Weird thoughts out loud...

[jc141265]

After reading posts on here am starting to realise that my father who appears to be in the 7th and last stage of Alzheimers, could last another 5 years or more yet.

Isn't it terrible that the news that my Dad could live longer devastated me?

Don't get me wrong, I love having him here and i don't want him to die, but I do want him to die.(don't like writing those words )...Bizarre that I can have two such strong and conflicting emotions existing in my heart at the same time. Both wishes have their selfish and unselfish components, I think....

I don't want him to die because I'll miss him, I'll miss hugging him, I'll miss looking into his eyes, I'll miss the smiles, I'll miss his determination. I don't want him to die because ridiculous as it is I haven't let go of hope (though its only a whisper now), as long as he is still alive, maybe, maybe..... I don't want him to die because I know he would be disappointed about being defeated, he appears to still want to fight on, he doesn't want to give in yet.

I want him to...I won't say it...because this must be so horrible for him...but upon saying that I realise that thats not the truth, he's not in tears all the time, he's not screaming and roaring, he gets frustrated yes, but no I can't really say he's unhappy...Hmmm (I'm thinking as I'm writing here so bear with me) I think I've just had an epiphany (is that how you spell it?).

I have to say now after thinking about it that my wishes for Dad to move on are most probably entirely selfish. Its me who doesn't want this nightmare to go on. Its no longer a nightmare for Dad (it was initially), thats not saying he doesn't know what is going on, I'm pretty sure he does, but I guess he's adapted and I haven't. This is just a different way of life for him with different challenges, different frustrations and different rewards.

Okay so I guess I have to live with this. You know whats really weird? I'm so used to the pain and hurt this disease causes that I'm not at all shocked by my selfishness, nor afraid to acknowledge it. I guess I've gotten used to rolling with the emotions, recognising them, analysing them and moving on. A detached, out of body feeling really at times, surreal even, yet i'm not detached from life, I'm still living it like everyone else.

 

[Brucie]

Hi Nat

well I've been on TP for quite a while now, but have never got around to saying much of what you have put into words here.

I agree almost entirely.

Jan too is at Stage 7 and I think she might even last another 10 years, or it might be 10 minutes. That's the thing, we and they are in a cycle that is undeterminable in terms of time; our time is on hold in some way and there's nothing we can do about it.

I have to say now after thinking about it that my wishes for Dad to move on are most probably entirely selfish. Its me who doesn't want this nightmare to go on. Its no longer a nightmare for Dad (it was initially), thats not saying he doesn't know what is going on, I'm pretty sure he does, but I guess he's adapted and I haven't. This is just a different way of life for him with different challenges, different frustrations and different rewards.

I certainly don't want to cause you more fears but I do believe it is a nightmare still for Jan. I have to read her expressions and body state as she can't speak and her eyes are no longer quite right. But I can see that, though she is managing heartrendingly well, she is locked in hell and managing the only way she knows how.

Wish I could get a load of your epiphany.

It's our 37th Wedding Anniversary today. I'm taking in red roses she can't see or understand; a card she can't see and won't understand when I read it to her.

...or maybe she will. How can we know?

 

[Michael E]

My father was 97 when he died - At he time I thought he had senile dementia - following several heart attacks - probably was but a lot of the symptoms are/were very Alzheimer's...he spent the last 8 years or so in a home. My mum had to put him in a home when he became incontinent and sometimes violent - I was the one who had to take him...

All those old folks sitting round in a circle with the TV blaring away and nobody watching - he could still laugh and twinkle sometimes but the 'home problem' is that nothing happens..... He didn't know who I was half the time but I think still recognised my mama who visited him 3 or 4 times a week - I only visited weekly - one and a half hours drive each way and then nothing to say - dreadful

He hated it in his lucid moment - At an early stage he asked me to 'do away with him' - I said if he asked me another couple of times, I would... He did ask a 2nd time - later and I said 'ask again' which he never did - either went off the idea or his head got so bad he couldn't formulate the words or concept... But I do agree with him - it is not worth going on when there is nothing and I think the real ADs have a worse time with confusion and fear of confusion and know knowing whats going on.

I think it is natural not to want your loved ones to continue lost in the mindless wilderness - I was sad when he died - early one morning - alone - but relieved for all of us... and he was out of it... Not sure what is right or wrong but I am certain nobody should suffer when there is no hope and we should not want them to. To my mind to hope for their timely release is human and natural and are not feelings to be ashamed of -

 

[jc141265]

Just putting it out there...

"To my mind to hope for their timely release is human and natural and are not feelings to be ashamed of"

Don't you have to take care though that they are just that though?

"human and natural and are not feelings to be ashamed of"

What I realised today in my and Dad's situation, is that I don't think that my 'hope for his timely release' was the kindly, good-intended feeling that it might be for others.

That feeling can be a good human and natural feeling not to be ashamed of, BUT it can also be a more selfish, self-involved, self-focused feeling, where you say to yourself, if I were in his shoes I'd want to die....where you don't truly consider their state of mind at this point, .....again not a feeling to be ashamed of, but perhaps a feeling to be aware of and cautious of?

In Dad's case at this point I don't think he is suffering anymore than a mentally disabled child is , or a man who's lost both his legs (and many quite rightly so would be furious at me for saying they are suffering). I'm not saying that he won't again return to a period where he is miserable and just wants to die, and I'm not saying he wasn't there before,...he was. But I realised today that I need to take a step back and stop seeing his plight through my eyes, through lenses that remember how miserable he was earlier, through lenses that know that worse is to come.

I'm not saying it is selfish to want them to die earlier, I'm just saying that sometimes it is and sometimes its not. And when it is selfish or at least self-involved, maybe its time to take a deep breath and step back for a bit.

And then maybe, I'm just saying all this because today I realised I may need to be strong for a whole lot longer than I expected, and thus I need to stop focusing on the hope that it will all be over soon and start focusing on continuing to survive watching this disease take a sledgehammer to my father while I watch on helplessly.

Perhaps I'm just rationalising things to myself??

 

[Michael E]

Sorry - I think I expressed myself really badly -

I would drive to the home and as I walked though the door a feeling of lethargy would overcome me - I would try hard to communicate - to respond - but he really did not know I was there - as his son - when I left I would just be sad but relieved to be out of it...

I used to look at my dad's life style in that home - empty, confused, lonely (in a crowd) and so nothing of the person that once was and know that if it were me I would want out -

All this is 20 years ago so its hard to remember exactly, except to say - when finally he died I was so sorry he was alone but relieved for him and my mother my sister... and me.

Maybe we genetically programmed to 'let go' of our loved ones at a certain point - I remember it felt a bit like that... Still think of him and his picture (along with lots of others) is in my screen saver random pictures - Nice man.

 

[daughter]

Hi Nat,

My Dad is still in Stage 6 and I have absolutely no idea how I'm going to cope when he is in the next stage - and not knowing for how long he'll be there. At the moment I can visit Dad and often come away feeling almost elated. A smile from him, a song, an awe-struck comment on the size of a huge tree. These fleeting, miniscule moments keep me happy to visit, even if we also get bad days...

How on earth am I going to find the resolve to visit when Dad no longer displays these behaviours? When he becomes completely immersed in the dementia? It's a rhetorical question, of course - no answer, as yet. When/if we get there then I might be able to comment on yours, and Bruce's (and all others with relatives at Stage 7), plight.

I bet the roses are lovely, Bruce. Thinking of you all.

 

[Norman]

Hi Nat
I am in a totally different situation,I still have wife at home,I swore that she will never go away.I still maintain that view.
I have all the same feelings and thoughts mentioned,I think we are 6/7 stage and I dread the next progression.
I do know that I have never worked so hard in all my life,but at the present it is like walking on egg shells.
My sweet wife can turn into an evil horrible person in a split second.
I then get the verbal abuse,drop dead,jump under a bus,cut your throat,how did I ever get mixed up with you,and to my surprise the other day"up yours"
This really hurts and this is when I have those thoughts
Seven years and she could well outlive me yet.
I cannot decide if those thoughts are selfish,who are we wishing for ,us or them?
It's no surprise to me that we all think alike at times ,we are after all very ordinary weak selfish humans.I certainly am.
Norman

 

[Brucie]

very ordinary weak selfish humans.I certainly am

I think if you review what you have done over the past years for Peg you are not......

ordinary

weak

selfish


...frequently it is the case that those who think themselves these things are the last people to be so. It is called humility.

Norman, I know it must hurt, but there is a certain sign of wicked humour when they use terms totally alien to them to shock... "up yours" for example. As the dementia makes it more and more difficult for them to communicate, I think they redouble their efforts to get through to us, and while Jan is past the use of words to break through, she does shout things occasionally, as if making a major push at a closed door.

 

[Michael E]

Norman hi,

I read your post last night and could not get it out of my head - the anger is a real bitch -

Monique, I have decided, a few minutes ago from doing the Poll, is at 6 - earlier the bad temper was a big problem but I have been lucky recently - mainly gone, except a few days ago she was hating being in Bordeaux and I started to drive the hundred miles back about 9.00 at night - Monique berated me the entire journey - non stop anger at us having gone at all - it was all so OTT that I could rationalise it and just think 'its the illness' but none the less drove at 90-95 in order to get back fast (except through the speed traps )

To have it so often as you do is awful - however much you rationalise it somehow it gets to you. I cope by saying nothing but of course I am afraid that a lack of response only aggravates it... So difficult - so sorry its happening to you - Quite amazing some of the expressions our 'ladies' have picked up - I am sure Brucie is right that they do try to shock - to say anything to wind us up - get a reaction - to ..

 

[rummy]

I have recommended this book before in post but will again. It is the "Validation Breakthrough" by Naomi Feil. She is brilliant in her explanation of how and why AD patients do and say the things they do and they was to respond that will most help the situation. It has been so beneficial to me in dealing with my Mom.
Perhaps it will help you through those difficult times.

Debbie

 

[Norman]

Debbie
thank you,I have not read that one but will try to get it
Norman