Dementia’s journey
- Thread starter Dutchman
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Lots of love to all of you, this forum is sanity preserving when the grief, guilt and sorrow at the enforced separation hit. Thank you for sharing your stories they helped me to cope at a very dark time. Still feeling bereft, miss my Mum x
Hi @Old Flopsy . How are matters today? Any positive news? I’m here always at the other end of this iPhone to check on the Forum. Please keep in touch.
It’s been recommended that we get out for a walk in the early morning to boost our spirits. So that’s what I did this morning, walking along our lovely river Dart to a bench at the other end of the footpath. So far so good. But then it hit me - I’m alone doing this and all sorts of miserable thoughts started to crowd in. I’m constantly regretting all the stuff I could have done, all the things said or should not have been said, and a multitude of other things.
And yes, I know all this regretting won’t change anything, it won’t bring her back here, it won’t make peace between us and it won’t undo all the hurt that happened when Bridget was here. Advice and reassurance on this matter are of course understood but, nevertheless, until I accept it 100% it’ll always upset me.
Making peace with it all is what I want and that’s so very hard to do
Peter
It’s been recommended that we get out for a walk in the early morning to boost our spirits. So that’s what I did this morning, walking along our lovely river Dart to a bench at the other end of the footpath. So far so good. But then it hit me - I’m alone doing this and all sorts of miserable thoughts started to crowd in. I’m constantly regretting all the stuff I could have done, all the things said or should not have been said, and a multitude of other things.
And yes, I know all this regretting won’t change anything, it won’t bring her back here, it won’t make peace between us and it won’t undo all the hurt that happened when Bridget was here. Advice and reassurance on this matter are of course understood but, nevertheless, until I accept it 100% it’ll always upset me.
Making peace with it all is what I want and that’s so very hard to do
Peter
Hi @Dutchman . OH was kept in hospital and they are doing scan etc today. I haven't rung yet today- the hospital rang me last night saying OH wants to speak to you- but all he wanted to say to me was that he is in hospital and needs me to go and fetch him home. I said he was there because he had fallen but he denied that there had been a fall. It just upset me all over again.
I rang my doctor today and she said my despair is grief as he is slipping away from being the person I knew. But she has agreed to put me on anti- depressant so I will fetch the tablets this afternoon. This will be my first experience of anti- depressants.
All I really want is for OH to settle and get some pleasure out of the life he has left. Meanwhile like you I feel bereft and full of regrets. Yes faced with a future alone, the idea of holidays or trips out, fills me with fear.
Thinking of you Peter.
I rang my doctor today and she said my despair is grief as he is slipping away from being the person I knew. But she has agreed to put me on anti- depressant so I will fetch the tablets this afternoon. This will be my first experience of anti- depressants.
All I really want is for OH to settle and get some pleasure out of the life he has left. Meanwhile like you I feel bereft and full of regrets. Yes faced with a future alone, the idea of holidays or trips out, fills me with fear.
Thinking of you Peter.
Hello @Old Flopsy. Never plain sailing at the hospital is it. The pressure on you is immense, please don’t underestimate what strain it puts on you. When Bridget went into hospital
( she’d had a fall at the home) my main emotion was one of helplessness and also worry. But why wouldn’t I feel like this!
I went onto antidepressants when Bridget first left here. Not sure though if they did much good as I think my level of upset sort of cancelled out their benefits. But give them a try. Anything to dull the grief. Depending on the type they take a little while to kick in. Just saying.
peter
Hi @Dutchman Yes I will give them a try- the doctor said it will take time to kick in, though the doctor said I am not 'ill' it's just the relentless situation I am in-like OH has died, but he's still alive- and not with me. It is so unreal.
The good news is his scan is clear and he is safely back at the home,
And they have FOUND his missing denture- it was still in the holdall taken to the hospital two weeks ago ( I had found it on the lounge floor after he had been taken to hospital). So hopefully it will make eating easier.
The good news is his scan is clear and he is safely back at the home,
And they have FOUND his missing denture- it was still in the holdall taken to the hospital two weeks ago ( I had found it on the lounge floor after he had been taken to hospital). So hopefully it will make eating easier.
Good news your husband is back at the home and has his missing dental plate. I hope there are no more falls and he starts to settle.
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Oh dear. Just finished a prayer support group on Zoom that I thought might give me some peace but it’s the opposite. They’re all couples praying for different situations and I felt unable to get involved and unload my upset for their prayers of healing. When you’re on your own there’s no one to comfort you, even make you a cup of tea ( or a stiff drink)
Problem is that I visited Bridget today and had the opportunity to see her closely for some time through the window. She was given my flowers and a card.
All the while I watched it was clear that she had little capacity to understand. She looked and acted distant, found it difficult to know what the card represented, let the flowers fall and slowly, with tiny movements, put the card on her lap. She looked so vulnerable and feeble. My dear Bridget is declining and I dread to think how long I’ve got with her.
It’s seeing someone I knew who had strength and purpose brought down to my wife sitting there, a weak little lady fumbling with an envelope.
I just don’t know what to do. I’m supposed to be applying to be a Alzheimers society companion, one who speaks to others like us to befriend on the phone once a week. I’m won’t be much good to anyone like this, probably make it worse. I want to help as I feel it’s desperately needed, but am I ready?
Bloody dementia had ruined everything. I think I’m strong and then the knife is twisted again when I see what remains of my wife. And there’s nothing I can do to shift this hurt.
Peter
Problem is that I visited Bridget today and had the opportunity to see her closely for some time through the window. She was given my flowers and a card.
All the while I watched it was clear that she had little capacity to understand. She looked and acted distant, found it difficult to know what the card represented, let the flowers fall and slowly, with tiny movements, put the card on her lap. She looked so vulnerable and feeble. My dear Bridget is declining and I dread to think how long I’ve got with her.
It’s seeing someone I knew who had strength and purpose brought down to my wife sitting there, a weak little lady fumbling with an envelope.
I just don’t know what to do. I’m supposed to be applying to be a Alzheimers society companion, one who speaks to others like us to befriend on the phone once a week. I’m won’t be much good to anyone like this, probably make it worse. I want to help as I feel it’s desperately needed, but am I ready?
Bloody dementia had ruined everything. I think I’m strong and then the knife is twisted again when I see what remains of my wife. And there’s nothing I can do to shift this hurt.
Peter
Peter, when you have given support to others on here you have done so with compassion, sensitivity and insight. You will be a very valuable and valued befriender. Kindredx
There is some comfort in your not on your own, on this dementia journey that you started ,we all very much feel the same you log what we are all feeling, so am sure you could and are a huge help to others. x
Hi @Stacey sue and @kindred. I’ve taken your advice and I’m carrying on with the companion application. Good days and bad days shouldn’t define my whole life ( they can though of course) and if asked I’m sure Bridget would want me to carry on. She was always looking after other people and helped in a number of charities.
I phone the home every day and they always
say “ yes she’s fine, having tea and a biscuit” or something like that. I’m dreading the day when I phone and it’s bad news.
God bless.Peter x
I phone the home every day and they always
say “ yes she’s fine, having tea and a biscuit” or something like that. I’m dreading the day when I phone and it’s bad news.
God bless.Peter x
Good morning @Dutchman. Whenever I phone Margaret's nursing home they say something similar so I always come away feeling there are more questions than answers. How is she really? Does she know I ring regularly? Does she ask about me? But then I think "do I really want to the answers?" so the next time I ring I try to be upbeat and cheerful with the staff at the same time crossing my fingers that there won't be bad news or that I'll get answers I don't want to hear. Pathetic really but that's what dementia does to you, I suppose. Someone said to me early on in all this that it's really the carers, particularly family, who suffer from their loved one having dementia - more so than the patient themselves who are in that "distant land" where the rest of us can't go. I hope that that land is peaceful and friendly but how can any of us know?
I've been watching "Line of Duty" on iplayer in an effort to distract myself. The trouble is, though, that there are too many memories evoked. We used to watch it together for the first couple of seasons, pre-dementia, and then as each of the next few came I watched them with Margaret there but not really understanding what was going on and asking questions rather like child e.g. "What's that man doing" and me trying to explain an almost impenetrable plot line to her, normally without success. It was trying then but I would give all of my substance to have her there now asking unanswerable questions. It's so lonely as it is. As you have said more than once, Peter - "bloody dementia"!
God bless all of you
Hi @blackmortimer. I’ve tried to do all the “right” things this morning - go for a walk, make a list of jobs and then visit the home trying to sort a pair of slippers issue ( they’re too big but staff are confused about whether that’s true!).
Yes we hear that our love ones are ok but that doesn’t give us an idea on a typical day. I’d like to know what it’s like from the moment Bridget gets up to when she goes to bed. I’m going to ask and make a nuisance of myself. We pay enough!
Ive tried LOD but can’t get into it yet as I question the acting and plot compared to the first LOD. Like you I feel unable to look at anything on TV that we watched together so it’s mainly Netflix or Amazon for me. Bridget couldn’t follow story lines and lost her ability to appreciate humour. Typical in dementia.
I cried buckets last night. It appears from nowhere and I’m questioning all the time why is it I cry? Is it for me (am I being self indulgent, loneliness, my grief) or for Bridget
( her decline and possible unhappiness, although do dementia sufferers have our emotions?) or for us both ( loss of the future, never a couple any more) ? I go round and round trying to make sense of it. Why us and why me and why Bridget?
I talk to people who ask after Bridget and me and I know they mean well but no one can ever get inside where I am and really know what it’s like. And that singles me out and makes me feel alone.
Good to hear from you and thinking of all my fellow posters today
Peter
Yes we hear that our love ones are ok but that doesn’t give us an idea on a typical day. I’d like to know what it’s like from the moment Bridget gets up to when she goes to bed. I’m going to ask and make a nuisance of myself. We pay enough!
Ive tried LOD but can’t get into it yet as I question the acting and plot compared to the first LOD. Like you I feel unable to look at anything on TV that we watched together so it’s mainly Netflix or Amazon for me. Bridget couldn’t follow story lines and lost her ability to appreciate humour. Typical in dementia.
I cried buckets last night. It appears from nowhere and I’m questioning all the time why is it I cry? Is it for me (am I being self indulgent, loneliness, my grief) or for Bridget
( her decline and possible unhappiness, although do dementia sufferers have our emotions?) or for us both ( loss of the future, never a couple any more) ? I go round and round trying to make sense of it. Why us and why me and why Bridget?
I talk to people who ask after Bridget and me and I know they mean well but no one can ever get inside where I am and really know what it’s like. And that singles me out and makes me feel alone.
Good to hear from you and thinking of all my fellow posters today
Peter
Ok.
I’ve just had a long talk with the home to understand Bridget’s day. It’s really worthwhile to do this as it gives a window into something I can’t experience. Bridget has her favourite carer apparently and it all seems ok and Bridget is content. But I’m not and probably never will be. We are the ones who are cursed with normal emotions.
if you consider it worthwhile ring and asks those small details from bedtime to waking and the rest of the day.
I’ve just had a long talk with the home to understand Bridget’s day. It’s really worthwhile to do this as it gives a window into something I can’t experience. Bridget has her favourite carer apparently and it all seems ok and Bridget is content. But I’m not and probably never will be. We are the ones who are cursed with normal emotions.
if you consider it worthwhile ring and asks those small details from bedtime to waking and the rest of the day.
Hi @Dutchman and @blackmortimer . Oh how your words resonate with me- I want to know everything about OH but I don't want to hear sad things- if that makes sense!
I have just rung the home and he has had breakfast - well a yogurt- that's a start as in hospital, and yesterday, he would only eat ice cream.
I have arranged to visit tomorrow afternoon- slots seem to always be available so maybe a lot of residents don't get visits. That seems sad- but perhaps they are settled and content in their new normal- I hope so.
Last week I took buns- I asked how they went down and was told they went the same day. So now I am making more- 24 butterfly buns- that will make me feel useful today.
I have just rung the home and he has had breakfast - well a yogurt- that's a start as in hospital, and yesterday, he would only eat ice cream.
I have arranged to visit tomorrow afternoon- slots seem to always be available so maybe a lot of residents don't get visits. That seems sad- but perhaps they are settled and content in their new normal- I hope so.
Last week I took buns- I asked how they went down and was told they went the same day. So now I am making more- 24 butterfly buns- that will make me feel useful today.
Hi there everyone.
I’ve taken a blow which only us here will appreciate for what it’s worth.
While sorting stuff out I come across one of those memory cards you put in a camera. I place it in a slot in the computer expecting pictures and what happens is that I hear Bridget’s voice talking long before dementia affected her speech. The camera had a recording function and she was getting confused over the buttons and talking to me about it.
it’s the only speech I have of her in all our marriage, half a dozen words said in frustration but normal and funny. It’s been over 4 years now since I can’t remember her voice or remember us talking together. Now I have her voice, a sentence meaning something. I should be thrilled but I’m shocked and very upset because it shows what I’ve lost, but I’ll treasure this little card and keep it safe.
peter
I’ve taken a blow which only us here will appreciate for what it’s worth.
While sorting stuff out I come across one of those memory cards you put in a camera. I place it in a slot in the computer expecting pictures and what happens is that I hear Bridget’s voice talking long before dementia affected her speech. The camera had a recording function and she was getting confused over the buttons and talking to me about it.
it’s the only speech I have of her in all our marriage, half a dozen words said in frustration but normal and funny. It’s been over 4 years now since I can’t remember her voice or remember us talking together. Now I have her voice, a sentence meaning something. I should be thrilled but I’m shocked and very upset because it shows what I’ve lost, but I’ll treasure this little card and keep it safe.
peter
I have moments where I remember vividly times when things were really bad here prior to Bridget going to her care home. Bad enough to floor me and cause me to be a crying wreck.
My counsellor has given me a technique that could help and I’d like to share it with you....see below.
My counsellor has given me a technique that could help and I’d like to share it with you....see below.
Anyway, hope that helps. Beautiful day out there today. Comfy slippers coming for Bridget today so I’ll deliver those later. She gave me a long wave yesterday when she saw me through the window. Both makes me happy and sad.
A scrap of comfort is that there is no way I could handle her now any better than the home. They have everything she requires and are on top of all her wants and needs. Who knows what her condition would have been like if she’d had stayed here for any longer. Probably hospital for her and maybe me as well.
God bless you all and pray today finds some peace for you. Peter
A scrap of comfort is that there is no way I could handle her now any better than the home. They have everything she requires and are on top of all her wants and needs. Who knows what her condition would have been like if she’d had stayed here for any longer. Probably hospital for her and maybe me as well.
God bless you all and pray today finds some peace for you. Peter
