Dementia’s journey

[Stacey sue]

I feel your pain like so many others,words can’t describe this feeling of quilt,sadness loss ,loneliness and more. I phoned the care home to arrange a weekly 15 minute visit outside the window,and was asked if it was really necessary as we are in lock down? How can you love and be with someone for 37 years and just move on? MH has deteriorated so much with his dementia he can’t speak and I feel the need to see him while he is still alive. One day at a time!!

 

[Dutchman]

Stacy Sue. Like you I’m alway juggling with emotions. Ok then not, guilt when I realise I’ve spent the odd hour not thinking about Bridget. I often think that 30 something years together is never going to replicated again and how carefree we seemed at the beginning.

I can’t see myself moving on either. How
can I ? I don’t arrange anything, I just turn up at the home and hope to see her through the window, a chance to see her awake and glad to receive my flowers .

I went to my daughter bubble last night and neither she or her husband mentioned Bridget. It’s almost like she doesn’t exist anymore but I’m still married, she’s still my wife, we’re still a couple, just. I suppose it’s easier to not enquire and get on with other stuff. Hurtful though.
Peter

 

[Stacey sue]

Captain Tom who raised all that money for NHS said his wife had dementia and went into a ch .He visited her everyday for 5 years and said she had gone years before she died. He said life goes on and you live it or become a victim. I hope I can eventually move on. Keep your chin up Peter we will get through this.

 

[Lone Wolf]

I feel your pain like so many others,words can’t describe this feeling of quilt,sadness loss ,loneliness and more. I phoned the care home to arrange a weekly 15 minute visit outside the window,and was asked if it was really necessary as we are in lock down? How can you love and be with someone for 37 years and just move on? MH has deteriorated so much with his dementia he can’t speak and I feel the need to see him while he is still alive. One day at a time!!

I am in a similar position Stacey sue. Together 35 years 24 /7, partner now in advanced Alzheimer's & in a nursing home & not even window visits allowed. I try to phone every couple of days but they don't always make an effort to facilitate that. I phoned this afternoon & she was distressed, crying out " daddy daddy". I phoned again & spoke to the nurse but she could not say why partner was distressed. Now a night of non-stop worry.

 

[jenniferjean]

I went to my daughter bubble last night and neither she or her husband mentioned Bridget. It’s almost like she doesn’t exist anymore but I’m still married, she’s still my wife, we’re still a couple, just. I suppose it’s easier to not enquire and get on with other stuff. Hurtful though.

They probably didn't want to upset you, afraid of saying the wrong thing.

 

[Dutchman]

Hi everyone.

im in bitter regret here.

I’m going to say something that I’m ashamed of now and can’t put right and just shows how how shallow I am, and I believe, always have been.

I was more concerned sometimes with what my wife looked like and concerned what others might be thinking about her than what she must’ve been experiencing with her deterioration with the dementia. She tried her best, bless her, but I couldn’t see past her appearance. I mean, what is wrong with me? I’m talking this over with my counsellor next week, but I am so ashamed that I needed to offload this now. I feel sometimes that I just don’t deserve the help and support given. In fact what I do deserve is to be thought superficial and weak.

Now I’m feeling this it’s now something else that torments me. I don’t need forgiveness for that would shame me more, just to be noted by my dear friends on the Forum.

Peter

 

[Fitzalan]

Oh bless you @Dutchman. I find it hard to believe that your concern for Brigid's appearance was primarily motivated by your concern for her appearance and what others might think about her and less about how she was experiencing her deterioration and dementia. We can't know what our pwds are experiencing, even though we might have an inkling because of something they say or do, but we do know, or at least I do in the case of my mum, that they would be mortified if they appeared unkempt or uncared for. Caring for them and caring about their appearance for them is, in some sense, a way of honouring the person they once were. And yes, the fact that they are scrubbed and clean and neatly dressed does reflect on us as carers, but I don't think for a minute that's why we do it, and I don't think for a minute that's the sole reason you did it for Brigid. We do what we can for our pwd, even though at times we find it frustrating and exhausting and all the other things we experience, because these are the small things we can do to bring some semblance of normality (if you can call it that) to a bewildering situation.
I have no idea what your counsellor will say next week. All I can say is that you seem to have done your very best for Brigid, which is alll any of us can do, and there is no reason to torment yourself if you think your motivation for doing so was not as pure as you think it might have been.

 

[kindred]

Hi everyone.

im in bitter regret here.

I’m going to say something that I’m ashamed of now and can’t put right and just shows how how shallow I am, and I believe, always have been.

I was more concerned sometimes with what my wife looked like and concerned what others might be thinking about her than what she must’ve been experiencing with her deterioration with the dementia. She tried her best, bless her, but I couldn’t see past her appearance. I mean, what is wrong with me? I’m talking this over with my counsellor next week, but I am so ashamed that I needed to offload this now. I feel sometimes that I just don’t deserve the help and support given. In fact what I do deserve is to be thought superficial and weak.

Now I’m feeling this it’s now something else that torments me. I don’t need forgiveness for that would shame me more, just to be noted by my dear friends on the Forum.

Peter

Well, I am going to forgive you Peter and ask that you forgive yourself. I often felt excruciating embarrassment when out with Keith and folk were watching as of course they will. Sometimes folk crossed the road to say things like he’s really deteriorating quickly, isn’t he. I wanted to die with embarrassment and yes, I’ll admit it, shame.
We are human Peter it’s normal to feel these things, love Geraldine

 

[Dutchman]

Bless you Geraldine. I suppose I wanted to be good and efficient at looking after Bridget but, of course, the dementia found me out and discovered my weaknesses. I often think that had she been in my shoes she would have done much better and been more tolerant.
I’ll tell you this as a good friend, that on one occasion we as a family went to the beach and tried to encourage Bridget into the water. This was early summer 2019 and Bridget had started to neglect herself, wouldn’t get undressed and not eat properly. She’d lost weight quickly. She tried her best to join in, even got into a swimming costume and I saw the result of the dramatic weight loss in her poor body. I was shocked but, I’m ashamed to say, embarrassed So you see, how shallow and pathetic is that?

She never did get into the sea, too cold, but she tried her best and bless her, she was struggling with dementia and that’s the woman I’ve lost, determined, gutsy and very special. And that’s why I beat myself up all the time because I’ve been found wanting in so many areas. And the one I want forgiveness from can’t do that now

Peter

 

[Dutchman]

In the rawness of the moment I want to share how I’m feeling. Just come away from a visit to Bridget and had to park up as I can’t go home just yet as I’m too upset.
I went with flowers and they had to find her as she was walking around. I stood at the inner door and she was brought to the half glass of the door to see me.
She smiled warmly at me me. She’d had her hair washed and she looked lovely and I told her she looked beautiful. She then said “you need to come in” in such a way that I think she realises I can’t. She then walked off. All told 5 mins of restricted contact. The business of the home continues around her.

Like so many of us this is agony and the knife is turned every time we go. No wonder we get anxious when we decide to visit. Covid has quite rightly taken centre stage but when we’ve lost our love ones support it’s doubly hard.

I so want her in my arms again but I think she would react alarmed as she doesn’t know that closeness of me anymore. I can’t have what desperately want and this separation is a killer.

peter

 

[Dutchman]

My dear friends. I had another counsellor meeting today going over old stuff, that which I can’t get to terms with such as guilt, regret and feeling sorry. I feel sorry for Bridget being there even though it’s the best place for her because she’s looked after wonderfully.

I’m aware that everyone handles this differently and perhaps I think things through too much but that’s me and I can’t change the way I am. I took the chance to ask her what to expect regarding my emotions and how to cope when things dramatically change, from when Bridget can still be visited as I do now to that final moment when she has died and I really am on my own.

She couldn’t tell me to be fair as she’s never experienced this but she does have an educated opinion. Not the same though.

Is anyone able to help here but I do appreciate it’s a tender subject. I’m told that as I’m on my own now it won’t be such a dreadful experience but I’m not convinced. I see deterioration everyday I go and I live always with the thought of Bridget wasting away towards that day when it’s finally over.

If this is too raw a subject please don’t consider replying

Peter

 

[Up the Creek]

Dear Peter,

I have been following your posts for the past year (following my mum’s dementia assessment) and truly wish I could say something to help you though your turmoil.

My father was in a nursing home with Alzheimers. I used to visit him twice a week until one Monday I was just about to visit when I noticed a missed call on my mobile...it was a paramedic informing me that my partner had had a heart attack, he was ok and that they were taking him to hospital. I abandoned visiting my father, rushed home, packed a bag with changes of underwear, pyjamas, shaving gear etc and dashed off to the hospital. The receptionist had a young nurses take me to a small room and the thought crossed my mind that I was about to be given bad news (similar to what you see on programmes like Casualty).

My partner had died on route to the hospital and they hadn’t been able to revive him. The hospital wouldn’t let me drive home, I had to wait for someone (2 someones because my car had to be driven home too) to pick me up. In the two hours while I waited I sat with my partner. This was the first time I had been in this situation and it seemed the most natural thing in the world. I sat talking to him throughout and not once did I feel as if I was alone. I guess I was suffering shock but in those hours I think I passed through all the stages of grief through to acceptance. After all, sitting with his body I could hardly be in denial.

This had a big impact on my visits to my father. I had to reduce them to once a fortnight as the reality of his situation hit me hard. It was hard watching his decline knowing that had he any capacity he would have preferred my partner’s sudden passing. My father died a year later and for me it was a huge sense of relief. I didn’t want to be there at the end not did I want to see his body. My partner still looked like my partner ( I had only seen him three hours earlier) but my father no longer looked the father I wanted to remember. I has some photos I had taken in that last year but I have since deleted them.

I have no idea if there is a spirit world that we move on to when our bodies stop working but I visited a medium two years ago. The first thing the medium said to me was that I had three visitors, one of whom was my husband. I have been married twice before so I asked him which husband ( I was testing him!) and he immediately came back with, no, it’s your partner. From that point on he had me hooked. He told me my partner was my soul mate, that he was always with me and will be waiting for me when it my turn to leave this physical world. He asked me what the significance of yellow roses is. I hadn’t a clue but since then a yellow rose bush in my garden is always full of roses. This time last year a pink rose bush came out with one yellow rose. I have a pic of it covered in frost and a couple of days later snow. Regardless of what this is, it has comforted me. I don’t feel alone, i still say goodnight to him (in case he is listening!)

i am trying to say that until the final moment I don’t think you will know how you will respond., try not to preempt or pre-analyse your emotions. You are already going through all the stages of grieving and there may be a big sense of relief that it is finally over. I was fortunate in that with my partner‘s death all my memories were happy ones. I have had to erase the memories of the last year of my father’s life as they aren’t the ones I want to remember. If you haven‘t already made one, create a memory book. These are the memories you will want to keep and not be overwritten by the coming events. This is where you will find Bridget in the moments you think you are alone.

 

[kindred]

My dear friends. I had another counsellor meeting today going over old stuff, that which I can’t get to terms with such as guilt, regret and feeling sorry. I feel sorry for Bridget being there even though it’s the best place for her because she’s looked after wonderfully.

I’m aware that everyone handles this differently and perhaps I think things through too much but that’s me and I can’t change the way I am. I took the chance to ask her what to expect regarding my emotions and how to cope when things dramatically change, from when Bridget can still be visited as I do now to that final moment when she has died and I really am on my own.

She couldn’t tell me to be fair as she’s never experienced this but she does have an educated opinion. Not the same though.

Is anyone able to help here but I do appreciate it’s a tender subject. I’m told that as I’m on my own now it won’t be such a dreadful experience but I’m not convinced. I see deterioration everyday I go and I live always with the thought of Bridget wasting away towards that day when it’s finally over.

If this is too raw a subject please don’t consider replying

Peter

I think @ up the creek post is very wise, Peter, especially the memory book. I keep coming across things Keith had written, happy little notes to me, and this is such a comfort. I can only share my experience which was simply immediately after Keith died I felt nothing. I was numb. I had been with him nearly 24/7 while he was dying, listening to his breathing. I went on feeling numb for about six months, then it began to hit me, not so much being alone but missing him, and this is more or less the stage I am at now. I so value my friends on this forum so I am still here, if you see what I mean. And we will go on supporting you. All my thoughts, this is an appalling time
with love, Kindred.

 

[Jaded'n'faded]

It's always hard to say before the event how you will feel about something and I think the answer is very much 'That depends...' The manner of her death will play a part, i.e. she might gradually fade over a couple of weeks and you will know to expect it. Or she could have a sudden heart attack (god forbid!) and be rushed away to hospital. Obviously you would feel differently in either case.

Some of your emotions will change, some will stay the same. Your current anticipatory grief will have a focus which may change how you feel somewhat. But what I wanted to say most of all is that many of us find there is a sense of relief that the person we love no longer has to suffer the horrors of dementia.

 

[Dutchman]

Thank you for your reply today. I’m struggling all the time. Some are better than others. It gets me at the oddest moments, feelings of loss, regret, why us, it’s not fair, etc. And two things frighten me the most and they are that when she’s gone I’ll regress back to how I was 20 months ago and our memories in photos and words will just upset me even more.
Bless you , peter

 

[Dutchman]

Hi everyone. Let me first say that i’m dreadfully aware that i’m not the best at helping others through their torment in that i’m not following any post directly as you follow mine. For this i’m sorry but on the odd occasion if I can help i’ll try.

I suppose it goes without saying that to lead a solitary life after a number of years together seems not only strange but not normal. I often imagine Bridget sitting on the sofa, us just being a couple, the most normal thing in the world you could say. I guess it’s the stillness and quiet of the house that’s so palpable. I’m beginning to forget what it was like with her being here and how we led our lives before dementia . But trying to remember upsets me even more because that can never be again.

Shes in a home that i’m pleased with. If she wasn’t we’d be having a different conversation.
Sometimes when i see her there are moments of clarity that fool my brain into thinking that she’s ok and when i can finally enter the home we can communicate again. But, once again, i’m continually grasping at something that her dementia is going to be take away. And if I totally rely on my life being one of grasping for some sort of meaningful relationship with Bridget then what chance do i have of having some form of life away from her which i’m forced to have. It’s an agonising position to be in.

Anyway, i’m going on a bit here. I’ve said before that what i write is to get it “off my chest” so feel free to reply or not.

I’m mindful of you being alone right now, like me, and i send my love to you.

Peter

 

[Pusskins]

Hi everyone. Let me first say that i’m dreadfully aware that i’m not the best at helping others through their torment in that i’m not following any post directly as you follow mine. For this i’m sorry but on the odd occasion if I can help i’ll try.

I suppose it goes without saying that to lead a solitary life after a number of years together seems not only strange but not normal. I often imagine Bridget sitting on the sofa, us just being a couple, the most normal thing in the world you could say. I guess it’s the stillness and quiet of the house that’s so palpable. I’m beginning to forget what it was like with her being here and how we led our lives before dementia . But trying to remember upsets me even more because that can never be again.

Shes in a home that i’m pleased with. If she wasn’t we’d be having a different conversation.
Sometimes when i see her there are moments of clarity that fool my brain into thinking that she’s ok and when i can finally enter the home we can communicate again. But, once again, i’m continually grasping at something that her dementia is going to be take away. And if I totally rely on my life being one of grasping for some sort of meaningful relationship with Bridget then what chance do i have of having some form of life away from her which i’m forced to have. It’s an agonising position to be in.

Anyway, i’m going on a bit here. I’ve said before that what i write is to get it “off my chest” so feel free to reply or not.

I’m mindful of you being alone right now, like me, and i send my love to you.

Peter

Hello @Dutchman Your post mirrors my own thoughts and feelings exactly. The empty house I find hard to get used to. There's no way back to how things used to be. I try not to cry, but am afraid I fail miserably at that. It's only been 3 months since MH went into care. Perhaps I just need more time, I don't know. At least here in NZ, at this stage I don't have to worry about covid as well.

 

[Dutchman]

Something else has set me off and i’ve dissolved into tears again. It’s Saturday lunchtime and it’s quiet and i’m alone.

I still acutely believe I drove my Bridget away with my ongoing selfishness and being a self centred person, that i’m convinced that has been my basic personality. Why am i like this and I alway think i’ve been like this and now i’ve lost my Bridget for ever. I’m an only child ... does that have any bearing, i don’t know, but i’m not that bad am i? ....i just can’t seem to come to terms with anything.

Yes she has dementia but I can’t help thinking that just thinking of myself somehow made matters a lot worse. And now i’m paying the price. Bridget hardly ever felt she came first, always thinking of others, helping out, big family person, but me on the other hand mostly felt for my own wants. It seems that way.

Can this type of thing drive another away? It certainly can in normal relationships but can it magnify and increase the chances of dementia and Bridget’s need to escape the house and me. You see, i just don’t know for sure and not being sure one way or the other makes me very unhappy.

Once again thanks for listening

Peter

 

[kindred]

Something else has set me off and i’ve dissolved into tears again. It’s Saturday lunchtime and it’s quiet and i’m alone.

I still acutely believe I drove my Bridget away with my ongoing selfishness and being a self centred person, that i’m convinced that has been my basic personality. Why am i like this and I alway think i’ve been like this and now i’ve lost my Bridget for ever. I’m an only child ... does that have any bearing, i don’t know, but i’m not that bad am i? ....i just can’t seem to come to terms with anything.

Yes she has dementia but I can’t help thinking that just thinking of myself somehow made matters a lot worse. And now i’m paying the price. Bridget hardly ever felt she came first, always thinking of others, helping out, big family person, but me on the other hand mostly felt for my own wants. It seems that way.

Can this type of thing drive another away? It certainly can in normal relationships but can it magnify and increase the chances of dementia and Bridget’s need to escape the house and me. You see, i just don’t know for sure and not being sure one way or the other makes me very unhappy.

Once again thanks for listening

Peter

Hello Peter, me again. I don’t believe that you could have driven her to dementia any more than I drove Keith to it, but your mind is desperate to find reasons for this ghastly business.
The way you describe Bridget, thinking of others, is the way a lot of people, a lot of women like to be, it’s as though we care for ourselves when we care for others and our family. I’m sure it held a lot of plusses for her.
No of course you aren’t that bad. Your loyalty, love and care and the way you overcome your stresses to visit Bridget speak of a really good man
With love Geraldine.

 

[Pusskins]

Something else has set me off and i’ve dissolved into tears again. It’s Saturday lunchtime and it’s quiet and i’m alone.

I still acutely believe I drove my Bridget away with my ongoing selfishness and being a self centred person, that i’m convinced that has been my basic personality. Why am i like this and I alway think i’ve been like this and now i’ve lost my Bridget for ever. I’m an only child ... does that have any bearing, i don’t know, but i’m not that bad am i? ....i just can’t seem to come to terms with anything.

Yes she has dementia but I can’t help thinking that just thinking of myself somehow made matters a lot worse. And now i’m paying the price. Bridget hardly ever felt she came first, always thinking of others, helping out, big family person, but me on the other hand mostly felt for my own wants. It seems that way.

Can this type of thing drive another away? It certainly can in normal relationships but can it magnify and increase the chances of dementia and Bridget’s need to escape the house and me. You see, i just don’t know for sure and not being sure one way or the other makes me very unhappy.

Once again thanks for listening

Peter

@Dutchman I'm only a newbie at this game, but I think I've worked out that we mustn't blame ourselves. I've been down this road also, but if you do some research re what causes dementia you will find there are so many possible causes, none of which we could have caused ourselves. Things such as a low level of education, the herpes virus, an undetected B12 deficiency are just some of them. Some of our loved ones are prime candidates when you read these potential causes. MH was left-handed and needed glasses which nobody picked up at school and he was made to stand in the corner of the classroom and made to wear the dunce's hat. He also suffered quite badly from cold sores, so are these the reasons why he now has dementia? Blows to the head is another possible cause. Who knows what things might have happened to your dear wife which could have precipitated this outcome?
Don't beat yourself up. It won't do you or your dear Bridget any good. I'm sure I fell far short of being the perfect wife, but we are only human and have no control over our genetic makeup or what makes us tick.