Dementia’s journey
- Thread starter Dutchman
- Start date
My husband still has some speech and can usually make himself understood. What I have found is that he will react or comment to something that happened 5 minutes ago. I think it takes his brain this long to hear, understand and process something. If I ask him something and expect an immediate reply he will say ’you decide’ as it’s obviously too much for him to cope with quickly.
so I think expecting an immediate reaction to a question or comment is a bit optimistic
so I think expecting an immediate reaction to a question or comment is a bit optimistic
Thank you to everyone who replied to my post about speech. All very helpful and I’ll try anything that makes Bridget and me more together although I do know that it’s all very limited and I shouldn’t expect too much.
Over the last 3 years of visiting it’s been a very steep learning curve.
I’ve just come back from church where I thought I could get some comfort, but nothing. I’m shamed that I feel a fraud sometimes, that the loss of Bridget trumps everything and even the friends and the friendship there this morning doesn’t stop me missing her and the companionship she gave me.
I suppose it’s the loss of the one person who meant everything
Peterx
Over the last 3 years of visiting it’s been a very steep learning curve.
I’ve just come back from church where I thought I could get some comfort, but nothing. I’m shamed that I feel a fraud sometimes, that the loss of Bridget trumps everything and even the friends and the friendship there this morning doesn’t stop me missing her and the companionship she gave me.
I suppose it’s the loss of the one person who meant everything
Peterx
How’s is everyone today? I don’t write on here quite so often now, not because I’m not grieving anymore ( that will always be with me for in some form) but I’m sort of wrung out of emotions. I feel that in many ways I’ve just got to get on with it and there’s no magic solution waiting round the corner. No more avenues to explore.
Bridget’s well cared for and I don’t have the trouble or anxiety of caring for her like a whole load of staff can with immediate access to her medical and personal needs. Sure, I’d rather do this at home with her here but that would be selfish as things would be neglected and her well being would suffer.
So, life goes on, and sometimes it’s a struggle and sometimes it’s better. The Forum is my go to first comfort and for that I’m grateful.
Thanks everyone
❤️Peter
Bridget’s well cared for and I don’t have the trouble or anxiety of caring for her like a whole load of staff can with immediate access to her medical and personal needs. Sure, I’d rather do this at home with her here but that would be selfish as things would be neglected and her well being would suffer.
So, life goes on, and sometimes it’s a struggle and sometimes it’s better. The Forum is my go to first comfort and for that I’m grateful.
Thanks everyone
❤️Peter
I’m so glad that you have finally turned this corner.
I think it must be much more difficult to do if your partner is still alive,
I spent a long time grieving for my husband whilst he was still alive and now, 6 months after his death I consider myself to be in a better position that you and many others on here.
At least I have been given the opportunity to start to let him go.
I hope that you get stronger as time goes on. Just don’t try to feel better too fast, I’m sure the grief will still hit you in waves, just go with it, give in to it and stay at home until you feel better again then start slowly trying to build a different life for yourself.
All my good wishes to you. Carole.
Thanks Carol. I’m pleased for you knowing that you are in a better place. There’s too much grieving in this world.
I get to a point where I believe I’m ok and then darkness falls and I’m going over all the highlights of horribleness that I experienced when Bridget was here.
My poor Bridget really struggled in the end to show me she loved me even if was just showing up in town to share a coffee. It was a need to remain close because I believe she knew she was drifting away. So sad. And I never even thought she’d one day leave me.
I get to a point where I believe I’m ok and then darkness falls and I’m going over all the highlights of horribleness that I experienced when Bridget was here.
My poor Bridget really struggled in the end to show me she loved me even if was just showing up in town to share a coffee. It was a need to remain close because I believe she knew she was drifting away. So sad. And I never even thought she’d one day leave me.
God I’m hopeless really.
Today I usually visit Bridget and I’m always torn between going and not going, seeing her as she is and remembering what she was. So the guilt piles on as I’ve decided not to go and I feel like a coward and letting her down. Problem is when you’re on your own is that you’ve no one to gee you up and persuade you one way or other. Every visit just opens up old wounds.
I’ll phone the home and explain
Today I usually visit Bridget and I’m always torn between going and not going, seeing her as she is and remembering what she was. So the guilt piles on as I’ve decided not to go and I feel like a coward and letting her down. Problem is when you’re on your own is that you’ve no one to gee you up and persuade you one way or other. Every visit just opens up old wounds.
I’ll phone the home and explain
Peter you are once again giving yourself a hard time for know good reason…..you have to learn to accept the decision you make and stop torturing yourself…….
i would go anyway as it might make you feel better seeing bridget or if you stay at home, you probably wont feel any better. guilt has no place on your shoulders so you can wipe the particular monster off your shoulders with the DTP bashing stick that weve all had a turn of.
Oh Peter, I do know that feeling! I visited mum once a week and every Monday I would dread it, in fact, the thought of having to go often hung over me all weekend. The silly thing was, no one in the world cared whether I visited or not - not my brother, not the care home staff who looked after her well and least of all, not my mother.
I felt trapped in a no-win situation. If I went to visit, it made no difference but left me traumatised. If I didn't go I'd feel really bad because I was the only person who did visit and I felt I was neglecting my duty as her daughter. Eventually I realised that the only person putting all that pressure on me..... was ME.
It's so hard. I can remember posting here on TP - 'I don't want to go!' Members would reply and say, 'Well, don't go then! Have a bit of time off,' but somehow their 'permission' didn't help because I still couldn't give myself permission. What worked for me (to an extent!) was to tell myself I would just go for 5 minutes, give mum her chocolate buttons, read the care notes in her room to make sure nothing untoward had occurred, then leave. In fact, usually I ended up staying longer than that, but as long as I had at least turned up, I didn't feel bad if I kept the visits short. By the time I got home, I did feel much better for having visited, even if it mostly felt like 'going through the motions'.
So I'm going to say what was said to me: If you don't want to go, don't go! But if that will leave you feeling bad, just do a 5 minute visit.
I felt trapped in a no-win situation. If I went to visit, it made no difference but left me traumatised. If I didn't go I'd feel really bad because I was the only person who did visit and I felt I was neglecting my duty as her daughter. Eventually I realised that the only person putting all that pressure on me..... was ME.
It's so hard. I can remember posting here on TP - 'I don't want to go!' Members would reply and say, 'Well, don't go then! Have a bit of time off,' but somehow their 'permission' didn't help because I still couldn't give myself permission. What worked for me (to an extent!) was to tell myself I would just go for 5 minutes, give mum her chocolate buttons, read the care notes in her room to make sure nothing untoward had occurred, then leave. In fact, usually I ended up staying longer than that, but as long as I had at least turned up, I didn't feel bad if I kept the visits short. By the time I got home, I did feel much better for having visited, even if it mostly felt like 'going through the motions'.
So I'm going to say what was said to me: If you don't want to go, don't go! But if that will leave you feeling bad, just do a 5 minute visit.
Thank you all for your great replies. I went yesterday and I’m going again today.
Yesterday I opened the homes door only to be met by Bridget as she was walking about. Immediately she gasped and said “dad” ( I believe she thinks I’m like her daddy, tall and lanky) and it was quite emotional as you can imagine. She was really clingy and we had a close visit.
So thanks once again for the encouragement to go
Peter
Yesterday I opened the homes door only to be met by Bridget as she was walking about. Immediately she gasped and said “dad” ( I believe she thinks I’m like her daddy, tall and lanky) and it was quite emotional as you can imagine. She was really clingy and we had a close visit.
So thanks once again for the encouragement to go
Peter
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Bruno is great as if he’s been here for a long time. Sleeps at lot and now enjoys the garden in the sunshine. Not fussed much about going out. Purrrrfect really?
Just want to share something that others may have also felt.
Today I went to Dartmouth Music Festival ( all free) and sat in two classical concerts which were great. My daughter and family met me later for a band playing at the bandstand which was very noisy ( indi pop??? ) hundreds of families, lots of drink, loads of cheerful laughing people .
All ok until one of the wives gets me in conversation and I try desperately not to kill it by saying my wife’s in a care home. I’m in no man’s land because part of me wants to enjoy the day, be normal, talk about other stuff, but always at the back of my mind is my Bridget and how we shared moments like this and I feel guilt and loss knowing she’s somewhere else. I really wanted to get home away from the possibility that I’d start talking about dementia.
It’s impossible to fully enjoy others company when you may attract pity, sympathy or even them just not knowing what to say and it all gets a bit embarrassing.
I finished my drink and left feeling both relieved and somewhat awkward.
Today I went to Dartmouth Music Festival ( all free) and sat in two classical concerts which were great. My daughter and family met me later for a band playing at the bandstand which was very noisy ( indi pop??? ) hundreds of families, lots of drink, loads of cheerful laughing people .
All ok until one of the wives gets me in conversation and I try desperately not to kill it by saying my wife’s in a care home. I’m in no man’s land because part of me wants to enjoy the day, be normal, talk about other stuff, but always at the back of my mind is my Bridget and how we shared moments like this and I feel guilt and loss knowing she’s somewhere else. I really wanted to get home away from the possibility that I’d start talking about dementia.
It’s impossible to fully enjoy others company when you may attract pity, sympathy or even them just not knowing what to say and it all gets a bit embarrassing.
I finished my drink and left feeling both relieved and somewhat awkward.
Hello Peter, it’s difficult for you and them too I think, and it’s natural that people may ask awkward questions when your in company.
Easier said than done but maybe explain by confirming that - your wife is ill and now lives in a care home, you see her regularly and spend time together most days, and just leave it at that, you change subject so they know you don’t wish to say more……attracting pity, empathy, sympathy or people not knowing what to say, are all natural responses I think when people are just being kind.
Maybe think of how you would respond to a person in your situation, because sometimes people get comfort by talking about their loved one, others would rather not….. so it’s hard to judge, but most people will be led by you and how you chose to engage I think x
Easier said than done but maybe explain by confirming that - your wife is ill and now lives in a care home, you see her regularly and spend time together most days, and just leave it at that, you change subject so they know you don’t wish to say more……attracting pity, empathy, sympathy or people not knowing what to say, are all natural responses I think when people are just being kind.
Maybe think of how you would respond to a person in your situation, because sometimes people get comfort by talking about their loved one, others would rather not….. so it’s hard to judge, but most people will be led by you and how you chose to engage I think x
Thank you for your reply. All makes sense.
Need to ask. Are you ok? Your reply was early this morning so what’s keeping you awake?
Peter?
Need to ask. Are you ok? Your reply was early this morning so what’s keeping you awake?
Peter?
I can remember meeting with some friends I hadn't seen for a while one Christmas and one of them politely asked how my mum was. I said, 'She's fine, thanks,' and changed the subject. I could see the relief on the friend's face.
Mum was anything but fine but I couldn't tell anyone about it without completely spoiling the Christmas mood and merriment - I just felt it wouldn't be fair. But at the same time I wanted people to understand that no, mum wasn't fine and was never going to be fine again and how I felt about that.
Difficult situation for you @Dutchman There are no easy answers
Mum was anything but fine but I couldn't tell anyone about it without completely spoiling the Christmas mood and merriment - I just felt it wouldn't be fair. But at the same time I wanted people to understand that no, mum wasn't fine and was never going to be fine again and how I felt about that.
Difficult situation for you @Dutchman There are no easy answers
Oh I’m fine Peter thank you for noticing though…… me I’m a night owl and often still up at 3 am, especially on a non working day, shattered by end of my working week though ? x
Thanks for the reply @Jaded'n'faded. Always there for me?.
I always feel when in company that I can’t fully engage as that part of me that wants completing is living in a care home and my mind goes to Bridget as if she’s saying “ don’t forget me”.
When I’m with her I feel awkward telling her what I’ve been doing because she’s not doing it with me. I feel sad that she’s in the home and can’t share my activities…. a guilt that I’m doing stuff and she can’t. So I censor what I say even though I know she probably doesn’t understand now much about my life. But when you’ve shared things for 30 years it almost feels that I’m being sneaky.
It’s very complicated and depressing
Peterx
