Am I doomed to be a burden on my children?

aggie

I remember my MIL wringing her hands as we set off on holiday for a few days , she went to stay with her cousin and moaned the whole time !
I decided I would never do that and happily wave my lot off
Having said that I now need my lot to get shopping for me or take me to the shops , hospital appointment or days out
I have to ring to get prescription from the Doctor and then ring to ask someone to fetch it ! I hate asking and make sure to thank them

I'm obviously lucky with my chemists as they bring all my prescriptions to my home - maybe yours will do that if they are asked or find a chemist that offers that service?

I have lived abroad , sorted my own way out with a child of two living in syria, travelled about and never been near enough to my family to be able to rely on anyone to help me . Looked after my husband until he died, on my own and am now living with cancer and a bad back. I do not have the money to contemplate living in any sort of care home style place even if I wanted to . I did hospital car service 3 days a week for 10 years, and saw so many people having to move somewhere they would not have chosen through ill health, because they did not want to leave a loved home. So I moved here a couple of months ago to a ground floor flat, leaving my 3 bed semi but more importantly my beloved big garden. It was a wrench especially giving up my piano, but I shall get myself sorted out eventually and have got my independance , which I value, am now near to a train station and buses if I have to give up driving . It was a very difficult move as had been in my last property for the longest time I have spent in one house of 21 years to sort out and with covid it made it extremely difficult and could not have family or friends to help. But the most important thing is I am still doing it my way!! However my body behaves my brain , at the moment, is working ok, and I can listen to radio 3 all day and not bother anyone else. Stephanie Cole in waiting for god has used much of my ideas and I must have been a role model. ! I intend to carry on being myself and living my own way, eating what I like, doing as I please, within reason. If I cant sleep and want to wander around at three am, reading or going on the internet it is up to me. In particular with the covid situation seeing how people have been treated in care homes I do not intend to join them unless I can help it. There may have been genuine reasons for it but to be controlled and told what you can and cant do and being stuck in one room sounds more like prison than a home to me. I stuck to the rules and was also shielding because of the cancer but I still felt in charge of my own life and was behaving appropriately because it was the right thing to do and not because I was told or forced to do something by other people. So I hope to stay here for as long as possible and make the most of what I can , here in Yorkshire, where I want to be for as long as I can. Friends, music, reading and walking and being able to go up into Swaledale or to the coast give me much pleasure and hopefully I should be able to continue to have those for a long time and dont cost a lot of money so have done the best that I can to organise my life situation and not be dependant for now. What the future brings I cannot say but by moving I have done a lot of sorting out so that will not be a hassle for the family . After many years of looking out for other people I think working out a good solution for ourselves matters. Leaving friends of many years to live near family who are probably out at work and you would not see very much is a big step to take. Also especially in the present circumstances there is the possibility of the family having to move for job reasons and you could end up alone in an area you dont know or dont particularly like.

Galaxy

There is another part to this. Caring is a skill particularly in regard to dementia. Many many people fo not have the skills for this, this is not a criticism, it is often very bad for everyone involved.

Galaxy, IMO most people can acquire the skills, if they want to inform themselves. But when it comes to caring for someone with dementia at home, no matter how clued up you may be, too often it’s the sheer , relentless, exhausting nature of it, which eventually ends in a care home placement.

Care home staff can go home at the end of their shifts, they get breaks and time off.
I don’t mind admitting that dh and I were blithely clueless when FiL with dementia came to live with us - ‘Just getting a bit more forgetful - how hard can that be?’

Talk about learning the hard way - I’d had no idea that someone who’d always been so pleasant and a welcome guest, could show such changes of behaviour, and need such infinite reserves of patience. Asking the same question over and over - I once counted 35 times in one hour - was the very least of it - it was the violent rages - over the most minute things - that finally finished me.

And this was well before information was so widely available on the internet.

I do get very cross with people who oh so piously berate others for putting anyone in a care home - when they have absolutely no idea of what looking after someone with dementia can all too often entail. And I’ve since learned that our experiences are sadly not remotely uncommon.

I do get very cross with people who oh so piously berate others for putting anyone in a care home

I’ve never had to actually put anyone in a care home, although my mother has decided herself that she wants to live in a care home, but I agree with you Witzend and I see now where your name comes from. It is draining and stressful enough having to deal with an entitled and manipulative mother in her nineties, without adding dementia to the mix. These unfortunate qualities do not become milder as time passes, the same entitlement, manipulation, and bossiness remain ever present, with the addition of the great age causing the daughter in her late sixties to feel guilt as well.

I agree with you wizened, but I do think the qualities of patience etc arent present in all people and we shouldn't expect them to be.

Madeline 45 thank you for that post.lt has given me much to think on

Galaxy

I agree with you wizened, but I do think the qualities of patience etc arent present in all people and we shouldn't expect them to be.

I must say that I’m far from the most patient person in the world, Galaxy, so when it came to e.g. the same question over and over and over, I had to make a sort of separate compartment in my head, where I could go on answering nicely, but mechanically. The slightest show of impatience or irritation was liable to provoke the sort of rage that had me fleeing the house, with our poor terrified dog.

Poor old FiL - never in a million years would I have imagined him getting like that.

I’m reading a book called ‘The book about getting older (for people who don’t want to talk about it), by Dr Lucy Pollock, a consultant in geriatrics. It’s a fascinating insight in to how getting old is, with all the stuff we don’t want to talk about like pee and poo! I got it so I could understand more what my nearly 80 year old mum May go through and having the conversations with her now about what she wants to happen. Also as a directive to me to try and make my old age (I’m 55) in to a bearable experience for my loved ones. The main takeaway so far is get moving, now, and do it constantly. And if you have to make your home fall free as you can. Remove rugs, get rails, review medication that can sometimes have side effects that then is medicated for. And try to stay well. Dementia is another matter, I want to be able to choose when my life ceases, however painful that will be for those left.

I guess what I am saying is I can definitely make choices and makes things better for those caring for me if that happens.

My professional experiences, setting aside those who have character altering strokes and alzheimers is that horrible demanding younger people become horrible demanding older people

Mattsmum2 When you say 'Get moving now and do it constantly' do you mean move house? That sounds exhausting!

I spend a lot of time doing things in stages, bit by bit - or just a couple of hours a day - rather than ask anyone for help.

Like Peasblossom, I had a load of grit delivered, then moved it in half-bucket loads, just a few every day.

I recently cleaned the gutters, though, and feeling somewhat unsteady on a ladder, I've decided that I'll get the window cleaner to do it next time!

In Suffolk where I live we have a community group called Good Neighbours who will do many little jobs such as move compost, put up a picture, change a light bulb, book a bus ticket online and pick up prescriptions. We just phone a number, leave a message and someone rings back with a person to help. Invaluable especially in the lockdowns where the volunteers still did driving jobs with Covid restrictions. Look out for these wonderful people….

We are in the process of moving to a ground floor flat to make life easier for us and for family.

My sweet granny came to live with us an I think it really undermined my mother’s health.

We’ve no parents left now so no longer an issue. I do miss my dad though.

Have people checked if they are eligible for help? Our council run a cheap grass cutting service which an acquaintance uses.

I have a 96 yr old friend without any family who is very understanding and considerate of others to the point he doesn’t ask for help when he needs it. He’s getting better at asking a small group of us for help now he knows we WANT to look after him but there’s no expectation at all. He tells me that it’s not so bad being very old and there’s no reason to stop being a compassionate and thoughtful person but I suspect he’s been like this his whole life. The worse thing about getting so old he tell me is having your peers all die off and fewer people to understand where you’ve come from - he finds that he feels lonely because of this. He also says that ‘losing his marbles’ is what he most dreads. He tries not to think about that as he doesn’t want to become a burden and become someone he doesn’t like. Unless someone has dementia or something similar I think they probably just become an exaggerated version of themselves and if they’ve always been ‘difficult’ that doesn’t change. It’s very hard on relatives if that’s the case so I guess the thing to do is work on cultivating an habitually kind and thoughtful state of mind now and keeping fingers crossed dementia etc is not in the future.

I really try to not depend on my family (except when I have computer issues!). So far so good. I so hope I can continue like this.

We are downsizing and putting things in place so that we can pay for our care. I do not want my children put through what I am going through which is just as well as one of my daughter's is disabled, 2 of my sons have autistic children and my younger daughter has a husband with PTSD which has wrecked her life.

I looked after my parents and another elderly relative. My parents did not live near me, almost 3 hours drive, and it was a challenge but never a burden. It all fell on my shoulders (siblings did not help at all) but I wouldn’t have changed it. They weren’t demanding, quite the opposite in fact, they felt they were a nuisance and were stopping me from living my life, and they did question why my siblings didn’t help me. They weren’t a nuisance, but looking after them was part of my life at the time and I wouldn’t change that. They are no longer here and I am comfortable that I was there for them as they had been for me all of my life. Life is a series of chapters, all different. I will add that I am also a carer for my DH who has serious, life threatening illnesses, this added to the challenge.

I was taken to tea with a aristocratic old dear and tea was brought in by her carer who was black and from Jamaica. Offered a job there and then brought back to live in the hall. It was in the middle of nowhere.
I had extremely mixed feelings about this carry on, but when I visited another friend in the Cayman, the meal was cooked and served by a Black Jamaican. When I commented , as in ‘What ? As my friend was perfectly able bodied. She said that she was doing the maid a favour as there was nothing at home ( Jamaica) for her.

So how about that

Very good home near us, flats for single ailing people, bungalows for couples, it includes 2 meals per day, either in the restaurant or delivered to you. You have to be assessed by social services and to have lived in the immediate area for at least 3 years. Its run by a housing association and has developed a good reputation and a waiting list. Having had a demanding mother, even before dementia set in I don’t want to be a burden on family.

"travelsafar" I feel the same way. Although I have told my ACs as soon as I'm unable to look after myself to find me a residential home. I intend to move into a smaller place soon and I am looking at residential wardened places as a possibility.

I wonder also if one thing that may help is that many people of younger generations are used to buying in help. I have had someone to clean throughout my working life, something my parents wouldnt dream of, I use internet delivery for shopping, etc, obviously this doesnt solve the issue of care for complex conditions but may help in some little ways for those without profound needs. Many of the support systems will already be in place if you see what I mean.

At present I am 80. Living alone , in good health. I have no intention of my daughter looking after me. I have already spoken to my Gp about care homes if and when I require assistance, but at no point do I want or expect my daughter to be burdened with looking after me. That's not why we have children. These days are gone and children should not be expected to look after parents in their old age

I think the fact that you are worrying about this now, makes it unlikely that you will expect too much of your family.
The unknown, of course, is the risk of developing some form of dementia, and not being in control, but here we have to depend on care being provided.

I agree with Polarbear. The current generation who are in their late 80s or their 90s, simply didn't (mostly) have elderly parents when they themselves were aged 60+. There are now some people aged 60+ and 70+ who are expected (by their parents, in their 90s) to care for them. Meanwhile the 60/70+ folk may also be caring for grandchildren, never mind their own children....

This is a sobering thread - it has made me think ?