A question about perspective

[jc141265]

An extraordinary thing happened to me the other day. Somehow Dad came up in conversation and someone I didn't know was involved in the conversation and when he realised Dad had Alzheimers he asked me how long he had had it and at what stage was he at. I said he had had it for 5 years and he was 60 and is at the point where he can't talk nor eat by himself, is doubly incontinent, and this guys comment was 'Oh well at least he's going downhill quickly, and it will all be over soon, my Mum had Alzheimers and it went on for 15 years or so.'

I was dumbfounded. I was dumbfounded because I thought my god, I don't know how I am going to cope if Dad's progression takes 15 years (after all medicine has improved in leaps and bounds so even though he appears to have gone downhill quickly who knows how long this might last compared to this man's mother who died over 5 years ago, also Dad being younger with dementia suggests to me that he is stronger bodily than an older person). I was dumbfounded because this guy basically said 'Whats your problem, why are you so sad? Your Dad's suffering is nothing compared to others.' Perhaps it is nothing in the big scheme of things, but damn it feels like something to me and no doubt to him! Lastly I was dumbfounded that someone who had been through this, could be so rough about it.

Am I self absorbed about Dad's illness, should I be thankful that he has gone downhill so fast? Has anyone else's family member had such a quick progression or does this bode that Dad will not last much longer? Was this man's comments fair under the circumstances, should I just buck up and get over it?

 

[Brucie]

Nat, the speed at which dementia goes has several aspects.

Firstly, your Dad may have started on his decline before you noticed... in fact he will definitely have done so. Generally I tend to phrase things about Jan as "since the first major symptoms occurred in 1990/91" or "since I figured what it was in 1994" or "since she was diagnosed in 1998" but then I can think back to a very strange happening - in retrospect very dementia like - that happened in 1986!

Then, the path the dementia takes depends on the kind of dementia - or the combination of dementias [often they just say "Alzheimer's" because most people know what that is, and don't look further].

The person themselves must make a difference, and their support network.

The precise bits of brain affected will determine what is lost.

You can't draw a regression line through the path of a dementia decline. it is not linear. [why can't I speak in English for goodness sake? - the path will contain some plateaus of indefinite length.

To be a Job's Comforter, it is quite possible to see a fairly rapid decline to a point where the condition 'stabilises', and then where the decline is much slower for many, many years.

THAT is my fear for Jan. 15 years in, I don't want her bedridden and with no faculties at all for any period of time.

And that is why I have declined a 'flu jab for her for the past 3 years. I'm told that her most likely 'end' will come as the result of a virus, and the immune system folding. To that end, to protect her from something that could ultimately relieve her hell of a life would seem cruel.

 

[jc141265]

Early signs, waiting for D-day

The doctors say that Dad caught onto having dementia very early, earlier than most. They say he had none of the obvious symptoms that most people come to them with. However, we do think back now and think about his obsessive compulsive ways and wonder if these were the start of it all....perhaps they were, perhaps not.
He deifinitely displayed no real cognitive dysfunction until about 6 years ago. He has gone downhill extremely fast in the past 2 years but now again for the past 6 months he seems to have plateued.
I understand what you mean by the flu shots, when I went to visit Dad today he was in bed, we don't know what was wrong but he appears to be under the weather. Terrible that my heart gave a leap of hope that fate may let him (and selfishly me) out of this quicker than we anticipate. Terrible that my heart stopped getting excited when he appeared to not be that ill.
All the while, I remember a year and a half ago when I got a phone call early in the morning he had had a terrible seizure and was in hospital, Mum had thought he had died and I raced to the hospital thinking it was all over. The hospital was an hour's drive away and all the way I bawled my eyes out and kept saying 'I didn't mean it God, I don't want him to go yet, I'm not ready, please God don't let this be it.'
<sigh> What a mish-mash of emotions this disease brings.

 

[Brucie]

I was recently invited to be on a panel at the Alzheimer's Society Annual Conference and the chair person of the panel, a fantastic lady, spoke to me in the bar afterwards and she said - "you do know that even after this amount of time caring, when Jan goes it will be a huge and mortifying shock". I said that I did realise this in an kind of remote academic sense, but that the reality will probably bring me to a standstill. I'll not know the reality until it is on me. I do know that I have a reason now to snap out quickly and start to live fully again.

Nevertheless, for Jan's sake I want her to be beyond all this.

The happening in 1986 by the way went like this:

we had flown back from the West Indies after a 3 week holiday, a long flight with no sleep. We entered our house and I sat Jan on the settee while I went across the road to collect our mail from our neighbours.

On my return she was in a sort of sleep. I woke her gently, and her look was one of horror and she froze. I asked what was wrong and she said "who are you?" "who am I?" "where am I?"

I stood her up and just put my arms around her and said "let's just wait a few minutes". We stood there for maybe 20 minutes. I was scared stiff. Eventually, Jan came back to herself and we went to bed to sleep off the journey. She seemed okay after.

At the time I put it down to jetlag. Now I wonder....

 

[Lynne]

Nat & Bruce

I feel that you two will understand what I was trying to say here (just posted it as part of another thread)

"Whilst it might take over your life for a time, you will still be you, and your family will still love & need you, after this is over. You still deserve a life and happiness, and your Mum would be the first to say so. And yes, "over" means our loved one will be dead, but I hope I will be able to see that as my Mum's release from torment.

It's difficult to know how to say this without fear of offending or being misconstrued, but in the animal world something which has lost the plot, big time, just doesn't survive to live out a long, sad decline. If I wilfully kept alive a pet in such circumstances, I would probably be prosecuted & castigated for cruelty. I am NOT advocating euthanasia (although I would want it for myself) but this living death seems the most unjust and cruellest end of all. Surely we are all doing our grieving right now, with interest."

Regards