits are unsettling for your loved one and that you need to reduce them for a while. Reflect on this for a moment. Your loved one is reacting to you leaving them there, the dementia sufferer has to say goodbye to you, but really wants to be going with you. Many dementia sufferers will tell you that. This is a normal separation anxiety, you need to keep the visits up to maintain the special relationship you have with the dementia sufferer. You cut down the visits, then you are inviting the dementia to destroy your mutual relationship. Your relationship with the dementia sufferer is, I believe, more important now than ever. Dementia sufferers can go down hill very rapidly. By having weekly contact with mum for the most part of the eight years she was in the dementia residence, we were able to moitivate her to keep doing things, like certain exercises. After the big stroke we were able to help motivate her in trying to walk again. Yes, you can leave it up to the professionals, but they don't have the history with your loved one to really motivate them - love is very powerful when it comes to helping the dementia sufferer. Also, many professionals and staff believe that it is wrong to keep your loved one's alive with dementia and they will try to convince you to let them die for their own good. They don't know what they are talking about - no love - just there sad, pathetic, ill informed perception that life has no value for a dementia sufferer. They draw lines in the sand and say, at this point this life has no value. They are wrong. Leave your loved one with dementia in their hands alone and they will kill your loved one off. You must be strong and stand up for your loved ones right to life.
DEMENTIA SUFFERERS NEED SUPPORT: Some more things to consider in supporting a a dementia sufferer.
Mum was in the middle stages of multi-infarct vascular dementia when she had to be placed in a locked ward because of wandering behavior, which is common for dementia sufferers - a person with dementia sets out to go somewhere and do something then forgets what they are doing or where they were going. At home we were able to control her dementia's effect on wandering by locking doors, removing keys and verbally reinforcing we needed her to stay within the fence lines.
What caused us to place her in a hostel was her incontinence and lack of support from government funded agencies. For example, even though she was incontinent with vascular dementia, they would allow a worker to assist her with her showering only two or three times a week. I add the following to enlighten some of you: People with dementia forget how to do things, but during the middle stages of dementia they still try to do them. For example, mum would still feed her cat, but the dementia had robbed her of the know how, so she would sometimes stick the cat food on a window sill with nothing underneath it - the government funded agency involved with mum at that time said their cleaner was not required to clean it up as it was an animal mess - pardon me, but it was a mess caused by the effect of the vascular dementia on my mum.
The lack of genuine support for dementia sufferers is something we all need to contend with and complain about. Dementia sufferers do not want to be in locked wards away from their home - and your afflicted family member will most likely react against the idea, as did my mum.
One sad piece of research revealed that demented elderly
parents, once placed in an institution, are lucky if they see their
family even once a year. Like the federal government, I see this as a
shameful treatment of the elderly afflicted with dementia. These
parents raised these children, yet when they need the support because
of dementia, the children aren't there, except, perhaps, in lip
service. In my opinion, that's just straight out abuse of the elderly,
whether they have dementia or not. Dementia is NOT an excuse to ignore
one's responsibilities to one's parents, whether you love them or not.
Young children, even older ones, may become fearful of
with dementia for all sorts of reasons: Afraid they will
it, don't understand the change in behavior ... The important thing to
do is help children to understand dementia better and allay any fears
they may have about the dementia as best you can.
If taking children into a dementia ward or area, please prepare them. People with dementia often don't like being locked into the ward and will repeatedly ask people, including children, to let them out. People suffering dementia in such wards or institutions may become loud at times, yelling and so on - it may not be common for dementia sufferers, but children need to be prepared as best you can.
drawback in visiting those with dementia, is that Nursing homes or the
like seldom provide areas suitable for young children to play, which
makes visiting a person with dementia difficult, particularly if you
want to have a decent visit. Your children are likely going
stuck in the dementia ward or institiution with nothing there to do,
unless you take activities in with you.
Concluding comments on Life with Diagnosis Dementia
Essentially, life with the diagnosis dementia doesn't mean the end of life, but it does mean things are going to change. Love is the most important emotion a human has, it helps us get through things, such as diagnosis dementia. Your loved one stills needs you - probably for some years - and you will gain much from them over this time as well. Don't let fear ruin the end stage of life.
Well, mum has died, after eight years in locked wards. She would have been allowed to die several years ago if it weren't for us fighting for her right to life - and those years meant a lot to all of us. Now that she is gone, there is a void, we all wish she was still here.
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