Any other carers of parents-in-law out there?

[gardeningmama]

Not sure where best to post this. I am the main day to day carer of my father-in-law. He is elderly, widowed, bit of a recluse, is basically fit but not active, has all his marbles but I suspect is on the Aspergers Spectrum (identified before old age really set in but not officially diagnosed).

Dh and I encouraged him to move near us 8 or so years ago when he was widowed as eldest son had nothing to do with him at the time and middle son lives in Canada. Dh and I have produced the only grandchildren!

"Care" at present consists of regular phone calls, dropping by for cups of tea, being on call to change light bulbs and do other domestic tasks, help with computer technology, arrange for cleaners, gardeners, basically pave the way for and deal with "the outside world" which he struggles to understand at times - not in a dementia sort of way but more his AS.

The main thing is that I spend every Monday with him, doing the Tesco run, having a cup of coffee out and any other errands/library visit/art gallery visit (he's a painter) that he wants to do. I am his only regular companion and I am the one who takes him to the dentist/optician/doctor etc. We live in the middle of nowhere and everything involves a car ride.

Fil had a fall a few days ago and we are waiting results of an x-ray. He's ok but basically is saying he doesn't know how much longer he can carry on living and coping on his own. The doctor has booked him for ECG scan as Fil admitted he had in fact been falling quite a lot (every fortnight or so) for a while. News to us.

What I would love to hear from others is would I be wrong to expect or ask for some level of financial input from Fil on say a monthly basis to help cover petrol costs and my time? He is a difficult man, very intellectually needy and demanding and of course with AS has no inkling of the strain he puts on those around him. But he is a kind and lovely man and I don't begrudge helping him and I know he really appreciates my help and company. However, dh and I are struggling financially and I am not in a position to go out and get a well paid job. I am trying to get regular "casual" work to help ease the situation but I realise that Fil's needs are only going to get more demanding of my time. Would I be right to suggest he pays me for a 7 hour day once a week for instance? Any thoughts or suggestions would be much appreciated. Thanks.

By the way, I forgot to add that I am only too aware that there are many out there who have a far harder time than me as proper carers and I respect those people wholeheartedly. My situation I know is simple in comparison and takes relatively little of my time. Perhaps I should have added that my home life has its complications with my dh also being (unofficially diagnosed) on the AS spectrum and ensuing serious relationship/parenting stresses and difficulties and I have two dc (ds15 and dd11), one fairly needy (AS?) and both expressing typical teenage behaviour and one in middle of GCSE's. I guess I am feeling I have enough on my plate, and with financial worries, I just feel impotent to make any part of the equation better and sustainable.

Have you googled Attendance Allowance? I just did, but without going into ANY depth saw that you can claim £55 or £75 (ish) depending what level of care is required.

Teeny

gardeningmama - some practical points: A Social Services assessment might help you / FIL see what help he needs and depending on his income what help could be bought in particularly for everyday help as you say its only going to get worse over time. If they agree he has needs you could be paid as a Direct Payment rather than carers or a mixture of both. Also and the social workers will tell you this, has he applied for Attendance Allowance?
www.gov.uk/attendance-allowance/overview
My mum (92) has, at the moment mild dementia, is still in her own home with carers 4 times a day but we started with just one evening slot to make sure she ate but it has increased over the past 4 years. She didn't like the carers to begin but actually quite quickly began to enjoy their company, the good ones anyway!
If you have any other questions I'll try and help.

Ha great minds eh Teeny!

The issue with caring for someone else isn't how much time you put in, but how much time you put in compared to how much you actually have left at the end of the day.
So it's not the same to spend an hour a day with someone when you don't work and when you are working full time, 10 hours a day iyswim.

I think you need to discuss with your FIL what he would like to see hapening. Is he happy to have some carers going in? What sort of carers (SS and some privately run care at home companies are so far apart that you would think they do a different job altogether)? Does he only want family coming or does he want someone else?
And what about you? Are you happy to 'care' for him one day a week and be on call or is it already too much due to your own family circumstances? Would you cope with the added stress/needs?

Lots of questions but the reality is that you won't find 'one' answer, only one that fits you as a family.
If your FIL only wants you (and your DH?) as a carer, then some financial contribution from him looks OK to me, especially if doing that means you can't work full time as you would have wanted to for example.

If he has AS, then you might also see if he would be happy to cope with carers (different ones coming in the house, doing things in a different way) and if carers would be able to accommodate him/his needs too.

Thank you all. labels and teeny, the issue of carers coming in is difficult for the reason you touched upon labels, because he hates people coming into this house, even the cleaner who is the same person on a regular basis. I think he would find this stressful so at the moment we want to avoid it. We have spoken to Fil about care and as I say, we have guaged what his reactions might be, and he is determined never to go into a "home". So we are working on the principle that we will support him in his own house for as long as we can, all things considered.

I am going to take your advise and look into Attendence Allowance and a SS assessment as the next steps and have already agreed with Fil that I will spend some more time with him helping to sort out some of his extraneous "stuff", make his home more easy and comfy for him and give him some more of the type of companionship he wants. Sadly, the village voluntary companionship scheme is complete anathema to him!

Thanks again

Have you considering some sort of sheltered accomodation/ assisted living set-up? It would allow independence but with some professional support

The issue with caring for someone else isn't how much time you put in, but how much time you put in compared to how much you actually have left at the end of the day

I would add to that that it also depends on how much patience you have to spend days in the company of someone who, though you care for them deeply, probably aren't the most fun or rewarding person to visit.

Don't let guilt make you promise something that in the end has a detrimental effect on your health or wellbeing. You need to be fit and happy too to provide the care they want so set boundaries taking your feelings into consideration too.

drizzle thank you for that, I think that is absolutely right especially as my Fil is extremely draining on the emotions/intellect/time, everything! Boundaries are the key, because he is a wonderful and quite unique man too.