Caring for elderly parents? Pop in for support and a rant

[thesandwich]

Pace yourself, it's a marathon not a sprint!

This is a safe place to offload- don't be embarrassed about how you feel. No judgement here...

There are lovely people here with practical experience of some of the issues which crop up who'll share their hard won knowledge!

Thanks for doing the new thread

This looks like the perfect spot for me to get help! Please share with me your wisdom and advice. Here are the facts:

FIL age 92. Still lives at home but we are nearest family and we are 100 miles away.

MIL died last year. She had severe MH issues and was in hospital for many years before she died. FIL visited every day.

FIL is mentally alert but has a mobility issue so rarely goes out the house. Can get about the house and can self care. Has 2 women (sisters) who he pays to clean the house and take him shopping.

He doesn't really eat well. SIL filled the freezer with home cooked food in the summer and it hasn't been touched. When DH visits and takes him out he eats well. I think he can't be bothered cooking rather than unable to cook.

We had a message this morning form his neighbour to say she thought he had been taken to hospital last night - ambulance at house. Called the hospital and he is there in a general assessment unit. Will get more info later once ward rounds are done.

He was in hospital a few times in early summer. He was having palpitations/trouble breathing. Nothing found. He is physically healthy. I suspect it will be the same this time.

We would like him to move closer to us and he has nominally agreed this would be good but i reckon he just won't progress it unless we do everything. DH has a very intense job - he does not have time or emotional headspace for this.

What do we do? How can we help? I called SW last time and he doesn't met the criteria for assessment. They spoke to him and he agreed to meals on wheels but did not send back the forms.

Sorry that was long. If you have questions i will do my best to answer them. I would really appreciate your advice. Thanks.

At 92 he is unlikely to agree to a move and, as he has sisters close by, it seems sensible to stay where he is. You will here this from many people on this thread ‘this is a problem with no solution’.

SS and LAs won’t get involved until a crisis happens. A fall or an illness where he is admitted to hospital and then a diagnosis that he cannot go home. This last decision will only happen as a very last resort. Normally he will be sent home, he will promise to have meals and wheels or anyone other service provided and then just won’t cooperate once he is home.

You meanwhile are left in a state of limbo. You cannot help, you feel guilty but you cannot do for him the thing that you feel is in his best interest. It is a waiting game and the best support you will get is in this thread. For me it was a life saver, with both emotional and practical support.

I am sorry that I was not more positive about your situation, but I posted honesty from personal experience .

You will hear this, that should read.

He doesn't have a sister close by. He has no one. DHs sister was visiting in the summer. She lives abroad.

Have you organised Power of Attorney?
It’s a good idea to have it in place.

Power of Attorney is all sorted.

From what he has hinted at he would like to be living somewhere they fed him and he could have some social aspect but he really does not meet the criteria for that.

We have room for him in our house but I am reluctant. I know that makes me sound like a terrible DIL but I really don't know him well despite having been with DH for over 30 years! He is a very insular man who doesn't share of himself easily. I don't work so I would be responsible for him all day as DH works long hours. I am not sure I have it in me. Does that make me horrible?

Who are the two sisters who clean for him, then? Or do you mean two local women who happen to be sisters?

There are some similarities here with my dad's situation earlier this summer, except one of us (my sister) lives nearby and my brother and I did as much as we could, either remotely (brother) or every weekend/holiday (me).
We set up everything like meals on wheels/ carers visiting for him (with his input, as he was fiercely independent at the time, although this rapidly changed). We arranged for Occupational Health to visit to see what gadgets would help him stay at home longer (hand rails/ bed risers/ lift-up recliner) but actually she said we'd already got everything she was going to suggest.
Then, out of nowhere, he said to us he didn't want to live alone anymore (he'd had a collapse and was on the floor for a while, which scared him, I think) so he asked us to help him find a residential care home.
He moved in within a week and it's been incredible. We've got him back again and he's very happy.

If you've ticked the right box, Financial PoA can be used while he still has capacity, Health and Welfare PoA can't be used till he's lost capacity. You'll have seen the PoA guidance which makes it very clear that "capacity" also includes the capacity to make bad decisions. And someone else on this board made a sensible comment on the lines of "Sometimes the control to make things much worse is preferable to not having any control". Doesn't help in practical terms but maybe will help you deal with the inevitable feelings of guilt.

My DF doesn't eat well, daily empties the same combination of tinned ingredients into the microwave, limits what he will eat from a combination of faddiness and worry about additives, therefore refuses most attempts to help. What we've managed to do is get a referral to a nutritionist who wasn't much help, but did persuade him that it was OK to go back to full fat milk, and butter instead of ultra low fat marg. He'll eat "treats" that don't need cooking - scones, cakes, basically. I remind myself that a cake has got eggs in and is therefore not entirely junk. Easy for me as I live nearby - is it possible to get things delivered?

At 92, it's probably going to be too much for him to arrange a move closer. Decision making gets much more daunting as you get older.

From what he has hinted at he would like to be living somewhere they fed him and he could have some social aspect but he really does not meet the criteria for that. I presume he wouldn't be a self payer? If he owns his house he could sell and buy a flat in sheltered housing. But the finance may not stack up - the flats are expensive for what they are, and you have to pay a lot for the service charges and support. Resale can be hard, and it doesn't seem sensible to buy a property whose disposal will be difficult for possibly 5 years occupation. I'm not sure rented sheltered housing exists in the private sector.

Don't move him in with you. He will go downhill, and you will be sole carer. There's a huge difference between looking after someone for 8 hours a days, and looking after someone all day, and never having guaranteed rest time. Once he's in your home, SS with feel he's sorted, and he will drop down the priority list. They are resourced to cope with crises and not much more.

Yes, sorry Apollo, I made an assumption about funding there. My dad self-funds his own care.

It is local sisters who are paid come in, not his sisters. His sister is dead.

Update on hospital - he has a UTI. He was having issues last night and pressed his panic alarm which alerted his neighbour. They are keeping him own at least overnight and the nurse has said they are referring for an assessment which is a huge relief. We may need to get careers in daily. I have heard some scare stories about private careers though!

We are heading down shortly.

Apollo The assessment is good news, try to be there for that. These UTIs really are a bugger.

Our experience of private carers, for both my dad and previously my mum in her final stages, was very positive. They were lovely. The worrying stories I've heard have been more to do with the public sector, where timings for visits are so rushed that little can be done to help. However, I also know that there must be good and less good across the board. And I think a lot of carers work in both sectors.

You most definitely are not horrible for not wanting him in your own home. It is incredibly hard physical and mental work and once you do it, the powers that be wash their hands of you.

Currently my DDs MiL is being cared for at home by her FiL. He is washing clothes and sheets every day, cannot go out unless the carer is there. He has gone from a fit and active man to a wreck. You can on,y do what you can. It is particularly hard when you are not nearby.

Agree with those saying SS will sniff out an actively supportive family
from 20 paces and you'll be effectively left to it.
That's all very well, u til it becomes too much. I have a friend who is currently caring for her terminally ill mother. She and her siblings are pretty much doing palliative care and are just not qualified to know what they're doing. They're now asking for support, but it won't come quickly enough.

Is there a local day centre that he could go to a couple of times a week and get some company and a good lunch. Many will collect people but it sounds like your FIL might be able to cope with a prebooked taxi if necessary? Age Concern UK website is good for advice on what local facilities are available.

Argh buggeration! Think Dad has a uti just waiting for ooh gp.

Well, looking on the bright side, thigh, at least a UTI is treatable. My dad had an impacted bowel, with awful constipation, which can have the same effect of confusion. We'd thought he was seriously losing his marbles, but once the ABs kicked in, he got back to his old self quite quickly.

deargod you're right, will watch out for that one in future.

Well the ooh gp has been, tested the urine i collected earlier, it is a uti. He had antibiotics in his dr bag and gave them to Dad on the spot. Isn't that fab? I was expecting to drive across London to the ooh chemist. Lots of bridge closures and traffic today due to some demonstrations.

RE carers. I've had a couple of elderly neighbours in my block of flats, they've had private carers who have been really good. I had tea with the neighbors every weekend when they reached that stage so I saw the carers for a couple of hours and they seemed good. Certainly the neighbors had no complaints.

@thighofrelief hope the infection is sorted quickly

thank you thesandwich for the new thread.
thigh hope the anti biopics (!) kick in quickly.
apollo welcome and sorry you have to join us... I second do NOT take him into your home, it is not unkind or uncaring not to do that, but as soon as SS know you might be considering it they will scarper. (I have been 'the daughter round the corner' and you need to be hard as nails saying that you are not prepared or available to do anything.) good luck.