Could this be 'over caring' for mum with Alzheimer's?

[Pebbles123]

Hi,
I'm new. My mum is 80 & was diagnosed with Alzheimer's about 18 months ago. She lives independently, still drives, walks the dog several times a day, uses the computer, goes to social occasions etc but is becoming progressively more forgetful & repetitive. She has always had very poor hearing which obv doesn't exactly help (2 aids) and has always been a bit of a stubborn character! Sadly her partner of 25 years has just died but she is so far coping well. My sister & I both live 4 hours drive away from mum but my older brother is nearer and visits her much more often with his wife and young son & sometimes his grown up kids too. His feedback re how mum is doing is always quite bad but on the phone she still seems fairly ok . He thinks she shouldn't be on her own but she tells me she wants less visitors and more peace and quiet! He thinks we should be acting now to organise more care for her but mum says she's fine and when I saw her a month ago we had a normal week end together albeit with lots of 'revolving door' conversations and less eating (she has really lost appetite) We all obviously have commitments that make caring for her our selves a difficult prospect logistically let alone the emotional/practical side of things but we are all naturally keen to help however we can, my brother has even suggested they move, sell my mums house and buy somewhere between them with a granny annexe so they can keep a closer eye on her. I find the mis match between what my bro says and what I hear on the phone and saw a month ago so strange & really hard to work out. I'm wondering if it could actually be my brother trying to almost 'over care' because he feels so rotten about the whole thing. Or of course I could just be getting completely skewed impression cos mostly only talk to mum on phone (but then last month face to face she didn't seem as bad as my brother says) Has anyone else had differing opinions to other family members re their Alzheimer's relatives ability/care needs? Sorry for long post. I'd so appreciate anyone else's thoughts. It's all a bit of an emotional roller coaster!

 

[Moray05]

Unlikely

Hi pebbles
Alz people can be very good at hiding what's actually going on with themselves, usually because they are living the life they used to have before the confusion kicked in and can be very convincing with it, even on a face to face basis. My advice would be to accept all the aids you can from friends, family, social services etc. Strangely from my experience (and many others, incl professionals) that men don't always realise as much as women the needs of the individual. So as much as this is a difficult time for you all coming to grips with all that's happening, I'm sure you're mums safety is paramount, prevention is better than cure for potential accidents.
Look after yourselves xx

 

[2jays]

All I can say is listen to your brother. He's "at the coal face" for want of a better saying.

Mum was able to convince my sister that she was fine. It was me that got carers breakdown.....


Sent from my iPhone using Talking Point

 

[Tin]

Its difficult picking the right time, one thing for sure though, this illness will mean that at some point what your brother is suggesting will have to happen, or something similar. Is this what your mother wants/will consider? If not then there is nothing your brother can do. But if it is, then make sure you and your family do some financial research, this kind of shared property purchase, especially with dementia in the mix, could become a real hornets nest further down the line if you need to consider a care home.

There are some really savvy people here, and can almost guarantee that somewhere here there is a member that has done exactly what your brother is suggesting, hopefully they will be along soon.

 

[Pebbles123]

Thanks....my mum is saying quite clearly at the moment that she wants to stay in her own property which is obv very understandable. If the annexe idea went ahead it would mean her moving to a new area (cos my brother has child's schooling to also consider) My bro works full time so it would be my SIL who would be 'keeping an eye' but they say she is intending to return to work soonn as well so am not sure how practically it would make much difference - basically mum would still be mostly on her own (at least by day) but in a different environment. Overall I think it could actually be detrimental to mums health to move her from familiar to unfamiliar surroundings away from friends and neighbours she has known for decades plus more importantly she doesn't want this. And from what my sister and myself observe (but only every few months or so) she is coping independently still ok anyway. I 'm confused by my brothers apparent rush for sorting out a solution when I can't see that mum is at that stage yet plus mum herself says she doesn't need or want assistance yet too. I have broached a social services assessment to establish her care need but she doesn't want this. I have broached meals on wheels but she laughed! She doesn't want to go to any support groups. Maybe like someone has posted she is good at hiding her difficulties and I know at some point we are going to have to make some very difficult decisions re care but I'm not sure the timing is now.. Have obv tried to discuss evthing with my bro but the conversations haven't gone well and he is hinting I am not pulling my weight with her care.

 

[lin1]

Hi. My experience is that some people with Dementia are good at hiding their symptoms for a while with visitors , proffessionals etc but because they can only keep it up for a while those that see them often, see them at their worst.

So I advise you listen to your brother and try to sort some extra care out, he is as 2 Jay's said, at the coal face.

I've been in hospital recently , a woman was admitted to my ward. She seemed quite normal and spoke very posh , the next morning you would have thought it was a different woman in the bed. But each time she had visitors she put her best for forward.

My mum used to put her best foot forward too.

 

[nicoise]

My mum didn't want help, cooked her own meals, showered, cleaned her house and so on. She would tell me, the doctor, her friends etc this. She wanted to stay in her own house, she didn't want to move to an easier place, she wouldn't go to friends when invited.

In truth, she did nothing. There was a mixture of denial, confusion, resistance but also she truly believed she did these things for herself.

She was plausible on the phone and in person. And was very much better at presenting a good front when she had company.

I think your brother is seeing more of the truth, and is trying to find workable answers to the problem, especially as it is falling to him as the closest to be her regular carer.

The problem is that the "sell house, use capital to improve new jointly owned property, then leave declining lady in new unfamiliar area with no friends alone in a house for 10 hours a day" probably is a non-starter.

Trust that what your brother is saying is probably much nearer the truth - and that his close proximity means that he no doubt feels guilt if he doesn't drop in regularly, and finds it difficult to step away, rather than "over-caring". This could be his cry for help on the caring front.

 

[betsie]

Hi
I have the same issue with my mum. I'm see her every day, get all the stressed phone calls and crying etc whereas my sisters who see her once a week, get the happy, near normal mum.

Believe your brother. The other fact is she is only going to get worse, the better prepared the family are the easier it will be for your mum.

My other thought on why she was ok on your visit was that she was so happy to see you it probably lifted her mood and did help clear the dementia fog a little for your visit. Also you were presumably staying with her so she had company and you were probably guiding her to do things without realising.

My mum went to the memory clinic Monday and the Dr told my sister she was high functioning!!! Sister thinks fab mum is doing great. 3 hours later mum is phoning me in a right state she is looking for imaginary cats ( up and down her road). The next morning I arrive and she is crying because her dog hasn't eaten its breakfast. I could go on but it shows how they can sometimes make others think they are doing ok when the reality is very different.

 

[marsaday]

I agree with what the others have said. There are probably more of us on here who have been on your brother's side - trying to convince more distant family that there is a real problem whilst the rest of the family don't see what the fuss is about.

Most sufferers will be very good at putting on a front and you are only seeing your Mum once a month or so. It's not likely that you are getting a realistic view of the problems.
Most want to stay at home long after they are fit and refuse carers/help in the house.

I think your brother is very sensible at thinking of the future. A crisis often arises and then families end up wishing they had prepared sooner. Yes a move to a granny flat would be disturbing but, then again, a move to a care home/hospital if a crisis arises would be even more so. There is probably no point trying to reason this out with her as she will not see the logic of it. This is one of the very frustrating aspects of early dementia and she will get worse, she will lose her independence.

I speak from experience of my brothers being in denial and me being the one at the coal face. Then Mum (then quite early/mid stages) ended up placed in a care home in an emergency. She never did get home again and is now in nursing care in the later stages less than 3 years later. Just to give you an idea of how quickly things can get worse.

 

[Cat27]

Another voice saying listen to your brother. He's seeing the true day to day situation.

 

[CynthsDaugh]

Before she moved in with me following a fall, my Mum lived 80 miles away (in a retirement flat) and I'd go to vist for the weekend once a month and talk on the phone every day. To me she seemed OK and was coping well.

When I told her neighbours that she was moving in with me several of them said 'that's good, for the best, we've been worried' etc. and professed to having been concerned about her for a while. They saw her every day, so could see the problems she was having that she hid from me & my sister, probably partly as she is our Mum & didn't want to worry us.

I would listen your brother, I wish Mums neighbours (a couple of whom I knew quite well), had felt able to talk a bit more openly about things but I think they didn't realise just how good Mum can be at covering up so I really didn't know how bad she was.

 

[Owly]

Practical things

When my Mum was diagnosed with early dementia I sorted out some practical things first -

Got all bills onto direct debits, so she couldn't bin or lose them or fail to pay

Went to bank with Mum/Dad and got myself added to their bank account as "third party for admin purposes" so I could sign cheques etc (Mum had dementia, Dad is blind).

Got financial LPA (Lasting Power of Attorney) sorted out for both of them, using a friend of theirs as witness signature. Very important to do this before mental capacity is lost, and it will be needed most likely if anyone is going to sell Mum's house.

As for moving your Mum, she's probably losing/lost the capacity to lay down new memories so she's definitely better off where she is at the moment. Sometimes when a parent moves into your home, they can't remember how to find the bathroom, simply because the layout is all different. Their dementia appears to worsen drastically, but really the extent of it was just covered up by the fact that they lived a familiar routine in a familiar place.

When it's time to move her, then full-time care would be best, not to a place where she's alone much of the time. Unless she had company all day, you couldn't stop her walking out the door and down the road in unfamiliar streets and getting quite lost.... possibly leaving the front door open too!! Sometimes this move comes about as a result of a crisis and a hospital admission. Then it's easier to move straight to care-home.

 

[Pebbles123]

Thank u so much for taking the time to reply. It's real food for thought. I find it hard to think that I essentially then need to stop listening to what mum says or asks for (eg peace and quiet/no help) & do what brother suggests (the opposite). It would be easier if I could actually see the evidence of her needing help but living a long way away makes that hard. To me she is still my mum who I listen to rather than someone that needs care. It is very sad.

 

[beverrino]

obviously everyone has different ideas about this - and every person with dementia is different and each of us can only talk about this from our own perspective.
I am my mums regular carer - my sister appears from time to time (that's another story I have spoken about before), and my brother lives 2 hours drive away.
My brother rings her every night and he has a totally different conversation with her than I would have had an hour earlier - or 10 minutes later when she is upset to me on the phone.
She is able to put a front on when talking to him - yes everything is fine, etc. etc. and when I take her to a professional - doctor, memory clinic, hospital etc, she is able to almost put on a front (later on it must be such an effort for her that she 'crashes' later).
I can appreciate it must be hard for you to see what your brother sees, but it is entirely possible that things change when faced with different people.
My sister tells me my mum 'plays me up', that is simply not the case. I have spent enough time with her that I understand her more than anyone. As she is aware of her condition - she tells me she knows I understand her and she feels much better when she is with me.
I hope it all works out for you Pebbles123 - we can only do what we believe to be right.
That's a hard one in itself, as I worry about her being too reliant on me, but things are pretty much on an even keel at the moment.
I too think you should listen to your brother - is it possible for you to spend a few days with your mum to get a wider picture on how she is?
But I disagree with her leaving her home and her familiar environment. I intend to keep my mum in her own home as long as I possibly can (providing she is safe). I think the radical change may be too much. I believe if I took my mum away from her home environment and the familiarity and routine - that she would have a rapid decline

 

[Chemmy]

I'm another one who would say listen to your brother, but I would question the wisdom about her buying into a new family home with an annexe.

They won't be able to sell off just the annexe if she ever needs the money to pay for her care, will they? That could cause difficulties if she then needs local authority funding. It might be seen as deliberate deprivation of assets.

And when she dies, how would the annexe become part of her assets to (presumably) be divided up between you and your siblings?

This has 'future family squabble' written all over it

I'd be looking for some independent financial/legal advice before proceeding down that avenue.

 

[cragmaid]

Hello. Yes it could be over caring, but...... A lot can change in a month, and also because you were staying with Mum her confidence may have received a boost.

My Mum was the most magnificent housekeeper ( not) She did her own laundry, ironing, cleaning shopping, cooking, maintained a social life...oh and was capable of driving her car. In truth, she was registered blind and had various other health needs.She had carers in three times a day to administer her pills, a cleaner to help with the laundry and a private cleaner in very fortnight. I did all her shopping, with her and for her. In her later months at home I went round every tea time to heat her M&S tea and sit with her while she ate it. I did all her paperwork, filing, even got her clean clothes out of the drawers each day to try to get her out of the dirty ones. I washed her hair, and supervised showers. I even cut her fingernails.

She would tell anyone that she lived a fully independant life. She was so plausible. Her consultant told me that Mum was obviously a very intelligent woman, because she was able to make up such wonderfully believable stories.

So why all this information about my Mum? Because I wanted to emphasise that, what your Mum says...and what your brother says....and what you see ... these are only ever going to be parts of the whole picture.

There a certain things which need to be attended to. Has Mum awarded LPA ( Lasting Power of Attorney) for both Finance and Legal and Health and Welfare? They should be done asap while Mum has capacity to choose.Has she made her Will ( and do you know where it is kept)? You should make copies or carefully " file" her Birth Certificate, Marriage Certificate, Passport and Medical Card and her NI number. I pointed out to my Mum that, if she should be run over by the proverbial bus, her affairs would continue to be run the way she desired. ( Internet Banking was a boon ) and that, for exmple if she had a stroke, the medics would legally have to take notice of what her " attorney" said.
Has Mum had a Needs assement from the Local Authority Adult Social Care? Has your Brother had a carer's assessment? Has she applied to the LA for a discount on her Council Tax? Is she qualifying ( by need) for Attendance Allowance, which is not means tested.

I think that you perhaps need to talk with your siblings more closely. Ask your Brother, who is the day to day contact with Mum, more detailed questions about Mum's wishes. Try not to let this become a potential arguement....you all need to work together for Mum's benefit and plain speaking can solve a lot of disagreements before they even happen.

Sorry about the long reply...

 

[Missy]

Hello. Yes it could be over caring, but...... A lot can change in a month, and also because you were staying with Mum her confidence may have received a boost.

My Mum was the most magnificent housekeeper ( not) She did her own laundry, ironing, cleaning shopping, cooking, maintained a social life...oh and was capable of driving her car. In truth, she was registered blind and had various other health needs.She had carers in three times a day to administer her pills, a cleaner to help with the laundry and a private cleaner in very fortnight. I did all her shopping, with her and for her. In her later months at home I went round every tea time to heat her M&S tea and sit with her while she ate it. I did all her paperwork, filing, even got her clean clothes out of the drawers each day to try to get her out of the dirty ones. I washed her hair, and supervised showers. I even cut her fingernails.

She would tell anyone that she lived a fully independant life. She was so plausible. Her consultant told me that Mum was obviously a very intelligent woman, because she was able to make up such wonderfully believable stories.

So why all this information about my Mum? Because I wanted to emphasise that, what your Mum says...and what your brother says....and what you see ... these are only ever going to be parts of the whole picture.

There a certain things which need to be attended to. Has Mum awarded LPA ( Lasting Power of Attorney) for both Finance and Legal and Health and Welfare? They should be done asap while Mum has capacity to choose.Has she made her Will ( and do you know where it is kept)? You should make copies or carefully " file" her Birth Certificate, Marriage Certificate, Passport and Medical Card and her NI number. I pointed out to my Mum that, if she should be run over by the proverbial bus, her affairs would continue to be run the way she desired. ( Internet Banking was a boon ) and that, for exmple if she had a stroke, the medics would legally have to take notice of what her " attorney" said.
Has Mum had a Needs assement from the Local Authority Adult Social Care? Has your Brother had a carer's assessment? Has she applied to the LA for a discount on her Council Tax? Is she qualifying ( by need) for Attendance Allowance, which is not means tested.

I think that you perhaps need to talk with your siblings more closely. Ask your Brother, who is the day to day contact with Mum, more detailed questions about Mum's wishes. Try not to let this become a potential arguement....you all need to work together for Mum's benefit and plain speaking can solve a lot of disagreements before they even happen.

Sorry about the long reply...

MY FIL managed to convince us (we live four hours drive away) that all was fine on the phone and he time and time again said he needed no help. The truth was that he stopped cooking and virtually stopped eating or even getting up for a drink, ended up falling in the night and the police had to break in and by FIL ended up in hospital and then a care home.

Re the annexe, I would be very careful - as another poster has said, if LA funding is ever needed for a care home (and don't under estimate how stressful looking after an Alzheimers person would be day after day, week after week then if your Mum has paid into the family home they might count this annexe as part of her assets when doing a financial assessment.

 

[DMac]

Hi Pebbles123. I'm also quite new to the forum. I recognise your situation from a slightly different perspective. My mum-in-law has early stages dementia. She has 4 adult children, and I'm married to the eldest. She lives about 20 minutes' drive away, and I see her roughly every other day. My sister-in-law lives across the road from her, and it's fair to say, bears the brunt of the daily crises. As I see M-i-l quite regularly, I also see quite a lot of the difficulties she is facing, and the effects on my s-i-l. My two brothers-in-law, however, live some distance away, and nowadays see her about once a week. It's fair to say that some time ago, there was some feeling of resentment building up between my s-i-l and the 2 distant b-i-ls, because, as others have experienced, M-i-l is very capable of putting on a front and pretending everything is OK when clearly that is not the case, and the 2 distant b-i-ls initially could not see this. However, the 4 siblings now have regular get-togethers at our house (a sort of neutral territory), where they discuss and decide upon various issues. It may sound a bit 'corporate' but I do believe it is helping. Not only are the 2 b-i-ls visiting M-i-l more often, they are also taking on more of the tasks that have cropped up recently. For example, one of the distant b-i-ls has agreed to sell her car for her when she feels (or more likely, is declared) no longer fit to drive (her car is currently sitting disabled in her driveway, while we await the pontifications of the DVLA - see my earlier post!). It was such a relief and a great weight lifted when he volunteered for this one - and I suspect it also helped to alleviate his sense of guilt for not being so close by. Perhaps there are some specific things you can do to help, that can be done from a distance? It's obvious that you care very much for your mum, so please don't feel patronised if i offer some advice - I will anyway! As others have advised, please listen/ talk to your brother. You can't anticipate every possibility, but there is much both of you can do to plan for the near future to ensure your mum's wellbeing and safety. There are many options out there, for home care as well as care homes. Talk to people, do some research, keep thinking and planning. I wish you well. Take care.