The beginning of the end.

[JennieLee]

I think my 95 year old mother is unlikely to live another year.

She's lost quite a bit of weight - having gone from 10 stone to 8. Not much appetite.

She is sleeping more heavily and for longer periods.

She has told me that some 'accidents' are occurring because she does not wake in time to go to the loo.

I think it is the weight loss that bothers me. I am not sure if she is remembering to eat or whether she doesn't eat enough nutrient-rich/energy dense food.

I've encouraged my mother to seek help with the accidents and also talked it over with my sister in law, so that someone living nearby knows. My mother hadn't talked to my brother on the grounds that he might find this 'embarassing'.

She lives independently and doesn't want a carer and the only help she accepts is a cleaner who comes every week.

My brother and sister in law do shopping for her and take her to medical appointments. My brother says she's fine. Just a bit slower and more tired and that it's inevitable. And that he doesn't want me to interfere.

I live some distance away. I'd like to be able to do stuff like buy extra/different food for her in case she fancied it and to check if she was eating regularly.

But I can't. I really feel I can't do much at all.

Your brother has a point. But it’s difficult for you, too.
Do you like to bake? Using a 24 hr courier like Royal Mail I’ve sent home made fairy cakes to DMil 400 miles away which have arrived fresh enough to be enjoyed. I’ve also sent photos of the family using a photo service. Little gestures like these won’t affect the day-to-day if she’s becoming more frail, but they might make her smile.

I understand your worry, but as the person in your brother's situation, it can be very hard when a sibling who lives a long way away starts making suggestions, when you are the one on the scene and doing all the work! I would tread very carefully in how you couch things to your brother or I'm afraid it will naturally be seen as interfering.

That said, you are allowed to be concerned about your mother and at 95 and living alone I understand you want to do what you can.
One of the biggest problems is that if your mother still has capacity, which it very much sounds as though she does, then ultimately things have to be her decision. You can make suggestions but I have learned that sometimes you have to let things go - however elderly people are, they are still allowed to make decisions for themselves and will fight tooth and nail to keep their independence.

The previous posters suggestions are great - there is nothing to stop you sending foody gifts to your mother... or anything else through the post. You could even send her an 'extra' gift food order via online supermarket.

As regards her accidents - I'm not sure whnat you mean by 'encouraged her to seek help'... where?? If she is happy talking about this with you rather than your brother then perhaps you could suggest she tries some of the many incontinence products available. You can research online and have something delivered to her... that's something you can easily do from a distance and take responsibility for.

I don't wish to sound harsh, but distance is now often not a reason not to help out, but is still frequently used. My own sister does it. So much is now done online, through phone calls, video calls etc, there are lots of ways to engage, support and help without actually being there in person.

I've had the experience of having a far away relative making helpful suggestions with my father-inlaw. Spouse and I were on the spot doing lots of hospital appointments, shopping, visiting regularly, cleaning squalid flat, chucking stuff out of fridge etc, moniitoring how much had/hadn't been eaten. And Spouse's brother would rock up to announce, 'I've brought him some breakfast biscuts. See he eats them' or to order lots of DVDs when my father-in-law was too confused to be able to work his DVD player.

With respect saying distance isn't an excuse is a bit sweeping.

If a 95 year old has macular degeneration and poor hearing, and isn't that good with technology she can only do Zoom etc if my brother visits and sets it up. We have to stick to old fashioned phone calls.

I can organise the buying of some food from afar and will be doing it.

But what I think she ideally needs is something like

a) batch cooking some wholesome food which is easy to heat up.
b) being dropped in on more regularly, but for the visits to be short because she gets so tired.
c) someone to help her liaise with the surgery which is asking people to do e-consultations primarily and take her there if they want samples to test for UTIs.

She can of course buy pads, but they are available on the NHS and I think it would be better for the GP to be aware of her condition. This is actually what my mother wants too.

It is simply daunting for her - as well as requiring her to overcome embarrassment - to get what she needs from a very overworked practice which is still trying to operate mainly online/over the phone because of Covid.

I am not saying that my mother doesn't have capacity and her need for dignity and independence doesn't have to be respected. But if she ends up in hospital because she's dehydrated or malnourished or has fallen because she's faint because of not having eaten, then she is going to be very unhappy indeed. So I need to work with her

I am liaising with my sister-in-law, who is - I think - much more 'tuned in' than my brother and I am very grateful for/to her.

I should add that the 'I can't do much at all' means that that there is little I can do actually to arrest the process of decline in the health of somebody who is very old.

There are some actions which will/would improve her quality of my mother's life in the time that remains - which might keep her on a plateau for a little longer.

In an ideal world my siblings and I would talk about this and do our best to reach joint decisions.

I do, however, come from a very dysfunctional background which complicates things. My mother values and respects her sons, but does not place similar value on my opinion. My younger brother - childless, single - has high functioning autism and doesn't really do communication - just monologues. Meanwhile my (childless) older brother does not wish to acknowledge that experience in looking after my elderly late father in law and three children could give me useful insights re caring. He is the oldest. He knows what to do/what is best. He is coping fine. He doesn't need any input from me, thank you very much. No, my mother doesn't need Attendance Allowance or any aids to stop her falling when she gets out of the birth or a riser recliner chair.

I think I wrote my original post, partly out of deep frustration, partly out of grief

I'm sorry if I seem to have pushed some buttons or upset you in my reply - it is a naturally very emotive subject and I do understand your frustration worry and feeling of impotence.

With regards to talking to the doctors and applying for Attendance Allowance or having an OT assess her for mobilty aids in the house etc, can you couch it with your brother that even though you are at a distance you are happy to take some repsonsibility away from him. All of those can be done on the phone / online and you could maybe suggest having areas of responsibility each. I'd be delighted if my 'at a distance' sibling did this. But I can also understand him not wanting to change some things he already has in place.

If you can ask your mother to have it put on her doctor's notes next time she speaks to them that you are allowed to discuss her care with them, then you should be able to discuss / ask for anything on her behalf. This may be a big relief to her. You said your brother does her appointments - do you mean he takes her rather than does any of the admin / calling?

Do you also have POA set up as that is quite critical?

I'm sorry you are going through this - it is an awful and inevitable part of family life for many, which doesn't make it any easier when it's your own parents involved.

No, it's fine honestly. Tnank you/ I mean, the situation is difficult - but I can imagine where you're coming from and the point that one can be of use even when not on the spot is very vaiid..

I do have POA and on my next visit to her will raise the question of whether she'd like me put on the Dr's notes so I can raise stuff on her behalf. The e-consultation/triaging is brilliant for young tech savvy patients. But not for my mother.

My older brother drives her to any routine appointments, Covid jabs etc - but is not proactive. On the one hand he does quite a bit of stuff already and also wants to respect her wishes, which is laudable. On the other hand, I think there's a level on which he always wishes to avoid difficult discussions.

Temperamentally he and I are different.

But when I next see him, I shall also raise the issue of taking on particular areas of responsibility. (Some years back I manoeuvred him into having a conversation about our very difficult childhood. Since then he has actively avoided situations where it's just me and him , in order to minimise the risk of my raising subjects he'd prefer to dodge.)

You say she doesn’t need Attendance Allowance. But if she qualifies for it, it’s worth applying for since it could pay for someone to drop in on short visits. It isn’t means tested.

It is my brother who lives near her - and who helps her with her finances - who said she didn't need Attendance Allowance. It is odd. As if as soon as I suggest something he is automatically opposed to the idea. I am a former welfare rights worker and we got AA for.my father in law.

Does your brother ignore suggestions from his wife? If so, then you're stuck, but if not, perhaps you could come to an implicit agreement with SiL that she be the one to "mention" ideas that both you and she think are worth pursuing...

Sympathy OP, it's horribly stressful when unreasonable barriers are in the way of getting important things done.

Would it be possible for you to arrange with your mum to apply for attendance allowance and use it to book a home help? Or to double the time the current cleaner comes?

Position is as an extra visit a week to tide her over, in case she needs an errand running or wants help with some chores- whatever you think she'd respond best to. Then arrange with that person that they'd check in with you, have a coffee with your mum, help her call the surgery, get things out of high cupboards etc.

I say this, as someone who arranged similar for mum only to have her quietly cancel it because she feels her family members should be doing it!

Agree that POA or LPA (Lasting Power of Attorney) is crucial - you go on a Govt website, it's around £80, you get the signatures in order, it can have two Attorneys you and your brother and I mean it for Health and Welfare, otherwise the State is in control, not you or your brother.

95 is a good age but you always want a bit more and you have to balance it. I mean, if you want to be there all the time, well you can't, but yes it would give them a bit longer but... The alternative is a care home, well, from my experience that's no bundle of laughs and it seems they get two years of fleecing the family fortune (to the tune of £120K or thereabouts) then it's curtains and on to the next one. Just my findings. And plus it's a power thing, you've no way of knowing what care homes are really like because the bent regulator the CQC suppresses its findings - often, as with the Sue Gray report, they delay bad reports for up to 8 months (not kissing) so they can say - as with the Sue Gray report! - that thankfully much progress has been made since. It's the cover-up culture. Once they've got their hooks into you, you're on your own. Don't expect the cavalry to come over the hill, they only fire at whistleblowers.

Forticrme is not cheap and I don't know if it can be prescribed that's good when it comes to getting food to punch above its weight. Pricey at £14 for four pots though.
Commode/table thing by the bed is thinking ahead because one massive foreseeable problem is stumbling to get to the loo, maybe with low sodium level where madness appears to set in, and falling - result bash on head, that could be curtains, or broken leg, often curtains too, all avoidable if only you had a commode nearby. Don't wait to find that out imo.

As far as your Mum's accidents are concerned, I would recommend something like the Tena Lady pants available in lots of different types and sizes. Boots do their own as well. They work fine and sound more dignified than incontinence pads, which might be a difficult subject to broach. She can pull on a pair of ordinary pants over them. My Mum began wearing them 'just in case' in her later years, as she wasn't able to get to the loo very quickly.