Hi. I'm new to this... can't you guess! My partner has been recently diagnosed with vascular dementia. He's 56 and has had a stroke. It's been a long journey to get the diagnosis and I'm just starting to get support (but of course not over Christmas). I'm 43 and we have two children. I'm struggling to cope with the behavioural problems of my partner. He is starting to become aggressive, and lives in an emotional bubble. I need help, but the memory clinic is discharging him as the memory side is so minor. I can't cope with the constant low, level abuse. I know it's not him, but it doesn't make it any easier to cope with. Is there anybody else out there in this sort of situation? SK
Help... My partner has dementia and I just can't cope
- Thread starter fred1
- Start date
Lots of women on here are taking abuse and even violence from partners who have dementia. Men suffer with violent wives too on here. The good thing is loads of people will support you and just spend time in sympathy with you. A real bonus. 
I would ask for a carer's assessment with your loca social service department. This is done on your behalf not your husband's. Sounds to me as though you need a little breathing space. Coping 24/7 is not easy at the best of times and you are not going through the best of times.
Are there any dementia support groups in your area. I have to warn you that my husband was an 'early onset sufferer' from dementia and I found local groups difficult as we were much younger than the average person there. However they could be the gateway to more specific help for you.
xTinaT
Are there any dementia support groups in your area. I have to warn you that my husband was an 'early onset sufferer' from dementia and I found local groups difficult as we were much younger than the average person there. However they could be the gateway to more specific help for you.
xTinaT
Hi. Thanks for the reply. I guess there is a lot of abuse from spouses (both ways). I just feel really low. My partner has had a drink tonight and he's never been a happy drunk, so he's not nice to be around. I'm just so frustrated that everyone assumes I want to care for him. How do you get people to listen that it isn't just a memory problem?
Keeping Going
I asked for a Carer's Assessment from SS. My husband looks ok to everyone else and therefore SS said there was little they could do until some physical input was required. It's the behaviour and not memory! Yes, I know all about that. My husband's medics have made (or tired to) make mincemeat of me. Husband has recently been diagnosed with change in personality possibly due to frontal subcortical white matter change. He is getting worse and there is nothing I can do about it. He is ok one moment and then not the next. My next move is to write to the PCT for some assistance. Take care of yourself first and foremost. I was told this so many times and not always easy to take on board. Lxx
I asked for a Carer's Assessment from SS. My husband looks ok to everyone else and therefore SS said there was little they could do until some physical input was required. It's the behaviour and not memory! Yes, I know all about that. My husband's medics have made (or tired to) make mincemeat of me. Husband has recently been diagnosed with change in personality possibly due to frontal subcortical white matter change. He is getting worse and there is nothing I can do about it. He is ok one moment and then not the next. My next move is to write to the PCT for some assistance. Take care of yourself first and foremost. I was told this so many times and not always easy to take on board. Lxx
Well I have enquired about support groups, but I can't get to them as I have no one to leave the children with.... I'm trying to get a carer's assessment but it sounds like I'll have months to wait for one. I have been warned that there will be little support available due to funding and not fighting snuggly into the box marked dementia. It's just another thing on my list of things to fight for which never seems to get any shorter!
I'm going to have to keep going... My partner has damage where the stroke was in the back of his head and has atrophy in the temporal lobe, which explains the personality issues. I'm fairly trapped in the house 24/7 as I have MS and I'm permanently exhausted. I don't know what I would do if I was able to have quality time to look after myself..
You are coping with a helluva lot!
One thing you could try is contacting an Admiral Nurse (dedicated to helping carers of people with dementia cope). There aren't many. Have a look at the dementia uk website. They also have a telephone number so you can speak to someone direct:
http://www.dementiauk.org/information-support/about-dementia/
Take care
One thing you could try is contacting an Admiral Nurse (dedicated to helping carers of people with dementia cope). There aren't many. Have a look at the dementia uk website. They also have a telephone number so you can speak to someone direct:
http://www.dementiauk.org/information-support/about-dementia/
Take care
Hi fred1,
You have a lot on your plate! My wife was diagnosed young at 48, but our children had all left home by then so it was just the two of us. One thing I found with Sharon was that she quickly lost the concept of moderation when drinking. If she wanted some wine she would sometimes get a wine glass but often would take a big water glass or coffee mug, fill it up and drink it down. The same with beer and mixed drinks. I started buying some low alcohol or de-alcoholised beer and wine, originally pouring it into the bottles she was used to but eventually just serving it to her - she never noticed the difference. She hasn't had a drink for a few years as she is now beyond the point of wanting anything.
You have a lot on your plate! My wife was diagnosed young at 48, but our children had all left home by then so it was just the two of us. One thing I found with Sharon was that she quickly lost the concept of moderation when drinking. If she wanted some wine she would sometimes get a wine glass but often would take a big water glass or coffee mug, fill it up and drink it down. The same with beer and mixed drinks. I started buying some low alcohol or de-alcoholised beer and wine, originally pouring it into the bottles she was used to but eventually just serving it to her - she never noticed the difference. She hasn't had a drink for a few years as she is now beyond the point of wanting anything.
Dear Fred1
Me remembering it well doesn't help you. Low level abuse is very hard to cope with.
Are you able to leave your husband alone for a short time? If so, when he gets abusive go away from him. Don't answer or respond, just leave the room, the house whatever, until he calms down.
He is probably feeling very insecure himself at the moment, and needs reassurance. I worked it, so that when he was abusive, i left the room and when i went back, i was kind and reassuring. This really helped both of us.
Now, he is in a different place, but i know my reassurance from back then has helped him to know he can trust me. I always tell him, we are a team.
Fear of the unknown, shows itself in many ways and being unkind to the ones we love is, strangely, the way it shows.
Hope this hlps.
Jan xx
Me remembering it well doesn't help you. Low level abuse is very hard to cope with.
Are you able to leave your husband alone for a short time? If so, when he gets abusive go away from him. Don't answer or respond, just leave the room, the house whatever, until he calms down.
He is probably feeling very insecure himself at the moment, and needs reassurance. I worked it, so that when he was abusive, i left the room and when i went back, i was kind and reassuring. This really helped both of us.
Now, he is in a different place, but i know my reassurance from back then has helped him to know he can trust me. I always tell him, we are a team.
Fear of the unknown, shows itself in many ways and being unkind to the ones we love is, strangely, the way it shows.
Hope this hlps.
Jan xx
Fred1,
Always keep in mind that if you ever feel that you or the children are at immediate risk of violence call the police. They have experience dealing with people with dementia and will involve medical and social services as needed. While this may seem a drastic step it is often the fastest, and sometimes the only, way to access the support you need.
I hope it never comes to this, but it is good to be prepared.
Always keep in mind that if you ever feel that you or the children are at immediate risk of violence call the police. They have experience dealing with people with dementia and will involve medical and social services as needed. While this may seem a drastic step it is often the fastest, and sometimes the only, way to access the support you need.
I hope it never comes to this, but it is good to be prepared.
Hello Fred1,
I'm sorry to learn of your partner's challenging behaviour which makes family life so difficult.
I don't know whether this helps or not but I decided I had to change my approach to my husband as I noticed he became aggressive if I expected too much of him (since his illness took hold). I had to lower my expectations of him and accept that he had and was changing in front of me.
I became less confrontational when things went wrong and my husbands reactive behaviour improved. I realised I had to change because my husband couldn't.
I used distraction and positive praise to boost his confidence and his behaviour improved. Family life became a little calmer for us.
Kindest regards,
Sea Urchin
I'm sorry to learn of your partner's challenging behaviour which makes family life so difficult.
I don't know whether this helps or not but I decided I had to change my approach to my husband as I noticed he became aggressive if I expected too much of him (since his illness took hold). I had to lower my expectations of him and accept that he had and was changing in front of me.
I became less confrontational when things went wrong and my husbands reactive behaviour improved. I realised I had to change because my husband couldn't.
I used distraction and positive praise to boost his confidence and his behaviour improved. Family life became a little calmer for us.
Kindest regards,
Sea Urchin
Hi Fred1
Does your husband still like music or musical films? As a carer I used to put some music on and that had a calming effect on my client.
A useful website ftdsupportforum.com and ftdsg.org which has a list of contacts.
There are so many varied forms of early onset dementia, a lot of which are discussed here, and the moderators are all wonderful.
Hope you manage to find some support.
Does your husband still like music or musical films? As a carer I used to put some music on and that had a calming effect on my client.
A useful website ftdsupportforum.com and ftdsg.org which has a list of contacts.
There are so many varied forms of early onset dementia, a lot of which are discussed here, and the moderators are all wonderful.
Hope you manage to find some support.
The safety of you and your children should come first. It sounds harsh but you are now the children's main carer. My Dad was abusive with my Mum after he got Lewy Body Dementia. We (the kids) were grown and had suspicions that something was going on but until he had a major episode we were unaware of the level of the problem. My suggestion would be to go and see your doctor and keep seeing them until you get some kind of help. They cannot ignore the situation if you are at risk. Also ask about different medications. My Mum (Alzheimer's) recently tried a new drug for depression (linked to her Alzheimer's) and it made extremely aggressive. My 79 year old mother was ready to take on the world. We stopped the medication immediately and things are back to "normal". Your husband should be entitled to be seen by a psychiatrist and if he isn't make sure that you push on that one.
Unfortunately anyone with a relative with dementia will tell you that you have to fight for most things. Getting help is not that easy. If you can find a sympathetic doctor in your local practice try to get them to work with you.
Good luck.
Unfortunately anyone with a relative with dementia will tell you that you have to fight for most things. Getting help is not that easy. If you can find a sympathetic doctor in your local practice try to get them to work with you.
Good luck.
Hi fred1,
I'm so sorry to hear of your problems.
I agree with Jaby in that I think you should try to get some help from your GP. With your own health issues I would have thought that he/she will do what they can to help.
I also think it is important for you to contact your husband's consultant (assuming he has one). He will be the one who can give your husband the drugs he needs to suit his needs. I found the help I got from my husband's consultant invaluable.
Jaby is right - you do have to fight for any help you need.
I hope you can find some solutions. Let us know how you get on.
I'm so sorry to hear of your problems.
I agree with Jaby in that I think you should try to get some help from your GP. With your own health issues I would have thought that he/she will do what they can to help.
I also think it is important for you to contact your husband's consultant (assuming he has one). He will be the one who can give your husband the drugs he needs to suit his needs. I found the help I got from my husband's consultant invaluable.
Jaby is right - you do have to fight for any help you need.
I hope you can find some solutions. Let us know how you get on.
squeeky wheel gets the grease
Always when speaking to any agency GP, Social Services etc tell them of the worse day you have ever had, bravado does not come in to it. I am reading The selfish Pigs guide to caring which has helped me its by Hugh Marriott
Always when speaking to any agency GP, Social Services etc tell them of the worse day you have ever had, bravado does not come in to it. I am reading The selfish Pigs guide to caring which has helped me its by Hugh Marriott
You're not alone
I havent got the same problems as you - my partners not aggressive and my kids are older - but I can so understand the despair. The worst bit for me is seeing someone disappear little by little, bit by bit. Our local Alzheimers Society runs a support group for carers of early onset dementia and the fact that its there - even tho I dont always make the monthly meetings - is really helpful. If yours doesnt already, maybe they could set one up. And its really good that you're pushing for help. You need support otherwise you go crazy.
I havent got the same problems as you - my partners not aggressive and my kids are older - but I can so understand the despair. The worst bit for me is seeing someone disappear little by little, bit by bit. Our local Alzheimers Society runs a support group for carers of early onset dementia and the fact that its there - even tho I dont always make the monthly meetings - is really helpful. If yours doesnt already, maybe they could set one up. And its really good that you're pushing for help. You need support otherwise you go crazy.
Violence
I am no expert, so please take this as mere observation / opinion.
Violence is the basest form of human nature. We all experience violent, narcisistic and abusive thoughts but our intellect and social conditioning usually place boundaries on how we act these out.
Dementia erodes those boundaries as our intellect and social conditioning are located much higher brain functions than the emotional centres which govern our basic instincts. Brain damage, (there is no other word for it), may be due to a single trauma (like a stroke) in which case the condition may stablise or even improve as the brain re-wires itself and adapts. People who have suffered severe head wounds can exhibit similar behaviour. In such circumstances, time is often a great healer and it is perhaps worth exploring the prospect of a long-term positive outcome as a family for them and for you and your children. You will need to adapt as much as your partner, but that's the same for everyone, (dementia or not), and families are stronger like that.
Sadly, other forms of dementia are progressive and in these cases the degeneration in a person's behaviour is likely to be progressive too. In cases of aggression, it might be expected, (especially in early onset cases for subjects who are otherwise physically fit), for such dementia to start expressing itself through sexually inappropriate behaviour also.
If alcohol is a factor in your husband's lifestyle (and abusive tendancies) then you need to be doubly cautious. Alcohol dependancy starves the brain of oxygen. When drunk, in most cases we typically exhibit (temporary) signs of a stroke. Aphasia / disphasia, vertigo and short term memory loss being amongst the most common. With alcohol this is quite often compounded by the narcisistic feelings of strength, happiness and invulnerability, leading to exhibitionism, violent and/or vulgar behaviour. Sound familliar? In some cases alcohol simply puts them to sleep. In others it removes all inhibitions, including their personal safeguards.
For someone already suffering from dementia, this is a poor combination. In all cases, you need to realistically assess your own thresholds of patience, tolerance and safety for your own sake and for your children too. But the likely outcome is also a factor for which you need specific advice in your own particular case. i.e. Is this likely to get worse, better or stay the same? If your partner is unaware of their behaviour and generally uncooperative then your options are significantly more limited than if they were trying to "work with you". The severity of some conditions quite simply make the patient incapable of helping you to help them, and certainly in the case of any violent / sexual abuse I would recommend early intervention by the Social services. If at any time you are in fear of your or your children's safety then most certainly you should call the police without hesitation. If the abuse is merely verbal, then how long can you and your children endure the psychological battering? It is a judgement call which only you can make, but my advice to you is DO NOT refrain from taking appropriate action in your own best interests, simply out of your understandable sense of duty.
Would the children prefer an absent father whose memory in their formative parts of their lives would be treasured for ever, or to live with an abusive man they never could respect and perhaps grow up to fear and to hate?
There is a very good series of adverts on telly at the moment dealing with violent abuse called "if you could see yourself...". This, of course, is a general message to all of us, asking our cerebral cortex to communicate with our lower brain stem before acting on impulse. But the same principle applies, I think, to patients with dementia - except they can't do anything about it themselves. I prefer to think of the person with dementia as existing within a bubble where they are the most important person in the world. But if the person they used to be "could see themselves", they would be saying to you, "help me to stop behaving like this". When you get to the end of your tether, the best help you can give them is professional help, so please don't feel guilty about taking the steps you need to take before it's too late.
Best wishes,
LDMax
I am no expert, so please take this as mere observation / opinion.
Violence is the basest form of human nature. We all experience violent, narcisistic and abusive thoughts but our intellect and social conditioning usually place boundaries on how we act these out.
Dementia erodes those boundaries as our intellect and social conditioning are located much higher brain functions than the emotional centres which govern our basic instincts. Brain damage, (there is no other word for it), may be due to a single trauma (like a stroke) in which case the condition may stablise or even improve as the brain re-wires itself and adapts. People who have suffered severe head wounds can exhibit similar behaviour. In such circumstances, time is often a great healer and it is perhaps worth exploring the prospect of a long-term positive outcome as a family for them and for you and your children. You will need to adapt as much as your partner, but that's the same for everyone, (dementia or not), and families are stronger like that.
Sadly, other forms of dementia are progressive and in these cases the degeneration in a person's behaviour is likely to be progressive too. In cases of aggression, it might be expected, (especially in early onset cases for subjects who are otherwise physically fit), for such dementia to start expressing itself through sexually inappropriate behaviour also.
If alcohol is a factor in your husband's lifestyle (and abusive tendancies) then you need to be doubly cautious. Alcohol dependancy starves the brain of oxygen. When drunk, in most cases we typically exhibit (temporary) signs of a stroke. Aphasia / disphasia, vertigo and short term memory loss being amongst the most common. With alcohol this is quite often compounded by the narcisistic feelings of strength, happiness and invulnerability, leading to exhibitionism, violent and/or vulgar behaviour. Sound familliar? In some cases alcohol simply puts them to sleep. In others it removes all inhibitions, including their personal safeguards.
For someone already suffering from dementia, this is a poor combination. In all cases, you need to realistically assess your own thresholds of patience, tolerance and safety for your own sake and for your children too. But the likely outcome is also a factor for which you need specific advice in your own particular case. i.e. Is this likely to get worse, better or stay the same? If your partner is unaware of their behaviour and generally uncooperative then your options are significantly more limited than if they were trying to "work with you". The severity of some conditions quite simply make the patient incapable of helping you to help them, and certainly in the case of any violent / sexual abuse I would recommend early intervention by the Social services. If at any time you are in fear of your or your children's safety then most certainly you should call the police without hesitation. If the abuse is merely verbal, then how long can you and your children endure the psychological battering? It is a judgement call which only you can make, but my advice to you is DO NOT refrain from taking appropriate action in your own best interests, simply out of your understandable sense of duty.
Would the children prefer an absent father whose memory in their formative parts of their lives would be treasured for ever, or to live with an abusive man they never could respect and perhaps grow up to fear and to hate?
There is a very good series of adverts on telly at the moment dealing with violent abuse called "if you could see yourself...". This, of course, is a general message to all of us, asking our cerebral cortex to communicate with our lower brain stem before acting on impulse. But the same principle applies, I think, to patients with dementia - except they can't do anything about it themselves. I prefer to think of the person with dementia as existing within a bubble where they are the most important person in the world. But if the person they used to be "could see themselves", they would be saying to you, "help me to stop behaving like this". When you get to the end of your tether, the best help you can give them is professional help, so please don't feel guilty about taking the steps you need to take before it's too late.
Best wishes,
LDMax
Your children are first priorty and I think calling the Police is the best thing.
My husband is agressive if he falls asleep in the chair and I have to 'wake hime to go to bed and to get him to pass urine at that point is difficult even though he drinks loads and he has not passed urine for 10 hours. Our children are grown but I would not put them at risk. Perhaps to could ask for respite care and them he would be assessed properly
