Living the long slow decline

[PalSal]

I feel very guilty most days. We have been living with Alz for over 10 years now, as I am not sure how many years I was doing it while he was undiagnosed. He was about 49 and he will be 61 in April.
I work and have the burdens of our finances which when we were a married partnership, he handled the finances.
Finally, all the children will all be finished with their educations this year. Our youngest will graduate in June.(he was 11 when his father was diagnosed with Alzheimer's)
My husband was and is a dear kind man, and if the shoe were on the other foot he would be there for me. He still trys to help around the house, laundry and washing dishes. But the last few years that is fairly problematic.....things rarely get put where they belong.
We had fun for many years and but I still feel a bit cheated, I am not as angry at life as I was 5years ago.....I just feel very hopeless as we continue on this terrible and inevitable decline. I do my best to stay in the day and enjoy the moment, these 24 hours. But it does not keep me from feeling cheated at some level and abandoned (although this is my stuff and I know it).I am much more desparate than he is, he forgets how desparate it all is....and he never wished to understand where Alzheimer's was going to take us. I am informed.....which makes me feel hopeless and desparate. I do have a few excellent friends who keep me going and help me with things I cannot do myself. But I feel to young to be buried alive, but bound by doing the right thing. I cannot imagine what he must feel but he was never good at sharing his feeling. Where we live there is no support for him, so I solicit the help of friends and occassionally pay for help. Luckily he does not need to much help yet. Thanks for letting me share.

 

[Izzy]

Hi Pal Sal.

I can totally understand how you are feeling. Although my husband is older than yours I am 21 years younger than him. We have been living with dementia for around 13 years now. I know all about living in the day and for the day but like you I sometimes find it hard. Just wanted to say I empathise and wish you much strength to carry on. I'm glad you felt able to share on TP. x

 

[sleepless]

Same here, PalSal.
For us it's 11 years, so a very gradual loss of the man he used to be. So gradual that I hardly noticed the changes for a long time.
This past year has been different, and on the odd occasion that I am 'free' it can feel so strange, not to have to explain, cajole, watch over, placate, and all the other things that steal any sense of space for just me.
Like your husband, mine is a kind and gentle chap who also likes to help, with varying results! And he has never been interested in reading up on his condition and the likely outcome.
I don't often think of how things would have been but for the Alzheimers', I think because it has been such a slow process up until recently.
It must be so difficult to have a young family and cope with what you have, and you should be proud of how you have dealt with this cruel change to what you should have all had together.
As Izzy says, I'm glad you have shared this with us on TP
best wishes, sleepless.

 

[CJinUSA]

Hello PalSal, Izzy, and sleepless. It sounds very hard, what is happening for you. When I read your posts just now, I remembered seeing a story on CBS (in the US) about Barry Petersen, a newsperson with CBS, who had married his wife Jan because he loved her spunk, wit, and spirit. And then she got Alzheimer's. Barry did a few news documentaries here about his situation. He eventually even reported on the woman who has become his partner who helped him deal with his everyday loss of his wife. It's a complicated, difficult journey, I gather from your posts and from what I know of what Barry Petersen has revealed. He has gone on to write a book about his situation, and he is well aware that it's just one person's story. It's called Jan's story. I found a website about it, and there are some links there. I don't know whether you are readers or not, but maybe knowing that someone who has some important celebrity over here is writing and talking about it will make it feel less lonely and unacknowledged, the sacrifices you are making right now. Here's the link -
http://barrypetersen.com/blog/

 

[Izzy]

Thanks for the link. Sounds like an interesting story. I'll have a look at it.


Sent from my iPhone using Talking Point mobile app

 

[jeany123]

Palsal I can understand just how you feel, my husband is 66 he was diagnosed with vascular dementia when he was 60 but had had it at least 10 years before that, a triple heart bypass made it worse 10 years ago when our youngest son was 15, he is now 25 and graduated a few years ago,

we had all sorts of plans for when we had retired but none of the plans included dementia, he thinks there is nothing wrong with him and I am sure that his strange behaviour which I put down to eccentricity affected our children greatly and affected me as I was always trying to cover up things that he said and did,

My 4 children, 2 are Allens and 2 who I had when I was with my first husband and their partners and children have helped me enormously I don't know what I would have done without them, But life isn't easy is it? I also feel cheated,

Best wishes Jeany x

 

[Grannie G]

Hello PalSal

There is so much sadness in your post. I identify with you as I`m sure does any other partner whose life changes from sharing to caring.

My husband had dementia for nine years from diagnosis although I believe he had it for fifteen years altogether. Even though life was very hard we didn`t have dependent children during his illness and so I was able to concentrate just on him.

You have lived through tremendous strain and all credit you you for being there for both your children and your husband.

 

[jaymor]

Hello PalSal,

Like those who have posted before me I can identify with you so much. I was just a few months off retirement when my husband was diagnosed with Alzheimer's at the age of 62. Like many others the signs had been there for several years but we put it down to my husband running his own business, working long hours and stress in general.

I felt very cheated, we had bought up 2 children, had 3 grandchildren who we had helped and this was going to be our time. I was to have 3 years where I would have all the time in he world to do what I wanted to do and then at 65 my husband would be joining me in doing what we wanted together. We had saved and organised for this wonderful retirement, even thought of joining my brother living in the middle of no where in Southern Ireland. Now we had a future that neither of us wanted to see into.
I felt cheated of our retirement but I felt really angry beyond words that my husband would not have this time that he had worked so hard for.

This all happened nearly 9 years ago and how we got here I have no idea. Where it changed from sharing to caring I don't know. We have always atken it one day at a time, enjoying the good days and tolerating he bad ones.

My husband is now in nursing care, he does not know me and I visit every other day. We still have the good days and the bad days but the staff help so much, I have to say what a difference they have made to my husband's life and our family's life.

Not the life we envisaged but still taking it a day at a time.

TP has helped me so much and hopefully knowing so many are there with you will help you too.

Take care,

Jay
.

 

[Izzy]

What a lovely post Jay. One day at a time is certainly my mantra. x (Out of habit I typed 'our' mantra then I realised it's mine not 'ours' any more.

 

[Lindy50]

To Paulette 395

What a lovely post

I hope that you do not feel that your life's journey has ended with your loved one's. and I do take your advice on board. Personally I often need someone to tell me to take a break, in my own interest and in my mum's (although she can't see it).

So thank you And wishing you all the best for the next phase of your life

Lindy x

 

[MissBB]

My journey with a relative who had dementia has ended at the moment, but I feel I must try to help all the people posting here. I was helped a lot when trying to care for my dad who has thankfully been released.
My one piece of advice is not to sacrifice all your dreams

Thank you. I found this very helpful. I struggle like so many here with guilt. And the worry is that when my mum is gone I will feel like I should have done more.. With a 6 yr old child and living 150 miles away I'm trying my best - but it never feels enough. Your post is helpful - you have been on this journey and with the advice that 'don't let it take you down with it' I think I needed to hear that. Thank you x