New here and need help

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I married my husband with cerebral palsy in 2023. It only affects his right side, so he is somewhat mobile. He lived alone for 15 years before he met me. He was married previously and has a grown child from that marriage.

Since we married, he has changed significantly from being a positive, independent person to being reliant on me for everything. He has no friends other than me, no work, nothing to do except watch what I am doing. I work at home and he comes into my home office disrupting my concentration. When I have a phone call, whether itā€™s work or social, he wants to know who it is and sometimes asks me to put the phone on speaker so he can listen to what is being said. Some of my work calls are confidential.

He sleeps 12 hours or more every night. He wakes up around midday and wants attention when I am well into my day. He expects me to bring him food. He does not seek help from doctors, physical therapists, nobody but me.

People who know us both have commented that he has declined seriously since we married. When we do go out, which is rare now, he wets himself and itā€™s embarrassing for both of us. He falls frequently and injures himself with cuts, scrapes, and bruises.

He does nothing really to help me. Even things like sending an email or ordering groceries online would help me, but if he does it, he has to be reminded many times, and it is exhausting.

I have had to take a big pay cut recently and I can no longer afford our rented house. This is becoming urgent. I have asked him to look into support or services that he can access through his benefits, but heā€™s not living in reality. We have no intimate life anymore, and Iā€™m too young to accept that.

Most of my friends live in another city. A big part of me wants to move there alone, get my own cheap place, and start over. They have offered to help. My husband has seen that I have pulled away emotionally and uses manipulation tactics like saying he couldnā€™t live without me. But all the conversations I have had with him about what we could do to make our lives better and get support for us end in him promising to make an effort but results in nothing.

I am just so tired and disappointed that he has changed so much, as are my friends, who believed in 2023 that I had finally found someone who would be with me forever. But it doesnā€™t feel like a marriage now. I am so stressed that I wake up at 3am most nights and canā€™t go back to sleep. My doctor said itā€™s from burnout and stress. I feel so lonely.

Any advice would be welcomedā€¦ thanks.

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@Amber123 ,welcome to the fourm. I would suggest that you speak to social service that you need help or if he is in the same doctors as you ask them to step in. By the sound of it it sound like something has affect his brain and he is acting more like a child you could seprate from him but that is down to you to decide. there are a few on here who have similar experinces.

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@Amber123 Hello and welcome to the Forum. My personal feeling is that if you have tried to talk to your husband, and he wont work with you towards improving both of your lives, then leave. It sounds as if you have gone the extra mile to support him? It is good that you have friends in another city who can help when you re locate.

If this advice sounds brutal, then you could consider a finding a counsellor and a safe place to discuss? I realise if you are struggling financially this may not be a viable option.

Sadly from what you have put it is only going to get worse. The ā€˜controlā€™ as in listening in on your phone conversations and asking you to put them on speaker phone is not good. If you do leave, I would write to your husbandā€™s Gp and say he is a vulnerable adult and is now living alone. Hopefully some support can be offered but whilst you are there caring, they will let you even if it drives you to a break down or utter and complete despair.

Please consider ā€˜Roll Callā€™. We face a mixture of ā€˜challengesā€™ caring but there is a huge amount of support and empathy and no judgement. Sometimes some black humor creeps in. For me it has been a life saver.

Your husband sounds similar to mine. He is 86 next month and medically non compliant. He has no friends and pre covid we were members of Rotary but he had no interest in getting to know the other members. He resents me going out and having any kind of life that does not revolve around him. I wish I had escaped years ago!

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It sounds like your marriage has ended.
The marriage vows apply to both of you, only he is making zero effort. You are doing all the work and heā€™s doing nothing. Is that a fair summary?
Normally I would suggest private counselling, but that is out of the question, price wise.
What does your husband do with ā€œhisā€ benefits?
Is he fully contributing to household expenses, or keeping them for himself?
Have you had a benefits check recently?
Like others, Iā€™m wondering if the CP is not the only thing wrong with his brain, and that is going to be a very difficult conversation!
How old is your husband? Do you ever see his son? Sonā€™s age?

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@Amber123ā€¦.hi, welcome to the forum. Please think about what is right for You, it sounds like things are really tough for you. Marriage has to work both ways, even if someone is disabled. If theyā€™re capable of helping themselves and you a bit than they should be doing what they can even if itā€™s only a little. Iā€™ve been in a similar situation where my husband had numerous medical issues, he spent 7 months overall in hospital and a physio rehab centre. He came home and refused to work with the physio team, so much so they withdrew their support after one week! We had carers in doubled up, 4 times a day and he was weeing in bottles and using nappies as he wouldnā€™t/couldnā€™t go down to the bathroom, though he was capable of this. Heā€™d even walk past the bathroom on his frame each morning and not try to use the loo or clean his teeth. Heā€™s now in a carehome and I donā€™t see him as he decided he didnā€™t want to stay friends. To be honest itā€™s a relief to be able to start to live my life again. My elderly parents live with me and I work full time so I still have responsibilities but Iā€™m so much happier now. Please donā€™t leave it too long before you work out what you want to do. Your health and life matter too!

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Yes, that is a fair summary. Iā€™m so sad and angry all at once.

He gives a little of his benefits occasionally to help with groceries, but I pay for the huge majority of everything. He buys random things with his. A few days ago, I was furious when he bought a Ā£500 piece of electronic equipment for his computer without even discussing it with me first.

Husband is 55 and his son is in his 20s. He has no communication with his son even though he lives about 3 miles away.

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That is unforgivable!
He really doesnā€™t care about you if heā€™s doing that when you are struggling to pay the rent.

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@Amber123ā€¦.Iā€™m guessing that youā€™re not much older than he is? Mixed emotions are completely normal, not surprised you were angry if heā€™s spending that much and you are struggling to pay the rent. My husband is 59 now.

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Iā€™m 5 years younger than he is. Iā€™m too young for the rest of my life to be this way.

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Thatā€™s how I felt. It feels like financial abuse. I was abused in my previous marriage, so Iā€™m possibly more sensitive to things like this when they happen to me. Iā€™m really angry that he knows what my ex-husband did to me and heā€™s doing similar things to me now, just in a different way.

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@Amber123ā€¦ā€¦thatā€™s exactly how I felt, Iā€™m 56. I went through lots of emotions, ranging from guilt to angry but the overwhelming feeling is sadness. I would always have been there as a friend for him, but I couldnā€™t live with him and everything that entailed for the rest of my life.

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Good day, Amber.

My wife has professional qualificatons in accounting. Since we were married she has taken care of our finances. It was painful at times, particularly during a period when I was unemployed, but we got through. We now have our mortgage paid off and are in the comfortable position whereby we can afford the things we want, within reason. We live within our means. Neither of us is anxious to clear out our life savings.

I suggest you have a long and hard talk with your husband about a way to ensure you are sharing fairly. You could consider setting up a joint current account to pay for your shared expenses - food accommodation, etc. If you both have personal current accounts, you could set up standing orders to ensure equal amounts are paid into the joint account each month.

Your husbands cerebral palsy will disaffect his physical abilities, but his should not affect his mental ability. If he is smart enough to upgrade his computer system to the tune of Ā£500 he should be smart enough to handle a fair and equitable share of living expenses.

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Under no circumstances would I have a joint account with him, heā€™s utterly irresponsible and you run the risk of him emptying it completely! If he cared for you at all you would never be in the position you are in now. He needs to give you his money directly into your account until you leave. We had some very hard times after my husband was made redundant, to the point where even buying a new pair of undies was a special treat, but we both suffered together, both sold things we didnā€™t want to. Later, when our new business flourished, we enjoyed the proceeds together.

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Bowlingbun has a point; he has been irresponsible with money as I highlighted in my previous point. Perhaps it would help if you could indicate what type of accounts both you and he have at present. Also what methods you apply to attempt to ensure that money is shared fairly. Then we could have a better idea about why the present arrangement is not working, and how you could adjust things so that the boundaries and responsibilities were more clearly defined with a view to making things work better.

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We each have an individual current account. His benefits go into his and my salary goes into mine. All the bills are direct debited out of mine. He does not regularly contribute to the bills. He sometimes gives me Ā£100 for groceries or orders an occasional takeaway for dinner, and then wants large amounts of praise for making those contributions. He has admitted heā€™s bad with money. He hasnā€™t held a job for over 20 years - just his benefits.

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Benefit rates are set for ā€œsurvivalā€. Residents in care homes have almost all their pension taken as a contribution towards board and lodging, with about Ā£30 left for personal expenses. So husband should contribute all but Ā£30 to Ā£40 a week.

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Hello again, Amber. So although you have a shared life, the bills are charged to your account.

It seems to me that you need to either claim his share of each and every payment, or rely on his memory to offer his share. The former involves a fair amount of work on your part; the latter is clearly not working.

Having a joint account simplifies the accounting side of things, because money in that account is deemed to be jointly owned and is used for joint direct debits or sundry joint expenses. Probably the majority of your expenses are joint. Of course you must trust him not to use that money for personal purchases, e.g. computer accessories.

Is he irresponsible? Or is he just absent minded? Bowlingbun suggested earlier that he could now have a mental problem beyond cerebral palsy. I recommend you get him to have a medical check soon.

You will need to be the ultimate judge of whether you can trust him with a joint account. An alternative arrangement would be for you to demand a fixed payment from him each month to cover his share of your assessed joint monthly expenses. You could even get him to set up a standing order to make these payments into your account. Use Bowlingbunā€™s helpful notes on the way care homes charge, as a guideline.

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Hey Amber,

I truly understand where youā€™re coming from. My wife, Debbie, had a stroke 10 years ago, and my life has been on hold ever since. I havenā€™t had a single real day off in years. Sure, I get a few hours here and there where someone sits with her, but thatā€™s not the same as freedom.

Itā€™s not a marriage anymoreā€”itā€™s caregiving. And over time, that changes everything. My wife wonā€™t even decide what she wants to eat without a two-hour back and forth. Itā€™s not about companionship anymore; itā€™s about meeting needs, filling in gaps, and doing whatever it takes to keep things moving.

I get why leaving feels like the only choice. But if youā€™re anything like me, thatā€™s just a thought, not a real option. We think about it because weā€™re exhausted, because we feel trapped, but deep down, we know weā€™d struggle to actually walk away.

What you really need isnā€™t to disappearā€”itā€™s a real break. Not a few minutes here and there, not people asking ā€œHowā€™s your husband?ā€ like heā€™s the only one who matters. You need someone who just says, ā€œHey, fancy a cuppa? Want to sit outside for a bit and just forget everything?ā€

You need a moment where youā€™re not a carer, not responsible for someone elseā€™s every needā€”just you, being seen for who you are, not just the role youā€™ve been forced into.

If you ever need to talk, Iā€™m here. No judgment, no pressure. Just someone who understands.

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When you first married, I am assuming there were some endearing qualities to the person you are describing.

Do any of these qualities remain? :thinking: