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Dementia’s journey

Dutchman

Registered User
May 26, 2017
1,047
0
73
Devon
I’ve just finished some jobs round the house and found myself talking to Bridget hoping she’ll like what I’ve done. Big mistake ! Just reinforces that she’s not here to say anything, just me talking to an empty house.

What is a partner, friend, lover anyway. I’ve realised it’s someone you can touch at anytime, share an experience, remember together, move stuff about so it’s in a different place, know that someone else will see what you’ve done and say something. I can do anything now and I don’t like it.

I even found myself today being angry at her for leaving me like this but that’s not fair I know because she never wanted dementia. I just feel so damn, I don’t know, abandoned.
Anyway, another day gone and I’m in my safe warm bed. Tomorrow, who knows, more of the same!

Bless you all, Peter
 

Dutchman

Registered User
May 26, 2017
1,047
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73
Devon
I’ve just finished a zoom meeting with family and friends. Didn’t really want to do it but thought I’d do my best. Everyone was cheerful and upbeat and talking about Covid and home improvements and hangovers and diets.

The only mention of Bridget was ‘has she had her jab yet’ and I filled in the details. Not one person in all the talk asked anymore about her or my situation. My whole life is underpinned by my feelings and emotions for Bridget and no one seems to get it. I’ve every right to be a miserable old so and so and not join in with the jollity.


I’ve said this before but it’s almost like “ well, Bridget taken care of now and Peter needs to get on with his life and let’s not talk about all that depressing dementia stuff, let’s not spoil the atmosphere with questions about how Peter feels”
But how can anyone who isn’t in this situation even come close to knowing the torment we go through everyday. Am I making far too much of my grief ? Am I guilty of a little wallowing in it?

My daughter I suppose really wants me to be happier for my own sake but how can I NOT be stuck in this grief. That’s why I need counselling for heavens sake! I just get so annoyed that this pushing by others into the background of Bridget’s condition and my situation is acceptable. I wonder if it would be the same if she was in a hospice dying of cancer. That’s cleaner somehow, not grimy like dementia.
I so need people on this Forum who understand this . I’m left with an empty feeling of isolation

Peter
 

Borolad

New member
Apr 27, 2019
5
0
I’ve just finished some jobs round the house and found myself talking to Bridget hoping she’ll like what I’ve done. Big mistake ! Just reinforces that she’s not here to say anything, just me talking to an empty house.

What is a partner, friend, lover anyway. I’ve realised it’s someone you can touch at anytime, share an experience, remember together, move stuff about so it’s in a different place, know that someone else will see what you’ve done and say something. I can do anything now and I don’t like it.

I even found myself today being angry at her for leaving me like this but that’s not fair I know because she never wanted dementia. I just feel so damn, I don’t know, abandoned.
Anyway, another day gone and I’m in my safe warm bed. Tomorrow, who knows, more of the same!

Bless you all, Peter
Oh dear, Peter
You sound so sad. I’ve not followed your thread so I don’t know if Bridget is still alive or in a home. Here is my situation and reflections which may, may not, help you!!

I have a wonderful wife who is still at home, happy but slowly crumbling. I have a wonderful Admiral Nurse who has been helping me and my daughters for the last 18 months. I never thought I could do this, but I can with the help of a team that I have put together. It’s certainly not what I expected at 73, but I have to deal with it. She deserves it and we have all agreed to keep her at home as long as possible. The emptiness of a relationship is really sad though she is totally unaware that things have changed. I’d love to have a close relationship again but feel that I would be cheating on her at the moment. So I’m getting out and walking and talking with friends, working 2 days a week, playing my guitar, and doing this one day at a time.
I also feel emotionally lonely but can’t see through that at the moment.

the day will come soon when she is gone. I cannot imagine how that will feel, but I console myself that I will have done my best for her and I will be able to move on- never forgetting her but accepting that I have to survive!
My love for her will never die, but she wouldn’t want me to be alone. So, we’ll see!
Take care!
 

Pusskins

Registered User
Jun 6, 2020
213
0
New Zealand
Oh dear, Peter
You sound so sad. I’ve not followed your thread so I don’t know if Bridget is still alive or in a home. Here is my situation and reflections which may, may not, help you!!

I have a wonderful wife who is still at home, happy but slowly crumbling. I have a wonderful Admiral Nurse who has been helping me and my daughters for the last 18 months. I never thought I could do this, but I can with the help of a team that I have put together. It’s certainly not what I expected at 73, but I have to deal with it. She deserves it and we have all agreed to keep her at home as long as possible. The emptiness of a relationship is really sad though she is totally unaware that things have changed. I’d love to have a close relationship again but feel that I would be cheating on her at the moment. So I’m getting out and walking and talking with friends, working 2 days a week, playing my guitar, and doing this one day at a time.
I also feel emotionally lonely but can’t see through that at the moment.

the day will come soon when she is gone. I cannot imagine how that will feel, but I console myself that I will have done my best for her and I will be able to move on- never forgetting her but accepting that I have to survive!
My love for her will never die, but she wouldn’t want me to be alone. So, we’ll see!
Take care!
@Borolad I understand your predicament exactly. When you've had a wonderful relationship for many years, it is Hell on earth to find yourself alone. I'm not coping well emotionally at all. I no longer beat myself up for how I managed with MH at home, but I'm floundering in other ways, I miss him so much.
 

Dutchman

Registered User
May 26, 2017
1,047
0
73
Devon
I’ve just spent an evening with family watching a movie and for a while I forget Bridget. But they’ve gone home now and my thoughts of Bridget crowd back in and I remind myself with photos of her taken in her care home ( Borolad .... my wife has dementia and has been in a home for the past 18 months) .
My feelings, right at this moment, is seeing someone who I used to know . I don’t remember her touch, her voice, the feel of her hand and the longer this lockdown continues she’ll become a stranger to me and I’ll only have memories to cling to. It’s becoming like she was never here in this house but I have all her clothes and personal stuff to remind me.

I can’t continue for ever like this because every time I visit it’s either she’s asleep or she has little concern for me being there. So what do I do? Any suggestions because I don’t want to lose her but I can’t keep her. She lives in a different world now which is driven by dementia and one where she has forgotten me as her husband.

When we have someone around each day we take for granted their presence, sound and they become us. And when we love we are one.

That’s why I’m a miserable. I do my best to hide it but it festers under the surface constantly.
It’s 22.00, nearly bedtime so at least I know she’ll be in bed and , if asleep , calm and anxiety free.
Peter
 

Pusskins

Registered User
Jun 6, 2020
213
0
New Zealand
I’ve just spent an evening with family watching a movie and for a while I forget Bridget. But they’ve gone home now and my thoughts of Bridget crowd back in and I remind myself with photos of her taken in her care home ( Borolad .... my wife has dementia and has been in a home for the past 18 months) .
My feelings, right at this moment, is seeing someone who I used to know . I don’t remember her touch, her voice, the feel of her hand and the longer this lockdown continues she’ll become a stranger to me and I’ll only have memories to cling to. It’s becoming like she was never here in this house but I have all her clothes and personal stuff to remind me.

I can’t continue for ever like this because every time I visit it’s either she’s asleep or she has little concern for me being there. So what do I do? Any suggestions because I don’t want to lose her but I can’t keep her. She lives in a different world now which is driven by dementia and one where she has forgotten me as her husband.

When we have someone around each day we take for granted their presence, sound and they become us. And when we love we are one.

That’s why I’m a miserable. I do my best to hide it but it festers under the surface constantly.
It’s 22.00, nearly bedtime so at least I know she’ll be in bed and , if asleep , calm and anxiety free.
Peter
Hello Peter,
I wish it could be different for you, for me and the rest of us on this journey. I visited MH today and it seems he is slowly declining as each time I see him he no longer does or says things that he did on previous visits. As always, I left the RH with a deep pain in my chest. Life has no meaning for me without him and I don't know how I will ever be able to cope when he really starts going downhill in a big way. I think it will kill me. I don't have any answers. There just doesn't seem to be any and we just have to carry on, suffering and grieving.
 

Dutchman

Registered User
May 26, 2017
1,047
0
73
Devon
Oh dear, I’m all over the place this afternoon. The only comfort I can get now is writing it down. I’m balling my eyes out and I’m so tired of it all. I went to see Bridget this morning and as usual she finds it impossible to relate to me and mirrors a wave and walks away.

what have we done so wrong that we deserve this misery every day? Dementia has taken everything . I just touched a souvenir from our past holiday and it was like an electric current of remembrance when life was good and we just had each other.

And then that leads me on then to other memories of Bridget trying her best to write a card with very limited vocabulary. Such a sad memory of struggling but she still managed to write “you are the lovely man”.
What do we do when we are lonely with our memories and regrets and need immediate comfort? I understand why some just can’t go on anymore but I’m not sure if I’ve got it in me to end it. I still need to be here for her otherwise I’m abandoning her. Who knows what I will do when she dies?

All my Love to you all from misery guts
 

kindred

Registered User
Apr 8, 2018
2,618
0
I’ve just finished a zoom meeting with family and friends. Didn’t really want to do it but thought I’d do my best. Everyone was cheerful and upbeat and talking about Covid and home improvements and hangovers and diets.

The only mention of Bridget was ‘has she had her jab yet’ and I filled in the details. Not one person in all the talk asked anymore about her or my situation. My whole life is underpinned by my feelings and emotions for Bridget and no one seems to get it. I’ve every right to be a miserable old so and so and not join in with the jollity.


I’ve said this before but it’s almost like “ well, Bridget taken care of now and Peter needs to get on with his life and let’s not talk about all that depressing dementia stuff, let’s not spoil the atmosphere with questions about how Peter feels”
But how can anyone who isn’t in this situation even come close to knowing the torment we go through everyday. Am I making far too much of my grief ? Am I guilty of a little wallowing in it?

My daughter I suppose really wants me to be happier for my own sake but how can I NOT be stuck in this grief. That’s why I need counselling for heavens sake! I just get so annoyed that this pushing by others into the background of Bridget’s condition and my situation is acceptable. I wonder if it would be the same if she was in a hospice dying of cancer. That’s cleaner somehow, not grimy like dementia.
I so need people on this Forum who understand this . I’m left with an empty feeling of isolation

Peter
Peter, I know. We really do understand that here. And you know that I understand it of course. I think in this situation it’s very difficult to be happy for its own sake. I get moments when the grief lifts for a bit but
Oh dear, I’m all over the place this afternoon. The only comfort I can get now is writing it down. I’m balling my eyes out and I’m so tired of it all. I went to see Bridget this morning and as usual she finds it impossible to relate to me and mirrors a wave and walks away.

what have we done so wrong that we deserve this misery every day? Dementia has taken everything . I just touched a souvenir from our past holiday and it was like an electric current of remembrance when life was good and we just had each other.

And then that leads me on then to other memories of Bridget trying her best to write a card with very limited vocabulary. Such a sad memory of struggling but she still managed to write “you are the lovely man”.
What do we do when we are lonely with our memories and regrets and need immediate comfort? I understand why some just can’t go on anymore but I’m not sure if I’ve got it in me to end it. I still need to be here for her otherwise I’m abandoning her. Who knows what I will do when she dies?

All my Love to you all from misery guts
Here for you Peter, this is agony, I know. I don’t have wise words, but if fellow feeling helps, then you have all my fellow feeling. Yes, stay here for Bridget, your family and to write to us, with love Kindred
 

Dutchman

Registered User
May 26, 2017
1,047
0
73
Devon
Hello everyone

Again, for some random reason, I was very upset this morning. Just the absolute stillness and quiet of the house reminds me how on my own I am. I took the car into get its service this morning. I have to have it otherwise I can’t get to Bridget easily. Buses are rubbish down here. I’m quite good friends with the manager there and he asked after Bridget.

It only takes the smallest of innocent remarks to tip the balance between I’m ok and I’m upset. I was asked “how long has it been now” and I reply 2 years this August. And then he said “ will she be coming home” and my heart dropped, and I said no, not now. So when I drove up to my house I imagined bringing her back , saying “ you’re back home“ walking up the path together and we can start again. But I look to the empty passenger seat where, for so many miles, she would keep me company.

This is a minefield where you never know if you going to step on something that will ruin your day. Trouble is we never know where these minefields are otherwise they could be avoided.

Peter
 

Dutchman

Registered User
May 26, 2017
1,047
0
73
Devon
I want to write this while it’s fresh.

spoke to my counsellor today and I told her of my never ending thoughts about when my life changed forever on 24 th August 2019.

Bridget was taken from me that afternoon after wanting to escape the house. She was taken in the care homes car and that was the last time she was in this house after 17 years. I couldn’t look after her any more and failed in my attempt to keep her and look after her at home. I said “ I can’t look after you anymore Bridge” and she went placidly with the care staff to their car and that was that. My poor love was broken with dementia and I was left with the memory of what I had just done.

I went inside the empty house and it was like she’d died there and then. I had no one for the rest of that day and I was in shock. What had I done? But there was no turning back, although I strongly considered bringing her home many times I was that desperate.

Its in the past I know but I still feel wretched about letting her go and the way it was done. The was no preparation for her going, no choices or discussion, just an awful scene of the tragedy of dementia with Bridget desperately trying to leave her home, begging me to help her.

Although I’m advised to try and put it out of my mind I can’t. I think I’ll always believe I let her down.
Sorry, had to get it down and out there.
Peter
 

None the Wiser

Registered User
Feb 3, 2020
192
0
Ah....... but @Dutchman perhaps you didn’t let her down at all. Perhaps you did the most difficult thing and let her go. Perhaps, this was the right thing for her.
You will see in another thread that I’m grappling with the question of ‘when’ and ‘if’ to send my husband into a care home. The problem is we can’t talk about it with the one person that we need to talk to. We will be forever left with the question of whether we did the ‘right’ thing, and the feelings of guilt. This coupled with the grief of loosing someone, compounded with the fact that they are physically still here Is a great deal to bear.
We desperately need someone to tell us that we’ve done the ’right thing’, but the only person that we would listen to, or hear properly, is our loved one.
 

Dutchman

Registered User
May 26, 2017
1,047
0
73
Devon
I know so well your dilemma and agony over this. I don’t know what I would have had I not been forced into it. I suppose I would have carried on, Bridget would’ve got worse, I could’ve coped at all and the whole situation getting out of hand and Bridget sectioned and ending up in some hospital. Please don’t wait till the bitter end with this and end up having my experience of blind panic and being out of control.

Do you have anyone who can help and advise and be a support? I didn’t, only social services and they’re too stretched, but they can be a good resource . Can you have a plan of action for if and when? Maybe a couple of homes that look suitable. Ring them, see how they’re fixed for a room. Tentatively search out possibilities just in case. I know it’s painful and seems deceitful but the reality is that your husband perhaps needs more than you to look after him. Have you considered more help at home? There’s plenty of companies out there who will help ( for a cost).

anyway if I can suggest anymore please just post and I’ll try to help from my stumbling experience of all this. Sorry if I’ve suggested stuff already tried

Peter
 

None the Wiser

Registered User
Feb 3, 2020
192
0
Thank you Peter. Sharing your experience really helps me to think this through. I constantly swing from feeling that my husband needs to be looked after by a team of people, to, on good days, thinking I can manage. The fact that you’ve been there is so important as talking to those people who haven’t been in this position they can’t understand the hesitancy./dilemma. Social services have put in additional help, and have been as supportive as they can under present restriction. Unfortunately, my husband needs ‘watching’ constantly. I will heed what you have said about not leaving it until the bitter end. I’m so sorry for your ‘blind panic’ and feelings of letting your dear Bridget down. I hope as lockdown eases you can find some comfort in visiting her.
 

Dutchman

Registered User
May 26, 2017
1,047
0
73
Devon
Although I have been there with the “shall I shan’t I “ dilemma it’s still raw in my mind even now. In many respects looking back it was easier that it was taken out of my hands in the end, my choice was zero. She was banging the windows in frustration to get out.

I’m not saying wait till it gets that bad, I’m really not. But, and it’s a big but, I wouldn’t want anyone to go through what I experienced. The transfer to a caring care home is traumatic enough without your love one emotionally very upset.

Everyone and every situation is different and difficult of course. That’s why you need someone at your side when the time comes. Arrange that, speak to someone who understands and put a plan in place. You cannot do these things on your own and no one expects it.
I wish I could help more. Write if you need more support ❤️ Peter
 

None the Wiser

Registered User
Feb 3, 2020
192
0
Although I have been there with the “shall I shan’t I “ dilemma it’s still raw in my mind even now. In many respects looking back it was easier that it was taken out of my hands in the end, my choice was zero. She was banging the windows in frustration to get out.

I’m not saying wait till it gets that bad, I’m really not. But, and it’s a big but, I wouldn’t want anyone to go through what I experienced. The transfer to a caring care home is traumatic enough without your love one emotionally very upset.

Everyone and every situation is different and difficult of course. That’s why you need someone at your side when the time comes. Arrange that, speak to someone who understands and put a plan in place. You cannot do these things on your own and no one expects it.
I wish I could help more. Write if you need more support ❤️ Peter
Thank you Peter. 🤗
 

Pusskins

Registered User
Jun 6, 2020
213
0
New Zealand
I had to do it on my own, there was nobody who could or would help. In a way it was fortunate that MH had spent a brief spell in hospital and I organised his rest home while he was in there. When I went to supposedly bring him home, I told a white lie and said we were taking a little detour on the way home to go and look at a bird aviary. That actually wasn't a lie because his rest home does have an aviary and MH used to breed budgies. Fortunately he had been given a low dose of risperidone the night before and was in a co-operate mood. When we got there, he followed me in willingly and while I was busy filling in forms in his room, he wandered off to the lounge, sat down and obligingly went to sleep. He had caught a cold while in hospital and his dementia had worsened a little, so he didn't seem very aware of the fact he wasn't at home. I was able to leave while he still slept. Initially he wouldn't eat or drink anything they gave him. He was like that in hospital also. If I wasn't there, he refused food and drinks. Eventually they managed to get him to drink the Complan I'd taken in and after a couple of weeks I took his favourite drinks and do this every time I visit. He is eating and drinking well now. I'd move heaven and earth to have him here with me, but I know I can't provide the care that he gets there as much as I hate being separated from him.
 

Vicky M

New member
Jun 12, 2020
8
0
I want to write this while it’s fresh.

spoke to my counsellor today and I told her of my never ending thoughts about when my life changed forever on 24 th August 2019.

Bridget was taken from me that afternoon after wanting to escape the house. She was taken in the care homes car and that was the last time she was in this house after 17 years. I couldn’t look after her any more and failed in my attempt to keep her and look after her at home. I said “ I can’t look after you anymore Bridge” and she went placidly with the care staff to their car and that was that. My poor love was broken with dementia and I was left with the memory of what I had just done.

I went inside the empty house and it was like she’d died there and then. I had no one for the rest of that day and I was in shock. What had I done? But there was no turning back, although I strongly considered bringing her home many times I was that desperate.

Its in the past I know but I still feel wretched about letting her go and the way it was done. The was no preparation for her going, no choices or discussion, just an awful scene of the tragedy of dementia with Bridget desperately trying to leave her home, begging me to help her.

Although I’m advised to try and put it out of my mind I can’t. I think I’ll always believe I let her down.
Sorry, had to get it down and out there.
Peter
I cannot believe that you have let her down at all - you have been truly dedicated to looking after her. I'm afraid that dementia is a life sentence in guilt for relatives. The problem is not down external circumstances, whether your loved one lives with you or in a care home, it is inside their brain. Sadly nothing you can do can take it away and I'm afraid that whatever we do we still punish ourselves by feeling that we did the wrong thing. I don't believe that you could have done more for her - the tragedy is the dementia and not anything that you did or didn't do.
I am placing my uncle into a care home at the moment and the manager reminded me that there is never a good time to come into care and that made me feel much better because I have tortured myself wondering if I should have arranged it earlier or later.
To counteract focusing on all the things that didn't happen and feeling like you let her down, please could I suggest that you make a list of all the things you DID do for her day after day. I bet that list is very long - please look at it everyday to remind yourself of all you did to take care of her.