Thank you @blackmortimer. Even with all your time filled with caring for Margaret you still have time for me. You’re a star.
Dementia’s journey
- Thread starter Dutchman
- Start date
Thank you for your kind remarks, @Dutchman . I feel we've all been thrust into a world none of us ever imagined and the least we can do is provide moral support and understanding. So I'm glad to listen and if I'm able to advise or, if I'm not, commiserate.
I'm just back from my now daily visit. I was able to get Margaret to drink most of her afternoon milk shake but not to take her calorie shot - she screwed up her face and said "too sweet" so that was that. At least she's keeping hydrated and so the discolouration on her lower legs has retreated which is a good sign. So everything's stable and when she nods off I tiptoe silently away. I don't think she's aware of me in the real world, but she sometimes calls out my name in her dream world and when I reply suitably she seems calmed so my visits do have a positive, if marginal, effect.
Now I have to deal with the dog so I'll say "God bless" and crack on!!
I'm just back from my now daily visit. I was able to get Margaret to drink most of her afternoon milk shake but not to take her calorie shot - she screwed up her face and said "too sweet" so that was that. At least she's keeping hydrated and so the discolouration on her lower legs has retreated which is a good sign. So everything's stable and when she nods off I tiptoe silently away. I don't think she's aware of me in the real world, but she sometimes calls out my name in her dream world and when I reply suitably she seems calmed so my visits do have a positive, if marginal, effect.
Now I have to deal with the dog so I'll say "God bless" and crack on!!
I was able to be of help to a new couple today, Joyce and Ron. Joyce is the resident and Ron her husband was visiting, both in their 90’s. It’s great to be able to help as he’s probably going through similar feelings and we’re all in this together. Felt useful.
Bridget was ok and I came away satisfied. I have to tell her to stay awake and she can sleep as much as she likes when I’m gone. She smiles when I tease her. A smaller and softer toothbrush has improved matters as Bridget let me brush her teeth for longer with little struggle.
It’s little things like this that make all the difference
peter
Bridget was ok and I came away satisfied. I have to tell her to stay awake and she can sleep as much as she likes when I’m gone. She smiles when I tease her. A smaller and softer toothbrush has improved matters as Bridget let me brush her teeth for longer with little struggle.
It’s little things like this that make all the difference
peter
Another dream last night where Bridget was normal ( I use this word to describe Bridget before dementia affected her, as we were as an ordinary couple) and we talked and I couldn’t understand how she could be normal when she had dementia.
I suppose it’s my mind wanting so much for Bridget to return to me and wanting her back to fill the loneliness. Thought I’d paint my bedroom but the colour I’ve bought is too dark. Going to B and Q to look for something lighter. Also a bit of maintenance work at the church this morning. This gives me a diversion and I’m sure Bridget would’ve liked it to know I’m keeping busy. Problem is that I have no one to chat it over with when I come home - that’s the fly in the ointment.
peter
I suppose it’s my mind wanting so much for Bridget to return to me and wanting her back to fill the loneliness. Thought I’d paint my bedroom but the colour I’ve bought is too dark. Going to B and Q to look for something lighter. Also a bit of maintenance work at the church this morning. This gives me a diversion and I’m sure Bridget would’ve liked it to know I’m keeping busy. Problem is that I have no one to chat it over with when I come home - that’s the fly in the ointment.
peter
At least the hospital are running tests , Mum still in hospital & no tests been done wk 10 ! ?♀️?
I know that feeling of emptiness when you get back home and there's no one to greet and tell about what you've been doing. For me the dog has to suffice. She's very good at greeting - much wagging of tail, running round in circles - but not at responding to my news! She looks interested but I suspect she knows that every time I come in there's a treat for her! Still, it's someone to talk to so I have to be thankful for small mercies. God bless,
Had a quite eventful afternoon. The road to the nursing home was closed due to repairs so I had to embark on a magical mystery tour of Suffolk as suggested by satnav so instead of the usual picture postcard villages, coloured cottages and golden fields I had some new picture postcard villages etc etc. Then when I got to my destination I found Margaret ever so slightly more alert than she has been for a while. I'm not sure she knew who I was although I did manage to exchange one or two sentences with her so I feel rather as you did the other day, @Dutchman. I managed to get her to have a milk shake plus, today her calorie shot so I came away feeling I'd actually achieved something. The staff seem to think that my regular visits are having a positive effect and Margaret definitely seems better than she was when we were really worried 3 weeks or so. The only down side - the truly awful news coming through the car radio such murderous carnage so at odds with the beautiful East Anglian scenery. I found myself weeping, not for once for sadness at Margaret's condition, but for mankind. So many souls to pray for. God bless, all of you.
I’ve been down this road before but it’s one I constantly visit.
I wonder and question if the dementia of our love ones was likely to happen, if Bridget’s vascular dementia was a certainty given it was likely she had TIA’s that I couldn’t prevent ( or could I?)! Many say “ yes, well she/ he has dementia “ as though it’s a forgone conclusion, a condition brought about by unstoppable forces.
But I’ve always needed reassurance that I was incapable of doing anything way back in 2013/14 when , I believe, she suffered little “funny turns “ while we were away on holiday. Could I have done something that could have avoided this misery of losing her.?
I torture myself by thinking this way but it’s constantly on my mind
I wonder and question if the dementia of our love ones was likely to happen, if Bridget’s vascular dementia was a certainty given it was likely she had TIA’s that I couldn’t prevent ( or could I?)! Many say “ yes, well she/ he has dementia “ as though it’s a forgone conclusion, a condition brought about by unstoppable forces.
But I’ve always needed reassurance that I was incapable of doing anything way back in 2013/14 when , I believe, she suffered little “funny turns “ while we were away on holiday. Could I have done something that could have avoided this misery of losing her.?
I torture myself by thinking this way but it’s constantly on my mind
I so understand Peter, but do not believe you could have made any intervention that would have prevented this developing.
We can help people with mental illness such as depression and anxiety, but little can be done for mental disease like dementia.
I so wish we could. All thoughts with you. Kindredx
We can help people with mental illness such as depression and anxiety, but little can be done for mental disease like dementia.
I so wish we could. All thoughts with you. Kindredx
I agree with you in one sense. @Dutchman namely that we seem almost programmed to think that whatever happens is somehow "our fault" so we're all too ready to say "if only" and blame ourselves, but in truth I think that when we do we're victims of "primitive" thinking. I'm no expert on vascular dementia but I have read up a lot about Lewy body dementia and am convinced that it's the result of the build up of (I think) proteins in the brain that the "bodies" that interfere with the brain's workings. Parkinson's is also due to Lewy bodies although in a different part of the brain which result in things like the distinctive tremor and the shuffling gait. I'm absolutely certain that all forms of dementia are the result of internal physical changes bringing about the interruption of the messages that make our brains function "normally" and causing dementia. So you couldn't have prevented Bridget from suffering from vascular dementia nor could I have prevented Margaret from contracting Lewy body dementia. One day, I hope, scientists will pinpoint exactly why these changes happen in some people and not in others. In the meantime all we can do is to make sure our loved ones are as well cared for as can be, be kind to ourselves and support each other.
I write as the ultimate non-scientist who can nonetheless read and reason! God bless, all.
I write as the ultimate non-scientist who can nonetheless read and reason! God bless, all.
Good news ?we may be allowed to visit again, I’ve had no luck in becoming an ‘essential care giver’ yet but at least I can chase that up in person soon. There is bound to be a ‘next time’.
Why can’t you visit? I missed something! Is it Covid? I’m now a registered volunteer in the home which they value as it helps with the staff and their work. Can you ask if that’s a possibility?
Peter
Peter
Covid outbreaks for most of last month. No registered volunteers that I know of. Every resident should be able to have one essential care giver. ❤️
Worth asking. Might be a way around. I do an additional Covid test which they send off.
Peter
Peter
Essential care givers do additional tests so that sounds the same. They did propose a volunteer scheme early last year but decided against it and I can see why given the nature of the home.
The causes of dementia are still uncertain - we know about changes in the brain but these are not always present (see The Nuns Study.) However, one thing that seems to be generally accepted is that dementia starts many, many years before any symptoms show.
Which means that by the time Bridget started having 'funny turns', the dementia was already there - nothing that you or anyone could do.
It almost seems that the best chance we have against dementia is spotting it before it starts - an impossible task! It seems that by the time anyone notices, it's already too late, which is extremely frustrating.
Thanks everyone for your comments which have consoled me a lot.
I’m at my sons house for the weekend, a journey of 260 miles, which has given me plenty of time to think about Bridget. What’s upset me ( it doesn’t take much!) is that she’s not sitting next to me while I drive, it’s just an empty seat. We would share a story, moan about the traffic, do a newspaper quiz and I miss all that. I look to my left and it’s empty. And it’s going to be the same going home. I could be sad for England.
I’m at my sons house for the weekend, a journey of 260 miles, which has given me plenty of time to think about Bridget. What’s upset me ( it doesn’t take much!) is that she’s not sitting next to me while I drive, it’s just an empty seat. We would share a story, moan about the traffic, do a newspaper quiz and I miss all that. I look to my left and it’s empty. And it’s going to be the same going home. I could be sad for England.
So, I’m on my way home after staying with my family and just having a motorway service station break. I always miss her so much when I’m coming home. The empty seat, the loneliness of the journey.
I’ve thought a lot during this journey and I don’t think I’ll ever fully accept she’s not coming home to me. Bit like when someone dies and the brain can’t accept the finality of it. I try to imagine her final days and if being on my own now for 2 years will prepare me for absolute loneliness. No visiting, no helping her.
I’m helpless in not have any radical way of altering this sadness and longing. People take on another relationship to fill the gap and I can understand that tremendous need but I only needed Bridget and she me. A relationship built over 30 years can’t be done again and realistically I can’t see myself starting again. We met in our late 30’s and went through loads of experiences and ended up with simple love. We were lucky and blessed, I see that now.
Peter
I’ve thought a lot during this journey and I don’t think I’ll ever fully accept she’s not coming home to me. Bit like when someone dies and the brain can’t accept the finality of it. I try to imagine her final days and if being on my own now for 2 years will prepare me for absolute loneliness. No visiting, no helping her.
I’m helpless in not have any radical way of altering this sadness and longing. People take on another relationship to fill the gap and I can understand that tremendous need but I only needed Bridget and she me. A relationship built over 30 years can’t be done again and realistically I can’t see myself starting again. We met in our late 30’s and went through loads of experiences and ended up with simple love. We were lucky and blessed, I see that now.
Peter
Hello everyone. Another day to get through.
It’s bank holiday Monday and I’m in that sort of mood where I fluctuate between resignation and being tearful. I suppose it’s all part of being on my own and not wanting to be like this.
Its so difficult to explain feelings that hurt so much. Where is the comfort to be had? Do I draw comfort from knowing I’m still sane, that I’ve survived so far, if it’s like this now then what about another 6 months?
It’s as though Bridget’s life here at home was another life I had and the reminders of her clothes ( wardrobes full), the ornaments ( collecting dust), her favourite CD’s, a kitchen full of stuff, all of it belonging to another person. If I try really hard while i sit here I can see her standing in front of me disturbing the silence of the room. Another human being intimately affecting my life.
Thousands of books have been written about loneliness and they’re intellectually interesting but, God, when it happens to you there are no words to describe the helplessness, pain, longing and just plain emptiness of one’s life. Unless anyone of you have found one!
I’m off to see Bridget soon for dinner. Perhaps I’ll feel better after. What’s new with anyone? Please share.
Peter
It’s bank holiday Monday and I’m in that sort of mood where I fluctuate between resignation and being tearful. I suppose it’s all part of being on my own and not wanting to be like this.
Its so difficult to explain feelings that hurt so much. Where is the comfort to be had? Do I draw comfort from knowing I’m still sane, that I’ve survived so far, if it’s like this now then what about another 6 months?
It’s as though Bridget’s life here at home was another life I had and the reminders of her clothes ( wardrobes full), the ornaments ( collecting dust), her favourite CD’s, a kitchen full of stuff, all of it belonging to another person. If I try really hard while i sit here I can see her standing in front of me disturbing the silence of the room. Another human being intimately affecting my life.
Thousands of books have been written about loneliness and they’re intellectually interesting but, God, when it happens to you there are no words to describe the helplessness, pain, longing and just plain emptiness of one’s life. Unless anyone of you have found one!
I’m off to see Bridget soon for dinner. Perhaps I’ll feel better after. What’s new with anyone? Please share.
Peter
