Support groups for wives.

[Aix]

Hello everyone. I don’t want to sound like I don’t care about the men who care for female relatives. The unique circumstances we all face are difficult, sometimes almost impossible to bear.
What I would like to ask is whether anyone has heard of or seen support groups for women who have had to leave their husbands because of their difficult behaviour?.

 

[Grannie G]

What I would like to ask is whether anyone has heard of or seen support groups for women who have had to leave their husbands because of their difficult behaviour?.

I haven`t @Aix although I believe many have come close to abandoning their husbands and partners when the challenging behaviour becomes too much to manage.

There is no legal ruling which states wives must care for their husbands when aggressive behaviour is too distressing and damaging to the relationship. I suspect this applied to all forms of serious illness. Whether or not anyone has considered this remains to be seen.

If there are any such support groups for women who have left their husbands I haven`t heard of them although others on the forum may have.

 

[Shedrech]

hi @Aix
I'm sorry that life for the 2 of you is becoming or did become so intolerable that you had to leave, if that's what happened or is what you're contemplating
dementia can, sadly, disinhibit someone's behaviour which can change drastically ... there may be meds to help, though if the person won't or can't take them and refuses any kind of support, it can limit what can be done to help

I hope the Local Authority Adult Services are involved ... and his GP. .... in some circumstances the only way for the person to be helped is for them to be sectioned ... and the partner needs support through that

leaving must be difficult, with the challenge of where to go and how to cope on your own ... yet no doubt still worrying about the partner and of course concerned about the marital home

you're certainly not the only wife who has felt so in a corner

I wonder whether something such as Refuge might be able to offer suggestions
https://www.refuge.org.uk/our-work/our-services/

and have a chat with an advisor on the AS Helpline as they have a wide knowledge of support available
https://www.alzheimers.org.uk/get-support/national-dementia-helpline

and Admiral Nurses are there to support the carer
https://www.dementiauk.org/get-support/admiral-nursing/

 

[Brian_P6]

Hi Aix,
It's true that all our experiences are different and unique to us all, but what I have found to be beneficial with my wife's difficult behaviour is to 1. Keep a diary and 2. Tell someone!

I keep my diary on penzu.com (penzu dot com if the link doesn't get allowed) which is free, allows me to upload photographs and it's private - unless you want to make each individual entry public.

I spoke to the Alzheimer's Society - the lady who runs our carer's support group (Memory Matters) who reported it to Safeguarding (fearing my safety) and I told our CPN (Community Psychiatric Nurse). I forwarded them the public links I created to the relevant entries on my diary so that they could read and see the pictures for themselves.

I was being beaten, scratched, punched, kicked, bitten and various items whacked over my head on a fairly regular basis, I put on the male bravado as us blokes do, but the trouble with dementia is that you don't know if the next thing they decide to pick up to beat you over the head with is going to be something sharp!

In our case, my wife was relatively quickly put on a medication called Risperidone which in our case has done the trick and life is now reasonably good again.

No-one is going to judge you, I've found that everyone feels for you, and sometimes you have to do what you need to do. But do keep a diary.

 

[pevensey]

hi @Aix
I'm sorry that life for the 2 of you is becoming or did become so intolerable that you had to leave, if that's what happened or is what you're contemplating
dementia can, sadly, disinhibit someone's behaviour which can change drastically ... there may be meds to help, though if the person won't or can't take them and refuses any kind of support, it can limit what can be done to help

I hope the Local Authority Adult Services are involved ... and his GP. .... in some circumstances the only way for the person to be helped is for them to be sectioned ... and the partner needs support through that

leaving must be difficult, with the challenge of where to go and how to cope on your own ... yet no doubt still worrying about the partner and of course concerned about the marital home

you're certainly not the only wife who has felt so in a corner

I wonder whether something such as Refuge might be able to offer suggestions
https://www.refuge.org.uk/our-work/our-services/

and have a chat with an advisor on the AS Helpline as they have a wide knowledge of support available
https://www.alzheimers.org.uk/get-support/national-dementia-helpline

and Admiral Nurses are there to support the carer
https://www.dementiauk.org/get-support/admiral-nursing/

This is such a difficult dilemma @Aix I did it the opposite way round strangely enough. My husband was always very difficult to live with, we've been married 57 years and lots of those years were not good, he was a mans man and what he said was law, he liked to go out to pubs, bookies, fishing for days at at time, dont get me wrong he worked hard was a postman, but he had a good life but I couldnt do a lot, didnt really have many friends as I didnt go out when children were young, all those years ago mums were stay at home mums.anyway long story short, we moved down to the south coast when we both retired and things were good for a while I made some lovely friends, but things soon went back to the old days, I wont ramble on about how it was. But I left him twice, each time going to stay with my daughterThe second time I had been with her about 9 months and he was diagnosed with vascular dementia I had been nagging him for months to get a check up with GP. That was nearly 4years


ago,
When he got the diagnosis I went back to him, even though I wouldn't have done, if he hadn't have had that diagnosis. I felt guilty not being there with him knowing he had that awful illness and being on his own. I wasnt happy about it and didnt really like him, I think I loved him, 57 years is a long time but I didnt like him.. The Guilt Fairy was there even after all he had put me through BUT I often regret going back, as my daughters tell me Mum you dont deserve this life you have now after what he put you through all those years, if I hadn't gone back to him he would be in care home now and I would be having a life that I missed out on for years. Hes in rehab at the moment and I've got meeting with SW and OT's to discuss what happens next, they asked me if I wanted him to come home in a couple weeks, he cant do anything for himself now, cant get out because of his lack of mobility, cant get dressed just sits in chair and gets angry at life. But even when SW said do I want him to come home .......
I FELT GUILTY thinking that I dont. Sorry for all that rambling @Aix. BUT if I had known what I know now then NO I wouldn't have come back to him. Sorry if I sound mean.

 

[canary]

Hes in rehab at the moment and I've got meeting with SW and OT's to discuss what happens next, they asked me if I wanted him to come home in a couple weeks, he cant do anything for himself now, cant get out because of his lack of mobility, cant get dressed just sits in chair and gets angry at life. But even when SW said do I want him to come home .......
I FELT GUILTY thinking that I dont.

Please, please give the guilt fairy a sock in the eye and tell the SW that you cant have him back.

 

[Shedrech]

I second that @pevensey
you have done all you can ... he needs the support of residential care ... you need space for yourself ... duty done, this is time for you to live as you wish
you haven't a mean bone in your body

a worry I have for you @Aix is that leaving may lead to divorce, and being bluntly financial you have an investment in the family finances and property, if it's owned, which you don't want to lose especially as the marital home should be diregarded in the financial assessment for residential care, so the spouse can live in it

PS I hope that doesn't sound as though I think you should not leave but put up with unacceptable behaviour ..... just take care you don't lose a financial security you have every right to

 

[pevensey]

I second that @pevensey
you have done all you can ... he needs the support of residential care ... you need space for yourself ... duty done, this is time for you to live as you wish
you haven't a mean bone in your body

a worry I have for you @Aix is that leaving may lead to divorce, and being bluntly financial you have an investment in the family finances and property, if it's owned, which you don't want to lose especially as the marital home should be diregarded in the financial assessment for residential care, so the spouse can live in it

Thankyou @canary and @Shedrech, I've had sleepless nights thinking about this meeting on thursday, getting so worried that I'm going to back down and do what SW's want and aggree to him coming home but I really want to be strong, I'm worried they will convince me it's the right thing to do to have him return home. But then I listen to you and you make me feel more determined to speak MY MIND and to have at least a few years out of my life that I can call my years, I'm 78 and need some years of my own.. I was talking to my grown up grandson this evening, he was asking how his Gramps is, he loves him to bits but he knows what a hard life hes given me over the years and even my grandson said it time for me, he wants to see me happy and having a life I enjoy., even though he loves his grandad to bits. He made me feel so positive. He just wants me to be happy. There are so many lovely people out there and on here and I thank them all for their helpful advice.

 

[silver'lantern]

oh my days @pevensey I never thought anyone would be doing the same or even similar to me! I have my ex-husband moved back in with me.
I won't go into full story but .....we are divorced and final separation in 1999. But about 7 years ago it became aware he could no longer live on his own. He had an episode while visiting me, ended up moving in as it was clear he couldn't live alone. Things evolved from there, resulting in a diagnosis of mixed dementia (Alzheimer's and Vascular)and I am his sole carer. We don't know how long before that he had been having problems as he lived alone. It might seem a strange situation to many but I do this for the love of my children not the love of the man. If I didn't do this then it would mess up the lives of my children.
For the moment I see it as a job role, as I was in adult care before I had to give it up. So I see it as working from home!
I don't see it as a problem most days.....when I am ill its a bit tricky as i dont have the patience I need, but most of the time it works well. BUT pevensey the first chance I get of him going into a home I am on it! My advice would be just take your chance while you can! You have to do what is best for you as well as him. Please don't let guilt rob you of some happy times ahead. You have done your best for him up until now, and maybe now the best is to step down and go live your life, and maybe even the better for him in the care home.
I think you probably know what you want to do.....and you are lucky you have support of your family to go ahead and do it.
Best wishes and I hope you find the courage to stand up for yourself and dont be talked down.

 

[pevensey]

oh my days @pevensey I never thought anyone would be doing the same or even similar to me! I have my ex-husband moved back in with me.
I won't go into full story but .....we are divorced and final separation in 1999. But about 7 years ago it became aware he could no longer live on his own. He had an episode while visiting me, ended up moving in as it was clear he couldn't live alone. Things evolved from there, resulting in a diagnosis of mixed dementia (Alzheimer's and Vascular)and I am his sole carer. We don't know how long before that he had been having problems as he lived alone. It might seem a strange situation to many but I do this for the love of my children not the love of the man. If I didn't do this then it would mess up the lives of my children.
For the moment I see it as a job role, as I was in adult care before I had to give it up. So I see it as working from home!
I don't see it as a problem most days.....when I am ill its a bit tricky as i dont have the patience I need, but most of the time it works well. BUT pevensey the first chance I get of him going into a home I am on it! My advice would be just take your chance while you can! You have to do what is best for you as well as him. Please don't let guilt rob you of some happy times ahead. You have done your best for him up until now, and maybe now the best is to step down and go live your life, and maybe even the better for him in the care home.
I think you probably know what you want to do.....and you are lucky you have support of your family to go ahead and do it.
Best wishes and I hope you find the courage to stand up for yourself and dont be talked down.

THANKYOU @silver'lantern, yes I've had so much wonderful feedback on here and such wonderful love and support from my family and friends that I'm feeling very positive now and know what I want, need and I think deserve. I just really hope the powers that be agree with me, and they dont grind me down to doing something I dont want, I realise I have to do it NOW while he is in temporary rehab away from our home. Take care Silver' Latern, LOOK AFTER YOURSELF and best wishes for the future.

 

[silver'lantern]

@Aix sorry that's sort of taken over your post. I hope you find some support. If you feel the need to get out you have to do it. But medication can help in some cases. My PWD had a spell of raging and couldn't control himself. I had to lock him out of the house at one point! and called the memory team who came straight out. They were a great team and good support. His medication was adjusted and calm was resumed.
This doesn't mean it will work or even there is this option for your PWD and also you have to think hard about if you even want to carry this on if it was.
I hope you find the support you need.

 

[pevensey]

@Aix sorry that's sort of taken over your post. I hope you find some support. If you feel the need to get out you have to do it. But medication can help in some cases. My PWD had a spell of raging and couldn't control himself. I had to lock him out of the house at one point! and called the memory team who came straight out. They were a great team and good support. His medication was adjusted and calm was resumed.
This doesn't mean it will work or even there is this option for your PWD and also you have to think hard about if you even want to carry this on if it was.
I hope you find the support you need.

Hi @Aix, I'm sorry I sort of took over your post, it really wasnt intended. Once I started all my vent up feelings took over, sorry again. I completely aggree with everything you say, but this damming illness is a life sentence for the PWD AND the carer.
Please TAKE CARE OF YOURSELF and be good to yourself.

 

[silver'lantern]

Hi @Aix, I'm sorry I sort of took over your post, it really wasnt intended. Once I started all my vent up feelings took over, sorry again. I completely aggree with everything you say, but this damming illness is a life sentence for the PWD AND the carer.
Please TAKE CARE OF YOURSELF and be good to yourself.

I am sure its no problem pevensey, it happens all the time. One post often evolves into something else. I just wanted to acknowledge the original post as I to felt a link to that too.

 

[pevensey]

I am sure its no problem pevensey, it happens all the time. One post often evolves into something else. I just wanted to acknowledge the original post as I to felt a link to that too.

THANKYOU @Silver"lantern.

 

[Aix]

Hello everyone who so kindly replied to my question. With regard to taking over my thread - this just proves to me that I’m on to something. The things you have spoken about, that you have to keep hidden deep inside yourself for a fear of some kind or shame, just proves to me that a group for women finding that they are trapped is sorely needed. Bless you all with the strength to make the toughest decisions.
Dear Pevensey, I hope that you were able to speak with courage to the SW and the OT’s, I think that you knew what you needed, you’ve acted with absolute unselfish motives until the age of 78 by looking after a man you no longer loved. I’m the same. The two years before he was diagnosed and medicated were sheer hell and it killed off my love for him, I was preparing to leave and go into a hostel and our pets into RSPCA, I described my self to a friend as being like a small insect with its wings and legs slowly being ripped off. Nevertheless, when he began the medication it was like a small bomb in his brain as it were, he began talking about feelings, and how he had been treating me. He tried to make up to me.
I no longer have even acquaintances let alone friends. I have to be careful with ‘phone calls, emails, talking to people outside for fear that he thinks I am talking about him, or our male neighbour fancies me, in fact according to him all men fancy me.
I try and try to stoke up my feelings for him, before he was ill he was lovely, a good husband and gentleman ( with just about the right amount of rough edges - he was a scaffolder most of his working life, and was a joker, someone who didn’t suffer fools). I sometimes cannot bear him touching me.
The guilt is terrible sometimes, but I cannot bear leaving him by himself with that illness. He changes moods like the wind changes direction.
One minute he’s jealous that someone else fancies me, but then he will change and say that I must go and start a new life, he feels less of a man. The other thing is that we live in a council property, I can stay here as I’m joint tennant, but he wont leave, but on the other hand he says he could not stay here with all the memories. I love my home I’ve worked hard on it and the garden, the council would put me in a flat. I worry about my future, how I will cope financially.
The doctors and my sw think that we have marital problems and have advised seeing Relate!!.
I have to go for now, it is late but this was the only opportunity to talk to you all. God bless and good night.

 

[Donkeyshere]

Thankyou @canary and @Shedrech, I've had sleepless nights thinking about this meeting on thursday, getting so worried that I'm going to back down and do what SW's want and aggree to him coming home but I really want to be strong, I'm worried they will convince me it's the right thing to do to have him return home. But then I listen to you and you make me feel more determined to speak MY MIND and to have at least a few years out of my life that I can call my years, I'm 78 and need some years of my own.. I was talking to my grown up grandson this evening, he was asking how his Gramps is, he loves him to bits but he knows what a hard life hes given me over the years and even my grandson said it time for me, he wants to see me happy and having a life I enjoy., even though he loves his grandad to bits. He made me feel so positive. He just wants me to be happy. There are so many lovely people out there and on here and I thank them all for their helpful advice.

Hi Pevensey

Why don't you write it down in a letter your wishes so that you can give it to the SW at the beginning of the meeting - that way you wont have to back down and its all said and and out in the open and then the SW can plan accordingly. Just remember to tell the guilt fairy that you are no longer responsible and I am sure others will agree with me that you have gone above and beyond what others would even consider, put yourself first.

 

[canary]

I no longer have even acquaintances let alone friends. I have to be careful with ‘phone calls, emails, talking to people outside for fear that he thinks I am talking about him, or our male neighbour fancies me, in fact according to him all men fancy me.

There is medication for this. Do not put up with it.
In fact, from your post it sounds as though you are saying that he was prescribed something for his dementia and he got worse. Is this right? Was he prescribed donepezil? Donepezil can make these sort of behaviours worse.
I really do think that you need to get in contact with the doctor who prescribed it (memory clinic? Community Psychiatric Team?) and tell them what is going on. Also explain to the GP. Dont mince your words, explain exactly what is happening. If you cant get to the doctor, then write them a letter, but they need to know.

You dont say what sort of dementia your husband has, but it sounds very much like Frontotemporal dementia. I too was told that OH and I had marital problems, it seems to be quite common with this sort of dementia where the initial symptoms are not so much memory problems as personality changes.

 

[silver'lantern]

my PWD had a personality change, he has mixed dementia (Alzheimer's and vascular) he too was raging (nearly killed our dog i sadly had to rehome him) its hard trying to accept its the disease that is the cause but i know it is. i took him in a he needed support. the memory team have been great and he now has his medication stable for past 2 years with no incidents. So i if you feel you are staying in the relationship, or at least in the same house, maybe talk to the team about this mood/character change. as others have said write it down and get it to them in a letter if you are not able to any other way. and stress he cant know you have told them. but that you are desperate for the support.
suggesting you see relate is not appropriate advice i feel with dementia being at the route

Good Luck

 

[Aix]

Hello Canary and everyone, thank you for the advice. He has Alzheimer’s in Dementia, his identical twin had Vascular. The med he takes is Galantamine which really does help him. He also NEEDS to take Trazadone aka Mollypaxin.
In the beginning I did speak to specialist about his anger outbursts which last for 2-3 days, swinging to depression, talk of suicide.
He was given Risperidone in the beginning, but he had enough mental awareness to realise that Risperidone was virtually sedating him. He would not take it again.
He was diagnosed quite early because I and our GP persisted with him for around a year that he be tested for Dementia.
Unfortunately, since I told them (Specialist) that I have Aspergers, and told them that he just keeps pushing my buttons as I said for 2-3 days and in the end I can’t stop myself from exploding, I try and tell him to stop because he just keeps repeating the same questions over and over and I’m answering but he’s not listening, I tell him to stop because I’m starting to lose control, but he doesn’t listen. It’s just awful. He threatens to go to the bank and close down our joint acc. Send back the Motability car we have ( mostly because of my Fibromyalgia) so that he can get his DLA Mobility back. Tells me to get out.
Later on he apologises and holds me and then he’s back to his usual self.
He does all that about every 6-7 weeks.
I know it’s the Dementia, because he was nothing like this before, but I’m so worried that he will wear me down physically and mentally, that I’ll be I’ll again and I’ll beat him to the grave.
Please don’t get me wrong, I would do anything for him if he would let me, we have only been married for 8yrs & together for 8.5 yrs. we have a 20yr age gap with my husband being 78.
we feel robbed of the years we could have done so much together, he is such a vital, physically fit man who is very young thinking and funny too.
Sorry I’ve gassed on for so long.
With love to all Aix

 

[Aix]

Sorry one more, Silver’lantern. Oh my goodness, how terrible for you.
We had a beautiful black Lab and we still have the JR x Chihuahua. They were both rescues from Ireland. It was awful that the Lab was diagnosed with PRA (progressive retinal atrophy) and my husband kept insisting (even to the vet) that she should be put down, we had a horrendous scene in the vets where he was insisting and the vet refusing, I was in floods of tears.
He never did insist and get his way, I even went to the length of telling them of his Dementia and made them put on file that he could not insist. He loved her and I loved her even more esp. after her diagnosis- she was only 6.5 yrs. almost exactly a year later she had an accident injury to her spine, she lost use of both legs and the vet felt that this beautiful strong girl wouldn’t be able to recover her mobility. We let her go. I kind of digressed Siler’lantern, the most dreadful thing I’m ashamed off is that when my husband had one of his turns as described, and after 2-3 days of pushing and pushing and I would lose it, our beautiful Labrador girl used to go and hide even soiling herself. I cannot forgive myself for that.
I hope that your loved pet found a loving home, so very difficult for you. I think I would have done the same.x