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Worst .. Alzheimers a living death
Member Name: logberg
Disadvantages: Worst way to die
Worst ... worst way to watch your loved one die.
Worst ... it happened to a young, family man.
Worst ... two young people lost their dad, while he lived.
Worst ... Adrian lost his identity, his intellect, his dignity
Worse ... it's INCIDIOUS.... it creeps up on you ... Alzheimers Disease
WORST of all, it's the carer who suffers most. CARING for a loved one with Alzheimers Disease is challenging, rewarding, shattering and tiring. The constant questions, the same ones over and over and over ... and then over again. Surveillance, dependency, responsibilities you would never dream of, and throughout it all you just about lose your own identity.
WORST to lose your life so young. My husband died of early onset Alzheimers Disease at the age of 62 years old after many years of confusion, forgetfulness, disorientation, hallucinations, delusions , failing intellect and most of all, loss of dignity.
WORST for others. Not that he knew much about it but for me, as his prime carer, it was sometimes a nightmare - a roller coaster where the ups were few and the downs, depressingly many.
WORST way to die. Although everything else had gone, his will to live must have been lurking there, somewhere, because after getting septicaemea in early September his body lingered on for eight weeks , being force-fed, in a coma, not able to talk, walk, or move, totally unaware of his participation in life - a skeletal form of a human being.
For many years I was not aware of his illness, after all he was ``only 35'' , ``only 40'', ``only 45'' and I never guessed people that young got Alzheimers Disease. Then at around 50 it was painfully obvious that his powers of reasoning were fast deteriorating.
WORST to lose control of your life. In his early 50s the care kicked in big time. I was having to fill in the gaps in his daily life, sorting out his indiscretions like gambling debts, personal loans and dental and other bills not paid. When I realised he was out of control I got power of attorney before he was no longer able to sign contracts.
After this I took over all of his decision-making responsiblilities and then it deteriorated really fast and I was washing, showering, toileting, shaving and dressing him.
I have to say we laughed a lot, he joined in, up until the last two years when there was nothing to laugh about anymore. I'd like to share some of the funny things we laughed about, just to give those who may be going through the tragedy that is Alzheimers Disease, a bit of encouragement..
My husband, Adrian, had a fantastic sense of humour when he was a well man so I know he'd not mind me sharing some of the lighter moments. Now, I will start with his teeth. Those damn teeth were the bane of my life.
First, I have to explain that due to me not realising he had Alzheimers Disease ,and all the things that were going wrong for him, we separated for some years. All through this time I was still responsible for all his financial affairs and lots of other life-skills so when I noticed he was out of control I brought him home to live with me and looked after him (at home and then in the resthome where he had to go after running away 4 times) for the last years of his life.
So, that was just to get you up to date with this time apart . While he lived hundreds of miles away, in another town, it seems he went to a dentist for treament and I do remember he forgot to pay the bill so the dentist asked me to pay it ; I did, but was not at all aware of what treatment had been given).
Just after he came to live with me, one Saturday morning he came up to me as I talked to our son on the phone and I noticed he had a broken tooth in the front. Naturally I asked was it painful and he said it wasn't. I took him to the dentist on the Monday and the dentist said he would put a new tooth on the plate. This was news to me - AND, to my husband who was not aware that he had a plate in his mouth so he had not cleaned it for 3 years OR even taken it out of his mouth - the gums had grown over it. The dentist wrestled with it and removed it. Over the next few days he put a new tooth onto the plate. No wonder it didn't hurt - it wasn't real.
Not long after that, we went out to buffet, dinner party and as there were so many people there we sat on the sofa to eat. Adrian sat on my left and a friend was on my right. The friend said quietly into my ear, ``Adrian has taken his teeth out and they are sitting among his roast veges''. Horrors! I said to him quietly, ``Adrian, pick up your teeth and put them in your mouth''. He picked up a roast potatoe and put it in his mouth. ''Adrian, put the potatoe on your plate and pick up your teeth.'' He picked up a whole piece of pumpkin. At this point I was aware of the eyes watching the proceedings so I covered the offending denture with my serviette and took him to the bathroom, cleaned the denture, put it back in his mouth and told him firmly ``Don't you take them out again tonight.''
When we got home, I took him to the bathroom, and instructed him to take out his teeth. My friend was in the lounge room laughing because as she said, ''You've been telling the poor fellow to keep them in all night and now you want him to take them out''.
When he went into the old-folks home secure wing, those same teeth went missing for three weeks. Just as we talked about getting a new set they were found - in an old ladies top drawer, in a sock!
At his funeral, the proprietor of the old-folks home came up to me and said, ''You know all the trouble we had with Adrian's teeth, well when the funeral director came to take him to the parlour we forgot to put his teeth in. We had to take them down in the afternoon! So, in a way Adrian got the last laugh when it came to his teeth.
In my office at the newspaper he came in to sit and wait for me to finish and on the shelves in front of them I had a file box marked ''Useful old features'' and he said, ''That's me, I'm a useful old feature.''
We'd been married in the church down the road by a Rev Swears and one day he came home from a short walk, when he was quite well into his Alzheimers Disease problems and he said, ''You know Rev Swears married us at that church, welI I see the minister now is Rev Lies'' I was really impressed because he could not feed, dress or wash himself but he did remember who married us and had enough reason left to tie up the lies and swears connection.
WORST: Brain receptors don't operate. One Sunday we were watching an English Awards ceremony and the female presenter had a full two-piece suit on. Her arms, legs and entire body were really well covered. About an hour into the programme my husband covered his eyes, turned away from the television and said ''I can't watch this any more''. We said ,''why?'' He said ''this is much to risque, she is baring her breasts.'' Well we were non-plussed as she was covered from head to toe. The male company, who was watching with us, said, ''Well Adrian, I don't know what channel you are watching but I sure in hell wish I was tuned in to it''.
WORST: Brain lets you down. At this point I will say, it is this lack of correct brain cell connectors that is Alzheimers Disease, not just forgetting as people tend to think it is. We all forget; it is losing the power of reasoning and the brain sending incorrect messages that is the tragedy of Alzheimers Disease. There is not one jot of good telling them that what they see is not so.... for them, that is what the brain is telling them they are seeing and hearing.
WORST: For me was I nearly lost myself. As the prime carer, over this really difficult last decade I can honestly tell you that my life was on hold. I sometimes don't remember little things during this time as my entire focus was on working at my newspaper job, funding my kids at university and looking after my husband's day to day being.
I had this thing that I should look after his rights. That assumes he has any awareness of what is right - sometimes I had to stop and work out what was really good for him or was it just that I thought it would be good for him. The responsibility of living someone elses life, while trying to keep your own on track is draining, tiring and so soul destroying at times.
Adrian's legacy in life was our two children and our family has now grown to two grandchildren. Adrian was not aware of what he was missing out on but our two offspring were.
WORST: He was alive, but he wasn't ``with us''. He attended my daughter's graduation, 21st and wedding and my son's 21st and graduation but he had no idea why he was there, who was having the event: my kids had a dad but they didn't. When our daughter had our first grandchild, I hired a plane and flew him up to meet the little darling at 3 days old. (He couldn't go by commercial airliner because of his state of health.) The next day I had the photos developed and rushed up to the oldfolks home to show him. He asked me ''who had that baby?'' When I told him our daughter Kerry had the little baby he said '' Oh, I thought you had it and you were going to have 6 more''! What an awful thing Alzheimers Disease is. He had no cognizance that we'd flown up there the day before or what it had been all about!
Even now, I still feel hugely robbed that my children lost out on so much due to their dad being with us physically but not with us at all.
Caring is challenging, it is tiring, it is soul destroying if you let it. I truly look back and feel privileged that I was able to look after him for as long as I did and then when he went into the home they let me continue doing heaps for him.
If you end up caring for someone close to you, seek out support groups and other help, don't think you're weak if you burst into tears or throw a wobbly. (One night, he got up at 3am and out of his pyjamas, fully dressed himself, undid the bedding and stacked it in a neat pile and came to my room to tell me it was time to get up. I told him it wasn't, got him into his pyjamas, made the bed up and tucked him in - at 4am he did it all again... I freaked, yelled and screamed the naughty `F' word!!!!) Instantly I realised it was Alzheimers doing this to me in the early hours of the morning, not Adrian. Obviously I pulled myself together and got on with caring for him... Put him back to bed and went to mine and bawled my eyes out.
Admit you need help and make sure you get some quality time to yourself or with some people you know can let you be yourself. Keep as healthy as you can and in my case I had a wine or two when the going got tough. I didn't get much help from my large family of brothers and sisters but I boxed on and got there in the end.
Care is a little word but when you extend yourself it becomes a big responsibility, a big extension of yourself and a big draw on your abilities and time.
I am glad I cared for Adrian and even though his head didn't let him tell me, I know his heart was pleased I did my best for him.
I now care for people wanting to live in their own homes but need assistance - in the UK - and I LOVE it.
Thank you for reading this review and I hope it has helped someone, somewhere. If it has then this review will no longer be WORST but be what it was intended to be - helpful for me to share and helpful for others in some small way.
Summary: Worst for family and friends to see Alzheimers take its toll