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Dementia’s journey

CAL Y

Registered User
Jul 17, 2021
355
0
Like living with dementia, you don’t know until it happens to you, well, the same goes for the care home. I would see your posts, but they didn’t apply to me, or so I thought, but really we are only a crisis away from it. Now it’s a different story, and the guilt is such a weight, that I couldn’t cope, that I chose my mental health over his, and don’t start me on the bitterness I feel, for having my life taken away, to have to work to survive, no husband to share the burden of a health scare. I cry at the drop of a hat now, and dementia is really my whole world. What will I do when it isn’t? sometimes I want to shout at him, what about me? But at the moment, it’s still all about him, and he just doesn’t understand. I told him I had a breast lump, and he said I do too much running around! Turns out it was a blocked gland, but I didn’t want to belong to 2 clubs. The dementia club is enough for now.
@Thethirdmrsc . I really do feel for you. You are right to choose your mental health first. At least that can eventually be mended. “What about me” was a cry I used very often.
”Dementia is your whole world” what will you do when it isn’t.”
I can tell you.
My husband died just over 7 months ago and I am now in the process of reclaiming my life.
As much as I still grieve for him I keep it mainly to myself because I know from
previous experience …now twice widowed….that people, no matter how close they are as friends, after the first couple of months have got over it.

I have chosen not to feel any more guilt .I cared for him at home until his last breath and he is still here with me, in the garden under the apple tree. A great comfort.
I took myself on a foreign holiday 3 months after MH died and have now just got home from a couple of days away where I visited the places we went just before he was unable to do any more.
I wish you strength to cope with whatever is ahead and that goes for you too Peter, please try to stop this feeling of guilt. Bridget has been a lucky woman to have your love and in spite of everything, we have to either go on or go under.
I wouldn’t mind betting that she would be very cross with you for choosing the latter.
 

Thethirdmrsc

Registered User
Apr 4, 2018
668
0
@Thethirdmrsc . I really do feel for you. You are right to choose your mental health first. At least that can eventually be mended. “What about me” was a cry I used very often.
”Dementia is your whole world” what will you do when it isn’t.”
I can tell you.
My husband died just over 7 months ago and I am now in the process of reclaiming my life.
As much as I still grieve for him I keep it mainly to myself because I know from
previous experience …now twice widowed….that people, no matter how close they are as friends, after the first couple of months have got over it.

I have chosen not to feel any more guilt .I cared for him at home until his last breath and he is still here with me, in the garden under the apple tree. A great comfort.
I took myself on a foreign holiday 3 months after MH died and have now just got home from a couple of days away where I visited the places we went just before he was unable to do any more.
I wish you strength to cope with whatever is ahead and that goes for you too Peter, please try to stop this feeling of guilt. Bridget has been a lucky woman to have your love and in spite of everything, we have to either go on or go under.
I wouldn’t mind betting that she would be very cross with you for choosing the latter.
Oh bless you @CAL Y for those lovely words. One day i will walk that path of comfort!
 

Dutchman

Registered User
May 26, 2017
1,821
0
74
Devon, Totnes
@Thethirdmrsc . I really do feel for you. You are right to choose your mental health first. At least that can eventually be mended. “What about me” was a cry I used very often.
”Dementia is your whole world” what will you do when it isn’t.”
I can tell you.
My husband died just over 7 months ago and I am now in the process of reclaiming my life.
As much as I still grieve for him I keep it mainly to myself because I know from
previous experience …now twice widowed….that people, no matter how close they are as friends, after the first couple of months have got over it.

I have chosen not to feel any more guilt .I cared for him at home until his last breath and he is still here with me, in the garden under the apple tree. A great comfort.
I took myself on a foreign holiday 3 months after MH died and have now just got home from a couple of days away where I visited the places we went just before he was unable to do any more.
I wish you strength to cope with whatever is ahead and that goes for you too Peter, please try to stop this feeling of guilt. Bridget has been a lucky woman to have your love and in spite of everything, we have to either go on or go under.
I wouldn’t mind betting that she would be very cross with you for choosing the latter.
Me too Thanks @CAL Y. Bridget was always the realist. Good to imagine her saying stop being so miserable and just do what you’re doing
Peter
 

Dutchman

Registered User
May 26, 2017
1,821
0
74
Devon, Totnes
I must try to describe a fairly new sensation that I’ve experienced lately. It’s one of numbness.

I can’t quite retrieve the feeling of emotions like loss, longing and heartache that we’re the “glue” that made missing Bridget so intense. Of course I don’t want to be tremendously miserable and have that level of grief felt 2/3 years ago but, I’m not only losing Bridget bit by bit, I’m also losing a feeling of closeness that grief kept alive.
Does this make sense?
Peter
 

Andy54

Registered User
Sep 24, 2020
165
0
I must try to describe a fairly new sensation that I’ve experienced lately. It’s one of numbness.

I can’t quite retrieve the feeling of emotions like loss, longing and heartache that we’re the “glue” that made missing Bridget so intense. Of course I don’t want to be tremendously miserable and have that level of grief felt 2/3 years ago but, I’m not only losing Bridget bit by bit, I’m also losing a feeling of closeness that grief kept alive.
Does this make sense?
Peter
Yes it makes sense to me, I find that what you describe is intermittent for me. not so much letting go, more like compartmentalising life so that I have days when I can do things for myself and not be dominated by the sense of what has been lost.
 

CAL Y

Registered User
Jul 17, 2021
355
0
I must try to describe a fairly new sensation that I’ve experienced lately. It’s one of numbness.

I can’t quite retrieve the feeling of emotions like loss, longing and heartache that we’re the “glue” that made missing Bridget so intense. Of course I don’t want to be tremendously miserable and have that level of grief felt 2/3 years ago but, I’m not only losing Bridget bit by bit, I’m also losing a feeling of closeness that grief kept alive.
Does this make sense?
Peter
Yes Peter. That, absolutely does make sense. In my experience, I believe that we can’t sustain that level of misery and grief. Maybe it’s our minds protecting us.
After all, do any of us want to be that unhappy for the rest of our lives.
Our lost loves ones would want us to go on living as good a life as we are able.
 

Dutchman

Registered User
May 26, 2017
1,821
0
74
Devon, Totnes
I’ve absolutely no one else to turn to except for my friends here for advice. I don’t even know if I’ll reach anyone.

The dilemma is this: I went to see Bridget today and she was so excited to see me , like a pet does after being left alone. She was holding my hand hard, squeezing it and altogether very focused on me arriving. Now, you could say that’s great and wish me well but, it just heightens the feeling that she misses me and I should go more often than I every other day. But how long could I keep this up?

Of course I love to feel wanted, who doesn’t? But I dread to imagine that she misses me, not as Peter her husband, but as someone she likes to be with, even if it’s just 90 minutes at meal times. Why is it so difficult making these decisions? It’s so tiring. I just want someone sometimes to tell me what to do.
Anyway, that’s my angst for today
 

Ekaterina

Registered User
Aug 22, 2021
10
0
Hello @Ekaterina

Really sorry to hear what you’re going through. Many of us here have been more or less exactly where you are now and can almost understand what you are feeling. We’re all different but love is love.
Practically I would say that it wouldn’t hurt to put in place some support on the eventual day when your love one leaves for care. I know it’s hard but believe me it’s even harder when you’ve no one ( like I had) and your world is falling apart. You need someone with you during those early days.
Ask any questions here practical or intimate as we’ve all had our corners knocked off and seen or heard it all before and can help get you through this much more easily
Peter
Thank you for your kind words ☺
 

Ekaterina

Registered User
Aug 22, 2021
10
0
Hello @Ekaterina

Really sorry to hear what you’re going through. Many of us here have been more or less exactly where you are now and can almost understand what you are feeling. We’re all different but love is love.
Practically I would say that it wouldn’t hurt to put in place some support on the eventual day when your love one leaves for care. I know it’s hard but believe me it’s even harder when you’ve no one ( like I had) and your world is falling apart. You need someone with you during those early days.
Ask any questions here practical or intimate as we’ve all had our corners knocked off and seen or heard it all before and can help get you through this much more easily
Peter
Thank you for your encouraging words. 🙂
 

Dutchman

Registered User
May 26, 2017
1,821
0
74
Devon, Totnes
I haven’t written on this thread for a while because, well, I just feel I more or less have to get on with it. I’ve no other choice really.

I’m lonely, I don’t mind admitting, but on this Forum I’m talking to similar sufferers so I guess you are too sometimes. I do tend to isolate myself as it’s easier that way.

When we were ok, before dementia, we had each other for companionship and no real need to actively make friends. If we did we did. The dementia wore away at socialising and it was all I could to keep the few friends we did have.

So today I feel depressingly lonely. Being jolly and upbeat feels a bit disloyal to her memory. And I feel so unhappy for her situation because here is my wife brought down by dementia and looking so frail, vacant and defeated and resigned to her lot. Where before she was strong, determined, articulate and so knowing and loving.

How did we ever end up like this? The drip feed of dementia that slowly turns our love ones into a stranger. I sometimes think it would have been better if she’d had died suddenly instead of this long drawn out decline. That’s clean, dementia is dirty and cruel
 

Thethirdmrsc

Registered User
Apr 4, 2018
668
0
How very true. Someone in our family group said that to me last month about being on my own, if he had died. So I’ve thought about it and concluded that death would have been better, but that didn’t happen, so I feel guilty for not coping with his dementia, guilt because he is not walking, and if he had died then I wouldn’t be living this half life, I would have kept all the nice memories, whereas now I have over 5 years and counting of bad ones. I would have remembered his nice smells, but they have been replaced by sour milk and urine. We live on old memories, but no new nice ones to replace them. Yes Peter, dementia is dirty and cruel, and no one understands in the “outside” world like they do here.
 

Dutchman

Registered User
May 26, 2017
1,821
0
74
Devon, Totnes
I don’t know why I suddenly remember and feel guilty over stuff. Perhaps I always will.

I remember the exact time and place that I believe Bridget had her first TIA’S which must have started the dementia. We were in our caravan in Holland and she suddenly lost her breath and sat down quickly. This happened twice and I did nothing. Didn’t even go see a doctor over there. She seemed to recover but the following year there were telling signs things weren’t right.
Why didn’t I do more? Why didn’t I insist we see someone while in Holland? I’m weak and I’m paying the price for my dismissive behaviour. Can’t alter anything now and my regrets are many.
 

jennifer1967

Registered User
Mar 15, 2020
12,562
0
Southampton
I don’t know why I suddenly remember and feel guilty over stuff. Perhaps I always will.

I remember the exact time and place that I believe Bridget had her first TIA’S which must have started the dementia. We were in our caravan in Holland and she suddenly lost her breath and sat down quickly. This happened twice and I did nothing. Didn’t even go see a doctor over there. She seemed to recover but the following year there were telling signs things weren’t right.
Why didn’t I do more? Why didn’t I insist we see someone while in Holland? I’m weak and I’m paying the price for my dismissive behaviour. Can’t alter anything now and my regrets are many.
when my husband had a tia, i didnt know and only picked up on a mri scan. even if i knew, there wasnt anything i could do to improve the situation or his health or prevent him getting dementia. im not sure that i would act any differently than i did. i got him to the memory clinic and have looked after him ever since. you did what you thought was right at that time and in that circumstance. you couldnt ask more of yourself.
 

canary

Registered User
Feb 25, 2014
18,833
0
South coast
There is nothing you can do about TIAs, Peter. Even if you had gone to a doctor in Holland they wouldnt have been able to do anything.
You couldnt have prevented the dementia.
 

Thethirdmrsc

Registered User
Apr 4, 2018
668
0
Roddy was a recovery operator, started in the 70’s, and knew the roads like the back of his hand. The year he was diagnosed 2 things happened. He went to Andover to pick a new truck up. He was supposed to come home via the M6, but he ended up on the A1 at Weatherby services, and told us he had popped across the severn bridge for a look. He couldn’t find his way home, so his son and I went down to collect him. Then he lost his phone in Dalwhinnie, but made me go to Fife, as he was there as well. If you know the geography, that a fair old distance! Not once did I think Dementia, just age, stupidity and him. There are things we just don’t know, and don’t think of. Isn’t hindsight great, but it’s a gift we don't have.
 

Dutchman

Registered User
May 26, 2017
1,821
0
74
Devon, Totnes
I went up the high street this afternoon and it’s full of couples of my age who either appear tired with each other, look bored, bickering and I think if that was me and Bridget, if we just rubbed along which is common in many relationships. I hope I don’t see us as we were through rosy glasses.

I had all sorts of things planned for later today but this constant reminder of doing stuff on my own now just drains my energy away. There’s no one to say “ come on Peter, go do it” or “ let’s do it
together “.

And do you know what rubs it in? It’s the fact that Bridget oblivious to all this, tucked up in her care home living in her small world with all her needs answered, surrounded by caring people. Her anger, anxiety and stress is gone and she appears content.,
 

Dutchman

Registered User
May 26, 2017
1,821
0
74
Devon, Totnes
I know she can’t help it but the way she was when I finished my visit today was upsetting. I cried in the car in the care home car park.

I can’t help hating her sometimes for the emotional rollercoaster she puts me on. I hate her for getting dementia, for making me upset almost always when I see her and for this continual anxiety and guilt I feel.

I don’t really mean it of course because I love her to bits but sometimes, just sometimes, I get so angry that this has been done to me. She’s ok in her little world and I am pulled this way and that with grief.

There are times when we’re sitting together and I hold her I feel that she’s somehow just ordinary again. The smell of her hair, her hand resting on my leg, the rise and fall of her breath against my arm, just as it was. And then the business of the home intrudes and I’m reminded sharply that she’s not mine anymore.
 

GillP

Registered User
Aug 11, 2021
1,711
0
I know she can’t help it but the way she was when I finished my visit today was upsetting. I cried in the car in the care home car park.

I can’t help hating her sometimes for the emotional rollercoaster she puts me on. I hate her for getting dementia, for making me upset almost always when I see her and for this continual anxiety and guilt I feel.

I don’t really mean it of course because I love her to bits but sometimes, just sometimes, I get so angry that this has been done to me. She’s ok in her little world and I am pulled this way and that with grief.

There are times when we’re sitting together and I hold her I feel that she’s somehow just ordinary again. The smell of her hair, her hand resting on my leg, the rise and fall of her breath against my arm, just as it was. And then the business of the home intrudes and I’m reminded sharply that she’s not mine anymore.
We all know that you still love her. It’s the disease we all hate and the havoc it has wreaked in our lives.

My husband has only been in a home since March and, at the moment I visit daily. It is hard. I thought life would be easier but it often isn’t. The unpredictability is still there. For us, yesterday was good. After lunch we read the paper together and I asked some questions - not always answered. It was good because I had noticed that he had been flicking through the paper but with me choosing articles and reading bits out it provided a focus. He has always loved current affairs and sport so it was lovely to share it. He probably won’t want to do it today!

It’s not always easy to do the take each day as it comes thing is it? I too have sat in the car park wanting to scream. Slow breathing, compose myself and home for a cup of tea.

And, you know what @Dutchman we do still love our husband and wife - that’s why we feel as we do. I hope today is a better day for us all on here.

Take care x
 

Dutchman

Registered User
May 26, 2017
1,821
0
74
Devon, Totnes
Thank you @GillP for reminding me that we feel the way we do because we love them so. At the end 3 years ago, while Bridget was here trying to escape and hitting me and ignoring my stress, I more or less wanted her gone. The love was there but buried under emotional turmoil.

Now with the passage of time she’s different and calm and content. A social worker is meeting me at the home this week to check on Bridget’s needs. I’m impressed that the Council has the capacity to do this. I’ve no issues with the home as the staff are wonderful. I wish I could pay them a big bonus.