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New to this forum need advice

jeaniebeanie

New member
Mar 25, 2020
4
0
My partner had a stroke last July.His main problem was loss of speech.I have suspected he had early dementia for a year or so before the stroke.He was diagnosed with vascular dementia last October.There have been issues with verbal abuse for about 2 years and after the stroke he was physically abusive on one occasion.After this happened I went to stay with my daughter and returned home after he promised to get help for his temper and mood swings.This was when he got the dementia diagnosis.His antidepressants were increased and the abuse has stopped.Since November last year he has been staying in bed all day everyday.He does not get dressed,has a shower about once a week and does absolutely nothing.I managed to get him to see the GP last Wednesday, but that was a waste of time as the Dr did not offer any help.I don’t believe the dementia is too severe at the moment.He has started to do online betting every day .He manages to pick horses but I have to put the bets on as he has never used a computer.(There is no danger of him getting into debt as his son has set up a limit to the spending)He makes drinks for himself and prepares simple meals such as cereal,eggs,soup.Can anyone suggest how I might be able to persuade him to get out of bed and be more sociable or should I resign myself to living a life on my own?Sorry for the length of this,but I am feeling really fed up right now and I know things are only going to get worse.I think we could be having some sort of life together and I feel very resentful about his spending all his time shut away in the bedroom.
 

blackmortimer

Registered User
Jan 2, 2021
92
0
My partner had a stroke last July.His main problem was loss of speech.I have suspected he had early dementia for a year or so before the stroke.He was diagnosed with vascular dementia last October.There have been issues with verbal abuse for about 2 years and after the stroke he was physically abusive on one occasion.After this happened I went to stay with my daughter and returned home after he promised to get help for his temper and mood swings.This was when he got the dementia diagnosis.His antidepressants were increased and the abuse has stopped.Since November last year he has been staying in bed all day everyday.He does not get dressed,has a shower about once a week and does absolutely nothing.I managed to get him to see the GP last Wednesday, but that was a waste of time as the Dr did not offer any help.I don’t believe the dementia is too severe at the moment.He has started to do online betting every day .He manages to pick horses but I have to put the bets on as he has never used a computer.(There is no danger of him getting into debt as his son has set up a limit to the spending)He makes drinks for himself and prepares simple meals such as cereal,eggs,soup.Can anyone suggest how I might be able to persuade him to get out of bed and be more sociable or should I resign myself to living a life on my own?Sorry for the length of this,but I am feeling really fed up right now and I know things are only going to get worse.I think we could be having some sort of life together and I feel very resentful about his spending all his time shut away in the bedroom.
Hello, @jeaniebeanie and welcome. I suspect your issues will be all too familiar to others on this forum. My own experience of being sole carer for my wife for over 5 years (she has Lewy body dementia and is now in a nursing home) is that the sort of withdrawal you refer to is part and parcel of the whole "dementia thing". My wife withdrew into a world of her own and one stage seemed to sleep good part of the day, then at other stages she seemed to be more alert but in a world of her own where I couldn't really penetrate Has your partner been referred to the Memory Clinic? When my wife was it resulted in more targeted medication although they needed several goes at it and even then she deteriorated until she ended up in hospital.

What I learned the hard way was that dementia changes relationships and the person you thought you knew inside out (we have been married 48 years) becomes someone different and your relationship has to change. You become carer rather than partner and you find (at least I did) that you gradually find yourself creating a new life for yourself within the new relationship. I'm sure there are others who may well have more targeted advice for you. All I can say is that if you feel you need support, you've certainly found your way to the right place.

God bless,
 

blackmortimer

Registered User
Jan 2, 2021
92
0
Hello, @jeaniebeanie and welcome. I suspect your issues will be all too familiar to others on this forum. My own experience of being sole carer for my wife for over 5 years (she has Lewy body dementia and is now in a nursing home) is that the sort of withdrawal you refer to is part and parcel of the whole "dementia thing". My wife withdrew into a world of her own and one stage seemed to sleep good part of the day, then at other stages she seemed to be more alert but in a world of her own where I couldn't really penetrate Has your partner been referred to the Memory Clinic? When my wife was it resulted in more targeted medication although they needed several goes at it and even then she deteriorated until she ended up in hospital.

What I learned the hard way was that dementia changes relationships and the person you thought you knew inside out (we have been married 48 years) becomes someone different and your relationship has to change. You become carer rather than partner and you find (at least I did) that you gradually find yourself creating a new life for yourself within the new relationship. I'm sure there are others who may well have more targeted advice for you. All I can say is that if you feel you need support, you've certainly found your way to the right place.

God bless,
 

jeaniebeanie

New member
Mar 25, 2020
4
0
Thank you blackmortimer for your reply.It helps to know that others have been through a similar thing.My partner hasn’t been to a memory clinic but he had a home assessment by a mental health nurse and that involved testing his memory.Think I’m just feeling sorry for myself right now,I’m missing his company and COVID lockdown has made the loneliness so much worse.I’m planning a long walk with the dogs tomorrow so hopefully that will do me good.Take care
 

jennifer1967

Registered User
Mar 15, 2020
3,164
0
Southampton
hello @jeaniebeanie my husband also has vascular dementia after a TIA and was diagnosed officially in march last year just as we hit 1st lockdown. he had it year before that. he gets verbally abusive and sometimes physical on occasions. im lucky he will get out of bed after second or third calling. he says its all warm and comfortable. he also says that the days are so long. he has been shielding for most of the last year but has been able to go out for the last few days. ive notice that he will let me do it all if i let him. i dont and insist he does the things that he can do. he has COPD which leaves him breathless that limits what he can do but i encourage him
 

kindred

Registered User
Apr 8, 2018
2,617
0
My partner had a stroke last July.His main problem was loss of speech.I have suspected he had early dementia for a year or so before the stroke.He was diagnosed with vascular dementia last October.There have been issues with verbal abuse for about 2 years and after the stroke he was physically abusive on one occasion.After this happened I went to stay with my daughter and returned home after he promised to get help for his temper and mood swings.This was when he got the dementia diagnosis.His antidepressants were increased and the abuse has stopped.Since November last year he has been staying in bed all day everyday.He does not get dressed,has a shower about once a week and does absolutely nothing.I managed to get him to see the GP last Wednesday, but that was a waste of time as the Dr did not offer any help.I don’t believe the dementia is too severe at the moment.He has started to do online betting every day .He manages to pick horses but I have to put the bets on as he has never used a computer.(There is no danger of him getting into debt as his son has set up a limit to the spending)He makes drinks for himself and prepares simple meals such as cereal,eggs,soup.Can anyone suggest how I might be able to persuade him to get out of bed and be more sociable or should I resign myself to living a life on my own?Sorry for the length of this,but I am feeling really fed up right now and I know things are only going to get worse.I think we could be having some sort of life together and I feel very resentful about his spending all his time shut away in the bedroom.
My husband went through this in bed phase. In desperation, I used to sit by his bedside and read the paper to him, then brought a desk up and did some of my own work in his bedroom. Then one day he cam down
My partner had a stroke last July.His main problem was loss of speech.I have suspected he had early dementia for a year or so before the stroke.He was diagnosed with vascular dementia last October.There have been issues with verbal abuse for about 2 years and after the stroke he was physically abusive on one occasion.After this happened I went to stay with my daughter and returned home after he promised to get help for his temper and mood swings.This was when he got the dementia diagnosis.His antidepressants were increased and the abuse has stopped.Since November last year he has been staying in bed all day everyday.He does not get dressed,has a shower about once a week and does absolutely nothing.I managed to get him to see the GP last Wednesday, but that was a waste of time as the Dr did not offer any help.I don’t believe the dementia is too severe at the moment.He has started to do online betting every day .He manages to pick horses but I have to put the bets on as he has never used a computer.(There is no danger of him getting into debt as his son has set up a limit to the spending)He makes drinks for himself and prepares simple meals such as cereal,eggs,soup.Can anyone suggest how I might be able to persuade him to get out of bed and be more sociable or should I resign myself to living a life on my own?Sorry for the length of this,but I am feeling really fed up right now and I know things are only going to get worse.I think we could be having some sort of life together and I feel very resentful about his spending all his time shut away in the bedroom.
my husband went through this in bed phase and in desperation I used to go up and sit with him and read the paper to him etc. Then I took a desk up and did some of my own work up there, talking to or rather at him about it. One day he came down and said I don’t want to be alone. And that was the end of that phase and the start of the next ...
All fellow feeling. Kindred
 

canary

Registered User
Feb 25, 2014
14,924
0
South coast
Hi @jeaniebeanie

The loss of companionship is hard and lonely, but it happens with dementia.
My OH is similar, although in his case its the sofa rather than bed. He gets overstimulation if he is somewhere noisy and bustley so I am not allowed to put the radio or music on - he wants silence. This may be why your husband has retreated to his bed.

My OH has also stopped doing anything and just scrolls through his android tablet all day. He is not gambling, though - his vice was pornography, although not now as I switched on the parental controls on the wifi lol! He can still make a cup of coffee and a sandwich, but nothing else. All his ability to perform tasks has gone - they have gradually disappeared with time and he is no longer able to do all the things that he used to do, although he is unaware of this and will tell you that he just cant be bothered. He is no longer able to work out the sequence of washing/showering either. I discovered this by accident one day when I walked in on him "showering" and discovered that he was just wiping a small steak of shower gel down his stomach and rinsing it off! Soon after he could not work out how to use the actual shower, so I showered him myself. Now he has carers in to do it for him.

The change in personality is harder. I have lost him - there is no longer any "us" in his mind and all the dreams I had about what we would do when we retired have turned to dust. This man does and says things that my husband would never have done, so he no longer feels like my husband. The relationship has changed by necessity to one of carer and caree.

When the lockdown lifts I am going to try and get him into day care. I think the socialisation will be good for him and it will give me an opportunity to join some groups.
 

Jacques

Registered User
Apr 4, 2020
46
0
My husband is the exact opposite as he is always wanting to go out and do things. Earlier this year he had to have antidepressants for vverbally abusive behaviour and couldn't be bothered to anything except watch tv. After seeing his memory consultant and adding another medication we were able to reduce the antidepressants to just one at night. Could this be the problem or is it just a symptom of the illness?
 

jeaniebeanie

New member
Mar 25, 2020
4
0
Hi everyone,Thank you all for your replies it is comforting to know that others are experiencing similar problems.Things here are much the same,but we have seen my partners GP.I asked if he would try prescribing an alternative antidepressant,but was told the one he is taking is the best one.We came home with steroids and antibiotics to treat his copd.After completing the course of treatment his copd has not improved and neither has his mood!He stays in bed most of the day watching TV and is eating very little.He has given up on life and I am having to come to terms with it.Keep smiling everyone.Love to you all.
 

jennifer1967

Registered User
Mar 15, 2020
3,164
0
Southampton
Hi everyone,Thank you all for your replies it is comforting to know that others are experiencing similar problems.Things here are much the same,but we have seen my partners GP.I asked if he would try prescribing an alternative antidepressant,but was told the one he is taking is the best one.We came home with steroids and antibiotics to treat his copd.After completing the course of treatment his copd has not improved and neither has his mood!He stays in bed most of the day watching TV and is eating very little.He has given up on life and I am having to come to terms with it.Keep smiling everyone.Love to you all.
sorry to hear that, whats he taking? with steroids, my husband sometimes has to come off gradually.