I'm new to this site having joined because my daughter thought it would help me. I wonder if my experiences strike a chord with anyone else.
My wife Margaret started showing symptoms that something was wrong about 6 years ago. It was mainly delusions and slight loss of balance to start with. She had always walked the dog a lot over rough ground without any problem but she began to complaining that the grass in the park was "going up and down". Then a few months later she started having hallucinations - quite extravagant ones such as children dancing in the garden or a fun fair in the neighbour's garden across the road. We thought it might be delirium and eventually got her to see the doctor who suspected an infection e.g. UTI and sent her for a blood test and prescribed antibiotics.
To cut quite a long story short it wasn't an infection and we began to suspect dementia - in particular Lewy Body - which eventually was diagnosed about 2/3 years ago. She was quite a difficult patient, didn't like people coming to the house except family and resisted seeing the nurse or consultant from the local memory clinic for quite a while. All this time I was sole carer since our adult son and daughter both live a distance away and could only visit weekly at best. Eventually we got an official diagnosis of LBD in April 2019 by which time the symptoms had become quite clear - regular hallucinations particularly of small children and non-existent animals, balance problems misjudging distances and a change of personality from a relatively cheerful outgoing person to a miserable suspicious grouch.
Various medications were tried with not much success but I settled down to being a carer knowing that even though I was 80 I was at least reasonably fit and healthy and I suppose like everyone (at least most men!) I thought I was invincible. So I soldiered on getting more and more tired and to be honest more and more bad tempered with the constant demands made on me. I had to do the shopping tend the garden and walk the dog and was constantly complained at because I'd left her to go to Sainsbury's or whatever. Eventually she got worse to the extent of going into rages and lashing out at me. So one Sunday morning in June I snapped, called an ambulance and she taken off to the local general hospital.
She was put into a geriatric ward initially but caused so much trouble that after a few days she was sectioned and taken to the adjoining adult mental health unit which was one of the best things to happen - they were able to look after her properly, for the first time got her to have a scan, sorted out medication and she seemed to settle reasonably well. Because of Covid I wasn't able to see her as often as I wanted but as the time went on the visiting restrictions were relaxed and I went several times a week. Sometimes she was fine, others she refused to see me but the staff were very good and assured me it was the disease and not to take any of it personally.
She was in the unit and had settled down nicely when because of pressure on beds (plus I suppose Covid) they said they couldn't do any more and she would have to move to a suitable nursing home. By this time she was no longer subject to the Section but was under a DOL.
We found a nursing home with their assistance which is reasonably near and she moved there in November last. I haven't been able to see her because of the Covid rules affecting care homes (except once through a window when she didn't seem to recognise me or have any conversation with me) I've tried to speak to her on the phone that they have for residents but to little effect.
d leave contact
She seems to have settled in well and even has a friend that she's made since she's been in the home. My son, who is technologically literate and my daughter (ditto) have had a "Whatsapp" call and say she seems to have settled in but is now living in a world of her own. I have been regularly phoning the home to make sure that's she's OK (she has had a couple of falls one before and one after she moved) and on Saturday they put her on. She seemed to know who I was and made it very clear she didn't want to speak to me and "didn't want me meddling in her life". My son and my daughter assure me that it's just the disease and intellectually I know they're right. But I feel terribly guilty most of the time. I know I couldn't look after her at this stage and because of the DOL they wouldn't let me anyway but I can't get rid of the feeling that somehow "it's all my fault" and perhaps I shouldn't have called that ambulance.
I've rambled on a lot I know and maybe (hopefully even) it's all very familiar to you but the question I have is should I let go and accept that Margaret is in her own world where maybe she's happy and maybe I'm an undesirable reminder of things she doesn't want to think about? Time to back away and let my children take the strain - they're quite happy to do that. Does any of this ring a bell with anyone out there?
My wife Margaret started showing symptoms that something was wrong about 6 years ago. It was mainly delusions and slight loss of balance to start with. She had always walked the dog a lot over rough ground without any problem but she began to complaining that the grass in the park was "going up and down". Then a few months later she started having hallucinations - quite extravagant ones such as children dancing in the garden or a fun fair in the neighbour's garden across the road. We thought it might be delirium and eventually got her to see the doctor who suspected an infection e.g. UTI and sent her for a blood test and prescribed antibiotics.
To cut quite a long story short it wasn't an infection and we began to suspect dementia - in particular Lewy Body - which eventually was diagnosed about 2/3 years ago. She was quite a difficult patient, didn't like people coming to the house except family and resisted seeing the nurse or consultant from the local memory clinic for quite a while. All this time I was sole carer since our adult son and daughter both live a distance away and could only visit weekly at best. Eventually we got an official diagnosis of LBD in April 2019 by which time the symptoms had become quite clear - regular hallucinations particularly of small children and non-existent animals, balance problems misjudging distances and a change of personality from a relatively cheerful outgoing person to a miserable suspicious grouch.
Various medications were tried with not much success but I settled down to being a carer knowing that even though I was 80 I was at least reasonably fit and healthy and I suppose like everyone (at least most men!) I thought I was invincible. So I soldiered on getting more and more tired and to be honest more and more bad tempered with the constant demands made on me. I had to do the shopping tend the garden and walk the dog and was constantly complained at because I'd left her to go to Sainsbury's or whatever. Eventually she got worse to the extent of going into rages and lashing out at me. So one Sunday morning in June I snapped, called an ambulance and she taken off to the local general hospital.
She was put into a geriatric ward initially but caused so much trouble that after a few days she was sectioned and taken to the adjoining adult mental health unit which was one of the best things to happen - they were able to look after her properly, for the first time got her to have a scan, sorted out medication and she seemed to settle reasonably well. Because of Covid I wasn't able to see her as often as I wanted but as the time went on the visiting restrictions were relaxed and I went several times a week. Sometimes she was fine, others she refused to see me but the staff were very good and assured me it was the disease and not to take any of it personally.
She was in the unit and had settled down nicely when because of pressure on beds (plus I suppose Covid) they said they couldn't do any more and she would have to move to a suitable nursing home. By this time she was no longer subject to the Section but was under a DOL.
We found a nursing home with their assistance which is reasonably near and she moved there in November last. I haven't been able to see her because of the Covid rules affecting care homes (except once through a window when she didn't seem to recognise me or have any conversation with me) I've tried to speak to her on the phone that they have for residents but to little effect.
d leave contact
She seems to have settled in well and even has a friend that she's made since she's been in the home. My son, who is technologically literate and my daughter (ditto) have had a "Whatsapp" call and say she seems to have settled in but is now living in a world of her own. I have been regularly phoning the home to make sure that's she's OK (she has had a couple of falls one before and one after she moved) and on Saturday they put her on. She seemed to know who I was and made it very clear she didn't want to speak to me and "didn't want me meddling in her life". My son and my daughter assure me that it's just the disease and intellectually I know they're right. But I feel terribly guilty most of the time. I know I couldn't look after her at this stage and because of the DOL they wouldn't let me anyway but I can't get rid of the feeling that somehow "it's all my fault" and perhaps I shouldn't have called that ambulance.
I've rambled on a lot I know and maybe (hopefully even) it's all very familiar to you but the question I have is should I let go and accept that Margaret is in her own world where maybe she's happy and maybe I'm an undesirable reminder of things she doesn't want to think about? Time to back away and let my children take the strain - they're quite happy to do that. Does any of this ring a bell with anyone out there?