Forced into a care home

Our situation has changed somewhat in the last few weeks sadly. A quick precis of our initial situation - Dad was living alone and managing okay apart from not being able to drive but he suddenly went blind at the end of November and ended up in hospital because nobody knew why. Eventually he came out at New Year and I had managed to secure a live-in carer through NHS Reablement for 4 weeks while he adjusted to living without his sight (as well as already being pretty much deaf, diabetic, Parkinsons, vascular issues, heart issues etc) as he was unable to do anything for himself whatsoever. Despite my pleas not to leave things to the last minute, the social worker didn’t come out to do an assessment until the end of week 3. The carer knew she was onto an easy ride and suggested that Dad shouldn’t be left alone but we knew that in between ‘feeding & weeding’ he would be safe although overnight was a bit questionable. Dad insisted he’d be fine, he wanted the carer gone (she was awful and unsafe and we changed to another carer eventually), and he wanted to stay in his own home. We agreed to my and my brother doing the weekdays and the SW would source respite care for holidays and drop in care for the weekends. They assessed him as needing 4 visits of 30-60 minutes but we were clear that these would need to be time specific because of his Parkinsons medication. They said we would need to start paying for the carer as he was self funding but I fought against it and we got 2.5 weeks extra while they searched for weekend care and we put in various tech to keep Dad safe.

The falls alarm and bed monitor was put in fairly quickly and we got internet in and put a camera upstairs and down, plus an Alexa so that Dad could make contact if he needed to and we could help someone open his door remotely. However the internet in his area is pretty sketchy and it turns out it’s not totally reliable but we’ve done what we can. My brother has turned out to be as useless as I suspected and while I’m rushing around sorting admin, meds, drs, liaising with the many people involved in Dad’s care etc, he’s ironing boxer shorts & eating all Dad’s biscuits. The biggest stumbling block though is lack of carers. The SW hasn’t been able to source ANY weekend availability, let alone time specific. I also suggested he needs another visit because he actually has 6 different time slots of medication, which of course can’t be done by the council as they will refuse anything more than 4. He ideally needs meds before 9am and after 9pm and most agencies won’t work past 9pm. The only way to achieve this is with live in care, which they won’t fund as he doesn’t need it. The SW said he can do what he likes because he’s self funding but I kept asking what would happen in 4-5 months when he comes back to them for financial assistance. She said he’d need another assessment and if they agreed that he needed more than 4 visits then he would likely be advised to go into a care home because it would be cheaper than a live in carer. 4 weeks later and neither they, nor we, can source time specific care at the weekend even if we paid for it during the week too. I ended up having to have Dad sleep on our sofa for 2 nights during the storms in case we couldn’t get to him. My brother keeps letting me down with changes to his ‘shifts’ and won’t do anything without getting paid for it. In the end I fell apart and Dad demanded we find a care home for him. We can’t manage weekends as well as week days when he needs so many visits and I live 40 minutes away with 2 children with extra needs. We’ve got no choice but to find a care home for him which means having to sell his house and he’s absolutely devastated because he knows it is likely that we will be left with no inheritance. I feel like we’ve been forced into this situation, both by delays in the NHS which led to his sensory issues, and now with the lack of support from social care. He feels like he has nothing to live for and he’s being a burden, while I feel like I’ve let him down because he wanted to stay in his own home. My brother is pee’d off because he won’t get a proper job and so he loses out on the money (which is the only good thing about this). This was Dad’s decision as he was worried about the impact it would have on us (and to be fair was worried about being stranded if one of us… my brother… didn’t turn up), but I’m so angry and feeling so guilty too.

Sorry for the rant. It’s small fry compared to most of you I know xx

I am sorry to read all the issues you have been experiencing. But sadly which happens often options of home care are no longer viable. I wish we would provide information to individuals why things are not always possible. I am a great believe in forward planning, Like health prevention is better than cure etc. I don’t think you should see it as being forced into a care home. Circumstances of most situations have to be realistic. Carers are very much in short supply and it’s going to get much worse. And people are going to have to consider care outside of their home. I have this with my parents in law where no home care is provided where they live (they want to remain there). And they have been told and put in their care plans only option with be a care home. The move to a care home at this point is a very sensible move. Yes, it will be hard but in the longer term you will begin to see it was the right action.

It’s all so hideous. I went to see my first care home this morning and could hardly speak to the nurse showing me around because I was so tearful. I haven’t set foot in a care home for nearly 35 years and I so hoped things would be very different. The one I went to looked lovely on the internet but it felt so cramped and over-stuffed. I’ve been warned away from the “pretty petticoat, dirty knickers” homes and there didn’t seem to be anything ‘wrong’ with the care but our hallway is bigger than most of the rooms I walked past (I couldn’t go inside any of them). The activities ‘person’ comes in 4 days a week and I know there were other things mentioned but I couldn’t get past balloon animals. My dad would be like Katherine Tate’s Nan character if someone offered him a balloon animal to make.

When I got back to Dad the lady from the EMI team was there doing a memory test and she was clearly worried that Dad had been talked into it and that it wasn’t necessary. I agreed it wasn’t in theory but that there was no other option and it was what he wanted. He got really cross and wanted us to hurry up and find him somewhere but now I feel like I’m back to square one because the EMI nurse as put doubts in my head!

In a way I was protected from the visiting and choosing because Mum went into a care home straight from hospital in the midst of a covid lockdown. But it must be heartbreaking.

That said, I can’t help thinking what my Mum’s reaction to the balloon animals would be, especially if someone handed her a balloon to blow up. The mind genuinely boggled at that one. Knowing Mum, who has always had a mucky sense of humour, she’d have said something…earthy.

There are minimum standards for rooms, but yes - they are generally pretty small, especially in purpose-built homes. Where they’ve taken over a big older building, the rooms can be a bit better, but then the building may have other limitations to overcome, like steps in strange places.

But the real problem here is that you’re feeling forced into a situation that none of you really wants. Your Dad is doing it because you and your brother were struggling to manage his care…he’s trying to protect you. And that’s ok: the reality of caring is always more difficult than we think it will be, and that may be why your brother was struggling and leaving most of it to you. Caring is physically and emotionally tough. It’s absolutely the hardest thing I’ve ever had to do.

Nothing I can say or do to help you with this except that this will get easier, over time. Take care of yourself.

The most important thing is that dad NEEDS certain care, and a residential home is, at the moment, the only place he can get it. No one wants to go into a home, but needs have to take priority. You could regard it as a temporary measure, and try to find sustainable care for him at home. I think the charging system may be different. Contact the CUK helpline for advice, and also about funding the care, putting a charge on the house rather than selling it. I had to empty and sell my mum’s house when she was in a home, it was very, very difficult.

I SO feel for you and your Dad Henry’s Cat. I looked at 14 homes before I found the right home for my Mum and it is tiring and depressing. Your poor Dad had a lot more needs than my Mum though. Is there any way you could get a live in carer for him? A very old friend of my Mum’s had a very nice live-in carer and when she went off for two weeks someone else came in who wasn’t as good but overall the lady was able to stay in her own home which was what she wanted.

That wasn’t an option for my Mum because she had hardly any money in the bank and her house was her only asset.

My mum also would have hated balloons so I thought. But…… in the care home she carved her first pumpkin at 93. Looked forward the activity coordinator visit. I was amazed

In the assessment centre my husband made me a trinket box. It was so childlike I was in bits. Fortunately he was asleep when I broke down. Still have it, but it’s hidden as it still breaks my heart. It’s not the sort of thing he would have ever considered doing, especially adding sparkly bits to it. Waved a flag when Harry and Meghan married. Unheard of !

One of the things I’ve learned through all this is that people do / say / think unexpectedly! I actually asked him about the balloon animals the other day and he didn’t have a clue what I was on about!

I asked for recommendations on a Facebook group local to him and there were lots of recommendations for 3 homes in particular. One was a brand new, swanky 5* Barchester with a 5* price tag, no thank you. The other two happened to be owned by the same local people, not a chain. The clear winner of the two is slightly further away and bigger but I had happened to see the other one yesterday afternoon which was reassuring. It was much clearer of clutter (and hazards), no residents wandering aimlessly around like an asylum (despite this one being a nursing home and the previous one a care home), the rooms all seemed a bit lighter and they actually had a room that I could go into. The deputy manager and I had a good chat and I didn’t feel like he was doing an estate agent tour (this is the bathroom, this is the dining room, thanks bye), and the residents all looked happy (I told my dad they might have all been drugged for the occasion but we’ll go anywhere that does happy drugs thank you very much). The staff all said a smiley hello (again, see drugging point above!) and they have activities 6 days a week plus people who come in to do music etc and movement classes. We’re going together for a visit tomorrow and so he can chat to the residents and if he likes it he can start a trial moving in on Friday! He was over the moon when I told him and later on he actually had a huge belly laugh about something and we’ve not seen that since he went blind. My brother was on duty today and he called me to say how much Dad was buzzing. I think in part, he feels like it is getting sorted and little snippets have been coming out gradually about him being scared one of us wouldn’t turn up, or something happening when we weren’t around etc. He had a couple of falls at my house last week and I think that’s put the tin lid on it for him. That and the fact that it’s the cheapest home we could find (which is odd for a nursing home so close to the sea!) I keep looking for the ‘but’ and not finding it. They don’t have a waiting list this week but if Dad goes in they will have as someone else is visiting at the end of the week. It’s got consistently good CQC ratings. Everything checks out apart from the price / lack of waiting list. They only have 3 showers / baths between the 20 residents in the block without en-suite showers but they said most of the residents prefer a strip wash anyway, it’s more our generation that showers daily, and especially so when they’re just sitting in a chair most of the day. It felt a nice place, he seems happy so far, but how do you really know??

I have helped many people find a residential home, and came to the conclusion that it was like choosing a house to live in, you instantly got the “I don’t like this” feeling, or “this is lovely”.

The home you describe sounds somewhere I would like to live.
I have always used the “would I like to live here?” principle.
Nowhere is perfect, if I could have my time again I’d have knocked down different walls in my cottage, but it’s been a cosy home for us for 50 years. I don’t have all brand new carpets in my place, or matching furniture that’s not important to me, people and relationships are far more important.

In my mum’s home, I always found it reassuring that all the staff smiled and said Hello to me in the corridor, they all knew whose daughter I was.
I was always welcomed if I called in at the Nurses Station, when mum was inevitably nearing the end of her life, they were kind and honest about how she was.
I hope dad likes it, I know what a huge relief it was when my mum moved into the nursing home. We went back to our old happy relationship of days gone by, I wasn’t just the extra pair of hands to do all the jobs no one else would.