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New to forum. - Carers UK Forum

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Hi. I've never used a forum before so bear with me. Somehow I have managed to care for my husband for six months now after he suffered a massive stroke at the beginning of the year. He's 78 and I'm 68. I just hate every single moment and haven't had a break at all. I've just been told to go away in no uncertain terms and am sitting outside feeling lonely, depressed and miserable. I just wanted a moan to get it off my chest. I could go on for ages but not in the mood. Anyone out there who ever feels the same
Hello Edith. Welcome to the forum.
My late husband had a massive stroke after a Tia's. Was such a shock, more because his personality changed in many ways.
He became verbally aggressive many times and accused me of all sorts. It wasn't him, it was the stroke causing brain changes. Once I could come to terms with that it was easier in a way.
Have you been in touch with the stroke society?They can be very helpful.
Do you have any help, carers? Someone to give you a break?
Hi Pet66. Thanks for your reply. I have carers coming in 3 times a day who change my husband, he's doubly incontinent but apart from that no other help. Friends have left the area and I'm just feeling sorry for myself. I guess I'll get over it but it's so hard.
Please stay on the forum. You can let off steam as much as you want. No one judges.
You are allowed to feel sorry for yourself. It's a massive change in your life. You are important too. Need some me time to function. Do consider the stroke society. They will have advise for you.
Hello Edith

As Pet66 said the stroke changes the brain and not always for the better.
The stroke and frustration, anger and depression could be at play.
Removing yourself to the step for some air was a good move, or just to another room.
Doubly incontinent is a lot to deal with.

My mum has had several TIAs.

Click onto this link for the Stroke Association and scroll down to put your postcode in to find a group in your area - even if you can't get to the group, contact the organiser to have a chat about other help and tips etc and they might know of a companion sitting service for a few hours a week so you can get out for whatever.

https://www.stroke.org.uk/finding-suppo ... t-services

the Silver Line helpline for support and a chat
https://www.thesilverline.org.uk/
An after effect of a stroke is tiredness, fatigue, it can leave them incredibly tired and needing a lot of sleep, my mother would tell me to leave her to sleep, but from the stroke her words weren't always of her choosing/couldn't find them, go home - I've only been here an hour mum! Then I would deduce she wanted to sleep so I told her ok you sleep and I will get a cup of tea/I will read a book.

This is a massive shock to both of you and will take time to come to terms with it and adjust.

Don't feel bad, you are having normal human responses.

Have you had a care needs assessment for your husband with social services? It is means tested to £xxx savings.
Also a carer needs assessment for your needs.
Your husband if or when able to go out will qualify for a blue badge if he is classed as disabled with the stroke.

Also for any hospital appointments there should be a phone number in the letter for patient transport, I don't believe you are allowed to travel with him, you would have to make your own way.
Edith67 wrote:
Wed Sep 21, 2022 3:20 pm
Hi. I've never used a forum before so bear with me. Somehow I have managed to care for my husband for six months now after he suffered a massive stroke at the beginning of the year. He's 78 and I'm 68. I just hate every single moment and haven't had a break at all. I've just been told to go away in no uncertain terms and am sitting outside feeling lonely, depressed and miserable. I just wanted a moan to get it off my chest. I could go on for ages but not in the mood. Anyone out there who ever feels the same
Edith

So sorry your husband has had a stroke.
A stroked doesn't just happen to him, it happens to you as well.

An effect of a stroke is fatigue, my mother had TIA strokes and for several months was very sleepy and tired as her brain was recovering and adjusting.

A stroke is like a brain injury as though someone struck his head with a hammer.

Recovery depends on many factors, age, personality, type of stroke and severity and the will to survive/recover.

If your husband has debilitating factors from the stroke eg loss of function of an arm, paralysis down one side or drooping one side of his face, if his speech is affected etc then he might not want to go out thinking he will be a burden and that people will stare, point and laugh at him. If you had say a massive red spot on your face would you want to go out?

If he is unable to walk/walk far he might not want to be in a wheelchair and pushed around or not want to burden you with pushing him and how will he get in and out of a car?

Google for your local stroke club or ask your stroke clinic for details and go even if on your own and have a chat there for tips and advice.
A friends husband had a stroke with left side paralysis and is still recovering a few years on and she pushes him around in his wheelchair to alsorts of events and activities.

Get in contact with the stroke club and see if they can help you with ways to get him out with you or ascertain if it is too soon for him or if he has given up, is depressed about it, being miserable or sorry for himself. His life has blown up in his face, gone belly up by debilitating him in this way, stripping him of independence, physical mobility and ability and impaired cognitive skills. it is a lot to get his head around and overcome.
Hello Edith,
I usually concentrate on financial matters. Money doesn't solve anything, but can make life easier!
Is your husband claiming Attendance Allowance?
Exemption from Council Tax due to "severe mental impairment"? I hate this term, but sadly, a stroke comes in this category.
Don't try and do the work of two.
Think
Can I avoid doing it altogether.
Can someone else do it for us?
Do away with all the borders in the garden and employ a gardening service.

Can something else do it. I have two mechanical slaves. A tumble dryer and a dishwasher!
Hi Edith

My father had a stroke at the age of 52 that took most of the use of his right side and most of his speech. He'd already had a heart attack a few years earlier but the stroke was the one that changed everything. Up until then Dad had felt relatively invincible, and now suddenly he was massively dependent on others. It took him a long time to get past that and start to rebuild his independence. Some never do.

But the main change was in the way he looked at life. Instead of ploughing on regardless, for a while he was stuck in a morass of misery. He was the provider who couldn't. He was the person others relied on who now relied on others.

It took him a long while to get over that.

But during that time, and when frustrations built up, he lashed out verbally (amazing how people who struggle with speech can swear mightily well), mostly at my mother - and sometimes at me. Understanding why helps in the sense of realising it's not necessarily meant, but it doesn't stop it from hurting.

Is there a stroke group in your area? They helped Dad come to terms with his stroke more, and helped Mum to cope too.
A stroke can change personality, it increased my mothers sense of humour but for others it can go the opposite way and for some can lead to anger, withdrawal and depression.

Like Charles' father, my mother was upset and frustrated about her loss of independence, she was stubborn and independent and took great pride in running her home and providing love and care for her family that she had been giving for over 50 years.

I wish I had known about stroke clubs when my mother had her first one, however a colleague had had a TIA and was a massive support and help, saying to celebrate all milestone and small successes, be prepared for plateaus but keep encouraging eg advancing from spoon feeding her to her feeding herself and not sweating the things she can't do eg write letters because I can do that for her. He also said that understanding and kindness were majorly helpful as she could feel humiliated and anxious about life now and in the future. Also rest and sleep were important because it is very tiring, it must be because the brain is trying to repair, adjust and recalibrate itself

Another colleagues father had a massive stroke and he told me to get POA's for my mum which was invaluable advice.

My mother was not bothered about driving because she couldn't think for the life of her how to drive a car anymore and she had us to take her out and get things for her. She had frustrations about looking after the house, garden and us and had great guilt that we were doing it for her but then came to accept us doing it and returning the care to her. It took a few years of encouragement for her to have full acceptance and be fully comfortable with all of this and being taken out in a wheelchair but being taken out in her chair was better than sitting in her chair at home.

Do look for a local stroke club/group and get in contact with the organiser. A friend went to a local one and found it a great help and the meetings were friendly and welcoming, it helped to normalise things, she had a lot of tips on coping methods and advice on help at work and benefits etc.
Even if there isn't a local one, you can have a chat on the phone withe group leader to discuss things with them.