Two parents, still with capacity but physically almost bed bound

[Iwonderwhenwewander]

I wondered if anyone out there could offer me words of strength, and thoughts on boundary setting! They are both in an acceptable but not perfect care home, about 3.5 hours from where I live (only child, 2 dogs widowed 2 years ago). They are both desperately unhappy and in their mid 90s. My father with advanced Parkinsons, lucid at times but often not, but bed/chair bound for 2 years talks about going home with a live in carer - missing the fact we would need a team of at least 4 carers and many alterations to the house. My mother mentally all there but now almost unable to move independently and now beginning to realise she is not getting home and getting more and more tearful when I visit.
My current strategy is to visit for a few days every 10 days or so, tell my father that why doesn’t he make plans and I’ll talk about it ‘next time’ and to try to convince my mother that it would make sense for them to move to a home 15 minutes from me, where at least I can pop in nearly daily.

I’m currently staring into a coffee at a roadside Starbucks after getting up at 5.30 (so I can get a full ish day at home before weekend visitors at home ) and am feeling absolutely drained, but wondering if I am being reasonable in my boundaries.

I know there are no good answers but any thoughts?

You're being reasonable. I did the same and kept talking about a move 'soon', 'in the next few weeks'. It's not feasible for them to go home. And sadly, people in this situation are likely to be unhappy and no big transformation in that is really possible.

My main thought is that it sounds like you are doing really well in a very tough situation.
I am not sure I would go for a few days at a time?
Do they want to move closer to you or would they be equally unhappy? A move would be tough.

Oh bless you that sounds really hard. Could you visit local care homes yourself and get video of the one you’d like them to consider and quotes or info to see if it was a feasible option? Then sort of present it as a “dad how about you guys move here while we figure out whether a move home is possible”? Some care homes have differing levels of care within the same home and are used for assessment beds by healthcare/LA collabs so somewhere like that might help your dad see via formal assessment that he isn’t for for being at home.

I think your strategy with your Dad is perfect. Agree and divert to a different subject.

I also wonder if a stranger would think he has as much capacity as you do? Your title says he has capacity, post that he is mainly not lucid and even when 'lucid' he has no concept of his care needs.

Having typed this have started to wonder about your mum as well- has she seen the GP about her mood and memory?

Big hugs and enjoy your Starbucks.

Big sympathies. It sounds so hard, and you're totally not being unreasonable. The whole day visiting sounds absolutely draining, for you and them, I know it's mad to drive all that way and then not spend as much time as possible with them but I wonder if you do need to go to more of a several short visits a day system. Making a move at their ages will be hard but if possible and they'd agree it would certainly make life easier. I take it they're neither of them fit enough that you could take one or the other out and about in a wheelchair when you visit?

I think your Dad probably needs to hold onto this idea of going home to have some hope/positivity in his otherwise pretty miserable situation, agree it's obviously not realistic and he almost certainly doesn't have the capacity to even make that choice any more, but I think you're quite right not to argue with him or shut it down - quite possible even if you do have it out with him he'll have forgotten by the next time you visit or just be left with the lingering feelings of anger or resentment, so personally without making promises I can't keep I'd play along with it being something he's working towards.

Moving closer to you would be good for you but they would be moving away from their friends. Do any friends visit them where they are now? If so that is important.

I think you are doing your best and need to be told that.

The big issue is age, extremely long age. They are physically tired out and there's nothing that can be done to change that. There is no answer to this as what's making them unhappy is this extreme age and the loss of life they had.

As younger adults we heal when we get ill.

There's no healing possible here. That's the greatest loss... It'll never get better no matter what you do.

My mum ran herself ragged moving care homes for her parents. In the end, after years in a number of them, when the old person was asked which was the best, it turned out the only thing that mattered to them was if they got choc chunk biscuits in the afternoon or the 'cheap' pink wafers... That was their prime focus.

All that stress, tears over homes... But the only thing the grandparents wirried about was biscuits as to their quality of life.

Most expensive biscuits in history as it turned out...

You have my total sympathy - and I get it completely.

My DH is an only child and his widowed mother in her late 80s kept having falls, resulting in hospitalisation. We’re talking about getting a call at least one a week about an incident.

The hospital were obviously keen to discharge her as soon as possible, and it was so obvious from all the issues she wasn’t coping at all at home and couldn’t or wouldn’t acknowledge this, but the hospital social worker insisted she went back to her house, “as it was her wish”

Live in care was arranged, but the carers couldn’t cope as MIL would get up regularly in the night because she couldn’t sleep or had wet her bed - sometimes 2/3 times a night. Consequently, the carers couldn’t get any rest because they needed to supervise or clean up after her, so they ended up exhausted. When they were supposed to have their break during the day, despite them ensuring beforehand she had been to the toilet and had been fed etc, she wouldn’t leave them alone and still expected them to talk to her.

We repeatedly told the SW that it wasn’t working at home and that the fact that her carers were permanently tired out was a major danger, but he still insisted she had mental capacity, therefore she had to remain there, despite us being repeatedly contacted by her carers over a catalogue of issues. We eventually got a break when the original SW went on holiday and we got his cover in to see first hand what exactly was going on and he agreed totally with us!

We “sold” the care home to MIL by telling her it was for two weeks respite care and if she wasn’t happy, we would look again at options. After the two weeks, she loved the CH. She had company with different ages and faces rather than the very young women she had nothing in common with, that had been sent to her house. There were activities, entertainment and most importantly, the facilities to cope with her physical needs that no amount of equipment in her home could compensate for.

Until MIL was settled in the CH, we didn’t realise the stress and pressure on us both as well. She would ring us in the very early hours about trivial things, that were obviously very important to her at the time, but could have waited until the morning, so it’s also vitally important you look after yourself too because in my experience, if you take on the responsibility, the authorities view the problem as solved and off their books. Meanwhile you end up silently cracking under the pressure, so now is the time to be selfish and push back.

I apologise for the long post, but it’s just to assure you I know exactly what it’s like and the sense of duty we are all under with our parents.

I’m sorry I have no answers but just want to say I wish I could help with suggestions…this must be so difficult for you, stay strong & remember you’re doing your best in this difficult situation.

It sounds like you are making the best of an extremely difficult situation.
My dad (late 90s, dementia, divorced from my mother so my responsibility) took up a lot of emotional energy over a long period of time until he finally moved into a carehome round the corner from where I live. The situation for everyone involved immediately massively improved. Their friends will fall away - they are all elderly too and will also be making decisions about whether to move. A care home near you means you can stick more easily to your routines and commitments, and there’s more balance. (And they will make friends in a good carehome wherever they are.)
Looking back, I wish I’d made the decision years ago. It would have saved hours of driving and stressful long distance emergency visits. These days, I visit my dad more often and for shorter visits - something he prefers. You could be facing years and years of this. Plan accordingly. Good luck.

Your strategy sounds very sensible.

The only thing I'd add - subject to finances, and depending on exactly why they are bedbound - is physio to improve their mobility. We knew with my dad there was virtually no chance it would get him walking again, but it gave him a focus. It made him more hopeful because he could see some.progress. And it gave him more independence within the home once he could move his wheelchair himself. You'd tthen ave an interim goal of 'when you're more mobile we can ask the physio' rather than the only goal being 'back home'.

Thank you all for your answers and support. It is so easy to second guess yourself and let the guilt wander in. I absolutely get the point that a move would be major, they don’t have many friends that call in regularly. We have a couple of‘ helpers’ who call in to them almost daily to bring in food/chocolate and toiletries, chat and help them feel less isolated. I think the biggest anchor they have now is health care, the GP they know, specialists for their various ailments and a physio (who is not much help, but as a poster above says provides some focus).

I am encouraged by a chance conversation with a neighbour just now about a relative going in for respite care at my local care home. I hope to get some real information about how it is (the propaganda is always magnificent, but the reality at 2 am is different).

Onwards and resolutely cheerful in the face of misery…….

I don’t think they need to move anywhere, they are being looked after 24/7 and have each other.

Carry on doing what you are doing but less so, you must look after yourself.

This is a good point about the biscuits. I was going to post and say is there anything that might make them more comfortable or happier where they are? Photos up, familiar activities, music playing, furniture from home, favourite foods, being taken outside, a glass of wine in the evenings etc?

I am another who is very impressed with how much you are doing for them.

I do wonder if they express all their unhappiness to you and then potter along OK until your next visit? I would cautiously suggest you see what the care staff say about how they are - cautious because I was super sensitive to every one of the very few words I ever got from the care staff at DM’s home and if I thought they were critical of me or the situation it broke me every time.

The second home team where my mother was were certain that moving her nearer to me would kill her and that nobody could look after her like them. She lived another 18 months, and although it was far from perfect, the reduction in my stress levels from the much reduced travel time was worth SO much. If you think it would help YOU, then do it.

I really feel for you. Regardless of what you do it’s never going to be enough. It’s like they are clutching onto their old life and how wonderful it was. Same with my late Mum.

Today is the best they will ever be. Leave them be. Sometimes, as modern medicine pushes us past long past our natural ‘sell by’ date, we have to accept good enough has to do.

Beautifully said.

It’s an arduous journey for you and to be faced with such misery at the end of it, I really feel for you. But I think it would be a big operation to move them into another care home - unless there’s one close to you that is amazing.

if they dont like it where they are then a move to nearer you wont be any worse? done along the lines of “a break for respite care for a few weeks so we can be closer together” might be the best way?