It's time to join the board - early onset overwhelm

[GreyPaw]

My dad is in his early 80s and seems to have declined in the last couple of years (possible Parkinson's, waiting for a diagnosis). He's a widower and lives alone about 20 mins drive from me.

The trouble is - he's an extreme introvert. Won't speak to people, join things, take up hobbies etc. He gets very lonely and I am his only company.

This puts a lot of pressure on me - I'm a widow myself, have school age children and work full time. I feel constantly guilty that I can't see him more, but also resentful that he relies so much on me (and that my brother doesn't step up, but that's another story).

He's getting to the point where he may not be able to live alone safely for much longer. He'd like me to move in with him, but that would mean moving the children, dog etc which is a massive upheaval. I have no idea what the other options are though - if there's anyone who could help to care for him at home so I don't have to do it all. I'm overwhelmed by the feeling I have to be everything to everybody. Can anyone relate?

I can't relate but there are many other options to you uprooting your family to move in with him to be his carer!

Certainly he can pay for help - or if he qualifies, the council will pay for him. What sort of help do you see him needing? It's likely to grow through stages:

• help with cleaning/being taken shopping
• help a couple of times a week with showering
• help every day with getting up/getting to bed/meals - ranging from a couple of shorter visits from just one person to 4 x visits a day from a pair if his mobility is very compromised
• a live in carer, or residential care

I'm afraid you are going to be carrying mental and admin load, that's really hard to escape, but the advice you hear on Mumsnet is to be proactive in putting in boundaries - if he needs something think about whether he could pay someone to do it; save your emotional energy for what only you can do.

Do you have POA? If not get both, and I'd say in your name only unless DBrother is going to pull his finger out.

Thanks for the response. POA is in mine and DB's name. DB may well step up but has very much handed everything over to me to manage, and to let him know when he's needed. He doesn't live as close as me, but then he has far fewer responsibilities.

I think at the moment his risks are related to falls, and also his loneliness. He can take care of himself fine - his place is immaculate and he gets himself shopping. I'm concerned he's getting less steady on his feet.

He has a hospital appointment this week to see a consultant (possible diagnosis) and I half-offered to take him but it means booking a day off work. I'm conscious that I might need all the leave I can get if things deteriorate, but I feel terribly guilty that he's getting a cab. I've got a feeling he's going to ask me to take him after all, and I don't know where to put the boundaries in. If I had all the time in the world I'd take him, but I'm split in so many different directions and work will get fed up if I take too much time off.

Completely unreasonable of him to expect you to move in and become his carer indefinitely. He'd really want that for you?!
Today is his rainy day so now is the time to spend what he has 'scrimped and saved' for and buy in as much external help as possible.
If he's not going to do that he must live with the consequences and the inevitable crisis. Don't be manipulated. Your DC come first.
What were his plans for coping as he aged? How has he prepared?
The anger at your brother is misplaced. Our lives pan out as a result of the choices we make. Time to make difficult ones and preserve your mental health.

I actually think it might be helpful if you can attend the appointment this week. It would offer an opportunity to ask how his medical condition is likely to play out long term which would be useful to know for future planning.
If it is Parkinson's, I'd ask if there is a nurse specialist/support team and get their contact details as they may also be useful for you to call in the future and they can help coordinate community help too.
Depending where you are, you may have a community falls prevention team who can assess his risk and provide support, equipment etc - ask his GP. Again, they might be able to signpost for loneliness via social prescribing, although whether he'd be up for attending anything is another matter!

That's really helpful, thanks. I'm thinking it may be the right thing to attend the appointment because it's difficult to be alone when you get potentially bad news, but also I can help ask the right questions and find out what resources are available.

He's got money put aside so can pay for care, I think it's his loneliness that's the real reason he (thinks) he wants me to move in. A social prescriber could be a good idea, at least he'll have some options. I see him once or twice a week but I struggle to do more.

Don't have a lot to add but I understand where you are. It's pretty overwhelming when main responsibility falls onto you. We have just started live in care for father with vascular dementia. It's working so far but it's still a lot of admin and household maintenance to do....you can always try daily care visits to start...we did this and it was brilliant. Sadly now we need more support....

Just to second what's already been said. It is sad that he is lonely, but it is not OK for him to expect you to move in with him to provide care. If you see him once or twice a week, that is actually a lot of contact.

He may not see it that way, but if he has capacity, it is his responsibility to organise support and company for himself and/or co-operate with other people to allow support to be set up for himself.

I strongly agree with other posters that you need to delegate absolutely every task possible; the organisation and administration of support is already a large task.

With my father, I am gradually getting him more support in the home but it is a job of work coaxing him to accept it. I actually got pretty direct with him at one point and said I needed him to help me support him, and that that included him accepting in-home support. He responded to that, though each time I try to help him increase the amount of support he has at home it's really difficult. I live in another country and visit for a few days every couple of months or so.

Another quick note: we often end up supporting a parent much longer than they, or we, expect. We need to pace ourselves. More than fifteen years ago my father was already saying he was an old man and asking whether I would consider moving back home to be near him. And he's still going strong and living independently. It's hard supporting from a distance but I believe that not moving back was the right decision for me.

I would recommend, if you haven't already got it in place, considering talking to somebody about things (like a therapist, maybe) - it can be very difficult to think clearly about these situations from the inside.

but if he has capacity, it is his responsibility to organise support and company for himself. I wonder how easy that is as you get older and have less to offer on the friendship front? 70s and 80s fine, meet people, offer mutual support. But there’s a big loss of friends as the pass away or go to live near distant family, and you yourself reach a stage where your own needs exceed your capacity to give.

Would you mind living with him? Could he afford to move I to one of those retirement villages? Or instead of you moving into his house could he move I to yours? This is really hard and I know at one point my mother will probs end up living with me but I'd rather that than her be lonely

I'd also prioritise trying to get your brother to take some responsibility. Can you be direct? If he's offered to help if you let him know, do that. "Hi bro, I need you to visit Dad twice a week on Tues evening and Sunday afternoon"

Do you mean you're overwhelmed early on in this experience? 80s isn't early onset for those conditions.

Stand your ground about meeting your own needs as 1st priority. Doing your duty does not mean putting him 1st, it's very reasonable to only do what is feasible. He may have years of care needs to come, and the best way to get his needs met is to get him into a situation with multiple-sources-of-support care package. You're no good to anyone if your own mental health suffers. It's not sustainable for you to give up too much & you have other commitments, anyway. It's ok to put your own needs 1st because (repeat repeat) you are no good to anyone else if your own mental health suffers. His needs can't come first over everyone else's.

If someone has to move why would it be you an
Put bluntly your first priority has to be to your DCs, your DF has other options. Its massively selfish of him to expect you would move in with your parental responsibilities, but he's scared because he doesn't like the alternatives.
He needs carers or to go into a home. You can't and shouldn't be trying to do it all.

It's very selfish of him to expect you to move in, disrupting your entire life and that of your children and DH, whilst he gets to carry on living as he has done.

It's also probably not how he's anticipating it working - he's unlikely to have lots of company as you'll be working, school, hobbies. Mealtimes might not be when he wants them (I know several times a week we eat after a time when my mum has gone to bed - she has no awareness of this as we eat earlier if she visits but it's a massive inconvenience and I couldn't do it every week!).

I grew up with a grandparent living next door and it's the one thing I have always said I will not do for my mother - she is NOT living with us. The effect on everyone else is too much. It also only delays things - at some point there has to be decisions about carers or maybe going into a home and that's far more complicated if the person lives with others.

And there are vast numbers of activities for older people around - possibly he needs some help finding out about them or getting to them? Every community centre, library and church seems to have activities aimed at this age group. Not all of them may be of interest but surely there's something whether it's an afternoon tea, talk about local history, silver cinema or bingo?!

The other thing to say is this is not a static situation.
Even if you did uproot your family to live with your DF he'd likely need 24/7 care as he deteriorated.

I agree with others that you going to this appointment with him is actually worth prioritising. Thats an example of something that it is worth you using precious leave and energy to do.

Get it verbally agreed and into the consultant's letter if you can that doctors can discuss his medical treatment etc with you. Railroad him into it if you have to - and ideally get him to write to his GP along the same lines.

Start making a list of questions for that appointment. Ask them even if he visibly wishes you won't.

Questions like -

• who else is in your team (eg clinical nurse specialist as a pp said - the neurological nurses are often the key to everything- there is a ludicrously small number of neurologists in this country but the specialist nurses do fill some of the gap, they are amazing)
• what are these meds for, what are you expecting, how long should they take to work, is there room to increase doses if not; how long overall are they expected to help
• what will it be like when he's 'off' his meds (parkinsons meds work and then wear off in a pattern)
• who do I talk to about care needs as he lives alone (ie hoping for a referral to social services)

Don't waste energy resenting your brother. Use him as a sounding board and a support for you.

Don't waste time thinking about moving in with him. Of course you're not going to uproot your family and he has little concept of what he's asking apparently. Look for companion carers and befrienders who will do a bit of gardening, meal prep, light cleaning but mainly chat or just watch TV with him. Ami is an umbrella organisation for befriending, might be worth looking at.

Tbh don't expect him to become super social, going to clubs etc. Too late to change. Just look to improve the texture of his life.

Decide what you can do (eg weekly visit, additional call) and do that.

Coping with similar at the moment. My nan is extremely lonely. Me and my sister have sole care of her. We have been going in most days to see her, shop, clean, but she cries when we leave 😢 We both have young children and full time jobs - there is no more we can manage. We have just arranged a carer for every morning. She doesn't want it - she wants to pay me to do it but I can't afford to give up my job under any circumstances. I think you should go to the appointment and then start to make necessary arrangements for carers. Thinking of you xx