Advice coping and caring for elderly Mum living in her own

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Well - I have just read few a few posts and think should I feel 'down' and near to 'tears'. The problem is like many of you I feel I am 'sinking' in my head and physically not good.

My Mum is 94 years old (I am 72) in fact when she went into hospital last I was asked if I was her sister. My husband and I have been married 50 plus years and he tries to help all he can. We live in a village 4 miles away from where my Mum lives on her own in an upstairs flat (she has a stair lift) and a personal alarm around her neck. We have tried wrist but she has decided it gives her bruises.

She had her first TIA in August 2016. She recovered quickly and has had 7 more instances of similar episodes where we have had to do 999.

On the first TIA we arranged that she phone in the morning to say she is 'up and doing' she phones at night to say she is getting into bed. BUT she doesn't consider 10.30 at night late.

My heart goes in my mouth when she doesn't phone in the morning and we have to get in the car and drive to her flat wondering what we are going to find. We have found her in all states of collapse. Only once did she use her alarm because she obviously was not aware of what is happening.

On 3rd Sept was the last time - no answer - so back into hospital. She did not do so well on memory tests but OT came out yesterday and felt she was such an independent lady that we have to go along with her wishes. Two years ago I got her to accept the local Home Care Team to come in once a fortnight to 'do the high bits' as she calls it. I wanted to get her used to someone in case she needed more care. (She will not have any extra help reckons she can do it all herself and they are too expensive.)

She is very unsteady on her feet, she now uses a walker in her flat relies on me completely for 'bills' and has said to us her memory isn't so good. She has severe Lymphedema in her legs,

This every day on call is beginning to really get to me, that's besides all the hospital appointments. If I couldn't drive then things would have to change.

Just before the TIA in August I asked my brother who lives about 20 miles away to start visiting - he would only do 1/2 times a year visit and odd phone calls. At that time I was taking her shopping once a week and tie in a lunch, have her for a Sunday afternoon and dinner - she never wanted to go home before 10 pm.

My other brother lives in London and comes every couple of months and only wants to do 'nice things' with her.

She trusts me completely - is getting on with my brother better because he has kept up weekly visits, shared hospital trips BUT she says 'he is just like his father' that's not good especially around money and she doesn't like his wife and they fell out years ago.

This morning I had got to 9.20 and her neighbour phoned to say her curtains were still drawn. My heart goes in my mouth - I phoned and she had just woken up.

Last night my husband said it was getting to much for me as any question she has I get in the car and go. Sorting out her finances - she isn't remembering what is paid for. (I have put everything for her in a ring binder and sectioned it. No she can't remember that and still asks the questions.

OT yesterday when he visited her asked her questions - passed most of them e.g. year, count back words, etc, etc. A few days ago she couldn't use her microwave or her TV so I sat and drew instructions.

I know she isn't going to like it but would it be unfair for me to tell her I would like to do morning calls and she can phone my brother to say 'goodnight' and we know she is in bed?

I am scared if I phone her too early and she falls, doesn't press her alarm she could be there all night. Then the family backlash - I could see coming.

So sorry - I know you are all struggling. But any ideas? My son has said 'Mum - I am worried something is going to happen to you and Gran is still alive' I had aggressive breast cancer in 2007 and no back problems. This wasn't helped when we had to get her on the floor in the recovery position on one of the episodes as she became unconscious.

Thank you for letting me get this out in the open. This starts to pull families apart so it seems rather than them pull together. All the small cracks seem to open up that have been there for years and I am the eldest but the nearest to her so first on call.

P.S. Have tried to do Tai Chi again - this last year just hasn't happened because something always happens with her. Physio recommended Nordic Walking to help de-stress and strengthen my back. First session on 4th September and instead cancelled as up to hospital. At end of each day I feel mentally exhausted and not in mood to face our housework/meals - just feel so tearful. Even having to take our little dog in for an op - I am saying to my husband you will have to do it in case she doesn't do her morning call.
Sorry for quick reply I'm just dashing - I know otherws will be here shortly.

Just one quick point - you talk about the family 'backlash' should anything happen to her.

Er, tell your waste of space brothers who do SOD ALL compared with you that they can GET STUFFED!

ANY 'backlash' from there can go where the sun don't shine!

Sadly, families often 'dump their parent in need of care on 'one' of the siblings, and then the others blithely run off and get on with their own comfortable easy lives.

Now, maybe there isn't a great deal more your brothers can do, but 'kicking off' if 'something happens' to their mum is absolutely NOT ACCESPTABLE. I hope your husband will tell them that VERY LOUDLY!

Finally for now, please make sure that your mother's will does NOT split her estate three ways, ie, with your brothers getting equal share. Obviously you deserve MUCH MORE than them. They should agree to this straight off. If not, it says more about them than is polite to say!
Hi Gilly
Welcome tot he forum, it sounds like it is time to organise some outside visits for mum just to do the checking up each morning and help her with bits and pieces. It will take the pressure off you and free up some of your time that you spend waiting around just in case the phone goes.
Try ringing Social Services and get them to do a needs assessment for your mum. Depending on her level of savings she will either be self funding if more than £23,250 or SS will be able to help supply some care for her. She may well not like it , and may well say she doesn't need it . I can still hear my dad's favourite words, "No I don't need any help, I'm fine- my daughter does it!" many of us have heard that many times over but there comes a point when you need to put yourself first , or else the stress will make you unwell.
Please give SS a ring and let us know how you get on.
Thank you for your replies and support. I haven't been able to login - was locked out.

First of all I think the 'moans' I have pale into insignificance when I read other peoples lives. So I don't think i will post on here anymore as there are others worse off than me.

Actually not really happy with Goodmorning from Somerset. I don't think for one moment my family will look to this site for support but I would not like them to put 2 + 2 and work out it is me. I have enough to cope with without that question although remotely arising.

But just to cover the area you mentioned in your replies. Thankfully my mother rents her flat, so no property, she made her Will a few years ago. I took my mother to the solicitor and he asked who would she have as her executor and she named one of my brothers because he was the 'intelligent' one (he is her golden child) and when he said it is best to have a second she said it had better be 'me' then. Don't get me wrong she is nice to me and we get along fine - but - she totally depends on me.

As for help around the flat and anyone coming - the hour once a fortnight is a struggle to keep her to it and she threatens to stop it. Why - because she can do her own housework she only wants the high places done!!! It is so sad and I can fully understand that need to keep your dignity, etc. I tell her i would be quite happy having a cleaner but she doesn't 'get it'.

Yesterday I went to see her and she was suffering with pain in her knees, very wobbly and thinks her eye sight has got worse. She had on the wrong glasses.

She is getting confused over money and I did raise the subject in a caring way, with an Age UK leaflet, showing simply what Power of Attorney means. I said she could elect me and then if she went into hospital and something needed to be paid I could do it for her. She felt there was no need she gets everything ready.

I just feel as though I want to do as little as possible - which is sad - and let things takes their own course. I will do the phone calls but extra trips to see her I will leave out. This morning I am trying to arrange two hospital appointments for the same day. It is a round trip of about 60 miles each time.

Thank you for listening but as I said my worries pale into insignificance.
Hi Gilly
That is sad that you feel you need to leave. I honestly don't think your situation pales into insignificance. Heart ache and upset is that, whatever the reason. The forum is a place to vent, for whatever reason. Consider staying with us.
Don't leave! NEVER think your troubles are insignificant compared to other people's. If they have YOU in tears and you can't cope any more, then that is enough. You CAN make things better.

I was not and have never been a "full time, full on carer" in the 24 hour a day 7 day a week, getting dressed and bottom wiping sense. But doesn't mean I haven't been on my knees with my situation. And I have found lots of help and support here, from kind people who have much more on their plates than me, but are generous and kind with their moral support, advice and guidance. They will be to you too.

I won't bore you with my situation in detail! But my Mum was caring full time for my Dad who had v complicated needs. She now can't look after him as she has dementia herself. However neither of them want outside help. They want me and my sister to do it all. (More my poor sister as "she doesn't have kids"). It has been a hard year and we have decided what we can do and what we can't. And for what we can't do we have put outside help in place. Dad is sadly in a nursing home, Mum is at home with someone in every day sometimes me, sometimes my sister, sometimes a carer. It sounds to me like you could at least do with someone popping in on her in the morning to take that load of? Neither of them like this, But they are safe and well cared for and with my Mum at least we are starting to have nice times together again. Rather than it all just being a horrible awful chore. I wish upon wish I had insisted on outside help sooner as we have been through 6 years of worry and hardship with them.

I won't criticise your brothers as I don't know their situations. But certainly not bad to ask for more help from them. And if they can't provide it then outside help it will have to be. Regardless of whether they or your Mum like it. But just decide what you CAN manage and take it from there. You have a right to a life too and it sounds to me that care of your Mum is taking over.
Take care, things CAN get better,
Hello Gilly,
Thank you for listening but as I said my worries pale into insignificance.

Yes, you may consider that you have it 'easy' compared to some but everybody's worries are significant and this is not a competition ! We're here to try and support ALL carers, no matter whether they care for a few hours a week or 24/7/365.

If you want to change the title of this thread please let me know by pm and I can do it for you - you and the others that have responded to your initial post will still get email notifications of any further replies but just with the new title.
Hello Gilly,

Firstly let me say noone looking after someone with memory difficulties has it easy compared with anyone. It's one of the most difficult and frustrating things to cope with and I say that as a 24/7 bum wiping carer whose partner has really quite mild memory problems. I have some insight into what it's like trying to help them help themselves when they just don't remember. And into seeing them trying to be their former selves when they can't remember their current limitations (eg trying to get out of bed to go to the toilet because they forgot they couldn't walk) which is always heart-rending. My personal take on your situation is to remember she is your mother and by the sound of it is mentally robust enough to cope with a bit of a reality check. Explain to her the effect she is having on you and discuss how she, as your mother, can help the situation. Explain that you love her dearly (assuming that you do) but that you cannot cope with the stress she is putting you under with her refusal to accept help from anyone else. Discuss how she can help you by allowing a few small changes. You say she doesn't treat you badly so she cares about you but is not fully aware of the effect she is having on you. If she realizes she is doing this to help you she may be amenable to taking some steps towards helping you. Discuss her fears about having help and try to find ways to address them. There are usually compromises that can be reached and which once she's got used to having help she may find she doesn't need to compromise on as much. Try to get her to agree to a small limited amount of help in one particular area, stressing that it's in order to help you and once she's had that for a while she may well be more open to accepting more, especially if she realizes she gets more company that way. Of course she won't remember but once you've had the conversation once it'll be easier to have it the next times.

I know she relies on you and feels she can't do without you but stress that you will still be there for her but in a happier and healthier frame of mind and maybe able to visit just to relax and chat over a cuppa or whatever.

I have tried some of the above on my partner who depends utterly on me emotionally but he is able to understand that accepting some care from outsiders is part of the looking after me that he has done since we met that he can still do. It also gives him some new people to talk to and gradually we are prepared to accept more help from them. Your mother may find these benefits too.

As far as phoning you after your bedtime, perhaps you should consider switching off or muting your phone at bedtime? Difficult to do but worth considering. Of course if she had some element of care this might force her into some sort of routine which might make her bedtime more regular. Personally I've never regularly gone to bed before 10:30 in my life but you need to set the limits which are right for you.

Think about how you would deal with the behaviour in a child growing up and try to use similar strategies to moderate her behaviour.

Stop blaming your siblings they may have taken the best approach by not trying to do the impossible and effectively forcing you to deal with the situation another way.

I wish you all the best and hope you are still reading this forum even if you don't wish to post on it again. But I hope you will feel able to post again if you want to. You really aren't having it easy compared to anyone else. Just different.
Thank you all for being so kind. I have to go out to an appointment this morning. I will read them carefully this afternoon.

My Mum has just phoned to say she is 'Up and Doing'. I think it is this stress every morning since last August that have got to me. I know there will be another time when she doesn't call. Then we make the journey to her flat, see those curtains not drawn back, send my husband in first and my heart is bumping and my legs shaking.

So it has happened 8 times since last August so with say 2 weeks after for hospital visits and recovery time it almost seems like just over once a month it is happening.

In between all this are the usual appointments to arrange and get her to, take her out for lunch when she is well enough, visit at least once a week or more to see to whatever she has a problem with. Husband takes her a Sunday lunch and when he gets back we have ours.

Since the last few episodes she now phones to ask if I am 'in' as she wants a bath so will phone to say she is getting in and phones to say when she is out.

Yesterday I got back from taking dog to vets - I phoned to say I was back. I told her where I was going but she had forgotten - hence - she said I have been ringing you. She told me about the call so I had to deal with that next.

I am not blaming my brothers - it is just the unspoken attitude e.g. one just wants to come and do nice things, the other said surely she doesn't need to go into hospital each time just get someone to help you lift her up and put her in bed and call GP.

My answer to that is the ambulance would not take her if she needn't go and you haven't found her in a terrible state each time. I just feel everyday it is waiting for the next time and I can't relax in between. (I haven't said about our own personal problems we have to cope with.)

I will read your kind messages as I said and give them a lot of thought. I know they say a problem shared is a problem halved. Oh! My husband is always up by 7 a.m. and so our day starts then - he has his afternoon nap and I can't fall asleep. Hence that is why on many a night I am ready to get into bed by 10 pm with a book. But until that call comes to say she is going to bed you just don't know whether you are going to have to get out again.
Gilly, what you describe goes to the heart of the Care Conundrum - that your life is basically being 'taken over' by the (increasing) needs of your (declining) mother......and that is the real, real source of the pressure you are under.

You are ALWAYS 'on duty'....'on call'....waiting for 'something bad to happen'. You can never fully relax.

And, most stressful of all, YOU are not in control of the situation - your mother is (or rather, your mother's declining abiity to live a fulliy independent life).

It creeps up on us, this elder-caring business. It can start very simply, just us mentally turning into 'parents' in 'looking out for Mum/Dad' etc (in my case my MIL), and then little by little, insidiously, the 'looking out for' turns into 'looking after'. Little by little we do more and more, and have to wrestle, as tactfully as we can, with the fact that they do not REALISE how 'declined' they are, and if they do, they are, naturally, afraid of it, and try and resist it as long as possible - often making things HARDER for us in the process! (It can be something as simple, say, as refusing to use a wheelchair when we take them to the supermarket because they say 'Oh, I don't need that!' a simple shopping trip takes three times as long as they hobble round excruciatingly slowly leaning on their trolley!)

I would say with you it's time to sit down with your husband, having written down, as you have here, but perhaps more detail/comprehensively, everything that 'caring' involves for you. Write down 'what mum can't do any more' in one bullet pointed list, and then 'what I do for her' in another, and then 'things I'm afraid of' perhaps on another. You couls also write another list saying 'Things mum can stil ldo on her own' (because it sounds like there's a fair amount she still can do)(a sub list could be 'Things mum WANTS to do, but really can't any more'!)

It will, I hope, help you to get a 'top down' view of the situation both AS IT IS now and AS IT IS LIKELY TO DEVELOP (for, sadly, unless, say, one of those episodes proves fatal, her decline will continue inexorably).

When we 'slide' into caring (and most of us do 'slide', almost unnoticed often!), we see it from 'bottom up', and we are so busy dealing with the every day 'one thing after another' incidents and daily routines, that it is often only when we draw back, draw breath and try and look at it 'top down' that we see if truly for what it is.

You say your situation isn't as bad as some folks, and that is true, but for each of us the situation we have is the one we have to deal with and cope with. NO ONE comes to this forum without being 'under stress' in some way!

So, I think a clear and calm discussion with your husband, and ask him what he thinks of it - frankly - as he may be 'holding back' for example (I dare say he has some 'views' about your brothers by the way!), and see if you can come to an agreement about what you 'should' be doing - not in terms of what your mum wants, but of what is 'sustainable' for you as a married woman (and taking into account the other difficulties in your life - no need to describe them, if you don't want to, but they have to be factored in, don't they).

Having talked things through with your husband, I think a meeting with your brothers Ito tell them truly 'what it's like' is overdue. Both of them seem to be living in la-la land as far as their mum is concerned, either denying she needs the support she does, or denying she's as frail as she is (eg, does she really need to go to hospital), and generally behaving in a way that says they don't want to think about it, or face up to it, and least of all actually DO anything about it. They just want it to drift along, with them doing only the 'nice bits' while YOU carry it all from underneath.

(I sounded off in my first post about them, and I do mean that - if they do not HELP then they can keep their mouths shut!!!!)(and did you mention the dread term 'golden child'?? That one can REALLY shut up!!)(Sorry if I got that wrong.)

I think what is clear is that you need to (a) see where you are now and (b) come up with a sustainable way of going forward and (c) plan ahead for further decline and what will be necessary then.

Remember - one of our key mantras on this forum is: It's not a question of what they WANT, it's a question of what they NEED.

The two are often not the same!

Wishing you all the best, and I think the key thing is to 'regain control' of the situation, far more than it sounds you currently are. This may well mean mum changing her ways, accepting things she doesn't want, but the alternative for her, if she does not cooperate with what YOU can sustain and cope with, is that she may end up in residential care. If YOU crack catastrophically that is no use to her at all!! (and pretty grim for you too!!!!)

Kind regards, Jenny