Really struggling right now

I care for two elderly parents, my Dad has advanced dementia and has just gone into respite care, my Mum has been his main carer but struggling with physical pain due to caring for him and has had no break from caring since March 2020. Watching the toll on her and dealing with her being less than good mentally through lack of rest has been very trying. The last week having to spend so much time looking after him and trying to get him into respite care has been draining. I’m now worried that if Mum doesn’t agree to him staying in care that I won’t be able to cope if he comes out again.

Ideally, I’d like someone to talk to one-to-one locally, but there just aren’t services in my area that do that. Really frustrating this week “Mental Health Week” lots of charities posting about how important mental health is, none doing anything to actually help those struggling.

Hi Marralass,

Welcome to the forum. Sorry to hear you’re having a difficult time.

You might be interested in the online weekly meet ups for carers run by Carers UK. You can find information on how to register to our online meetups at the following pages:

Care for a Cuppa: Online meetups | Carers UK - the next online meet up is Tuesday 17th May (a week today). This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.

Share and Learn: Share and Learn | Carers UK - these sessions range from creative writing activities to beginners Latin dance sessions.

Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (

They also provide information and guidance to unpaid carers. This covers a range of subjects including:

Benefits and financial support
Your rights as a carer in the workplace
Carers’ assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions.

Really sorry to hear that you are struggling. Did you arrange respite care through social services? If so it is worth telling them that you and your Mum are unable to cope at home without additional support. What would your Mum like to happen? Would she prefer he stay in a care home or would she like carers coming in. If he as advanced dementia a care home is likely to be needed at some point, so maybe now is a good time for that to happen. When I was in a similar position caring for both parents I had to refuse Dad coming home. A horrible thing to do, but it just wasn’t possible to care for him at home anymore.

Best of luck. It is a horrible hard situation to be in.

I’ll look into that, it seems it might help.

We already have carers coming in a couple of times a day to change him. But because they don’t come at a precise time it would be difficult for his nightly change and as he gets up when he feels like it in the morning, one wouldn’t work for that time either. But it is more the constant stress of having to watch out for him every time he gets up to go to the loo or explore the house. Even if I’m there I feel my Mum doesn’t fully relax, I also feel she doesn’t get a decent sleep as he is up and about at night too. If daycare was available that would be a help, but there is none for our area. I think he needs to be in a care home, but Mum misses him. When it comes down to it, he isn’t going to last forever and perhaps she needs to get used to missing him.

It sounds really tough for you at the moment. Having looked after my dad who had Alzheimers and my disabled mum, I really undersgtand the dilemma that you are facing. If you can’t get him into a care home as you state then the next best thing which I can see you’ve looked at, is to increase the anmoutn of hours the carers support him. It might not work for you but what I did is shorten the time and increase the frequency. Some care companies charge per half hour. Another thing to look at is to see if you have an Age Conern or similar organisation in your area that might give some support to your mum and dad.

Social service will only pay for carers to come in to do specific work, not just to supervise him. But they can be problematic too, don’t keep to a strict schedule, lecture my Mum on things they think she should do that just don’t work, like getting him to use a commode which he just won’t do. Some of the ones we get don’t even seem to have any understanding of dementia. We can have someone for an hour a week to sit with him, but that is it.
I don’t see any way around dealing with his occasional falls, needing changed between carer visits etc. without family doing it and it is too much of a strain on all of us.
Age Concern in this area are utterly useless, they have no advisers any more, it just seems to have become a business selling aids for elderly people.

Dear Marralass
When my 94 year old Mum went into a Care home it happened very fast because she had pneumonia and went into hospital, then rehab for many weeks. It was obvious that we had no other option than to persuade to go into a care home which she realised was inevitable. We would have had to live in her house with her as fultime care would have been too expensive and social services would only provide help three times a day. Sometimes something happens which pushes you into making this decision. It would be sad if your Mum waits until this point because it gives less time to look around at places and choose a good one. You become reactive rather than proactive. If you start to look around for a Care home that would suit him and your Mum you will be prepared for what may be inevitable in the near future. It seems that your Mum can’t accept the idea of him going in to a home. If she chooses one she likes and would enjoy visiting she would benefit from seeing and talking to people there who would give her emotional support throughout her husbands life up until the end. You of course would enjoy a better relationship with both your parents because you would be less stressed and under less pressure. I found it worked really well when Mum went into the home. I took her out, went there regularly and had lots of cups of tea with her , four times a week, sometimes more. Our relationship improved and we talked to new people together. If you could explain the benefits to your Mum and maybe take her to see a few places she may come round to the idea of your Dad going there eventually. I had to visit and choose a home really fast. Luckily it was a nice one and worked well. It is really hard and I feel for you. I do hope you find a way forward in this difficult situation. Think about how much caring you are prepared to do in the future as your Mum will need more help with him as time goes on. I hope it all works out for you.

It just isn’t possible to look around a care home right now with the covid regulations. If he back is good enough she’ll get to visit him next week. The problem isn’t so much whether the place is nice, it is a question of whether he’ll settle there and her missing him. It sounds like he is settling in well, so that might tip the balance. I think our situation is different than yours because Mum has been living with him for decades, she is used to having him around even if he isn’t exactly there in a mental sense.
It is looking like she is coming around to the idea of him staying in, so that is hopeful. Also I am now getting someone to talk to, first phone call this morning, help I could have done with months ago, there is so little help out there for carers.

I checked one out with my wife a couple of weeks ago: we both had to do a Covid test (you can pick these up for free at many places) the day before and take along the results.

However much you and mum want to have him back, there is nothing you can do to stop the dementia getting worse. IF he comes back, it may only be for a short time until something else happens that make it impossible for him to stay home, again.
I know how difficult this all is, a number of our family members have ended up in care due to dementia.
Try to think ahead, is it fair for him to yo yo between home and somewhere else, repeatedly? Or is it better for him to be in a care home very near to mum so she can visit whenever she wants, knowing he is safe and well looked after?
You need to first find out where the nearest EMI homes (Elderly Mentally Infirm) are, by looking at the Care Quality Commission website. Then you need to find out how much they charge, how much dad could afford, whether they accept Social Services patients etc. All this can be done before any visits.
I know you don’t want to do this. You know that it needs to be done.
If you don’t, he may end up like my mum in law, needing an emergency place 15 miles away from home.
If father in law had followed my advice, she could have been half a mile away!