Hello everyone, I’ve been lurking on this forum for about four years but am finally moved to post something. Sorry if it’s a bit long.
I’m 41, I live with my older husband (67) and mother (80). Mum’s lived with us since 2016 and has a number of health issues including epilepsy and a hiatal hernia. She’s trigged by nausea, but feels sick every day due to the hernia, and so takes strong anti-sickness medication.
I do all of her care, which up till now has been pretty limited, just providing her meals and sorting out her medication. She has her own very large room and bathroom and mostly keeps to herself. My husband tolerates the situation as long as she’s fine, but as soon as something is wrong he becomes resentful, which I can fully understand but it worries me as mum’s very emotionally wobbly and cries at the least little thing. She’s wary of him and he can be a bit snappy. We have our own business which means I can work around anything, but he gets impatient if I have to miss much work.
Mostly this has been fine but last week we discovered she has a DVT which is being treated but has required me to take her to hospital every day for a blood test with no idea of when that might stop. I have to take her as mum gets car sick (triggering fits) and I drive carefully as to avoid this. Also she can’t walk far so needs me to push her chair and wait for her. This is about 3 hours in the middle of the day and I’m fitting work and housework in around it, along with later nights so I can give mum her injected medication at the same time each evening.
It’s been ok, but about two hours ago mum had a fit and we have a hospital appointment she’s supposed to be attending around noon. She says she’ll see how she is to be able to go, but now I’m terrified that she’s going to require even more time in and out of hospital, causing problems with my husband. We were told that because she takes epilepsy medication her DVT medication might not agree with it, so it has to be monitored to see if they “play nicely together”, so now I’m worried we’ll have to change her medication around and it’s more trips to and from the hospital.
I feel like I’m trying to keep everyone happy by working extra hours, and shielding mum from any issues, but I’m so tired of this and it’s only been a week!
Sorry for the rant, I feel that other carers on here have so much more to deal with, but this morning it’s just getting me down.
Your husband has a right to enjoy his home, and his marriage, in peace.
I’m sure he is worried about the stress all this is causing you.
Use this current crisis as an opportunity for change.
I cared for my mum for many years, she was 6 miles away from me. In the end she was so frail that we both recognised residential care was the only remaining option.
Apologies for the exceptionally late response to your message, it’s been very up and down for the past twelve months and my head’s been in a bit of a spin. We managed really well with the DVT treatment, and things were going along fine until she went into hospital at the end of this August with severe nausea and multiple seizures. The doctors managed to get the seizures under control with a change in her medication, but she’s left feeling sick most days and there’s nothing wrong internally so they just sent her home with more anti-nausea medication.
Indeed I’ve been thinking around how to get mum cared for and take some of the responsibility taken off my shoulders. To be fair, she would be willing to go into residential care but we cannot afford it. She has a couple of hundred pounds in the bank and we rent privately, so no home to sell. I don’t earn enough to pay several thousand pounds worth of fees a month myself. They would have to foot the bill for the lot and I can’t see the local council doing that.
She had an assessment six years ago and was told she was too fit and able to be taken into care, but they’d send carers in four times day. She became so distressed by this that she took an overdose and that’s how she ended up living with me.
Any assessment for residential or domiciliary care ONLY takes into consideration the financial situation of the person concerned. If he/she has under £23,000 in savings, then the council will pay some or all of mum’s care costs.
If they were offering 4 visits a day, that indicates a very high level of care needs.
Also, have a look at NHS Continuing Healthcare Checklist Assessment - Google will find it for you. If mum qualifies all care would be totally free.
Is mum currently claiming Attendance Allowance?
Are you currently having carers to the house?
The hospital should have
Assessed mum for CHC before she was discharge AND
Arranged 6 weeks FREE “Reablement Care” and
Assessed your ability to care.
Assessed how suitable you home was for care and arranged any aids required before discharge.
We haven’t looked into claiming anything. Mum gets a widow’s pension and contributes a good amount towards our rent as we have had to move into a larger house for her comfort. We’re not financially worse off for having her with us, so it hasn’t occurred to us to claim for anything.
No, no carers come in. Mum’s needs are about 90% emotional and mental rather than physical, she mostly sorts herself out and on a good day can do her own washing. The main issue is she frequently feels very sick. If it doesn’t go away she calls for me to help her in case she’s going to have a seizure. This used to be a couple of times a year but is about once a week now though she hasn’t had a seizure since leaving hospital in early September. She cries a lot for no real reason (had a dementia test while in hospital and that was ruled out) and has always been rather emotional about things. When her nausea is really bad she says she wants to die and has a history of suicide attempts so I don’t take her words lightly.
I’m pretty sure mum had a CHC assessment when she was living by herself. A social worker and a doctor came and saw her together while I was there and they said she didn’t qualify for residential care but she could have carers come in and see her four times a day. It felt very much like the doctor was passing the ball to the social worker as mum was in a terrible state when they saw her.
Nothing at all from the hospital. She was in for a week with me visiting every other day. I went in one morning and the ward sister just said I could take her home and gave me her discharge notes and some new medication. They asked whether I cared for her and when I affirmed that they seemed happy for her to go.
I’m absolutely dismayed that no one has ensured mum is getting Attendance Allowance. Please ensure mum claims it.
If you don’t have Power of Attorney, you can do it for mum using the DWP Appointee Scheme. Easy to apply for.
Money doesn’t solve anything but makes life easier. Paying for a tumble dryer, dishwasher, efficient washing machine, a trip out for everyone, or having enough money left over so you can have a night off from cooking.