Oh my dear, so understand. It all gets too much, just far too much. I so hope you get your quiet day. Love and best, GxxxI needed a kitchen implement out of the drawer and had to take everything out to find it. It was like unpacking ‘life before’ as all the items I used to use for regular family gatherings came out which I don’t use any more. Tears sprang to my eyes as I mourned for the life that has gone and I must admit I haven’t cried during the past few months, just ground on. A moment of self pity but it seemed to symbolise this terrible disease that has sprung up at us so suddenly and unexpectedly. I think I am tired after a busy week because I snapped at him on our walk yesterday evening after he asked me for the umpteenth time what we were doing this week, told me he was going to the pub, and could we cross the river over ‘that bridge’ which is the railway bridge. After that he did subside and we had a lovely walk and evening. My daughter asked us over today but for the first time I said no, because I couldn’t face driving over and then having him constantly wanting to go home soon after we have arrived. I had a good nights sleep, and can’t help thinking that he must be very tired too, because he is sleeping in this morning. A quiet day I think
Pulling everything together
- Thread starter Grahamstown
- Start date
Mourning for the life that has gone is not self-pity @Grahamstown - it is grief. The grief is real and needs to be expressed every now and then.
It was like that when I packed up mums home to sell it in order to pay her care home fees - I kept finding things at the back of her cupboards that reminded me of the mum she used to be and had to go and have a little weep.
Its like that now with the garden shed. We need a new shed as the old one his rotten and falling apart. I want a new one so that I can use it and get all the gardening things out of the conservatory again. OH put up the old one but can no longer sort this out, so I got a firm to take down and dispose of the old one and put together the new one. It is all lovely and Im pleased but there is this terrible feeling that I have destroyed and got rid of something that OH once did and will no longer ever do again; as if I am somehow discarding something of him.
It was like that when I packed up mums home to sell it in order to pay her care home fees - I kept finding things at the back of her cupboards that reminded me of the mum she used to be and had to go and have a little weep.
Its like that now with the garden shed. We need a new shed as the old one his rotten and falling apart. I want a new one so that I can use it and get all the gardening things out of the conservatory again. OH put up the old one but can no longer sort this out, so I got a firm to take down and dispose of the old one and put together the new one. It is all lovely and Im pleased but there is this terrible feeling that I have destroyed and got rid of something that OH once did and will no longer ever do again; as if I am somehow discarding something of him.
Canary, I know, I feel the same. I tell myself that our knowledge and memories are stored in our heads forever, those of us without dementia, so we can always access them. It works sometimes ... I also tell myself that grief is normal, grief is normal, the full weight of it will pass ... again, works sometimes. I keep on looking for new ways to keep going. So good to hear from you. Gxx
Yes. I know this one. Is it perhaps to do with having to destroy in order to rebuild? Agonising.
Last year I began reorganising and in a sense repurposing our dead son’s bedroom. He died in 2003 so I had waited a long time. We had made small changes over the years but until we started repainting and changing the furniture, I had no idea how very small those previous changes had been.
The effect of renovating the room was disastrous. I could no longer feel my son there. It was as though he had left. Suddenly he was really gone.
Eventually I bought a small painting which had associations with him. Slowly the room became his again.
It is light and airy now and has a good feeling to it. There are lots of photos of our son on a low credenza. I can go and look at them, and smile.
I wanted to tell you this @canary because you have been SO helpful to me and I do hope that something in this story may resonate with you. It’s a good thing to have redone the shed. The pain of the change is undoubted. But somehow one has to hold both that, and the sense of satisfaction and renewal, in one’s cupped hands, both at the same time.
Thinking of you.
All our stories touch a nerve and in the process help us bear the pain. Just saying how I felt relieved that pressure of pain and to read your stories is a different sort of pain, the pain of shared experience. He is up and dressed in his newly dry cleaned and mended summer trousers and looks so smart and well. I told him and he grew a few centimetres and smiled his lovely smile.
I love this description. One forgets how their self esteem must suffer. My OH also is quietly thrilled if I tell him he’s looking nice. I wonder if they feel as though they are disappearing from view? But thank you anyway for what you say...
Thanks to you all for your remembrances. I learn from you all and the past few days have been fine for me. I am redecorating our dining room - very slowly.. where we had many dinners - but none this past year. I’m changing it to small lounge room where possibly, in the future, someone can sleep over - if I am away or sick. Have to plan ahead.
Now I can usually laugh and my OH s confabulations- some are so weird! The best thing is just to be satisfied where we are now, accept today as enough. MJx
Now I can usually laugh and my OH s confabulations- some are so weird! The best thing is just to be satisfied where we are now, accept today as enough. MJx
[NoQUOTE="Grahamstown, post: 1543978, member: 71260"]I needed a kitchen implement out of the drawer and had to take everything out to find it. It was like unpacking ‘life before’ as all the items I used to use for regular family gatherings came out which I don’t use any more. Tears sprang to my eyes as I mourned for the life that has gone and I must admit I haven’t cried during the past few months, just ground on. A moment of self pity but it seemed to symbolise this terrible disease that has sprung up at us so suddenly and unexpectedly. I think I am tired after a busy week because I snapped at him on our walk yesterday evening after he asked me for the umpteenth time what we were doing this week, told me he was going to the pub, and could we cross the river over ‘that bridge’ which is the railway bridge. After that he did subside and we had a lovely walk and evening. My daughter asked us over today but for the first time I said no, because I couldn’t face driving over and then having him constantly wanting to go home soon after we have arrived. I had a good nights sleep, and can’t help thinking that he must be very tired too, because he is sleeping in this morning. A quiet day I think
Completely with you Grahamstown, we are making big adjustments, ones we never dreamed would happen. I hope you had a quiet day,sending a (((hug))).
Completely with you Grahamstown, we are making big adjustments, ones we never dreamed would happen. I hope you had a quiet day,sending a (((hug))).
I have seen my OH's self esteem drop dramatical since his driving license has been revoked, it has really hit him hard and of course he has no understanding. I have been in tears over this to, will miss being a passenger alongside him on the long country drives and picnics we always enjoyed. Sometimes when you reflect on these feelings you realise how small they are within the big picture of what is and will happen, but they still need to be acknowledges along the way I think. It is good to read the experiences of others, helps us to put things in perspective. Being able to share our moments of grief (I've come to recognise it as grief not self pity) that we have to keep locked up day to day, that constant tight lump of a feeling in your stomach, helps so much to release the tension and tears. Take Care All. X
I just had to reply with some comfort, cold though it might be. To see our loved ones reduced to this is very hard. I thought that I was very self pitying the other day, but @canary put me right. I am feeling very ‘self pitying’ today with a man who crumbles at the idea of taking a friend to lunch and then goes to the pub the very afternoon that I went out with friends. I thought I was safe going in the afternoon but sadly no. He knows perfectly well what he is doing but cannot help himself. He can still function perfectly well doing familiar local things but otherwise he is lost. Today we have an appointment with the Memory Clinic nurse but he is incapable of going by himself. I think you might be right about driving and self esteem, because he cannot drive any more, knows he wouldn’t be able to and I guess that makes him depressed, and what does he turn to? Alcohol! The only good thing to come out of this is that I think I have recovered my determination to keep him as well as possible. It is starting to reduce me to tears, they spring to my eyes unbidden as the full weight of our loss goes home. I also know exactly what you mean about that sick to the stomach feeling, just how I felt when I knew where he was when I telephoned in vain yesterday. I can’t say all this to friends and family but this safe space is so supportive and understanding.
I am thinking of you @Mudgee Joy as you decorate for a change of room use. I saw friends yesterday and one of them was telling me about a development in which she was heavily involved, to allow couples to live together in their own space of one two three bedroom apartments, with all facilities on site for leisure and support. She has known my OH for decades and understands what has happened. We are so well placed here in our duplex but I am beginning to wonder if the time may come for somewhere else, and I can put my name down.
The decorating is coming along. A friend dropped in with ideas - she is an interior decorator.
I want yo tell you that Early on in this D journey I had a dream - a sleeping dream - that I went to the local care home and asked if I could build on an extension - they agreed - and I added a double room so I could still live with my husband whilst he was technically in the care home - maybe it was a nightmare!
Sorry you didn't get some help from the memory clinic but glad that you have your resolution back. I truly hope to see this journey through as best I can , it's all we can hope -
Can you have a word with the publican ?? Our local would be understanding! You could maybe leave money for drinks for him but get them to mix them to half strength ?? He might love it if the publican says - here is a drink on us !!! Goodnight
I want yo tell you that Early on in this D journey I had a dream - a sleeping dream - that I went to the local care home and asked if I could build on an extension - they agreed - and I added a double room so I could still live with my husband whilst he was technically in the care home - maybe it was a nightmare!
Sorry you didn't get some help from the memory clinic but glad that you have your resolution back. I truly hope to see this journey through as best I can , it's all we can hope -
Can you have a word with the publican ?? Our local would be understanding! You could maybe leave money for drinks for him but get them to mix them to half strength ?? He might love it if the publican says - here is a drink on us !!! Goodnight
The memory clinic nurse is so kind and concerned but because she can’t do any more than she has, he is discharged back to the care of the GP. It was very revealing that when she asked him about his cruise, because she knew we were going, he couldn’t tell her anything about it, where we had been, when etc. He looked anxiously at me and said ‘you’ll have to ask my wife’, it was so sad. With a hint he was able to say Stockholm but nothing else except that he enjoyed it very much. She did a memory question and answer, asked him lots of questions and made notes for the doctor and then the three of us discussed his drinking and as usual he was full of good intentions, wouldn’t drink alcohol more than occasionally and be careful, knew he shouldn’t with the pills. She understood the situation well but it is insoluble, only a holding operation. This was midday and by the evening he was putting his shoes on to go to the pub. I am still trying to curb this with reasonable success largely because one of these days he will collapse and be back in hospital which I believe would precipitate further deterioration, I have read on TP that hospital admission can accelerate dementia and it certainly did his. I think we have gone down another notch now, and I believe it was triggered by the fact that I was not there when he got up from his rest, and he panics, needs a drink, drinks too much and is very irrational so that’s another restriction on me, no going out after lunch now. She suggested that I apply for attendance allowance which he is now entitled to, so I shall try. I have made an error of judgment too. I thought that it would be safe to have a bit of wine for me to enjoy with him in a controlled situation, silly me! He has taken to drinking the non-alcoholic wine out of the bottle secretly, and when I discovered this, I found a bottle of real wine that I had got for us half empty and wine stains on his trousers from drinking out of the bottle. It is quite unbelievable that this man could behave in this way, and I find it very distressing. Non- alcoholic for goodness sake, his brain is so tangled up. We have just walked back from the bus stop past the pub which he referred to as his pleasure palace where he was going this evening! I have got him to walk quite a bit today so hope I have worn him out. I am coming to terms with the fact that he is well enough to damage himself but not well enough to look after himself. The other task I have to do is get myself onto his own checking account, and I can do that without him by registering the LPA with the bank together with my ID. So it’s well worth getting that done ahead of time, which fortunately we had. This is rather a long post but I hope that it can help others who are struggling.
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I have wracked my brains for solutions and although this might work, the trouble is that one drink is never enough, it’s another then a ‘little top up’, so I have found it’s best to restrict as much as possible. Thinking of you doing all the decorating xThe decorating is coming along. A friend dropped in with ideas - she is an interior decorator.
I want yo tell you that Early on in this D journey I had a dream - a sleeping dream - that I went to the local care home and asked if I could build on an extension - they agreed - and I added a double room so I could still live with my husband whilst he was technically in the care home - maybe it was a nightmare!
Sorry you didn't get some help from the memory clinic but glad that you have your resolution back. I truly hope to see this journey through as best I can , it's all we can hope -
Can you have a word with the publican ?? Our local would be understanding! You could maybe leave money for drinks for him but get them to mix them to half strength ?? He might love it if the publican says - here is a drink on us !!! Goodnight
This is only an observation but I have kept him dry since his lapse and I have noticed that he has a bit of short term memory recall for yesterday and this was beginning to happen previously after the 5mgm for 7 weeks and 10mgm for 3 weeks. His surreptitious alcohol consumption made him much worse again, completely lost. I think the alcohol/donepezil interaction is dose dependent. The alcohol interferes with the action of the drug and the more alcohol you take the more it will interfere and vice versa. The chemical/signaling pathway that donepezil takes can be broken and then of course it has no effect. This is so obvious to me and I shall continue my efforts to keep him off as much as I can after moments of weakness, wondering if I should just give up the struggle. I shall monitor it more carefully now and see if this continues to be true.
Hi @Grahamstown - changes can take such a long time- I made arrangements for my husband to go to gym - a small private gym and personal trainer - he was very reluctant but accepts it now as a matter of fact after 6 months -
it’s at 11am most mornings so I know he will be tired - gym - lunch - nap ! Now i have found a male carer to take him to gym once a week - and it’s s break for me - can you think of something like that - that you can start but then transfer him to a friend or carer to give you the opportunity to do something of your own in the afternoon!? MJ sending hugs
it’s at 11am most mornings so I know he will be tired - gym - lunch - nap ! Now i have found a male carer to take him to gym once a week - and it’s s break for me - can you think of something like that - that you can start but then transfer him to a friend or carer to give you the opportunity to do something of your own in the afternoon!? MJ sending hugs
As he has stabilised I find tears springing to my eyes spontaneously from time to time. The contradictions of dementia continue to make me feel worse. Yesterday we met friends for lunch who we see once or twice a year. We last saw them in September of last year and the change is enormous but they may not have completely realised because he was talking about his work and was smartly groomed and turned out, keeping it all together in host mode. He did ask the same questions about trivial things more than once, but otherwise seems like normal. Of course he collapsed into his bed for a couple of hours when we got home, exhausted by the effort. So not a huge big deal but a reminder of times past. Nobody can know that if I didn’t remind him to shower, change his clothes and keep looking properly turned out, he wouldn’t do it; except that this morning he showered, changed his clothes and came down to breakfast all on his own initiative, I was so pleased. So I ask myself is the donepezil having some effect or is it just the ups and downs of dementia. I certainly believe that the PWD needs ‘managing’ to achieve a basic level of functioning and any little help makes life easier. He does sleep a lot and I try to let him do as he pleases within normal limits, and we are coping, although I am quite aware that my life has changed and I have to make choices and decisions that I would never have previously had to do.
So good to hear from you. I did observe, caring for OH over the years that morale affected everything, especially his competence. Gxx
Thank you for this, my morale has taken a hit lately even though he has stabilised, while things were bad I held it altogether and gritted my teeth and carried on. I have every admiration for you and your devoted care but hope you are concentrating on yourself and your well being now. I think it’s a form of PTSD which carers suffer from. Did you see the article in the Times main news about the populations unpreparedness for the dementia epidemic coming? Thank goodness I got LPAs in place because I needed to use it last week. hugs
The ups and downs of Dementia are so varied- today my husband offered to give me a hand making lunch! That was a delight to me. But then he proceeded to butter a whole loaf of break and place salad on 5 plates - for 2 of us!! Numbers just don't work any more - neither does location/ orientation/geography. But he can make a witty remark most days - I find the whole thing so totally unpredictable - distressing and then suddenly an uplift !! We will all be crazy in the end! I wonder what parts are missing in others !
