Needing support/chat caring for husband

[Jacqueline_22011]

Can anyone point me in the direction of support groups online for me to chat, I have lived with my husband for 14 years, married for 3, he was disabled 15 years before I met him, I have no problems with the care (my job is a carer for a company) my frustrations are dealing with my husbands moods and finding a way to vent my frustrations without shouting and arguing with him. His disability has got worse over last 6 months and He is now in a wheelchair permanently and becoming more incontinent, he is struggling to accept this, which I understand, but takes his frustrations out on me. (He is 65, I am 56)I am becoming very low and depressed. Because his accident (which caused him to become disabled) involved a brain injury, he does quite irrational things and his memory is really bad he denies his actions. To be honest all I need to do is talk to someone to try and help with my feelings, and spoke to my doctor and they referred me to ITslk but have not heard anything from them. Any guidance would be gratefully appreciated.

[bowlingbun]

Welcome to the forum.
You sound very tired, when did you last have a break?
I've been caring for my son, brain damaged at birth, for 42 years. I am nearing 70, tiredness is my biggest enemy.
Are you getting any help with your husband?
When did he last have a review for his brain injury?

[Wendy_1812123]

I too am a unpaid carer for my husband, he has been in a wheelchair for 6 years , he wouldn't persevere with prosthetic legs and is also obsessed with going to the toilet , he uses catheters to empty bladder ,but struggles with any thing else , he needs me for assistance with personal care which I accept ,but uses his need for the toilet to keep me with him, , I looked up narcissism and it described him to a T. Iam questioned continually as to where I'm who am I talking to and all aspects of my movements ,, so bad I literally lose my temper and try and get my own space, although I can hear him shouting for me , no idea how to deal with our situation

[bowlingbun]

Wendy, when did you last have a break?
I know this looks like an idiot question, but it's very serious. You can't keep being slave 24/7 for the rest of your life.
You need to go out, feeling free, some of the time. If you love him enough to care for him so much, shouldn't he love you enough for a 2 week break???

[Wendy_1812123]

Tried getting a break ,but unless he volunteers to go somewhere they can't make him ,and he refuses, he can't be cared for at home as they can't make sure someone is here when needs the bathroom, ,i do see two very supportive friends an hour or two a week , but they can't even come to me as he is very abusive and accuses them of taking me from him ,, I just go for walk or go out for an hour or two at most , we are both in ourseventies ,and his unreasonable behaviour has ruined our final years , I no longer even like him which makes it harder to suffer his abusive talk ,

[Charles_2112]

Wendy, nobody has the right to abuse you. And you have the right to leave an abusive relationship. It may sound really scary because there are lots of unknowns, but to be honest, to me your situation is not something anyone should expect you to put up with - and anything, no matter how scary, would be better.

With you leading your own life, he'd have no choice but to accept others.

Think about it - what if a friend was in your situation? What would you say to them?

[Jimmy_2204]

I don’t want to be a burden to anyone, but I don’t know how to cope with everything by myself. I knew I couldn’t do this on my own. Talking to someone like a therapist, family member, or close friend can really help. You don’t have to go through everything alone. There are ways you can get help with your feelings and get through this. wordle unlimited wordle

[bowlingbun]

Jacqueline, may I ask how old you and your husband are?
Nothing is going to change for the better unless YOU do something.
If you "no longer even like him" why do you stay?

Have you told your doctor how things are at home?
Considered counselling?

What would happen to him if you fell ill?
He would have no option other than to accept outside help - a nursing home would be the only option, given his need for help with the toilet.

[Tony_2009]

Jaqueline, frustration is hard to deal with, and leads very easily to guilt.
My wife was diagnosed with Alzheimers 2 years ago, and her behaviours and moods have changed and are still changing. She too has mobility problems, and anxieties about leaving the house, and about meeting people, which got worse during lockdowns. I am now a full time carer, and whatever goes wrong, I am to blame.

I often get told to take a break, but how? The support organisations in our are are running short staffed due to covid testing. There are also long waiting lists for help.
I wax offered a carer coming in for a couple of hours a week by one organisation, but what can I do in a couple of hours during the day, except go for a walk and worry if my wife is OK.

We've been married for 40 years. Wherever I've gone , we've gone together, shopped together, gone to cafes together, pubs
together, gone for walks together. So where does a 60 year old man go on his own for a couple of hours?.

I have found calling MIND, or carers uk, or the Dementia helplines useful, just for someone to talk to, when the frustration, and loneliness get a bit too much. Its either that or have a bloody good cry, and sometimes its both at the same time.

[eastendgirl]

I can relate so much to all the things everyone here has said. As carers we cope with so much, both physically and mentally, often tolerating behaviour that we would not otherwise accept from that person in different circumstances. We make allowances, we overlook the nasty stuff, we forgive the (sometimes) unforgivable. But all that comes at a cost, to our own wellbeing.

Pointing out to our caree that if we weren't around to look after them they would have to either: manage / accept outside help / go into a care home; is all very well, but we have to live with the fallout of being brave enough to say that. Sometimes the fear of the fallout outweighs the need to say how we feel, so we bottle it up, for an easier life. A person can't have external support forced on them either, even if it would be in their best interests. Many people feel literally stuck in their living situation because there is no quick, easy fix.

Most people can't 'just leave' however much they might feel they want to. Intertwined lives, homes, finances can't be undone just like that. Leaving a partner whom one has been close to and looked after for a long time is not an easy decision to take either practically, logically or emotionally.

I speak from personal experience, of having been both a carer to my Mum (now deceased) and my husband of over 3 decades, but now dealing with health issues of my own as well. Living with someone 24/7/365 without a break can take its toll on even the most patient and tolerant of people.

I don't think there are any easy answers here. Looking online for group/peer support is one option. If one can afford private counselling, that is another outlet which might be helpful. Organisation helplines, specific to the health issue is another possibility. If really in despair, a call or email to Samaritans is another possibility as they are available 24/7 when most other places are shut.

I have tried combinations of all of the above at different times depending on the context and situation, all can be helpful. I would say just reach out to someone. No one can fix or make another person's situation ok, but sometimes just sharing and not feeling so alone with it all, helps.