Living some distance from elderly parent....how do you cope if their heath declines?

[mids2019]

Possibly many people in to this boat but if you live some distance from an elderly parent and have a young family of your own how do you plan to look after them if their health declines.

From my childhood families often lived in the same locality so popping in to see if dad or mam were OK and helping with basic needs e.g. shopping was part of the culture

I now live some distance from an elderly parent and it is difficult to find time to visit and importantly if there was a health decline he would be reliant on social care to an extent I think this would make me feel guilty and a little anxious.

Is anyone in a similar position and how did you manage?

I sort admin and stuff like that and do practical stuff when I visit. 2 of my sisters live closer deal with day to day stuff. Mum is 80 and in reasonable health, SD is 82 and has copd, but well managed. His kids do fuck all.

I'm working on them to sort POA.

They both get attendance allowance and I really want them to get a cleaner. The house is full of crap and mum says she'll get one when it's sorted. Told her it'll never happen if she waits for that!

I think no about this too. I'm a 1.5 hope drive from my parents and my sibling lives abroad. I do have POA thankfully but my parents don't want to move and though in good health now, none of us know what's in store for the future. The answer might be to buy in care if we can afford it, but that assumes it's available and there's money. It is one of those stories where you wonder what the ending will be. I moved away so the social network my parents have is all where they have lived all their lives. Currently they have each other, but at some point that won't be true. 🥺 We aren't a wealthy family so there's a limit to what plans we can make at this stage. Guess we'll just have to see what happens and do our best.

I can't help but feel you are being somewhat naive tedgran. It is this attitude that leads to problems. While you have your health it is easy to think you can manage just as you are now. But when your health, or your husbands health declines, or god forbid you develop dementia, you don't have the ability to help yourself anymore.

My mother has dementia and is widowed. She lives about an hour and a half away. She is still at home and has carers 4 x day. This has taken a lot of stress away, but it still requires constant monitoring of the situation. My mum isn't capable of ringing the care agency, of food shopping, clothes shopping, organising her gardener, her window cleaner, her hairdresser. I have to do that.

It would be much easier if she was nearer.

When parents become ill, most of their social networks disappear. They can't get to their gardening clubs, their National Trust meetings, their coffees at the garden centre with friends. They can't drive, they can't use public transport. Their friends don't visit much as it is difficult interacting with someone with dementia who is constantly repeating themselves or who smells due to incontinence.

It is difficult and depressing and I hope I don't some across as snarky, but older people constantly leave it too late to make sensible decisions about their future.

@GoingtotheWinchester - exactly the same experience here, my Mum lived 3.5 hrs away and I had the same concerns as the OP, although never mentioned this to her. 18 months ago she decided to move to the same town, leaving behind a very settled social life, her sister who she spent a lot of time with and lots of other things that helped make her life enjoyable. The move put a lot of strain on her, she has absolutely not been able to replicate the kind of social network she had before - and in fact seems to have lost any interest in doing so - and is totally reliant on me. Our relationship is really strained (it wasn't great before) and she barely leaves the house. I think there is a lot to be said for keeping elderly parents where they are, with the right networks in place, if at all possible.

All our parents divorced in their forties. We loved minimum 250 miles from al, of them and one lived overseas.

My sister moved in with my Mother and provided nursing type care, my Father had an operation that went wrong when he was in his early seventies so needed full time complex nursing care and ended up in a really amazing care home. Father in law lived with my SIL. We tried to persuade MIL to move up to us when she was 70, she was incredibly fit for her age and still working due to money issues, she refused. It was a shame because her house move would have freed up about 250k and ended her money issues. She decided after lockdown she wanted to move. She is now 81 and she is so much frailer. We have just sorted out POA this Christmas.

@BrandNewBicep this is exactly what has happened with MIL, it’s just probably too much of an upheaval to relocate now.

Lots of good advice here. I've been here, lost Dad almost a year ago at 89 and I still wish I could have done more even though he maintained I couldn't. Mum died in a nursing home nearly 6y ago and Dad swore he never ever wanted to go in one. I live 3h away with SEN teen and fulltime job.
They also swore they'd never move away from where they were born, brought up, had friends... so we gradually adapted the house. Stairlift first, mobility aids, bath seats, rollators, a cleaner was paid from carer's allowance. Then a gardener. Paving to make getting to car easier. Powers of attorney. Hard discussions... motorised garage door. Automatic car. Then mobility cart which I really should sell...
Eventually after one too many falls I read him the riot act and we got carers. Until the fall, heart attack and non- responding infection that put him in hospital for his last 10 days, we managed, with me going up there every few weeks and batch cooking, stuffing the freezer, being joint name on online grocery account for when he got it mixed up or forgot passwords... sorting admin...

It was only after he died I fully realised how badly disabled he'd become, and that after the heart attack even if he'd beaten pneumonia he'd have had to go into a home and I am finally almost at peace with it. But it's not easy. Christmas has been horrible without him.

Best to all of you in same boat.

Yes this is the problem. Back in the day many ( mainly women) did not work or worked very part time in their fifties and sixties. Another problem I see quite a bit in my line of work is elderly people in their eighties/ nineties and they have lost grown up children. I was shocked a few weeks ago I did four home visits to elderly people ( as part of my job role) and all of them were grieving the loss of adult children in the past couple of years, for some of them that child was their only child so many are left completely without children to help. Age Uk and other organizations can offer help with cleaning, shopping, home care, transport to hospital appointments etc. It does need to be paid for of course but there is help there.

If your parent still has capacity I would talk to them and explain that due to your family situation and distance you are worried you are limited in capacity to help them should the need arise. Perhaps a frank discussion about the potential for them to move into accommodation near you or using a local service to help day to day (I don't mean personal care) eg a home help twice a week to shop, fetch meds, change sheets, do laundry, heavy cleaning like vacuuming, to generally do the tasks families often pick up

We live almost 5 hours away from my mum who's now on her own since my dad died. I do worry alot about when she needs extra help. My brother lives an hour and away from her but hardly visits or if he does, likes to act like he lives the other side of the world and moans about the drive,even though his wife drives too 🙄

Does a spouse have any responsibility to elderly in laws? One issue I think I'll face is that I have a FIL relatively close and I think my spouse is eventually going to face the same challenges. I think given his proximity we are more likely to be visiting him and that could add to guilt.

Also isn't it completely old fashioned to presume caring for elderly relatives is a woman's job. I am a bit worried such attitudes still exist? Maybe there is an expectation women migrate from child caring responsibilities to elderly care responsibilities? (Sad but you know family cultures)

Another consideration with this scenario is MH because I get the impression from some pos ters here it has really taken its toll (understably).

@mids2019 it definitely falls mainly on the women and yes it’s having a profound and catastrophic effect on my mental health. I hope never to do this to my DC 😢.

We coped by basically me giving up work and being on call 24/7 for 2 decades (4 parents to go through). I spent a lot of time on the A1 and M6 and got to know several hotels so we’ll, I was on first name terms with the receptionists. Cost a fortune and nearly left us broke financially and physically/mentally.

The elderly parents manage by themselves, or pay for help, or use social services. Just like I will do, because I am (happily) childfree. There are thousands of people who don't have children at all, or live in other countries etc and they just get on with it. So please don't assume that it is essential for adult children to get involved or have to look after their parents.

I know I am late replying to this thread, but it's just so exactly what I've been worrying about that I wanted to comment.

My lovely DM is in her late sixties and lives alone nearly two and a half hours away. She is in good health. We are very close, and I know that I will need to help her at some point.

My problem is what to do now to try and prepare for that. She won't move closer to me, so I wonder if I should plan to move closer to her now so I can be there when needed. I don't particularly want to, but my dc are only small now, so we would all move together. If I wait until they're older and have their own lives here, they probably won't want to move, and then I'll be forced to choose between them and my DM.

I worry about this a lot, and there isn't a clear answer. This thread made me feel less alone though, so thank you OP.

I cared for my dad from over 500 miles. I am the only family he sees or speaks with, in years. Dad is 81, we lost mum about 15 years ago and dad has been on his own since.
Dad didn’t have family visiting (I only saw dad once a year at best as I’m a single parent to 3 children, self employed so if I dint work I don’t get paid, dogs etc and a very busy life organising all of that).
I spoke with dad regularly on the phone with his conversations becoming gradually more and more weird. I couldn’t follow what exactly he was talking about and there were issues between him and a neighbour. I now know on hind sight that this was all part of dementia. Alzheimer’s. But I didn’t know it at the time. Dad started to have lots of problems with lots of stuff that resulted me to sort out. Even very simple stuff was incredibly difficult to fix as I couldn’t actually see what he was talking about and had to go by his very mixed up confusing descriptions. I’d end up paying for various people to visit to do simple jobs at great expense to dad. Then he’d bugger up something else or the same thing again and another call out was due. I had to take over all his finances, including making financial decisions when his mortgage deal came to an end. I’d have to find out what accounts he had, whether they were healthy or not. I had to do his shopping. All sorts of shopping. Supermarket. Amazon. Farm foods. Make appointments. Arrange taxis with helpful drivers who’d wait or go in with dad to make sure he got in to the place he was meant to be in. I’d pay for services. I’d arrange doctors visits, calls for hours to nhs24, dentists. Cleaners. Podiatrists. Hair. And, anything up to 22 phone calls a day. I was utterly overwhelmed. Dad ended up with 4 cater visits a day every day. Even with this, he still phoned me non stop. With problems. I began to resent dad as I had no life of my own and my days were filled with running after dads stuff, my children’s stuff, digs stuff, my business, my home. I was at breaking point. Dad is now in a care home, still over 500 miles away. A very good care home. He still moans just as he did at home. I’ve now gif the job of selling his house from 500 miles away. He still wants me to call every day. I just can’t do it anymore. I call and he either moans non stop. Or is depressed. Or argumentative. Or angry. Or frustrated. Or has nothing much to say or is confusing to understand. At best we will have a pleasant chat if it’s a good day but it’s still a struggle to find things to talk about. I will consider moving dad closer but there are lots of good reasons for leaving him where he is. The only reason for moving dad closer is to have more frequent visits from me and his grandchildren. It hard. Very hard.

That's super hard @Dadscare56
Have you accessed any carer support or spoken to any dementia support organisations?
I'm wondering if you moved him nearer, and had fixed days/times that you visited, you might feel less tied to answering the phone all the time, or guilty if you don't? You also might meet other carers locally you could mutually offload to and build a support network. It's bloody hard though, I'm really sorry you're dealing with this and that it seems so thankless, but you've done an amazing job so far.

Dad was having 4 carer visits per day at home. But that didn’t lighten my load. He still called constantly expecting me to do x, y and z. Or he’d just call me to moan. We fell out so many times and his bad traits were intensified due to Alzheimer’s. I would hang up the phone on him when like that. He did have the dementia support man visit weekly for 1: weeks and he got dad into a day care facility which dad enjoyed and the day care loved having him. But now he has hood activities in his care home. Sadly he forgets he’s done them. I now make a point of just calling dad once or twice a week as even when I called him regularly at home, he’d forget and phine me telling me to try to keep in touch. Even if we’d just chatted for over an hour. So I might as well just phine twice a week. I do feel guilty and bad because he has no visitors or friends. But sometimes I feel that’s my responsibility when actually it’s not. Dad didn’t make many friends through life. I need head space right now for selling dad’s house then I’ll review the situation in spring and discuss with him moving down here to be close. But the care homes down here aren’t very nice.

Your point about healthcare staff commenting about where family are is a frustrating one for me and downright judgemental of them ( not aimed at you op)
i have medical appointments for myself and my child to attend regularly. How do I also fit in my elderly parents appointments too. When do they think I do all my non medical jobs or work.

Did your mother take care of her mother and mother-in-law then?

This worries me a lot. My dad died last year - luckily he wasn’t ill for long but it was hard keeping up with his appointments, supporting him at the end and then sorting out his affairs afterwards when I’m 2 hours away and a single parent with a full-time job.

I worry a lot about my mother who is a similar distance away (they weren’t together). She’s got a new partner whose health isn’t great, they moved a few years ago and at the time I suggested they should come closer to us and to his family but she didn’t want to downsize or lower her standards. It would have meant they could build a social and support network while they were both in reasonable health but instead I know I’ll be expected to provide this when the time comes.

It’s so true that everything falls on the women (in most cases) - my brother lives only a few miles from where both parents are/were but he doesn’t drive and contributes very little but always seems to get away with it whereas I feel constantly guilty and have to cram visits into a busy weekend or use annual leave, take phone calls at work and generally shoulder most of the load.

It’s horrible, if we could afford to move we’d move or if I had no kids and she won’t move (we’ve tried) My db and her sister help with hospital appointments etc but it’s horrible sometimes hearing she got a taxi to get important news etc.

As others have said moving them closer to you often sounds ideal but it can move them away from.their own social network and make them even more dependent and can lead to a faster decline. And if, like us a while back, you have 4 parents with ever increasing but diverse needs and endless medical appointments there is no way you are going to cope and retain your sanity even if they are on the doorstep. So you might as well accept that you will need to help them buy in help/ liaise with social services from a distance and get your research in ready to leap into action.

Sadly increasingly the services are simply not there to buy in .There anre massive shortages and waiting lists , we have found that even if you have money some things are just not available .

Older people needing services are by definition less able to cope with the complexities of organising these things . By the time they need the services they have lost the confidence/cognitive skills to take these decisions . My parents said they would organise these things themselves but they are simply unable to , my father can’t remember if he’s organised something or not. They are not internet savvy and appointments even with dr or hospital seem to be almost exclusively dealt with by email etc , if you can’t remember what you had for breakfast you are not likely to remember your password for Dr/chiropidist , if you don’t remember the carer is coming then you won’t know that they haven’t turned up etc etc . If you no longer drive and the bus services have been cancelled and the taxi service is worked through an app ….

I live an hour away from the Venerable Ancient who I care for. He is very clever and has me typing academic comments for journals, but can't make sense of the banking app or the taxi apps. He refuses to have a cleaner.
I visit most Saturdays for a few hours. I have had to take time off work to respond to the emergency alarm, attend hospital etc.
He moved house a while back and refused my help so booked two removal companies who each moved some stuff but didn't unpack. The stress of moving put him in hospital, but the evil properry company that ran the old place left him without heating over Christmas and he didn't tell me so I only found out when I went round on 27 December.
It mightbe difficult living with elders, but living far away is a nightmare.
My brother looks after our dad who lives down the road - way easier.

Totally agree with that. Dad has great pensions, a very comfortable income plus Attendance allowance. We managed to source a chiropodist and a weekly cleaner. It was remarkably difficult to find a barber to come to dad’s house to do his hair and hairdressers were scared to do his beard. 🤷🏻‍♀️He had carers 4 times a day (free in Scotland) but we needed a private cater to help through the night, take to appointments and stay with dad. Could I find one? No. I searched and enquired so much. Social services told me they didn’t know if any private companies but that were like gold dust. Taxi drivers (some were helpful/many were not). Dad lost his keys constantly. His house alarm would go off. Etc etc. It’s incredibly hard especially if the person has dementia. I’m going to consider moving dad near me but we are talking about moving dad from Scotland (he’s very proud to be Scottish) he’s never left Scotland except for the occasional trip to see me or go on holiday. His accent is strong. The area he lives in within the care home is familiar to him. Even if I call dad lots, he thinks I haven’t. He’s in the best place now but I feel bad that I’m not able to pop in on him. I had enquired for help on his community page on Facebook, trying to get more support for dad and a complete stranger who knows nothing about me (or dad), said you could move to Scotland to help him!!!! I do everything for him. I imagine I do more for dad than many families who live close to their relative. Probably more than that stranger has ever done it been expected to do. This person seems to think that uprooting my entire family and my business from their home (they were born here and lived in our village their entire lives with friends and school, college, jobs etc) to live somewhere they’ve never lived before possibly just for a few years of what time dad has left is a reasonable suggestion!!! I also have lived down south for 30 years and I’ve never lived in the part of Scotland my dad lives in and nor would I wish to. Dad and mum when she was alive, moved 3 times after I left home as a teenager. I need to work. I also need to tend my own family. Dad wasn’t and still isn’t keen to move down south even though it would be a lot easier to uproot one person who has no social friends or job. So if dad isn’t willing to move then I find it remarkable that this person felt qualified to remark.