How to help my mum who doesn't accept/remember that she can't remember...

[Mr Rusty]

Hi there,

Thanks in advance for taking the time to read this and apologies for the long brain-dump. I'm not sure what I'm looking to get from this - advice, support or just a reality check would help I guess. Am I doing too little? What to do for the best...?

Some background,

My mother is a 85 and though in good physical shape and has suffered with short term memory issues ever since her husband died 11 years ago. Initially I thought that her memory problems were a result of grief - she has always been a bit of a blocker when dealing with anything difficult but as time has gone by her memory has gradually got worse.

I took her to the memory clinic three weeks ago for her annual visit. Up until now I’d had been told she had mild cognitive impairment but during the latest visit she was diagnosed with Alzheimer’s proper. Mum was so shocked – every time the doctor mentioned dementia or the A word she looked as though she had been told she had grown an extra head – incredulous and indignant…but then scared and upset. And the doctor mentioned the word A LOT.

The doctor left and we hugged and cried. Then a woman from the Alzheimer’s Society came in and gave her a leaflet inviting her to attend the monthly Dementia Café at the local Community Centre. She also suggested joining their singing group. Mum hates singing or anything musical so this didn't go down well at all.

We left, sat in the car, hugged and cried some more. Then when we got home she found the leaflet in her shopping bag. Studying it as if for the first time she exclaimed ‘Dementia? Well I haven’t got that’, tossed it aside and turned on the telly to watch Bargain Hunt. I didn’t know whether to laugh or cry.

You see the problem is she really doesn't thing there is anything wrong. She is very strong willed and independent - always has been very optimistic and cheery (sometimes I suspect as a result of blocking anything painful things out) and while this is an admirable quality, this is making it very difficult for her to accept any help. She seems quite happy in her own little bubble but can't deal with anything upsetting or difficult - it gets blocked out and forgotten. In the rare moments when I can actually get through to her, she crumples, cries and says 'who'd of thought I'd end up like this' which makes me feel terrible for bursting her protective bubble.

She lives on her own and although she used to keep herself busy by going out to play cards or to the local WI over the last year or so she has stopped these activities, preferring to stay at home and watch TV. She used to be the centre of her social hub but may of her friends have passed away.

The woman from the Alzheimer's Society said that the Dementia Cafe probably wouldn't be appropriate for her yet since mum isn't acknowledging that she has a memory problem. Other than that all she could offer was to put her on the befriending waiting list.

Up until recently she had very good neighbours who would check on her and bring her a meal every day (the neighbour was a dinnerlady and would bring her a school lunch which mum would pay for. We could only convince mum to agree to this by saying we were doing the school a favour by helping keep their numbers up!). But unfortunately these neighbors have recently moved away and so the meals have ended.

Her short term memory is really really bad but she doesn't get confused or lost forget who people are. She is able to wash, dress and do basic shopping for herself.

She drives about 500 meters up a hill once a week to get her hair done and I'm aware we need to tell DVLA asap about her diagnosis. I'm dreading having to re-explain this to her again because although she hardly uses the car, for her it represents a symbol of her independence - last time I suggested she might have to stop driving she burst into tears and told me she would rather kill herself than lose the car. I've suggested organising taxis to get her out and about but she is very much from the 'make do and mend' generation and thinks this would be a huge extravagance (even though it would only cost her a couple of quid)

Same issue with food. Now her neighbour isn't able to prepare her food anymore I've suggested meals on wheels or that I arrange a weekly supermarket delivery but she wont hear of it - she says she s perfectly capable of looking after herself. But I worry she wont eat because she will either forget or wont be bothered to cook anything healthy for herself.

I live a two hour drive away and visit a couple of times a month. I call her every evening to check she is ok and also to make sure she has at least a little conversation with someone even though more often than not we talk about the same things repeatedly.

I'm in the process of applying for Power of Attorney and mum has signed the forms but I feel as though I should be doing more to help her but I just don't know how.

Without wanting to this to be all about me, I have quite a stressful job myself and some other issues that I wont go into here but which mean I'm finding things a bit tough at the moment.

I have no siblings and all other relations are dead. I feel so very guilty all the time and like I'm a terrible son for not being strong enough to know what to do for the best. I want to protect her but also don't want to impede her sense of independence.

Thanks again for reading and sorry for the long read.

Mr Rusty

 

[clareglen]

She's unlikely to ever acknowledge she has a problem. It seems to go with the disease. Seems, reading on here, only those with early onset seem to acknowledge a problem. Don't know what to suggest as you're so far away from her, it is difficult. Keep doing what you're doing & maybe make the situation known to social services. Would she go to daycare? Call it a luncheon club.

 

[Mr Rusty]

Many thanks for the reply claregen. This is kind of what I was afraid of - by trying to protect her from the truth early on I've actually made matters much worse in the long term :-(

 

[ElizabethAnn]

Hello Mr Rusty,
I'm not an old hand at this - but thought I'd reply to welcome you to Talking Point and let you know that there's a wealth of information on this site and plenty of members with lots of experience who will be along to help...

There is quite a lot for us new ones to learn, financially & practically

Unfortunately, whilst all this is sinking in with you, it probably isn't (and won't) with your Mum. Probably best just to keep conversation simple and non challenging.

There's a great guide on compassionate communication that I've found a great help:

http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

Not sure if your Mum has been appointed a Social Worker?

Don't forget to look after yourself - you do have a life too.

Elizabeth.

 

[Mr Rusty]

Elizabeth, thank you so much for taking the time to reply and for suggesting compassionate communication guide. It already made me think in a slightly different and more positive way.

She hasn't been appointed a social worker, nor was it offered by anyone at the Memory Clinic. I should follow this up.

I'm really kicking myself for not doing the tough love thing earlier and helping her to see the onset sooner rather than later.

 

[ElizabethAnn]

Yes, I too berated myself for not picking up the signals earlier, but I've since come to realise that there was really nothing much that I could have done :-(

It's a very cruel disease and it marches on its way regardless, at its own pace, which seems to be different from person to person and day to day, sometimes even minute to minute :-O

I too live a long way away (12 hour round trip!) and only manage a few days every 4/5 weeks and like you, I phone daily. Yes I feel guilty about it - but am fortunate to have a wonderful sister who lives close - and we're slowly managing to get support from various organisations.

Every visitor that we can get to the house, on whatever pretext, is good:

Gardener; Window Cleaner; Podiatrist; Cleaner; Church visitor;

I did wonder if your Mum might think the cost of a taxi to her hairdresser versus the annual charge for Car Tax, Insurance, Petrol & Maintenance would make sense - but I suspect the concept is too difficult. Is there a chance that the hairdresser would do a home visit ?

Elizabeth.

 

[FifiMo]

Hiya Mr Rusty,

I too had a mother that was in denial of there being anything wrong with her and on looking back, as strange as it might seem, I think that this was the thing that kept her going and independent for longer. So, perhaps you should use this to your mum's advantage and whilst never mentioning the D word or the A word again, encourage her to do the things that she can still do. Where you think she has got things wrong - eg that she doesn't buy food or cook for herself then quietly perhaps help out - stock her cupboard up with things like tins of soup, tins of fruit, tins of cold meat etc (remembering that this is a generation that lived out of tins rather than the ready meals of today). If nothing else it will reassure you that there are things in the house that she can use if she isn't shopping for herself. Biscuits too - at the end of the day they are calories aren't they? LOL Another thing you could try is Wiltshire Farm Foods - they produce ready meals which she could microwave if you think she is able to do that.

Please also don't worry about the staying home watching tv. If that gives her pleasure and she feels safe and comfortable in her home - then let her be. Perhaps if anything get the people to come to her. How about contacting the WI for example and ask if they would visit her? Is there a local church? They often have members who go out and visit folks too.

You're doing a grand job in supporting your mum. Don't be hard on yourself. Forget all about the diagnosis afterall that is all it is - a word. It doesn't even tell you how things will progress for your mum as everyone is different. Take your lead from your mum and what her needs might be at the time.

Fiona

 

[Pickles53]

Mr Rusty hi and welcome to TP. So much in your post rings a bell with me except that mum has never driven so no car issue. Mum is virtually housebound unless I visit and I also live a long way away. There are a couple of practical things I'd suggest. One is getting an emergency call system set up where she would wear either a pendant or wristband all the time with a button to press if needed, the other is a key safe outside so that in an emergency a paramedic could get in. I managed to sell this idea to mum as a way of making me worry less about her, rather than for her benefit.

We have never had a SW, every area seems to have a different system. In mum's area the referral to the memory clinic resulted in her being assigned to a community MH nurse and he has since referred her to occupational therapists and physios in the community MH team ( though it took weeks before we saw the OT and still waiting for the physio to visit). I arranged one visit from a SW just before mum was diagnosed, but as mum can still manage all her personal care she told me mum wouldn't meet the criteria for them to organise any service. She gave me a list of recommended care agencies so I could arrange this myself. As mum is self-funding it doesn't make much difference and at least we can choose how much help we have and what we ask them to do.

The saddest thing is that now mum can't go to all the social activities she used to attend she barely sees a soul between my visits. With one honourable exception, the friends she saw when she went out have become invisible. I know a lot of them are elderly too and have their own health problems, but her church seems not even to have noticed that she no longer goes to services even. Doesn't seem very Christian to me either. Anyway my point in this is to keep an eye on this aspect as social isolation can itself increase memory problems. If you don't talk to anyone, your ability to interact declines; use it or lose it. In our case this has been the main driver for us to look into moving mum to a care home near us, as all other ideas have not worked out, but if your mum is still able to get out and about and is still content at home (mine isn't) this probably would be premature.

 

[ASH74]

Have you thought about a mobility scooter instead of the car? My FIL also very much in denial but the car had to go on medical advice.....he too won't use taxi's or community transport......but he does use his mobility scooter. In fact he is out more in that than he was in the car! (If you do go down this route, you can insure them against accidents, theft etc).


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[Wolfsgirl]

My Dad's car was outside the house for years after he stopped driving, we just didn't make a big issue out of it....

From what I have learned here, it may be she will not have to stop driving for a while. Horrible being at a distance but good she is still able to use the telephone

 

[2jays]

Welcome from me too

One thought I've had is have you got both LPA's sorted out - Lasting Power of Attorney for finance and health and welfare

You may not need them at the moment, but if they are not sorted when you do need them, it can be really complicated trying to sort them out in a crisis.

Keep strong. You are doing your absolute best for your mum. Doing your best is always more than good enough, your absolute best is amazing, despite what the guilt monster will try to tell you.

x




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[worn out]

had same problem with mum (there nothing wrong .Its you that are confused) also very lonely. solved it a little by "sneaking in " companion visits from a care agency. a s long as we didnt call them carers but visitors this seemed more acceptable. they are very nice and take her for little walks or car rides or just have a chat and a cup of tea.on the plus side i think her stroppy attitude keeps her going although frustrating for us.next problem how to get her to accept meals on wheels(dont think she eats properly)"ive been eating all my life"! YOU cant tell me what to eat.slowly slowly seems the way to do it. good luck and i definately recommend the "visitors "if at all possible.also age concern have volunteer visitors.(mum only agreed to that because the sweet man told her it was part of his training to visit people so she thought it was for his benefit). now she enjoys it.

 

[Pickles53]

had same problem with mum (there nothing wrong .Its you that are confused) also very lonely. solved it a little by "sneaking in " companion visits from a care agency. a s long as we didnt call them carers but visitors this seemed more acceptable. they are very nice and take her for little walks or car rides or just have a chat and a cup of tea.on the plus side i think her stroppy attitude keeps her going although frustrating for us.next problem how to get her to accept meals on wheels(dont think she eats properly)"ive been eating all my life"! YOU cant tell me what to eat.slowly slowly seems the way to do it. good luck and i definately recommend the "visitors "if at all possible.also age concern have volunteer visitors.(mum only agreed to that because the sweet man told her it was part of his training to visit people so she thought it was for his benefit). now she enjoys it.

If you crack the meals on wheels conundrum let me know, I'm tearing my hair out with the eating issue. Don't get me started on what we've tried so far..... Latest is we are going to try and get the teatime carers to be a bit more pro-active in offering to cook something for her eg omelette or something on toast.

 

[clareglen]

had same problem with mum (there nothing wrong .Its you that are confused) also very lonely. solved it a little by "sneaking in " companion visits from a care agency. a s long as we didnt call them carers but visitors this seemed more acceptable. they are very nice and take her for little walks or car rides or just have a chat and a cup of tea.on the plus side i think her stroppy attitude keeps her going

Could have same mother I might try the companion visits. My worry is they'll send someone different each time, from a care agency.

 

[FifiMo]

Can I just make a point about companion visits and in particular if the people visiting tend to vary. Please make sure that if you are setting these things up that the person with dementia has the ability to be security aware. There is a danger if people turn up at the door that they are invited in without credentials being checked etc. I am not trying to be alarmist but there are scammers out there and cold callers who you wouldn't want being invited in.

Fiona

 

[Dazmum]

Don't beat yourself up Mr Rusty, I played things down with my mum early on too, so that she wouldn't be upset or scared. I'm an only child too, and know the pressure that brings. You're doing your best for her and you've had some great advice here. Finding TP will hopefully give you lots of help and support not only practically with your mum, but also by giving you somewhere to come when you need some reassurance about your own feelings and worries too. Take care of yourself.

 

[clareglen]

Can I just make a point about companion visits and in particular if the people visiting tend to vary. Please make sure that if you are setting these things up that the person with dementia has the ability to be security aware. There is a danger if people turn up at the door that they are invited in without credentials being checked etc. I am not trying to be alarmist but there are scammers out there and cold callers who you wouldn't want being invited in.
Fiona

Very good point. I live next door so I would be letting them in. I'm on alert all the time. Ears like a bat.

 

[Mr Rusty]

I can't thank all of you enough for the the advice and words of support. It really means a great deal to me and I'm so glad that I have found this forum.

I called one of the women from her local WI yesterday to explain the situation and ask if they wouldn't mind keeping an eye on her when she attends meetings. The woman said they had suspected something was wrong for a while now, but that mum always seemed cheerful and happy whenever they saw her.

Pickles53, the invisibility thing is one of the things I find most sad. When she was in her 50s and 60s, even 70s, Mum would be out almost every night at various WI events. She was a County Chairman, very active in the markets and generally hugely sociable with lots of friends. She would do anything for anyone, driving other members to meetings etc. Yet now there is barely a soul who bothers to ring, visit or even write to her (apart from a few of her neighbours).

I've been recommended a book called Contented Dementia. Has anyone else read it? I'm ashamed to say that I haven't had the courage to start reading it yet but realise I need to bite the bullet.

Thanks again for such a friendly welcome to TP

 

[Beate]

I've been recommended a book called Contented Dementia. Has anyone else read it? I'm ashamed to say that I haven't had the courage to start reading it yet but realise I need to bite the bullet.

I have. It's quite good. The one book which helped me the most however was "And Still The Music Plays - Stories Of People With Dementia" by Graham Stokes.

 

[Mr Rusty]

Thanks Beate. I haven't heard of that one. I'll definitely check it out.