Feeling alone and frustrated as I care for my disabled husba

My husband had his first stroke in September 18. He had a bleed on the brain and lost some movement on the right hand side of his body. He had limited mobility but could walk short distances. I’m December the same year He had another stroke this time a more serve one that took away his mobility and more damage to his brain all though he could communicate a little. June the followg year he had another stroke and now he’s confined to hospital bed in my dinning room. At Christmas myself and the carers noticed a huge change.He was withdrawn and kept pointing to things that weren’t there. I’ve talked to the doctors about my fears it could be the start of dementia. They just kept saying it was a water infection and handed out antibiotics. But these last few weeks he has gotten worse and gets very agitated with the carers. He’s incontinence both ways and doesn’t like having the pads on and tries to pull them out. This happens during the night to abd I’m always on high alert to any movement. He stripped off completely yesterday and wouldn’t let the carers near him. Its not nice as I have three teenage children and they don’t need to see this. I had to try and calm him down. Sometimes I feel its too much but then I feel guilty. He’s only 61 and it all seems so unfair. Sorry as I know there are lots of people on this sight in similar positions. I just needed to talk about it and I don’t have any one other than people telling me to put him in a care home and I don’t think I can do that.

Hi Susan,

welcome to the forum.

That sounds a tough situation to be handling, juggling the needs of the whole family.

Is the GP working on a hunch or has your husband’s urine been dip tested to prove he has a UTI? If it is a UTI, it can make people act very strangely. However, if it’s not a UTI then they should be testing for further TIA’s and dementia.

If his needs are increasing, then his Needs Assessment should be updated and his number of support hours increased. This would require you to contact social care and push for this to happen.

There is specialist clothing available for adults which would prevent him removing his pad - but unless he lacks mental capacity, this could be an issue. Also, the care workers would have to wrestle him into it! However, your needs are important too and this would remove your need to be so on-alert and vigilant.

If he opens his bowels at a similar time each day - could he be hoisted onto a commode and would he tolerate a catheter better than pads? If so, that would remove the need for pads.

There is medication available for agitation but I would read up on it first, as it does have side effects.


Susan, you can’t go on like this without a LOT more help.
Has your husband had an NHS Continuing Healthcare Assessment? Google this for more information, and look at the CHC Framework too. It’s a postcode lottery, but would give him FREE care, as much as he needs, either at home or in residential care.
Your family need their mum to be happy and do things with them when you are not dog tired.
Is he getting PIP care AND mobility at the highest rate.
Have you applied for Council Tax Exemption due to severe mental impairment? This can be backdated!!!

Hello Susan, welcome to the forum
I was in a fairly similar position to you, which started before 2016. My lovely husband had multiple strokes, then eventually diagnosed with vascular dementia. Had other health issues later on.
I certainly didn’t want my husband to go to a nursing home as most people don’t. But what I and my family wanted were not what my husband needed. Needs and wants are different. You state you can’t have your husband in a care home? Sadly it may come to that, but in the meantime for your own, your family and your husband’s sake, please try to sort out more help. You could get to the stage where you are too exhausted to go on. I understand how very hard this is and how the guilt monster kicks in. Kick the guilt monster away.

Let’s look at this from a practical point of view and in particular with regard to your own welfare and well-being.

Get some help, but don’t be in too much of a hurry to rule out residential care.

How long can you continue to do all of this on your own? Five years, ten, twenty?

As your husband is in the dining room, this is hardly ideal, especially in a home with teenagers.
Has it been suggest that you approach the council for a “Disabled Facilities Grant” to fit a separate downstairs bedroom with wet room?
Social Services would probably need to arrange an Occupational Therapists visit.
Is there room for this sort of extension?
When my eldest son moved back in with me when I was disabled in a car accident, he put me in the garage to sleep!
First though, he spent the whole winter converting it into a lovely insulated bedroom with ensuite, complete with washer dryer.
Would this be an option?

Thank you everyone for you kind response.
We are supposed to be getting and extention to the back of the house but plans have been changed twice. It was passed in April from last November but we are still waiting. We get 2 carers in six times per day. They say the delay in extention is due to council dragging their feet. We have lots of equipment in a tiny house you can’t move. The house feels a mess most of the time. Its through the night when I have to get up because he’s moved around. I’ve asked care manager if we could have a couple of night shifts a week and she said she didn’t see it being a problem, that was a month ago and she hasn’t gotten back to me and I’ve left umpteen messages. Someone was supposed to ring on her behalf today and didn’t nothing new there. OT is good when he needs anything she’s straight there and she’s so annoyed with the council holding everything up.
I’ve spoked to doctor about suspected dementia but she’s still reluctant to do a test convinced it’s a mix of the meds. I’ve seem people with dementia and he’s showing every sign. They don’t even test his water because they say its hard to get a sample .

Yes bowlingbun he’s getting pip high rate for care and mobility.

Council Tax exemption? This can be backdated to the day of the stroke, or 6 months afterwards.

Yes bowling bun we get council tax exemption.
We were supposed to have meeting with chc a couple of weeks ago but after arranging to have time off they cancelled at last minute because care manager over ran at another assessment so now it’s rearranged for July 2nd. I’ve tried to contact care manger for over two weeks now and left umpteen messages but she’s not getting back to me. She said she would look at getting maybe two nights a week night shift.
I’ve asked the doctor if they could give him something for when he’s agitated but they said he’s already on the highest meds. Feels like you just get over one thing to be hot with another.

Hello Susan

Welcome to our forum. I’m not sure if you’ve seen the information on our ‘Care for a Cuppa’ sessions, we run them every Monday. It’s a great way to meet other carers who are in a similar situation, support each other and share tips. There’s no pressure to share anything you’re not comfortable with. We also run Share and Learn sessions also on the link attached. Many of our carers have said how helpful they’ve found the sessions.

It would be great to see you there, here’s the link.

https://www.carersuk.org/help-and-advic … ne-meetups

with best wishes