I’m now into my 7th year of living with a man I don’t like but can’t leave because he has Alzheimer’s. Diagnosed at 50 years old I feel my own life is ebbing away waiting for him to go into care or die. I’d always meant to divorce him, once my children were old enough to accept it, but the Alzheimer’s diagnosis came first and meant it seemed too cruel to just leave him to fend for himself so I stayed. He’s not unpleasant to me, but just does absolutely nothing, and has pretty much been like that since his diagnosis. He made no attempt to slow its progress, embracing new activities, a better diet, mental stimulation etc, which really angered me. In fairness he probably is now incapable of doing anything but it annoys me he made no attempt to fight it, or reinvent himself into doing useful jobs around the house. He doesn’t wash, brush his teeth, change his clothes (rarely) and I don’t feel I really care enough to make him do it. I moved out the main bed room years ago and now don't go in any rooms he’s in. I had gone on holiday with my adult age children a few years ago but now can’t go as it’s impossible to leave the area in case he gets lost and needs collection. Everything about him annoys me and as he steals away my opportunities to enjoy life I feel more and more resentment towards him. I hate the fact he’s turned me into a nasty person and short of finding an extraordinary amount of money to put him into care (he wants to stay at home) I don’t know what to do. He's only 60 years old, in good health and consequently could live many more years. He’s stopped drinking anything other than the one beer I give him with his evening meal. I do give him glasses of squash & water alongside his lunch, breakfast etc but he leaves them untouched. He’d previously drank the contents of the wine cellar and would sneak bottles of beer to drink in secret but I now hide them. I am however wondering if I should just let him drink as much alcohol as he wants which alongside all the chocolates/sweets he buys at the local shop will speed up his demise. Am I going to be stuck like this for ever, is it wrong, and does anybody else feel the same?
Trapped with Alzheimer’s husband I don’t like
- Thread starter mummydash
- Start date
I honestly don't know what to say, you love them but you hate the condition AZ, it's hard.
As for reinventing himself,... And all the rest well that won't be happening. I hate myself for posting negatively on here but it's him or the life you want, good luck finding happiness there and a new partner.
Really walking away is an option and please never feel guilty of that's the road you choose, too many of us here to go down the other road. K
As for reinventing himself,... And all the rest well that won't be happening. I hate myself for posting negatively on here but it's him or the life you want, good luck finding happiness there and a new partner.
Really walking away is an option and please never feel guilty of that's the road you choose, too many of us here to go down the other road. K
I think you’d find very few folks here who’d judge you if you decided to walk away. Caring for someone you love with dementia is arduous enough. To do that when your love was already long gone, doesn’t bear thinking about. Please don’t discount it as an option, for your own good.
Well you have just described my life exactly. Also wanted a divorce five years back, when I think the dementia started. Same OH does not shower, change clothes, no matter how much I ask. He's not nasty, just not the person I married. Non stop monologue of his life, which I tell him not interested but he just keeps on going. Screaming and shouting at him have no effect. I even have pushed him hard out of the room to shut him up. He makes an awful mess just making a cup of tea. Same he used to drink, emptied our spirit cupboard. Everything is hidden, car keys, money, he will go up coop and buys tobacco, then falls asleep with lit cigarette. So no money no tobacco, buy him beer on weekends. Life just seems so unfair, I can see my meager savings being used for his care, not for us to have an easier retirement.
What can we do, the evil thoughts that go through my head, that life would be so much better without him. How long do they last. Sorry ranting, but see where you are coming from. He is only 68 and I'm 59, still working full time, home office a lot of the time. But do one day a week in office, never sure what I will come home to. Some days do not want to come home.
Hi @mummydash
I am sorry to read about your situation, which is unsustainable. To me, the fact that he has Alzheimer's weighs far less than your chance for a better, happier life. If your intention was to leave him then that is not altered by his diagnosis. You don't have to stay or do anything for him. There's no obligation for anyone to take on a caring role, most especially in circumstances where resentment will continue to grow. I found it hard looking after my wife as her Alzheimer's progressed, despite still loving her. Being a drudge for someone one no longer cares for and who doesn't appreciate you seems so much harder.
You describe yourself as trapped, but it is only feelings of 'duty' and guilt that are holding you back. You have it in your hands to seek out the better life that you deserve; a life without him.
I am sorry to read about your situation, which is unsustainable. To me, the fact that he has Alzheimer's weighs far less than your chance for a better, happier life. If your intention was to leave him then that is not altered by his diagnosis. You don't have to stay or do anything for him. There's no obligation for anyone to take on a caring role, most especially in circumstances where resentment will continue to grow. I found it hard looking after my wife as her Alzheimer's progressed, despite still loving her. Being a drudge for someone one no longer cares for and who doesn't appreciate you seems so much harder.
You describe yourself as trapped, but it is only feelings of 'duty' and guilt that are holding you back. You have it in your hands to seek out the better life that you deserve; a life without him.
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Really feel for you. My husband, lifelong diabetes 1,60s was late diagnosis Parkinsons as it was always put down to the effects of diabetes type 1, then dementia diagnosis only followed 9 months ago, and he is now moderately severe dementia. Apathy, paranoia, Mefirstlastandmiddle, anger,impatience, cruel judgements are all part of dementia and the spouse is the target trusted not to react. I recently got my husband into hospital after several days of trying to convince 999 and 111 it was necessary as he was jabbing and eating indiscriminately. I hated that my life was less important than his. Turns out district nurse should have taken over last autumn when specialist expressed concern but diabetic nurses just left me to it despite my frequent frantic calls. I couldn't leave the house. In hospital he has been declared no medical capacity. District nurse has to take over as family is not legally obliged to care and he just wouldn't let me any more. Yes you read that right. Family is not legally obliged to care. Tell Social Services you can not and will not do so. Social Services are legally obliged to care. Get as much advice as you can from all sorts of organisations. With luck your husband will go into hospital or get care imposed. Take stock. Get your finances and belongings and wishes ring fenced. Then you might be able to think straight about what is best for you. Best wishes
Hi @mummydash and @Sharon143
I am not trying to influence you one way or the other, but I wanted to point out that if you are still with your OHs when they need care then only their assets can be used to pay for their care ie savings etc in their sole name and 50% of joint ones. Accounts in your name are not used. Neither is the house as long as either he, or you as his spouse, is living in it
BTW, I understand the feeling of being trapped - I did not choose my avatar or signature lightly
I wish you well in whatever you decide
xxx
I am not trying to influence you one way or the other, but I wanted to point out that if you are still with your OHs when they need care then only their assets can be used to pay for their care ie savings etc in their sole name and 50% of joint ones. Accounts in your name are not used. Neither is the house as long as either he, or you as his spouse, is living in it
BTW, I understand the feeling of being trapped - I did not choose my avatar or signature lightly
I wish you well in whatever you decide
xxx
@sharon 143. That's the dilemma. If my husband goes in a home now I kiss goodbye to half our joint retirement savings, and although I can keep the house, if I move somewhere better suited to our retirement income and needs, I lose half of any profit to pay for my husband's care. The financial assessments seem to assume you're both ancient and live in your forever home already. My family is has been long lived for 4 generations in the female line, I could be looking at another 40 years of life, with half our joint income gone. So my husband has to come home until we have moved house. I'm not yet old enough for a State pension, got made redundant at 63, and my redundancy pay is long gone!
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agreeing with Kevin, as it is horrid to feel so trapped and unhappy. find the way, the right way to get him cared for if you can and walk away.
This is also my life we had even stated the path to divorce by agreeing how we would separate . Then the doctor sent my husband for a brain scan and sure enough he was diagnosed with Altzhiemers. Guilt and pity came flooding in and i then found myself being labled as his carer !!.... You cant divorce a man with Dementia can you ?.. I need a clear guide to the finances as well
Hello @houston, welcome to the forum
If you click the link I've placed below you will find the Society Factsheets, that include a whole section on finances. I hope that helps you.
www.alzheimers.org.uk
If you click the link I've placed below you will find the Society Factsheets, that include a whole section on finances. I hope that helps you.
Publications and factsheets
We produce a wide range of publications and factsheets designed to support and inform anyone affected by dementia.
www.alzheimers.org.uk
Better news this week. Finally. Hospital making a mess of husbands needs, meds and diet, next to last straw was brand new, strangedischarge coordinator telling him he'd be off to X nursing home next day. I had to ask where iit was and what was the plan. 8 miles 2 busses and 2 hours from home... Plan was to be assessed for permanent residence..... Not what had been discussed for 10 days. Supposed to be assessed and meds changed for return home with nurse visits. I also realised nursing home on street we left 25 years ago after our house was repeatedly vandalised. Husband would get hugely upset in nursing home, not better! He'd be stuck there. No timescale for departure only next day. Husband kept saying he wanted to go home. I made sure he wanted this and we left the ward. All hell broke loose on the way to to hospital exit. Shouting staff trying to block the way, calling security, telling us husband couldn't go he had "dolls" he had "doula". No toys, no birthing partner he's a 67 year old man. Kept going. Security manhandled us loudly and forcefully out of the lift, husband now has Chinese burns and bruises on his arms. He was forced back to ward, police were called to get me out..... I called solicitor while being guarded.....Last straw arrived. DOLS or DOLA Deprivation of Liberty Safeguards / Act form had been input 3 days before, without any apparent reason. Ward reluctantly sent out photocopy. Lots of factual errors. Supposed to be explained and formally acknowledged with patient's representative. Me. I'd left a very happy and contented Bill the day it was input No idea such a form existed.... Police waited until I was on bus home. Spent whole night getting advice, Back at hospital 5.30am to be there for husband if poss. Security rocked up to guard me as I sat outside reading. Ward Matron asked me to wait until later, no problem with that. Correct discharge coordinator turned up. Horrified at events. Yes he's awaiting discharge to temp nursing home to then come home...... Ward matron had the grace to apologise for previous day. (It happened. It was unnecessary and they'd broken the law....) Agreed husband to stay in for NHS continuing care package to be put in place for direct return home. Meeting all staff next week for this. All staff suddenly very kind and quietly eating humble pie.
Never ever going to let my husband stay even one night alone in that hospital if he has to go in again. Staff mislead, make mistakes, do not follow medication and meal protocols required, do not understand dementia except by infantilising and sedating patients. Disgraceful
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I read people who say how much they love their OH and will care for them whatever etc etc. I feel envious of that, I try not to get irritated or annoyed but he is so awful sometimes. Passive aggressive I think they would call it. He used to be very fastiduous about showering and clean clothes. Now I have a battle to get him to wear clean underwear, he had the same pair on for a week and when I insisted they went in the wash he looked them over and said there was nothing wrong with them. He tells me he has showered when he hasnt and if I say to him I am going to watch and make sure you get in the shower he gets very annoyed with me. I do feel like I want to walk out on him but I doubt I really will, he just pushes me to feel that way - or rather the Alzheimers does. I know you marry in sickness and in health but I would never have married this person that he has turned into.
I can really relate to your situation and how you’re feeling… I too feel stuck 3 years almost with Alzheimer’s diagnosis but years of unhappiness before. My husband is 54, I’m 47.
3 teenagers.. I feel like my life is just slipping away.
what I like about being here and writing about my feelings is that I feel understood. I can say I am fed up and wish I had my life back, sooner rather than later, and people understand. No judgment
We all just do what we can to help each other, over 10 years on here and it is what it is.
Sometimes I've posted on here really stressed out and had my legs slapped (metaphorically) but this site is beyond price. Always someone here to listen. K
Sometimes I've posted on here really stressed out and had my legs slapped (metaphorically) but this site is beyond price. Always someone here to listen. K
Same here! I am letting the clothes changes, bath etc. go. It does not reflect on you! OH does try to wash a bit and shave every few days. It's Monday, he's just shaved and changed his shirt ready for his first trip to the barbers since coming out of hospital. A trip we've planned and reiterated and remembered several times. For Thursday.....
