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Dementia’s journey

kindred

Registered User
Apr 8, 2018
2,689
0
Hello my Forum friends

I’m well supported I believe by us fellow posters, Admiral Nurses, my counsellor and some of my family.

Having said that, I feel so different and alone now that Bridget has suffered this recent fall. Her whole manner has changed from fairly responsive to complete vacancy. I’m really thinking that I’m going to lose her within the near future. I just can’t see her surviving the next 6 months.

While she was on a fairly even keel I could just about manage my emotions from day to day but now her morality is what I think about all the time. And I’ve fooled myself into thinking that Bridget, as she was two weeks ago, could go on for a long time and I’d have her around for some form of relationship.

I fully understand that there’s an enormous difference between losing someone with dementia and they’re still alive and losing someone when they die , it’s the finality of it, the loss of any possible connection. I don’t need to explain this of course here because many have gone through this trauma and understand.

I’m just about hanging on by my emotional fingertips and I’m not sure what I’ll do when eventually she deteriorates further and dies. Perhaps I’ll die too.

Some time ago a poster here explained that the thought of taking their life,as an option due to the enormous grief they we’re suffering, was a actually a comfort. At the time I didn’t understand, now I do. You see, ending it now would deprive Bridget of her advocacy, my influence in her well-being, but once she dies my usefulness dies with her. My family would mourn, sure, but for how long? They’d get over it but I wouldn’t get over Bridget

peterx
Peter, here for you and you know I understand. Please don’t look ahead like this, talk about this to your counsellor. Kx
 

blackmortimer

Registered User
Jan 2, 2021
142
0
You have a gift, Peter. A gift for articulating what so many of us must feel and making us think about our own situation and, speaking for myself, helping us to understand slightly more clearly and by understanding hopefully deal better with our emotions. Everything you say about Bridget and your feelings of usefulness being snatched away chimes with what I have gone through. It's inevitable really. For 5 years or more, in my case, I was a sole carer as the dementia gradually rose like a tide coming in and I was more and more out of my depth until I was rescued at the last minute by the professionals riding over the hill. That was more than a year ago now and a good deal of that year has been a period of getting used to not being in charge, to not having to be on duty all the time and to coming to terms with the cruel reality of dementia.

It's not for me to offer advice. I wouldn't dream of doing so because we're all different, even when we face similar problems, and I believe we must all plot our own course. You are unique; your relationship with Bridget is unique; only you really know how you feel. So, keep posting, it obviously helps you and, speaking for myself , it helps me and I imagine others feel the same.

Thinking of you, feeling for you. God bless.
 

Dutchman

Registered User
May 26, 2017
1,282
0
73
Devon, Totnes
What is the matter with people? My daughter Claire has just rung and wanted to know how Bridget is ( Bridget is Claire’s step mum) and promptly tells me I’ve got to get used to Bridget falling and more or less tells me I’ve got to accept things.

Then she says I probably won’t like what I’m given when volunteering in the home tomorrow. Then she misunderstands the extent of Bridget’s inability to walk although I’ve explained it fully.

I’m so tired of trying to keep it together when all I really want to do is shout in their faces “why don’t you understand what I’m going through, why don’t you just get it”?

For others, like my daughter, it all seems so clear cut and logical how you manage all this when I’m really lurching from one emotion to another. Claire could sense my frustration and upset from my voice and said “ do you want to ring off”. I wish I had now.
 

Old Flopsy

Registered User
Sep 12, 2019
225
0
@Dutchman- Yes better to ring off as some people don't know what it's like to be constantly frustrated by the attitudes of people who we think 'should know better'. Sometimes when I see the caller ID I just let it go to answerphone because I can't face the questions! Thinking of you Peter.
 

blackmortimer

Registered User
Jan 2, 2021
142
0
How awful for you @Dutchman. Just what I suspect you didn't need. I think @Old Flopsy has it right. Better probably to ring off in such circumstances rather than risk making things worse. If it makes you feel any better, it may be a father/daughter thing. I get the feeling sometimes that my daughter thinks she can take charge of me and can be quite harsh when she thinks I'm missing the point or whatever. Then again she can be a deep well of support at other times without which I should have found these last years even worse than they have been so, on balance I'm glad to have her on my team! I'm sure if you think about it you'll find the same. Take it easy tomorrow. I'm sure there's several of us here who'll be thinking of you.

God bless
 

Dutchman

Registered User
May 26, 2017
1,282
0
73
Devon, Totnes
When I’m with someone or speaking to someone who doesn’t get it or says inappropriate things it makes me feel even more alone.

C S Lewis spoke of grief as fear. It’s fear of change, of more medical intervention, of the unknown, of not being in control and, of course, me losing Bridget more and more.

I understand that, now my family have me as a grieving husband, they’re stuck with it and it’s affecting their lives. All ok when Mum and dad are normal like us but now it’s kind of a burden they could do without in their busy, let’s be happy, don’t bring gloom into our way of life.

Perhaps I’m being unfair. Although I suspect it’s true in many respects. And would I be any different, not sure?
I just want some peace around all this. Is that too much to ask? It’s not being so caught up in it all and have some sort of perspective.

Crazy thing I did last night was to look at pictures of Bridget when she was better and I cried my heart out and couldn’t breath. Oh my love, why oh why did this happen to us? Am I being punished for something? My poor Bridget suffering so. You didn’t deserve this.

And now I feel I’m isolating myself again because I’m saying no to invites and just want to stay at home and be with my thoughts. And so I can cry in private.

peter
 

canary

Registered User
Feb 25, 2014
15,337
0
South coast
(((((((((((((((((((((hugs)))))))))))))))) Peter
Id just like to say that you are not being punished for anything and neither is Brigit.
Its just life with all its imperfections, trials and grief. We are surrounded by images of a perfect, care-free life and sometimes it seems to me that admitting your life isnt like that has become taboo.
 

kindred

Registered User
Apr 8, 2018
2,689
0
(((((((((((((((((((((hugs)))))))))))))))) Peter
Id just like to say that you are not being punished for anything and neither is Brigit.
Its just life with all its imperfections, trials and grief. We are surrounded by images of a perfect, care-free life and sometimes it seems to me that admitting your life isnt like that has become taboo.
Canary, you are so right about the taboo. You are right too that this is how life is.
Thank you. Love to you and Peter. Kindredx
 

blackmortimer

Registered User
Jan 2, 2021
142
0
When I’m with someone or speaking to someone who doesn’t get it or says inappropriate things it makes me feel even more alone.

C S Lewis spoke of grief as fear. It’s fear of change, of more medical intervention, of the unknown, of not being in control and, of course, me losing Bridget more and more.

I understand that, now my family have me as a grieving husband, they’re stuck with it and it’s affecting their lives. All ok when Mum and dad are normal like us but now it’s kind of a burden they could do without in their busy, let’s be happy, don’t bring gloom into our way of life.

Perhaps I’m being unfair. Although I suspect it’s true in many respects. And would I be any different, not sure?
I just want some peace around all this. Is that too much to ask? It’s not being so caught up in it all and have some sort of perspective.

Crazy thing I did last night was to look at pictures of Bridget when she was better and I cried my heart out and couldn’t breath. Oh my love, why oh why did this happen to us? Am I being punished for something? My poor Bridget suffering so. You didn’t deserve this.

And now I feel I’m isolating myself again because I’m saying no to invites and just want to stay at home and be with my thoughts. And so I can cry in private.

peter
It's OK, @Dutchman. If you feel like being alone, be alone. Sometimes I spend a whole day or good part of a day going over the many good times i had with Margaret. Like you I will maybe burst into tears but I will also smile when I remember a particularly happy moment. I find it's helpful. Sometimes I'll try and remember all the snatches of poems and songs that Margaret used to quote and I find it comforting. In this way she is and will be always with me because I have the essence of her and that never changes.

You're not being punished - but you may be punishing yourself because you feel you have fallen short in some way. But you haven't. You've done the best you ever could and have nothing to reproach yourself about. As someone said recently here, be kind to yourself, you need it.

God bless
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,672
0
High Peak
Please don't be too hard on your daughter, Peter. No, she doesn't understand what you're going through but how could she?

What she does know is that her father is very unhappy and that's very distressing for her. She is probably trying so hard to think of something positive to say to you each time she calls, something that could help you, make you less sad. But there is nothing she can say really, is there?

So if she gets it wrong, it's not because she's horrible or is refusing to 'get it'. She's trying her best and she cares about you - don't shut her out. She's having to deal with the ongoing loss of her mother AND a desperately unhappy father too, not to mention all the various everyday issues that may be happening within her own family. That's not easy.
 

DianeW

Registered User
Sep 10, 2013
847
0
Lytham St Annes
I agree Peter with the above, but I just wanted to ask you what you want your daughter to do and be like.....how would you like her to support you more, what can she say?

it’s very difficult and the hard part is grief effects us all differently........loss and dealing with it are very subjective and individual, but there is no right or wrong way, but I feel your pain is a great worry for her.

As a daughter myself, I want my Dad to be as happy as he can be, my Mum died 20 years ago and he has and will never stop missing her, I have spoke to him at great lengths and would be devastated if he was suffering as you are.

I am sure as said above your daughter is very worried about you both and she too doesn’t know how to be or cope, and I am sure she is just trying to make you feel better, it doesn’t mean she doesn’t care.

I am thinking of you and am sorry for what your going through.
 

Pusskins

Registered User
Jun 6, 2020
299
0
New Zealand
When I’m with someone or speaking to someone who doesn’t get it or says inappropriate things it makes me feel even more alone.

C S Lewis spoke of grief as fear. It’s fear of change, of more medical intervention, of the unknown, of not being in control and, of course, me losing Bridget more and more.

I understand that, now my family have me as a grieving husband, they’re stuck with it and it’s affecting their lives. All ok when Mum and dad are normal like us but now it’s kind of a burden they could do without in their busy, let’s be happy, don’t bring gloom into our way of life.

Perhaps I’m being unfair. Although I suspect it’s true in many respects. And would I be any different, not sure?
I just want some peace around all this. Is that too much to ask? It’s not being so caught up in it all and have some sort of perspective.

Crazy thing I did last night was to look at pictures of Bridget when she was better and I cried my heart out and couldn’t breath. Oh my love, why oh why did this happen to us? Am I being punished for something? My poor Bridget suffering so. You didn’t deserve this.

And now I feel I’m isolating myself again because I’m saying no to invites and just want to stay at home and be with my thoughts. And so I can cry in private.

peter
@Dutchman Peter, the first thing you need to realise, is that Bridget is not suffering. We the carers and spouses are the ones who suffer. When I visit MH and he looks so awful and has deteriorated recently, I can only be grateful that he isn't aware of what is happening to him. Dear God, how I wish this was not happening, but my only comfort is in the knowledge that MH hasn't a clue. (((Hugs)))
 

Dutchman

Registered User
May 26, 2017
1,282
0
73
Devon, Totnes
I’m worried, really worried that Bridget will now go downhill quite quickly.

I visited yesterday and we tried to get her to walk but, in addition to the damage from the fall, her dementia could stop her remembering how to walk. The home warned me of this. Her ankles are already beginning to be swollen due to the lack of movement.

I felt so sorry for her stuck and isolated in her room. She claps a lot now for communication and as I left to go home I could hear her clapping on her own. She immediately brightened the moment I arrived , as if the loneliness had been lifted by seeing me, just me , as someone special. We shared her meal and she wanted to kiss me a lot.

God, it’s so hard leaving her. I’m tempted to go in every day just to keep her company but I know that would be difficult. How long would that last? Do I go in everyday initially until she can be brought downstairs?

I’m in a whole new set of upsets and dilemmas now and it’s tearing me apart. Not only have I lost my Bridget to dementia, she is now on her own, lonely, isolated and probably feeling miserable. When she was ok and downstairs and walking she could see people and had company, albeit affected by dementia.

But I can’t realistically keep her company all day, everyday, can I? So the guilt and the sense of not doing enough overwhelms me. And I’m stuck with this image of her, on her own, a prisoner, just sitting there frustrated.

I lean on you guys far too much with my problems, I know that, so I feel a bit selfish in that respect. Please forgive me.

peter
 

canary

Registered User
Feb 25, 2014
15,337
0
South coast
Peter, please stop torturing yourself about what you imagine Bridget is feeling. Bridget does not think and feel the same way as you do anymore - dementia has changed all of that. She wont be feeling lonely and isolated because she is in her own little dementia bubble.
Its good that she is responding to you - treasure it, but when you are not there she will not be aware of the loss.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,672
0
High Peak
It's all too easy to think, 'How awful it must be...' because you would feel awful in that situation. But Bridget has advanced dementia. She no longer thinks things like, 'How awful...' because - simply - her brain can no longer process such thoughts. So her experience is nothing like the way you imagine - she lives in the moment.

And she smiles and is pleased to see you.
 

update2020

Registered User
Jan 2, 2020
39
0
I know that you come on here to let off steam and that is so helpful. Everyone deals with loss differently. Another friend of mine lost her young husband to suicide recently. She also writes beautifully about the confusing mix grief and resilience online: https://rachelemoss.com/2021/06/10/unbreakable-doing-well-two-months-on/. Our forms of bereavement are all different but there is a similar mix of grief, loss, guilt and survival to manage.
 

blackmortimer

Registered User
Jan 2, 2021
142
0
When I was a child, people used to speak of old folk as being in "second childhood" and I used to accept that as what happened to everyone as they got to old age. Then as I grew up I realised slowly that this wasn't the case and that what they were talking about was what we now call dementia. Possibly that all-purpose term will come to be seen as old-fashioned in years to come. However, I have come to understand that the "second childhood" model is not so far off the mark. From my own experience of caring for Margaret and looking back, it seems that she was gradually returning to how she was as a child, or at any rate teenager, and she probably saw me as an over-strict parent not allowing her to do things or go places that she wanted. A conversation the other day with the nurse in charge of Margaret's unit brought this hoe to me. She said that the consultant psychiatrist had increased the dose of Quetiapine and this had led to a general all-round improvement. Margaret seemed happier, more compliant and had been wandering around singing. I have to say my heart leapt because when I pressed her the nurse said, yes she thought Margaret was happy and that was frankly all I wanted to hear.

But it brings it home to me that @canary and @Jaded'n'faded are right, @Dutchman. Bridget is living in the present, in a world where she's probably content as long as her needs are met and probably doesn't think about you or her family or anything external once you've left. Perhaps this is something that dementia patients can teach us - live for the day, "carpe diem", "take no thought for the morrow". Easier said than done, I know, but worth thinking about.

God bless
 

notsogooddtr

Registered User
Jul 2, 2011
999
0
I know that you come on here to let off steam and that is so helpful. Everyone deals with loss differently. Another friend of mine lost her young husband to suicide recently. She also writes beautifully about the confusing mix grief and resilience online: https://rachelemoss.com/2021/06/10/unbreakable-doing-well-two-months-on/. Our forms of bereavement are all different but there is a similar mix of grief, loss, guilt and survival to manage.
She writes beautifully
 

Dutchman

Registered User
May 26, 2017
1,282
0
73
Devon, Totnes
Hello everyone @blackmortimer , @notsogooddtr ,@update2020 @Jaded'n'faded and @canary and others i've missed. The home have done a really good job in helping me be more reassured. They have sent me confirmation that there will regular checks and 121 time in her room and physio during the day. They are setting up music and there will be a tv eventually to keep her company. I can also visit whenever I want to volunteer or not.

Her pain killers are changing so that she feels less anxious when standing. All in all I can’t do any more, although I could go more often, but I’m strongly advised not to by my counsellor as she questions what would that achieve? I suppose it would be more for me than Bridget to ease residues of guilt I might have In not being there.

Thats the trick isn’t it, to really believe without a doubt that Bridget isn’t feeling what I’m feeling, that my perception of being lonely isn’t hers and she’s ok in her dementia world. Got to work on that.

peter
 

blackmortimer

Registered User
Jan 2, 2021
142
0
Sounds like good news, @Dutchman. You've hit on what I think is the nub of the matter - really believing that Bridget's world isn't like yours. It's taken me an awfully long time, but I think I might be there although every so often I waver, so don't beat yourself up if you have blips. Just try and believe and I think that you'll find it easier to cope. One thing you can say - the home really seem to be stepping up to the plate and it doesn't seem you need have qualms about the level of care. So give yourself a break, get a good night's sleep - you deserve it.

God bless,
 

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