Two years to get this bad. What now?

[Grahamstown]

No you are normal. It’s not normal to give your own life up to for someone else! We do it gradually until it takes over completely. I kept trying to get help for my husband but he wouldn’t accept anyone he just wanted me!
Everyone needs their own space and time or we go insane and you can’t look after them because you are too ill then yourself.
Because I had to have an operation on my eye in August my husband had to go into respite and he is still there. It’s still hard Because I do feel guilty but I don’t feel as stressed. I do go out now with friends and family I can see my baby grandson and look after him which was difficult before. My husband is clean now and well fed and seems reasonably settled. He thinks he is on holiday but can’t understand why I’m not there all the time! It will never be easy. But I feel I am recovering and planning a holiday with family. I couldn’t have taken him on holiday anymore as it would have been too much for him and everyone else! The lastholiday we went on was a Warner’s weekend last April which was a nightmare for me I came home exhausted and he couldn’t remember going on holiday!

I must remember your words because I am approaching a watershed if not a crisis and at the moment just keep going. This thread now resonates with me because it is two years since I first posted feeling that I was ‘becoming a carer’ when previously I had been his wife, even though I was beginning to get concerned about his memory and driving. Now I am a fully fledged carer and I hate the restrictions on my life. Even though January 2020 is exactly the same as December 2019, it’s a psychological change as the year stretches ahead and I say to myself ‘don’t go there’.

 

[White Rose]

AL60 - so much of what you say resonates with me. I look at other older married couples doing things together and really envy them. I would have loved to travel now that we have more time, but I took my husband abroad last year and it was terrible - he was so disorientated and difficult to manage that I will never do that again. The thing is I'm 67 and full of energy and have a lot I want to do, but being dragged down by endless waking at night is sapping that energy, and I've started to feel very resentful. I hate all the repetition about every single small task, and I'm gradually eliminating all the things he does that go wrong (eg putting things in the wrong recycling bin). It sounds so petty to anyone else, but when you've had the same conversation 10 times within half an hour you have to have the patience of a saint not to snap. Sometimes I have to laugh about the way he insists that Savlon is a glue and he repeatedly tries to stick things with it. The endless 'searching' is what irritates me the most - he spends a large part of most days looking for something, but he doesn't know what it is so of course he can't find it. What he's actually looking for is his missing memory. Yesterday he could no longer tie up his shoelaces, he dresses himself but that frequently means two pairs of trousers and two jumpers. In essence the problem is this - I would never have chosen the job of carer, I just don't have the patience for it. It's forced on me because I'm his wife, and I do love him but I hate the way being his carer is making me so irritable all the time. I've had counselling for depression and the counsellor assured me that it was normal to feel this way. Trouble is I have a life-limiting condition, I may have another 8 years of health, and I want to go out there and live my life while I can. I feel that so many people on this forum are so saintly and self-sacrificing, and all I can think is when can I have a holiday. I guess I'm a bad person, or am I normal?

@Stayingalive I could have written much of your post, probably have done somewhere on TP, I have definitely written 'I would never have chosen the job of carer....' I'm lucky that I don't have health problems myself (not yet anyway) but if I were you I think I'd be terrified of losing any time at all being a carer. A few months ago I was telling myself I could manage a couple more years, then it was one year, now it's 'how many more months can I go on', I hate this life of being a carer (I don't imagine there's anyone that actually likes it), I'm always torn between feeling desperately sorry for him and hating him for what he is putting me through. He'll come up to me and tell me he loves me (he never said that pre-Alzheimer's!) and I think to myself 'yes of course you do because I do everything for you and you can't do a thing for yourself', it's so fake, he's asked me to marry him a couple of times since being diagnosed but he never asked me before!! He's been a miserable, angry sod today just because he's had to share me with my mum and my auntie and hasn't had me all to himself! Go off on your holidays and put your husband in respite, I think I'll be doing the same soon!

 

[jenniferjean]

He'll come up to me and tell me he loves me (he never said that pre-Alzheimer's!) and I think to myself 'yes of course you do because I do everything for you and you can't do a thing for yourself'

Yes, come to think of it that's something my husband says to me when I'm dressing him.

 

[AL60]

His everyone. It's been a number of months since my last post on here. The last time was at the new year from new York. Who would have thought how things would have turned out. These are really unprecedented times. For me , i feel very fortunate in that in the borough I live is relatively untouched. That's for now. All I can say is at presrent my wifes care home is untouched by this virus. Hopefully we'll come out on the other side unscathed. Ive not been allowed a visit for several weeks now but it's for the best.
These really are difficult times and for me personally its not easy But for many life must be absolute hell!

 

[Cat27]

Lovely to see you @AL60. I‘m glad to hear you & your wife are both well.

 

[canary]

Hello again @AL60 . These are indeed unprecedented times. Im glad your wife is OK in her care home

 

[Philbo]

Hi @AL60

Nice to see you back on here.

As you say, a lot has happened since then and so glad to hear that things are pretty stable for you both.

Sadly, my dear wife Lyn passed away in the nursing home in January but in a way, I am relieved that we didn't have to go through this latest situation.

The downside is that it's made it incredibly difficult for me to come through the grieving process, with the support network I had established during these last 6 years now only being available remotely.

I sincerely hope that things remain safe for you and your wife.

Best wishes
Phil

 

[LynneMcV]

Hi @AL60 - I am glad to hear that you and your wife are both doing ok.

 

[jugglingmum]

Hi Al - glad to see you posting and that things are OK with you.

 

[jenniferjean]

Hi @AL60 , it's great to hear from you after such a long time. I'm glad you are ok and that your wife is doing ok in the home. Have you been able to speak to your wife on the phone?

 

[Grannie G]

Hello @AL60. It`s always good to hear updates especially when they are good news.

 

[Agzy]

Hi again. Certainly wasn't intending to post again so soon. But as it's the wrong side of midnight and once again find sleep isn't coming easy tonight, this seemed a good idea. It's looking to me as though we really are all in this together. So many similarities everywhere on this site. It could be seen as depressing, or, it could be seen as a wealth of useful information. I have a question, and I know someone, somewhere out there will have a number of ideas and suggestions for me. Mealtimes are becoming a nightmare. Just lately the food smells funny, it's too hot ,it's not hot enough, is this the one we normally have, it just doesn't taste right, the plates, cups etc smell perfumed. To me it seems just an excuse not to eat. And believe me it's any excuse not to eat. But any amount of junk goes down a treat. I know the obvious answers, don't buy the crisps, chocolate, cake and biscuits. You try stopping her. It's like having a very grown up child. If food isn't hot enough, heat it, no, can't have that. If it's too hot , let it stand, good grief no, can't have it its too hot. You just can't reason with her. And that's only meal times. This isn't working, I'm even more awake now. The reason I'm concerned about her lack of normal appetite is over the last couple of years she's lost about forty lbs give or take. It's important too that she has a nutritional diet now more so than ever. But try telling her that. I know that there are lots of things I could try but one of the problems is that she doesn't like change. Just keeping to the tried and tested isn't working. If she had the choice she'd have beans on toast every meal. I've wondered if the dementia has altered her sense of taste. Anyway, best go now. Croissants for breakfast, can't go wrong there, can I? Al

My story with my OH, Pauline, almost mirrors yours as I am sure do many others and in my case the food issues too! Yesterday, after a lifetime of being a “Tea Belly,” she said she hated the stuff and never again wanted it and sticking to water, so I said ok and the day passed. This morning after I had got up and wished her good morning (her bed is downstairs now) she got angry and asked where her cup of tea was, ?. Another day another taste change except for Weightwatchers tomato soup which, if she had her way would be her evening meal forever.

 

[Bikerbeth]

Glad to hear you and your wife are doing ok

 

[AL60]

Hi everyone once again. The number of times I have started to post here and ended up staring at a blank screen thinking how to start. This one's no different but for another reason. This is the one post I've been dreading for a long time. It's with great sadness I announce that my wife passed away earlier this morning. After my rather upbeat and optimistic last post she had a positive corvid -19 just over a week ago. Yesterday morning I received a call from the nursing home to ask if I would like to visit as she had deteriorated overnight. How could I not. It was the first visit since before lock down. I won't go into any great detail other than to say she was comfortable and not in any distress. I've had a long time to prepare for this moment and I honestly thought I was ready. How wrong was I. It's strange how all this time I've been grieving about what we've lost now here I am once again grieving all over. Anyway, at least now she's not suffering from dementia in a strange unfamiliar place. She's now in a part of me forever and no virus or dementia will ever take that from me. this is my last post on this forum. I can honestly say it's been great to download here and share, I've lost count of the number of times I've said, a problem shared and all that. But it's true. I could well turn up on a different forum but I think I've been Al60 for a little too long now there are limits. One day soon I'll smile again and mean it, so thanks again for being there. Al (21again)

 

[canary]

Oh @AL60 Im so sorry for your loss.
Im glad you managed to say goodbye to her and, yes, she will remain part of you for ever
((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))

 

[Batsue]

So sorry to hear your sad news, sending you my condolences.

 

[Bikerbeth]

So sorry to hear your sad news but glad that you were able to visit your wife and it must be a comfort of some sort to know that your wife was not in distress.
I hope you do find that smile again and that your wife will remain a part of you forever
Lots of hugs to you

 

[Izzy]

I’m so sorry to read your news @AL60.

She's now in a part of me forever and no virus or dementia will ever take that from me

Such a moving sentiment,

I hope you keep coming to Dementia Talking Point. I know that many members, including myself, have found comfort and support following our losses.

Whatever you decide I wish you strength.

 

[Shedrech]

sad news @AL60
somehow however much we expect this, it's always a shock
I'm glad you were able to be with your wife
and hope there's comfort for you in seeing she was comfortable

 

[Sarasa]

So sorry to hear that news @AL60 . Thinking of you and your family