Worried, guilty, helpless. What to do?

[orenisthenewblack]

So, parents live an hour and a half away. DF 80, fit and healthy but getting older every time I see him. Still drives but car on its last legs so he will not be buying a new one. DM 72, recovered well from stroke 10 yrs ago but suffers memory and mobility problems because of it. On top of that, she has arthritis, osteoporosis in her back and constantly in pain.
They rarely complain on the phone because there are 'many more worse that them'.

I spent two weeks with them on holiday recently and realised how much my DF does for DM. It was an eye opener to see how everyday is for both of them.

DM confessed to me on the phone that she is having a flare up this week and has not been able to shower since coming home from holiday.

She desperately wants to clean the house but can't - she says house hasn't been dusted for four weeks. (She hates this)

I'm aware that she has my DF help her dress, do her hair etc. She's recently had an urine infection which meant she couldn't get to the toilet in time.

She can only walk a fee meters before having to stop. She refuses a stick, zimmer, wheelchair and mobility scooter.

They live in their own 3 bed house with gorgeous views and would hate to move. I'm unsure how much money they have, they have enough for a holiday, but not to have the heating on around the clock - not flush with cash but comfortable perhaps. DF is quite frugal.

So here I am, living in another county, wondering what can I do to help without offending them. I'd love to be able to pay for a cleaner for them but they would hate it.

I feel very frustrated and useless. I suppose I'm asking advice before things get any worse. I'm clueless.

Just been for a walk and I know what I need to do. I need to go to theirs once a week to do the bed change and cleaning etc.

What I don't want to do is to give up one day off to do this. I hate doing my own chores on a weekend. Sound selfish and horrible doesn't it.

Oren, sorry to be blunt, it isnt what you need to do, what you need to do is get systems in place to support them to live At home as they long as they can.
Seek some advice from age uk about attendance allowance, non means tested payments of £60 ish or more which could pay for cleaners, etc.
Get a social services assessment of needs which could lead to adaptations for their house etc and what help they need and if they are eligible for funding. Savings less than £23k . Other help may be available.
This is the best way to help, and remain their daughter, not carer.
Also consider power of attourney.

I agree with Sandwich - my parents didn't want to use a scooter, have a cleaner, use the hospital transport, pay for a taxi - they would much rather have had me do things. But I could not do that without a massive impact on my own family, and more importantly it was not going to be sustainable long term.
8 years on from the first care, they are still in their own home. It hasn't been easy, and I've had to have strong words at times - but there comes a point where they have to choose between pride and frugality and what they actually need

I agree with CMO ..strong words are needed. My diss is a nurse and another sister works in a medical field. I was a bit shocked at how sternly they spoke to dm about using walking frame/ getting home help etc. They laid it on the line. You want to stay at home this is how it's going to be. But as time went on l saw they were right and dm adjusted to the changes, reluctantly at first but got quite reliant on her home help. And lived at home until the end thanks to those aids.
Get a home help package. I am in lreland so not familiar with your systems but would think at that age and those needs they will get help. They will fight it but put your foot down as it's for their own good.

As PP have said now is the time to have some discussions about finances,getting POA in place.I live 3 hours from my mum,now 90,and widowed 7 years,still living independently in her own home.She has weekly visits from a cleaner and hairdresser,gardener cuts the grass.I arrange Ocado deliveries,they bring bags to her kitchen worktop for her to unpack.E mail and texting make contact with her local support system so much easier.Medication,milk,newspapers are all delivered.I have POA and use internet banking. I visit every 2/3 weeks,take her out,sort local things etc..Her health is stable at present,I dread a decline obviously,she may need additional support but it cant or wont come from me, I.have my own life and family to consider.Take time to read the other threads on the EP board,you will get lots of advice.

One thing I did after Christmas was get myself put onto DF's bank account with a signature and got a debit card for it.

DF is a self funded retiree still running his business and I had to point out that if he did, as executor there was a distinct trail I had to follow. However, if he had a stroke or whatever and he didn't die, then that business still had to run, his bills needed to be paid etc. And that this is the 21st century so if the arrangements were made now, I could manage them from home if necessary. It took a while but we got it done and I am pleased. (The first thing I said to the bank when they put the forms in front of me was "That's not his name. Fix it". That was useful, too.)

It was good because he then had trouble with a direct debit and the bank were happy recognise me properly to talk to me about it rather than just relying on country town familiarity.

Brilliant advice ^ especially the bit about being tough up front. I am sure you love your mum but she is being selfish and irresponsible. driving 3 hours to change hr sheets is absolutely nuts, do not start down that road.

What can be useful, is contacting the relevant agencies and saying "I live in a different country, but I can come for a week and will be there on X dates to meet with people to organise things. Would it be possible to arrange an appointment/assessment/interview for that week please?"

In my case my parents didn't speak English very well either, and I was able to sort out a LOT in the month I was with them as people fell over themselves to deal with me rather than having to get translators etc in. (Parents in Australia, I'm in the UK).

Some of the things we had done there - Domiciliary Care assessed the house and put in a bed rail, bars in the shower, rail near the door magnet for the screen door (fly screen door), extra wide wooden step for the back door, tripod walking stick, raised chair so DM could 'rock' out of it rather than having to use non existent leg strength to stand up.

A version of Meals on Wheels was organised, that was culturally similar to their normal food. A cleaner paid for by the council, once a fortnight (DM would pick the jobs she wanted done most). A shopper for groceries shopping (this was before the days of online shopping), the shopper speaking her language. Someone to help shower her 3 times a week.

I'm not going to lie, it was REALLY hard organising all of it. Chasing the various agencies to see who could help was incredibly time consuming. I basically spent the whole or every morning on the phone talking to various people. If someone couldn't help me, I asked them if they could recommend another agency that might, and then called them, and on and on.

My siblings lived near them, and they had been helping out constantly, but it was effectively fire fighting. They were never able to 'get ahead' of the problem, and put in place systems to help long term. (Many, many hospital appointments for both parents, helping with cooking, cleaning, etc was taking their toll on them.) It was having a clear schedule and being able to make all the calls and organise meetings, and being bloody minded enough to refuse to take a 'no' without a lead to another option, which sorted things in the end. And being bloody minded enough to not give a damn if my parents didn't particularly want some of the assistance I organised because THEY were quite happy for my siblings to continue running themselves ragged. AFTER it was all organised my DM did say thank you. My DSis who had used up all her holidays and was having to take unpaid leave to ferry around our parents was in tears with relief, my DB who was self employed, had had his income reduced by 1/3 because of how much time off he had to take - please don't let this be you!!!

Would you be able to fit in helping them on the weekend instead of your day off?

OP I completely understand that shocking thing of seeing your parents get old and wobbly and so on.

however, I would really caution against this. Even without a long journey, after my dad died, I used to feel - with no pressure from mum - that I "ought" to do certain things, but getting a cleaner was actually the way forward!

the emotional toll of doing all this will be horrendous and it sounds like you have a long trip to do as well.

as other posters have said, your parents can apply for various allowances and if they are okay for money, they can get a cleaner, home help etc. Mum's cleaner does things like change beds and hoovering - she can still do dusting etc but my dad used to do a lot of housework and although I could do bits on the weekend, that's not spending quality time with a parent anyway.

also, while my mum is really lovely, I do see a natural instinct to rely on adult children unless boundaries are drawn. There have been a couple of larger jobs round the house that sis and I could do but we have bluntly said "you've got the money to pay someone to do it and it's not fair to us".

I really know how easy it is to feel like you ought to do it but it really is better if you don't. Your mention your DF is frugal that doesn't necessarily mean they can't afford a cleaner, far from it!

Thanks for all your replies. I know you're right. I have contacted them today and they say they are coping and I'm worrying for nothing.
DM has been for blood tests today in regards to the flare up so hopefully will get some steroids or anti-inflammatory pills, whatever's needed.
They sound so optimistic and upbeat tonight. I'm thinking my anxiety is all about me..... but that's another post.
I'll be lurking in this topic from now on.
Thanks again for being kind and giving me a reality check.

🌺Oren. Good to hear positive news- but it is worth arming yourself with info when it is needed. Is there anyone who could talk to them about say getting a cleaner in? Getting support in before it’s neccesary is always a good plan.
There is loads of support and wisdom on the main thread.

Oren. Have been reading your thread with interest. Assuming you are in UK, one thing you could consider now is organising attendance allowance for your mother. From what you have said, it is likely your mother would qualify for the lower rate of attendance allowance (we got it for my father under similar circumstances). Attendance allowance is not means tested and is £58.70 per week. Check the government website. It is not difficult and is designed to help pay for things like cleaners, etc. Best of luck.

Please don’t fall into the trap I did of doing everything. I refused to clean but it took a couple of years of nagging to get my mum to agree to having a cleaner. Other than that I did the lot - washing, shopping, managing finances, I was on my knees by the end. I don’t resent it at all but I’d find better ways to handle it now.

I would take a step back from them and encourage them to move into accommodation which is more suited to their needs

Just been for a walk and I know what I need to do. I need to go to theirs once a week to do the bed change and cleaning etc. No you don't. Your parents aren't going to get better, they're going to need more help as they get older and slower. What you need to do is focus on the things other people can't do - finding out information, being able to advise, help them make decisions. That's enough of a job on its own. Cleaning and bed changing anyone can do. So subcontract it.

You also need to make sure that what you do doesn't end up with you building up resentment. Your parents would hate to feel their child regarded them as a chore, as something they weren't looking forward to.

My parents accepted a cleaner when they were told one of the women they knew from church was a cleaner and that she cleaned for a lot of people they knew. It wasn't something they'd ever considered before. It was one of the best things they did - she came every week and had the number of one of my siblings so that she could let them know if there was a problem. They accepted a gardener at the same time.

Does your mum get any kind of allowance?

Your DF is entitled to a carers assessment in his own right, and may be entitled to free services even if they are self payers for your DM. Social services should be able to do it or it might also be done by a local charity. It's Carers Week this week so they're might also be publicity / events locally.

Wonderful advice, thank you very much. I will find the info am take everything with me on my next visit.
Best fill it with them face to face so there's no procrastinating.

You're all right, I'm already in my knees with working full time and have a cleaner myself as I don't want to do it on my weekend.

If they can afford a cleaner it's absolute madness that they don't have one and you have to do it.

Top tip- for attendance allowance gather the info from your parents and do it with help from carers association/ age uk. It’s about your dm on her worst day which she might not want to record. You can sign in their behalf.
Also, ask for a paper copy from the phone line. It will be datestamped and if the claim is accepted it will be dated back to that date.
A wise mnetter shared that- we got over 200.

Top tip indeed! Will do. Once again, thanks for all your replies 💐

You can sign in their behalf. You can, but only if you have PoA (in which case you need to send them the PoA form) or you can request to be appointed to act on their behalf. Even though I have PoA (and PoA for Health and Welfare only kicks in once the person has lost capacity) I found it easier to fill it in myself and get my father to sign it.

Also, ask for a paper copy from the phone line. It will be datestamped and if the claim is accepted it will be dated back to that date. That may well be worth doing. It states on the form that it's payable only for a condition lasting more than 6 months, and their telephone advice is that they will therefore pay only once the condition has lasted 6 months, but I've just had it backdated to the date I sent in the form, which was less than 6 months after the need arose. So it may be what happens is they won't actually grant it until 6 months after they became eligible, but they're prepared to backdate it.

However, you have to send in the form within 6 weeks of the date stamp, so it may mean that they won't backdate it more than 6 weeks.

They need to pay for a weekly cleaner, possibly one that changes beds, does laundry, house work, ironing. Best thing is try to get someone locally who comes with a recommendation.

If your parents take regular medication, you can get this delivered free from local pharmacy. They phone up to order, it's delivered. You need to set it up once at the pharmacy, take the prescription with you

Get a key pad/spare key put on the wall