30 years -no celebration

[PalSal]

Hello TP friends,
As so many of you have shared, it is the sadness of a celebration that never happens. Today is my 30th wedding anniversary. No one remembers it, only me. Of course, it is not a date my kids remember, most people do not remember the dates of other people's weddings so it is no surprise.

It will be a day like all the other days, of duty and remembering my promises. I occasionally feel something like love for this person I live with, not sure what I feel anymore. Mostly numb when it comes to him.
I have spent more than 50% of this marriage living with Alzheimer's, and slowly being robbed of my partner in life to become this vacant shell of the man I married. I am doing what has to be done, sustaining a balance to stretch the finances to cover this long long long goodbye.

Tomorrow, I am scheduled to go look at the carehome which sits on the village park, just a couple of streets away from our home. We cannot afford for him to go into care as yet. (he is extremely healthy and fit physically) He is now going to be 68 next month, he was 49 when we figured out something was wrong. The carehome wants all his details so they are prepared for when I am finally ready, or in case of any emergency where he must come in. It is very selfish, I am not ready because I do not wish to live in poverty. The cost of his care here (room and board minimum 91,000 CHF per year , nursing care on top of that) would break me in a matter of a few years.... I m also considering bringing a carer from the EU in to live with us, it is slightly cheaper than him going into a care home. But it would mean I would have someone in my house all the time. Not sure how I feel about that. But I am still managing. Although, sometimes at the end of the day I am too tired of life to even put him in his pjs. Recently, he has slept in clothes a few nights, because I could not get the energy to put him to bed properly.

So, I keep trying to stay positive and being prepared for the next steps and inevitability.

 

[Olliebeak]

Nothing to say really PalSal. Only to empathise with everything you say and that everyone on TP is with you. Virtual hug x ?

 

[Woo2]

? From me too.

 

[jenniferjean]

It is very selfish, I am not ready because I do not wish to live in poverty.

This is how I feel. I tell people that I want to keep my husband at home for as long as I can. I feel that I am best at keeping him safe and happy. But am I? Am I just being selfish because I know that my own pension would not stretch as well for me as our two pensions keep the two of us. I just keep burying the idea of him going into full time care. Unfortunately we do not have the room for a full time carer living in.

 

[marionq]

@PalSal and @jenniferjean your concerns over finance are not insignificant and not uncommon. None of us know how long we will live if our partner or parent goes into care and the sums involved are horrendous. John stayed at home with me for seven years until he broke his hip. This led to a month in hospital and then a transfer to a nursing home where he died some days later. At the time of his dying I had a sheaf of papers to fill in about his finances. Our house is jointly owned so couldn't be touched and his savings and pensions would have been taken but would have needed LA assistance. It was obvious to me that an examination of months of our bank statements would show that I had the greater part of our savings.

I have no doubt that had he lived I would have been under pressure to disclose more of my affairs. This was a worrying time and John put an end to that worry by exiting this world. There is no easy answer to this dilemma.

 

[PalSal]

Yes, thanks everyone for your response.
Finances drove me to work hard, and the steep learning curve of managing our finances, and get all the kids through uni, and launched into their lives. That happened and I am grateful I was able to to that for the children. It would be nice if I did not worry about finances so much, but it is in my nature to do so. And now that I am no longer working and living on fixed income, I am keenly aware that the cost of everything is quite high.
A young woman who I gave her first corporate role in Switzerland, when I was a high level manager, asked me if I would like to come to work with the company she is in now. I thought about it, I would still have to care for Nick and all that organizing so I could go to work. But it was lovely she asked me, she knows my abilities and thought I could be an asset to her current company. Never say never I am still kind of thinking about it.
We are very fine at the moment....all is well, but the next stage will be costly.
@marionq it is so sad John passed, but it is wonderful he did not linger once he broke that hip. It would have been nearly impossible to recover from that. I would be grateful for a similar solution. Frankly, I would have been so grateful if my husband would have taken the Terry Prachett approach and used Exit. Terry Prachett worked as long as he could with the disease but as that organization can only allow assist death when one has full understanding and comprehension....we are long long long past that. My husband always thought it was all going to be ok, he just buried his head in the sand and refused to understand what it would mean for me and the children to care for him ....for so so long. We are more of the Still Alice scenario. By the time he lost it, he couldnt remember he'd lost it....too late for Exit.

 

[PalSal]

It was a happy day. I got the pictures out. And his state of the art proposal. After the San Francisco Earthquake...he proposed. We were in the industry in Silicon Valley early adapters. When he proposed I told him , should be on his knee. And I would think about it, but to try again later.
So, he emailed me from Kuala Lumpur and said" I am on my knees the laptop is on the bed."
It made me laugh to think about it all today. We got married in my little house and garden in Alameda California. I think his very proper English family found that very amusing. And we married on a Sunday.

 

[millalm]

@PalSal Someone needs to say

Happy Anniversary to you !

It is the marking of a very happy day in your life, your lovely pictures are a testament to that. I'm sorry life has turned out to be so very hard.
I'm glad that the memories have brought a smile for you today.

 

[Kay111]

Gorgeous photos @PalSal !!
Wishing you a very happy 30th anniversary.
xxxx

 

[Canadian Joanne]

Such lovely photos. I'm glad you've had happy memories for today.

 

[White Rose]

Hello @PalSal , I was thinking we hadn't heard from you for a while. Happy Anniversary, the photos are beautiful. We just never know what roads our lives are going to take do we. I am so very sorry that you've both had to live with this horrible disease for so many years. It makes me want to cry every time I think of the lives ruined by this cruel, heartless disease. You'll make the right decision when you're ready, perhaps have a trial with a live in carer if that's cheaper, you would then be able to go to work if you wanted to. Maybe it's time to get your life back, taking one step at a time and see where it leads.

 

[Vitesse]

My very best wishes to you @PalSal. Our 30th wedding anniversary is coming up in April, and I am dreading it. Over the years, we have not made any special fuss of anniversaries, but this year I am so sad. Unlike you, this is our second marriage (no fairy tale proposals, just practicalities) and my husband is much older than yours. He has no idea who I am and tells me daily that his wife has died!! So when April comes, I can’t even talk to him about the day, and some of our other memories. I constantly worry about the future, and whether I can keep on looking after him. The idea of thousands of pounds being spent on care homes fills me with horror, and i resent the fact that I may have to forego things in the future. Some friends were telling me they have a live in carer and it works well. So worth thinking about if you have the space.
best wishes
.