Advice on talking to the person who needs care

[FunnyOrca]

My mum’s sister has advanced/stage 5 Parkinson’s. For context, taking her to the bathroom is a 20 minute activity due to mobility. Consuming a small meal takes 45 minutes. From leaving her chair to getting into the car takes about 30 minutes and requires 3 pieces of OT equipment.

She gets 4 carer visits each day. The carers get her up in the morning, provide her meals, take her to the bathroom and get her ready for bed each night.

My mum does everything else and everything she does is on her sister’s terms (sister is big sister and they still have the dynamic). While the Parkinson’s is terrible, she has luckily had nearly no dementia/confusion/speech problems. She knows her own mind and imposes it on my mum. Some examples:

1. she insists to be taken to the supermarket every week. She won’t let my mum go alone or do an online order.
2. she will get my mum to help her attend an appointment and then as soon as they are out of the house she will spring other activities they must do on my mum
3. she booked a holiday for herself and my parents without telling them and then expects them to facilitate it for her.

Obviously, her mind is under stimulated and she wants to get out and about, but ambushing people into it is creating resentment.

My mum won’t say anything to her, but I wondered if anyone here might have advice about talking to her about having more realistic expectations of my mum?

Also, to add, my mother is not happy at all in this situation. She and her sister actually barely get on at all! My mum is only getting older and the physical strain of the caring is getting hard for her.

How old are they both. Your mum has to start saying no, there will be a pd nurse and support group who can offer advice, there will also be local community kindness groups, where does she, live. .

Your poor Mum. That's a horrid situation to be in. I don't get on with my sister and hell would freeze over before I would care for her.

It sounds like your aunt isn't far off from needing 24/7 care. Does she have a social worker that supports her? If she doesn't, I would make contact with your local adult helpdesk and your aunt's GP and explain that you're very concerned about your Mum being an unpaid carer and that your aunt needs a lot more support than the 4 visit a day package she's getting (although this is the maximum for home care). Neither will likely thank you, but I've had carer burnout myself (as well as having worked in care) and sometimes, someone just needs to be the voice of reason.

Oh dear, what a difficult situation, especially if your Mum won't stand up for herself. What's your Dads position on all of it?

are you living locally? Any chance you could turn up instead of your Mum & just say 'No' to your Aunt to any 'extras' on a planned trip??

as she has no dementia/impairment. Maybe just being direct with her is your best option? 'Aunt, Mum is not up to helping so much, but as she loves you (ahem! No need to mention feels obligated) so much she never wants to say 'no' to you. I think we need to find someone else who can help too.

then get a paid 'PA' to do a weekly shopping trip & other bits.

She needs an increased care package ( although i imagine 4 visits is maximum) or as others have suggested pay someone to take her shopping or that needs to be incorporated in the care package.

How close do you all live to each other? Could your mum go away for a couple of weeks and you take over the shopping and appointments and just impose the new normal - which is either food delivery or you shop to her list. For appointments are they near enough to use a wheelchair - that makes it much harder for many extra trips. And as for the holiday- they just need to say no or work out the sort of holiday they would consider.

My mum also has advanced Parkinson’s and sounds as if she has similar mobility issues. She has 3 private care visits a day - 2 hours to get her up and dressed and leave her a sandwich lunch, 1 hour early evening to do her evening meal and 1 hour at night to get her into bed. I do a visit once a week (drive time there and back is about 6 hours so can’t usually do more days) and go out and get the main shop. I also try to arrange appointments for these days whenever possible. Now we have switched to using a wheelchair it is so much better - getting her in and out of the car was getting very difficult. Fortunately although we have had appointments on cold days there haven’t been any very wet ones yet so we have managed. My brother is much closer and visits 4 days a week ish and grand children call in too. They all do much shorter visits and just go out and get small pieces of shopping if she needs something (although I do try and get everything once a week). When I am on holiday I have either ordered a food delivery for a time when a carer is there, or my brother does ad hoc shopping for food and I’ve made sure all the non perishables and cleaning type stuff is well stocked up beforehand. They sometimes take her out in the chair just into town or local park. Eating out is quite difficult because she takes so long to eat but she does enjoy that (I’m visiting tomorrow with youngest grandson and we will either have lunch out or go for ice cream if it’s still hot).

But I guess the problem is your mum might not be able to push a wheelchair - it’s been hard to make my mum realise that I can do it, my brother mostly can and the grandchildren can, but most of her friends can’t manage anymore. She frequently suggested booking on to days out and said she would bring a friend to help for a while but that has mostly stopped now. She has one lovely younger friend who takes her to the theatre occasionally in the wheelchair.

As for the holiday - they must say no. I know my mum would love to come and stay with me, or me take her to stay near her sister. A few years ago we could just about manage this and found premier inn accessible rooms quite good, but now she simply can’t manage without a hospital style bed to sit up. Last time she came here I sort of hoiked her about but I’m not doing that again, and I imagine your mum would not be as able to do that.

It's very difficult - my mum is in an over 60s flat, but it doesn’t have much in the way of organised activities (& she would struggle to get to them alone). I think she would actually be much happier in a care home with people and activities and carers to help with the quick things ever hour or so rather than waiting for the main visits, but at the moment she refuses to consider that.

Your mum needs to set some boundaries around what she is prepared to do and what she isn’t. What your aunt wants in terms of being able to go out and do things isn’t unreasonable. If your mum doesn’t want to take her she needs to be clear about that and say no. If your aunt doesn’t know your mum is unhappy about the situation then she’s hardly doing anything wrong.
my suggestion would be to try and arrange an enabler to come for an afternoon or two a week to assist your aunt with her shopping and errands. So that your mum doesn’t have to do those things. If your aunt can develop a relationship with a consistent enabler then she could still have her holidays etc.

They are 65-70. My mum is very fit and active but things are clearly getting heavy for her.

My aunt has had the Parkinson’s for a long time already so we have been through the support groups and she has a great Parkinson’s nurse, but now the care package is in place and the medication is mostly just pain relief at this point there is less help they can haven’t that they haven’t already. We still get good contact from the local OT though and they are very responsive.

Thank you. This is great advice.

Your experience with your mum sounds very similar. My mum is over at my aunt’s 3-4 times a week. I work full time and simply cannot do as much as her. When my mum goes on holidays, we have to call in favours and not schedule appointments. I go over twice (including the shopping) and she tolerates me bringing the shopping because I can’t drive so couldn’t get her to the supermarket anyway.

My mum did at one point negotiate her down to every second week, but she just scheduled appointments for earlier in the day and then forced the shopping trip to happen afterwards.

She has to be driven to most appointments. Her GP is probably a brisk 15 minute walk for a fit adult but it’s a hard journey with a wheelchair and very uncomfortable for her. Some appointments are accessible by bus but the wheelchair space is often occupied and we end up in a taxi.

To be honest, I think it’s getting harder as her friends get older. When she was first diagnosed some weren’t even 60 yet and they were so helpful but now they are getting older and more infirm and even the fit and healthy ones has ailing spouses to take care of so have less time for her.

She needs near 24/7 care but she won’t move to a care home while she still feels young in her mind. She just needs to understand that my mother can’t be a replacement for an entire care home.