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Dementia’s journey

Old Flopsy

Registered User
Sep 12, 2019
211
0
@Dutchman - it was good to read your post and to see that he visit was ok'ish. I guess that's the most we can hope for. A true understanding of the anguish we feel isn't going to happen.

At least she wasn't upset- as far as you can tell. Hopefully she is inwardly content- that is what we want for them. We have to handle our own feelings in private when we leave,

The prospect of a whole Bank Holiday stretching out in front of us fills me with gloom- I will be thinking about you Peter and sending a virtual hug.
 

Stacey sue

Registered User
Jan 24, 2020
103
0
I feel the same, we have never been so well off,D worked all his life for him to be paying for care in a home , We could have had some amazing times, I wish we all lived nearer to each other, very few know what it is really like to loose a partner to dementia. You all do.x
 

Dutchman

Registered User
May 26, 2017
1,127
0
73
Devon
I want to expand on a thought I had previously. Expectations that I have and others have.

I often thought that others have expected me to start “getting over it”. But as we know this will never happen, things might soften a bit but, I’ll never recover from the devastation of Bridget’s dementia. Family and friends tell me how their days are filled with things to do, holidays to plan, places to go ( honestly I’d probably be the same) . So we’re left alone licking our wounds.

And then there’s my expectations of needing to manage my feelings. I expect people to concentrate on my sadness but their thoughts are elsewhere. So we have to reduce the expectations otherwise we are constantly disappointed and this increases our feelings of loneliness.
What a mess!!

peter
 

Andy54

Registered User
Sep 24, 2020
21
0
I wholeheartedly agree with those thoughts Peter, like you I don't think I'll ever come to terms with the situation. I don't blame others for not understanding, how could they but it would be better if they didn't tell me so often how things will "get better". I don't expect them to understand or share my sadness, just acknowledge it.
At the moment I'm finding it hard not to be negative and I feel that if I did "get over it" or "move on" then the past 43 years have all been for nothing.
Andy
 

Dutchman

Registered User
May 26, 2017
1,127
0
73
Devon
Hi there @Andy54. Like you there’s this dilemma over wanting to feel better, because grief is so wearing and hurts so much, and wanting to keep the hurt as a way of keeping the connection. I feel guilt if I feel better and found I’ve just spent the last 15 minutes not thinking of Bridget.

But my Bridget doesn’t know my feelings and I know normally she wouldn’t want me to be unhappy. She loved me too much for that. But can’t put her arm round me for comfort can she.

Yes, others could just acknowledge our feelings but it’s hurtful when speaking on the phone that they don’t even mention her and they have to be reminded to ask. Thoughts of Bridget fill my day but not theirs and Bridget and me are seen from afar. It can’t be any different.
Thinking of us all with love

Peterxx
 

None the Wiser

Registered User
Feb 3, 2020
213
0
Do you know @Andy54 I don’t think we can really come to terms with the situation. Probably, in time, we will find our way forward, and make a different life for ourselves, but that’s hard to envisage at the moment. The very nature of our situation is that I think we’d be very odd if we easily came to terms with it. Like you, and many others on here, I have had no ‘retirement’ with my husband. We were able to do a few things in the early stages of his dementia, but even these were carefully chosen and managed by me. We are both still in our 60’s and I feel it’s robbed us of a ‘golden’ decade when money would have been less ‘tight’ and, we would have had time to find each other again after the years of work and bringing up children. This isn’t something I have shared with others as it sounds so selfish, but it’s hard to see others of our age enjoying their new found freedom ( yes even during lockdown). I don’t begrudge them, but wish it could have been us too.
 

blackmortimer

Registered User
Jan 2, 2021
105
0
I agree, @Dutchman , @Andy54 . There's no way after almost 50 years we're going to "get over it". I sometimes think that other people find it embarrassing so they hope we'll get over it or move on or whatever. I've just come back from town having done some shopping. I was struck by the busyness of everyone, married couples, fathers and daughters all wrapped up in their own little world, mothers obviously getting supplies for the evening's meal, all oblivious of the old codger (me!) getting supplies for the dog, no idea of the anguish such a simple task can cause - memories of how it used to be flooding in. On a cold grey day like today (May Day!!) it's so easy to wallow in self pity - even the weather seems to have turned its face away. One can feel so alone.
I rang the nursing home yesterday and spoke to one of the nurses who's always very kind. She told me Margaret's in good health but endlessly wandering around so it was no use trying to get her to talk to me. I asked if she thought Margaret was happy and she said yes, she seems to be. I hope it's true. I need her to be happy. So I'll believe it because I have to. All very pathetic but there e are.

God bless
 

kindred

Registered User
Apr 8, 2018
2,642
0
Do you know @Andy54 I don’t think we can really come to terms with the situation. Probably, in time, we will find our way forward, and make a different life for ourselves, but that’s hard to envisage at the moment. The very nature of our situation is that I think we’d be very odd if we easily came to terms with it. Like you, and many others on here, I have had no ‘retirement’ with my husband. We were able to do a few things in the early stages of his dementia, but even these were carefully chosen and managed by me. We are both still in our 60’s and I feel it’s robbed us of a ‘golden’ decade when money would have been less ‘tight’ and, we would have had time to find each other again after the years of work and bringing up children. This isn’t something I have shared with others as it sounds so selfish, but it’s hard to see others of our age enjoying their new found freedom ( yes even during lockdown). I don’t begrudge them, but wish it could have been us too.
Thank you. I agree. It’s 18 months since my husband died of Alzheimer’s. I’m not even going to attempt to come to terms with it. I can’t find the thoughts or the words that would help me cope with what we went through. The terrible experiences you know so well. A it’s hard for me to think in terms of freedom because I’m still stuck with this horrible sense of danger if I go too far from home. When I had to leave the house I would rush back always to find some damage, some awful mess …. And I still have this feeling of dread even now. I just try to find some sort of grace in the natural world and in the beloved friends I have. But come to terms? How?
With love Geraldine aka Kindredx
 

None the Wiser

Registered User
Feb 3, 2020
213
0
Hello Geraldine aka @kindred, I think that sense of dread is very familiar to a lot of us. I wonder if it’s something to do with grief? I do enjoy my walks, and being out in the garden ( I’m lucky to have a small patch), and friends are doing their very best to be supportive, kind and there for me too. Hugs to you in your bereavement. I’m so glad you’re still posting on here. Thank you.
 

kindred

Registered User
Apr 8, 2018
2,642
0
Hello Geraldine aka @kindred, I think that sense of dread is very familiar to a lot of us. I wonder if it’s something to do with grief? I do enjoy my walks, and being out in the garden ( I’m lucky to have a small patch), and friends are doing their very best to be supportive, kind and there for me too. Hugs to you in your bereavement. I’m so glad you’re still posting on here. Thank you.
Thank you so very much, thank you. The Forum is hugely supportive, means the world to me. with love, Geraldinexx
 

Dutchman

Registered User
May 26, 2017
1,127
0
73
Devon
I agree, @Dutchman , @Andy54 . There's no way after almost 50 years we're going to "get over it". I sometimes think that other people find it embarrassing so they hope we'll get over it or move on or whatever. I've just come back from town having done some shopping. I was struck by the busyness of everyone, married couples, fathers and daughters all wrapped up in their own little world, mothers obviously getting supplies for the evening's meal, all oblivious of the old codger (me!) getting supplies for the dog, no idea of the anguish such a simple task can cause - memories of how it used to be flooding in. On a cold grey day like today (May Day!!) it's so easy to wallow in self pity - even the weather seems to have turned its face away. One can feel so alone.
I rang the nursing home yesterday and spoke to one of the nurses who's always very kind. She told me Margaret's in good health but endlessly wandering around so it was no use trying to get her to talk to me. I asked if she thought Margaret was happy and she said yes, she seems to be. I hope it's true. I need her to be happy. So I'll believe it because I have to. All very pathetic but there e are.

God bless
Hi @blackmortimer. I mirror all you’ve said and get some strange comfort knowing that here’s someone who is going through what I’m going through. Just wish we could meet for coffee to console each other. Wouldn’t that be great! All I do I do on my own and, probably like you, feel it’s such a heavy weight of mixed feelings

For instance, I’m going to visit Bridget today for a window visit. The days I don’t go I feel I’m letting her down. She doesn’t know I’ve been and won’t remember me but nevertheless I feel guilt and abandonment.

I still feel I “ shoved “ her away into the home. I suppose that’s the guilt speaking, always feeling I could’ve done better to keep her here. I sometimes think it would be good to relive those final days here when her
dementia behaviour was at its worse just to remind me of how hopeless it all was.

My relatives are coming here later in May. I’m supposed to be excited and cheerful at the prospect. Well, I’m not. I haven’t got the energy for a brave face or those awkward conversations.
Peterx
 

blackmortimer

Registered User
Jan 2, 2021
105
0
I feel for you, Peter, having the prospect of relatives coming. I'm lucky, I suppose, that apart from our son and daughter and their immediate families we have no relatives living now so it's a problem I don't have. I don't have to mask my feelings when either of the two children come - they accept that if I need to cry I need to cry and they accept it. So I'm not sure what I would do if there were more distant relatives. I don't think I'd be very good. The only possible advice I could offer would be to be yourself, don't pretend and if they don't like it, too bad. You're the one who's hurting, the one who needs to be healed and you shouldn't have to apologise. I think there a few of us here who know how you feel and we're thinking of you and feeling for you.

Must go, the dog's looking at me so she needs a walk. Thinking of you. God bless
 

Andy54

Registered User
Sep 24, 2020
21
0
Went to visit D today for first time since she moved into care last Monday. I was both looking forward to it but also dreading it wondering what her reaction might be. After taking the Covid rapid flow test I sat waiting in the lobby. After about 20 minutes D appeared being led by the hand by a carer. She looked a little lost and confused at first but then seemed to sort of recognise me. We went through to a room that had been set aside for visiting, once in that room we were left alone and no ppe required. D sat next to me on the sofa and I held her hand. I Don't think she really knew who I was but just knew she recognised me from somewhere. I chatted to her and she occasionally tried to tell me something, as has been the case for a while it wasn't always possible to get what she was saying. About half an hour she did ask me if I worked there! She was smiling throughout the hour I was with her, something I had not seen much of over the last few months and had lost the somewhat haggard look she had recently. She did get a little confused when it came time for me to leave but we got over that after a second goodbye! Overall a very positive first visit and such a relief to see her reasonably content and "happy".
 

Dutchman

Registered User
May 26, 2017
1,127
0
73
Devon
Hello @Andy54. I really pleased that the visit went well and you came away fairly reassured. These visits are bound to be awkward and we never know how they’re going to go.

I went yesterday and it was suggested I walk outside with Bridget ( accompanied by staff). So the three of us walked around the building but I felt awkward and somehow spare. I can’t get into her being my Bridget although I hold her hand and talk reassuringly there’s the barrier of dementia that destroys the connection. She talked ( just random words really) a bit more this time.
It’s so very hard isn’t it when you hope for a connection, some form of recognition, and it’s all gone. I come home and dissect the whole visit hoping to hold on to something that can make me feel better.

And why don’t people understand? I’m now at the point where it seems relatives and friends appear to take for granted that I’m joining ordinary life again. Let’s do this, why don’t you do that, you’ll be excited to see them or do it, that will be great, and the list goes on.
All I feel is that Bridget was everything to me and she’s gone and not gone and life is empty and grey. And all the promises of exciting diversions means nothing.
Peter
 

Andy54

Registered User
Sep 24, 2020
21
0
I was quite surprised when I was left alone with D during the visit as many others have mentioned being accompanied by a "minder" there seems to be a lot of confusion and inconsistency with visiting rules between different homes. I totally agree with the point of rejoining ordinary life again - how will we ever get to that point. It is one thing accepting our loved ones situation it is quite another thing "getting over it". Although my visit went a little way towards easing the sense of guilt that I had abandoned D in her hour of need it does of course do nothing to fill the huge void in my life. I constantly find myself thinking of all the things we will no longer do together and this is what saddens me the most, silly simple things like sharing a leisurely Sunday lunch with a bottle of wine, a hand in hand walk along a favourite beach. Will I ever be able to visit some of our favourite places ever again?
Andy
 

Cat27

Volunteer Moderator
Feb 27, 2015
12,059
0
Merseyside
Hello @Andy54. I really pleased that the visit went well and you came away fairly reassured. These visits are bound to be awkward and we never know how they’re going to go.

I went yesterday and it was suggested I walk outside with Bridget ( accompanied by staff). So the three of us walked around the building but I felt awkward and somehow spare. I can’t get into her being my Bridget although I hold her hand and talk reassuringly there’s the barrier of dementia that destroys the connection. She talked ( just random words really) a bit more this time.
It’s so very hard isn’t it when you hope for a connection, some form of recognition, and it’s all gone. I come home and dissect the whole visit hoping to hold on to something that can make me feel better.

And why don’t people understand? I’m now at the point where it seems relatives and friends appear to take for granted that I’m joining ordinary life again. Let’s do this, why don’t you do that, you’ll be excited to see them or do it, that will be great, and the list goes on.
All I feel is that Bridget was everything to me and she’s gone and not gone and life is empty and grey. And all the promises of exciting diversions means nothing.
Peter
Can I just ask, did you understand dementia before having to live with it because I certainly didn’t!
Your family will be worried about & are looking to provide distraction to give you a boost.
 

Andy54

Registered User
Sep 24, 2020
21
0
Can I just ask, did you understand dementia before having to live with it because I certainly didn’t!
Your family will be worried about & are looking to provide distraction to give you a boost.
I don't think any of us would have fully understood the full impact of dementia until we experienced it first hand. Whatever we thought we knew would prove to be a miniscule amount and that probably a rather naive and simplistic view. What a learning curve it has been.
 

Cat27

Volunteer Moderator
Feb 27, 2015
12,059
0
Merseyside
I don't think any of us would have fully understood the full impact of dementia until we experienced it first hand. Whatever we thought we knew would prove to be a miniscule amount and that probably a rather naive and simplistic view. What a learning curve it has been.
It has been a massive learning curve for us all. All we can do is take baby steps through our new reality & let people who love & care for us try to support.
 

None the Wiser

Registered User
Feb 3, 2020
213
0
No, we can’t expect people to know or understand if they haven’t trodden this path. I certainly had no idea, and still each ‘stage’ leaves me reeling. People are genuinely kind and well meaning with their platitudes and distraction events, and I’m grateful to them. However, it is, without a doubt, a cruel situation to find yourself unable to visit the person you have lived with for 47yrs when you want, and spend as much time, or as little time with them as you want; It is very, very hard not to be able to have any meaningful conversation with that person any more; It is heartbreaking when they have no idea who you or their children are; It is sad and lonely to sit in the home you have shared for over 35 yrs surrounded by memories, and know that the person will never return. It takes huge reserves of self discipline and control not to feel sorry for the situation that you find yourself in, and not to feel empty, lacking in motivation and unable to focus on anything very much. I feel that there is an expectaction in our society that people should ‘get on with their life’, be ‘resilient’, be ‘strong’ etc. and whilst I don’t want to ‘wallow’ in the situation I do feel there needs to be a realization of the reality that we ‘dementia widows’ face from day to day. In other words the above is our life at present, and yes we do have the ability to change how we view it, and respond to it, but the facts remain. I hope that makes some sense!
 

Stacey sue

Registered User
Jan 24, 2020
103
0
That really does make sense when your in this awful position ,no one knows unless they have been there.Thank god for this forum,and all that add to our experiences.
 

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