• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Dementia’s journey

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
I’m hoping someone will appreciate the significance of what I experienced this evening and I’ll try anyway.

Ever since she’s been in the home ( 2 years and before ) Bridget’s never remembered family and has forgotten me as her husband. Today I tried to get her to remember way back when she was young and I mentioned cycling and she said “my brother” and when I said “Colin” she said yes. Wow!! Also she gave appropriate responses to things I said and the appropriate face expressions and the way of speaking. We almost had a conversation albeit very few words.

Add to that the want to kiss me hard on the lips ( sorry if that is too much) and hold my hand tight, well, I get fooled into thinking here’s my old Bridget coming back. Which backfires of course when I have to go home alone and miss her all over again.

I don’t which is best - vacancy or knowing. Each, it seems, has consequences.
 

Andy54

Registered User
Sep 24, 2020
157
0
@Dutchman. It's odd isn't it how our loved ones can sometimes surprise us, do we ever know what they are really thinking. Deb hasn't really recognised me for some time now but she does seem to regard me as a "familiar friendly face". The last couple of visits she has been unusually talkative, unfortunately her speech is just a jumble of partly formed words which it is impossible to understand but at times she was clearly enthusing about something and seemed puzzled by my lack of an appropriate response. One of the things that saddens me most is not being able to have any meaningful communication with her.. At the end of my last visit as the carer was taking her back up in the lift, just as the door was closing Deb leaned to the side and blew me a kiss. Was this a show of affection for me or just a casual goodbye for no one in particular - I 'll never know.. As you say Peter which is best knowing or not knowing?
Andy
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
Hello @Andy54 good to hear from you. I’m sure as I can ever be that Bridget doesn’t remember my visits but when I do visit she seems to remember me as someone relatively special - how special I’ll never know. All I do know is that she responds to me and that keeps me going day to day.

I do plan for things to look forward to even if it’s a simple walk but minute by minute Bridget and what I’ve lost is always on my mind. It permeates everything and why wouldn’t it. She and I were one and we revolved around each other.

I’ve made other friends now but when we were ok together that’s really all we needed. And that was enough. Probably like loads of couples if you’re easygoing and happy with each other then why search elsewhere for diversion.
That’s why, for me, I find being on my own difficult and I’m lonely. And saying that seems somewhat shameful in today’s society but many people are lonely and suffer in silence which I’m not good at doing.

Bless you Andy
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
I feel I should just be getting on with it but it’s so hard. It’s the loneliness I feel so much now. The house is a typical 3 bedroom and used to be filled with sounds and her presence. I took all that for granted as you do in normal times and now the house is quiet and empty and if I don’t go into a room it stays like that -,no one to alter or move stuff. The quiet and stillness is deafening.

It’s like each room is a vacuum that needs filling. You know I used to get irritated and frustrated by things she did. Now I’d give everything to have that back.

Recently I’ve got uncomfortable when I hear chat shows on the radio, people discussing all sorts. Because that’s denied me now, I’m not used to it because my life is Bridget’s restricted vocabulary and I’m getting out of the habit of social interaction and quite used to just me and my cat. Anyway most of what goes for importance in chat shows is superficial ( my opinion). This whole business of dementia has focused my attention on what is really important- loving someone and the need to be loved back. If you have that you have everything.
 

Stacey sue

Registered User
Jan 24, 2020
117
0
I still have enormous guilt for Dave being in a ch, feeling that I should be looking after him? I miss him so much would have him back although he isn’t there, it’s just him physically . Life in total limbo. Never lived on my own, and I don’t like it . I spend days with him in the ch, it has got obsessive and I feel bad when I don’t go. I like to think he knows me but I might be just a familiar face, who knows?
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
Hello @Stacey sue. Good to hear from you.

There must be a trillion books written about loneliness and I’ve read a few. Although they help to get into the mind of someone going through this our loneliness is by its nature so intimate. I went out to see my daughter and her husband last night, had a nice meal, watched some mindless game show, but I thought of going home to emptiness and that’s what loneliness does, it invades everything.

And on the drive back to my home the passenger seat is empty where Bridge would sit and chat about the evening. She’d tell me to slow down, dim my lights, “shall we go straight to bed?”, “what about tomorrow?”, and now nothing.

And then I’m plagued by dreams last night of Bridget being chatty and normal and I lose her again. It’s just never ending. Someone said yesterday that they’d been on their own for 10 year as if it were a badge of honour. Good for them!
 

Stacey sue

Registered User
Jan 24, 2020
117
0
Thanks for your reply. I can not replace Dave, but I know I can’t and don’t want to live on my own for the rest of my life. Yes I agree, I hopefully will not wear that badge. x
 

update2020

Registered User
Jan 2, 2020
163
0
I still have enormous guilt for Dave being in a ch, feeling that I should be looking after him? I miss him so much would have him back although he isn’t there, it’s just him physically . Life in total limbo. Never lived on my own, and I don’t like it . I spend days with him in the ch, it has got obsessive and I feel bad when I don’t go. I like to think he knows me but I might be just a familiar face, who knows?
 

update2020

Registered User
Jan 2, 2020
163
0
Yes, every word of this. , @Stacey sue

Except I don't visit that often any more. When visiting started again this year (after a very long gap) it was very difficult because he was so very very agitated about being kept in his room to the point where it could be frightening and certainly was not doing anybody any good. Eventually I cut my visits to once per week. Now, things are a bit better, I am trying twice a week. It's a complete lottery as to whether the visit will 'work' or not, but he is generally calmer. I feel so guilty when I know others go daily. (The care home is an hour's drive from here so I cannot just pop in).

But I still have that feeling of obsession - whether I visit daily or not - I feel I have to work really, really hard at not thinking about him all the time. I'm either obsessed about visiting or obsessed about distracting myself about not visiting, if that makes sense? I cannot imagine living like this forever, but there is no end in sight.
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
Yes, every word of this. , @Stacey sue

Except I don't visit that often any more. When visiting started again this year (after a very long gap) it was very difficult because he was so very very agitated about being kept in his room to the point where it could be frightening and certainly was not doing anybody any good. Eventually I cut my visits to once per week. Now, things are a bit better, I am trying twice a week. It's a complete lottery as to whether the visit will 'work' or not, but he is generally calmer. I feel so guilty when I know others go daily. (The care home is an hour's drive from here so I cannot just pop in).

But I still have that feeling of obsession - whether I visit daily or not - I feel I have to work really, really hard at not thinking about him all the time. I'm either obsessed about visiting or obsessed about distracting myself about not visiting, if that makes sense? I cannot imagine living like this forever, but there is no end in sight.
Something my counsellor said to me which helps. She said that the days you don’t visit must be seen as part of the overall plan for the week. Threat these days that you don’t visit as essential to your well-being, part your strategy for keeping sane. To visit everyday wouldn’t be good as I’d soon burn out so it’s better all round to build this time away into the week.
For me that was sensible advice. Doesn’t mean I still don’t get guilty. I phone every day anyway so I keep in touch that way.
 

Stacey sue

Registered User
Jan 24, 2020
117
0
The ch is 45 mins away, sometimes I bring him home for the day and take him back by 5. He is always pleased to be back there. I suppose I am doing it for myself, he sometimes knows it was his home,but soon forgotten.His mobility is effected now and they told me in the home that he can just forget how to get up or walk very suddenly, make the most while he can,but it is difficult. like you say ,no end in sight. Thanks all for being there, x
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
The ch is 45 mins away, sometimes I bring him home for the day and take him back by 5. He is always pleased to be back there. I suppose I am doing it for myself, he sometimes knows it was his home,but soon forgotten.His mobility is effected now and they told me in the home that he can just forget how to get up or walk very suddenly, make the most while he can,but it is difficult. like you say ,no end in sight. Thanks all for being there, x
Hello @Stacey sue. How brave you are bringing him home. I’ve often thought what a good idea that would be. Sort of bring her back to where she used to live. But ( and it’s a big but) I would never know how she would react and I would probably be expecting a good experience when, really, it would be a disaster. I imagine her sitting down and saying “ you’ve kept it nice” and “ I’m going up to our bedroom”. And I wouldn’t be lonely for her.

I dream about taking up our lives where we left off and it fills my eyes with tears now that that’s all gone. Realistically I could never effectively do what the care home staff do for Bridget. If I was a millionaire I’d have options but I’m not.

It would be just for me I suppose, like you say, but what else is there? We go on hoping and is cruel that we are reminded everyday what we’re losing. There is one good thing in that I’ve made some friends with the home staff and love them all for what they do.
God bless, Peter
 

lollyc

Registered User
Sep 9, 2020
774
0
@Dutchman, I don't think even being a millionaire would change anything. Yes, you could pay for full time carers to have Bridget at home, but the thing you want - what we all want - is to have pre-dementia Bridget back. No amount of money, or love, can do that. Quite simply, life is unfair. It just is.
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
@Dutchman, I don't think even being a millionaire would change anything. Yes, you could pay for full time carers to have Bridget at home, but the thing you want - what we all want - is to have pre-dementia Bridget back. No amount of money, or love, can do that. Quite simply, life is unfair. It just is.
I value your honesty because at times I need to be told as it is. Your right of course that life isn’t fair, it isn’t just or able to guarantee happiness for ever. Even if we live long and with each other something’s going to get us!

The hurt and cruelty of this makes me think irrationally and wanting things to be different when they can never be. Just wish I was a lot less emotional and could think more sensibly. But the shock of all this messes me up.
Thanks @lollyc for your support
 

Dutchman

Registered User
May 26, 2017
1,751
0
74
Devon, Totnes
I hate being on my own so much. If I bang my toe, cut my finger, live in life’s small emergencies, there is no one to moan with, to share gripes or even share good stuff.

I know I have to get on with it as I’ve no alternative and there many others equally affected or worse but who else can I talk to if not on our Forum.

Fed up of Devon. Peter
 

update2020

Registered User
Jan 2, 2020
163
0
I couldn't bring my OH home now. He isn't up to it either mentally or physically. And so, of course, neither am I. It takes a team to look after him 24/7 now. Doesn't stop me feeling guilty about giving up when I did though. Maybe in some virtual reality there would or should have been another way in which things didn't get quite so tough for him. Times are very tough at the moment. He is a lovely, lovely man (everyone agrees) but he is very difficult to look after and in lots of mental and physical pain. I just blurted out how 'unfair' it all was - and the wonderful staff agreed. It is - it just is - and there is nothing I can do about that. And I keep reminding myself that there are lots of unfairnesses in peoples' lives around the world and a few are even worse than ours. I often cannot cope with the News but when I do it is a good reminder of the bigger scheme of things.
 

lollyc

Registered User
Sep 9, 2020
774
0
I couldn't bring my OH home now. He isn't up to it either mentally or physically. And so, of course, neither am I. It takes a team to look after him 24/7 now. Doesn't stop me feeling guilty about giving up when I did though. Maybe in some virtual reality there would or should have been another way in which things didn't get quite so tough for him. Times are very tough at the moment. He is a lovely, lovely man (everyone agrees) but he is very difficult to look after and in lots of mental and physical pain. I just blurted out how 'unfair' it all was - and the wonderful staff agreed. It is - it just is - and there is nothing I can do about that. And I keep reminding myself that there are lots of unfairnesses in peoples' lives around the world and a few are even worse than ours. I often cannot cope with the News but when I do it is a good reminder of the bigger scheme of things.
I find that reminding myself there are others dealing with all manner of miseries helps me get through a bad day. I have friends who have lost a teenager in a hit and run, and others who lost a toddler to a complication of a common childhood disease. Lives never lived. Life's not fair, and it never has been. I'm not sure why we think it should be. Doesn't make it any better though!
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,070
0
High Peak
My mother would often say, 'No one ever said life is fair,' and I always hated it when she said it! But it's true.

Even though she's been dead 2 years and it's probably more than 10 since she said anything remotely appropriate, I still remember those words whenever I feel life's not fair. Not sure it helps but it does remind me that life has no rhyme or reason...

There's no answer to the question, 'Why me/why us?' Might as well ask 'Why not me?'
 

Grannie G

Volunteer Moderator
Apr 3, 2006
75,829
0
Kent
I don`t know if this will help anyone but I always count what I have and what I had rather than what I don`t have.
 

Forum statistics

Threads
123,993
Messages
1,819,689
Members
75,040
Latest member
Dawnyinthegarden