Living away from Mum

[Steve Ch]

Hello, My name is Steve. Looking through the messages on TP over the last couple of weeks it is clear that there are so many people out there dealing with and caring for family members with Dementia. I guess there are people out there in a similar situation to myself but I would be grateful for any ideas or suggestions that could help.

My mum is now 66 years old and with hindsight it is clear that the onset of of her memory problems extended well back into her working life. Mum retired at 60 and for a couple of years all seemed rosey, until sadly my father died suddenly of a heart attack. Mum initially coped very well with the loss and over the next year even managed to travel round the world with some of her friends. But things started to go down hill after this with a loss of confidence in travelling outside her local area in the car and the start of the constant phone calls. After seeing the doctor and being referred the consultant mum was diagnosed with dementia. Medication certainly stablised mums immediate problems but over the last two years she has been gradually getting worse.

Unfortunately both myself and my brother live a fair distance away from mum. I live over 2 and half hours drive away. We manage to visit every other weekend and I speak to her everyday although the conversationa are limited and now it is mainly to satify myself that she is home and safe for the night. Both my brother and I have fairly demanding jobs and I also have 3 quite demanding children. Mum still has some family close, and until the last 6 months was still helping my grandad (who has failed to have any sympathy with mums situation and thinks she should be put in a home, parents!!) We arranged through the social services for a carer to visit twice a day for the last 18 months and when she manages to catch mum in does help alot. My uncle also manages to visit once a week and the neighbours have been fantastic.

We took the car off her sometime ago (the incident with the 4 separate police regions involved is a separate story, fortunately no harm to mum or anyone else).
Mum has now got into the routine of going on the bus to the local town everyday and now mostly twice a day, with the days getting longer I am sure it could be three or even four times a day. At the moment the bus station is in the process of being altered, so she has taken to catching a taxi home. Which is fine but she fails to have any money with her and the neighbours end up having to pay (sometimes twice a day) Fortunately as I have said the neighbours are fantastic and very helpful, even if a little out of pocket by the end of the week. I am concerned how long their good will can last. My brother now gets daily calls from the neighbours and carer with details of mums latest exploits.

It is my opinion that mum is not now capable of looking after herself and I think that she could start to put herself at risk . I am very conscious of the advice given that we should try to keep people with dementia in their own homes and in environments that they feel comfortable. She has lived in the same house now for just over 41 years.
She is now not capable of even making herself a decent cup of tea. We ensure that there is always food in the house, but she seems to eat takeaways most days and drinks coke or orange juice. She was spoiled a bit by my dad and very rarely did any cooking herself for many years. The carer helps and makes meals for her but I don't know what is best for her in the future.

We have considered the options of her moving closer to us but I think unless it is into a care home I cannot see this happening. She came up to stay with us at Christmas and even though we have been in this house for nearly ten years and she has visited regularly, she honestly didn't know where she was and you could see she was very uncomfortable.

My brother is going to arrange a reassessment by social services to see if there is anymore help they can give. Mum to say the least is stubborn and understandably does not like any change in her routine. I struggle to see what other help they can offer other than a 24 hour security guard. I am very concerned about mum and I do not want to unduly upset her. When she was first diagnosed she pleaded with me that she did not want to go into a home and I cannot get this out of my head. I am also conscious that we cannot make her go into a home if she does not want to. So what else is there? I fear that there are some tough choices ahead. I feel so guilty living as we do, so far away and not being able to help more without totally destroying the career and family life we have worked so hard on over the last 20 years.

I am going down to visit mum this weekend, Mothers Day so that should be nice.
Any suggestions on what to do next will be gratefully received.

Many thanks
Steve

 

[Cloudwatcher]

Dear Steve,

Welcome to TP and I am sure you will get some sound advice from posters on here. I'm afraid I can't give you any advice but I am sure someone here will do.

The only suggestion I can make is to keep on at social services and get as much assistance as you possibly can for your Mum.

Lee x

 

[Margarita]

So what else is there? I fear that there are some tough choices ahead.

sure is some tough choices ahead .

does sound like your mother in the stage of needing 24 hour supervision.

All that could be done is getting a carer to live with your mother 24/7 , but I don't think SS would fund that as it be very expensive . unless your mother has that kind of money herself to pay for it .

 

[Jan W]

Hi Steve, you have my sympathy. My mum lives 1.5 hours away from me and like you I worry about her safety. She is 78 and was diagnosed with Alzheimers about 3 years ago. She lives on her own in a council flat with her dog. I work 3 days a week and do manage to visit once a week. She also has visits from her brother and his wife and her ex husband (my dad). The neighbours are great. One phoned me only last week to tell me she had seen mum wondereing around the gardens calling out for her dog she thought she had lost (the dog died 4 years ago). She has another dog and is constantly out walking him. I worry if we have a hot summer, she must walk miles with him and the summer heat won't put her off!
I have organised Meals on Wheels for mum. They provide a hot meal Monday to Friday. I told mum that the government provide free meals to anyone over 70 and she might as well have them. They send me the bill and I pay it. Mum likes to spend her money very carefully and would not want to pay for a meal each day as eating is not high on her priority. Drinking port at night is!! I ring her every evening and its obvious to me she has had a drink or two, but when questioned she swears she only has had a small glass. I have gone over to visit her in the past and she has a black eye and can't remember how she got it!! She has said she has woken up with it, I suspect she fell having been pi**ed the night before!
SS believe my mum has deteriorated over the last year or so but is not considered yet to be at risk. Mainly because of the network of support she has. I sometimes think that something awful will have to happen to mum before they will act. However they are supportive and do help where they can.
As a compromise, I think mum will eventually be moved to an independent flat that has 24 hour warden to keep an eye on things. The biggest problem will be getting her moved there, she does not like change and like your mum, is stubborn, but I will deal with it as and when it happens. I have a brother who lives in Switzerland and supports us sll financially but not emotionally I'm afraid.
I think my situation is a bit easier than yours, I am not the main breadwinner and can manage a weekly visit without any concerns on the family. I do feel for you, it is a terrible worry. I have thought about moving mum nearer, but this is not a good idea, they like their routine and mum would hate not knowing her way around. I have same problems as you when she visits me. One time, she thought she was at home and wanted to know who had parked their car in her garden!!
I hope you have some quality time with mum on Mothers Day, you sound like a very caring son and are doing your best. Don't beat yourself up about it (easier said than done) you have your own life to live and a family to care for. We have some difficult times ahead, but as this TP shows, we are not alone.
I wish you well.
Jan

 

[BeverleyY]

Choices are different for everyone.

My parents got old/sick - my sister did nothing but phone twice a day as usual.

My parents got old/sick - I sold my house (that I had only moved into 6 months before), got my parents to sell theirs and moved into a bigger house. (They gave me and my sister equal amounts of money). She banked hers, I mortgaged ourselves to the hilt to buy a house big enough for all of us, we had a 2 year old and an 8 year old.

Here we are 5 years on. Mum died 6 weeks ago leaving us now with just Dad who has Dementia - my sister, she calls once a day or every other day - but still she says 'oh dear Beverley, what a terrible mess for you'. Yes.. you.. as in me.

What am I doing now? Househunting, for a cheaper house in case I need to give my job up when Dad deteriorates.

So, as to your question 'what else is there?'... well, the answer would be different from each person that you ask.

Good luck with whatever choice you make.

Beverley

 

[SusanB]

Beverley

I am APPALLED to read your story about your story. Please tell me that you have talked this situation through with you selfish sister and how you have managed not to kill her. I thought my family was bad - your sibling situation has me gasping in disbelief!!!!

Susan

 

[jenniferpa]

While in no way wishing to minimize Beverley's situation (yes, how do you keep on speaking terms with her?) I have to say that that is by no means the worst story I've heard about siblings. Some of the things you read about here will make you gasp and leave you dumbfounded. Some people have had to more or less beat their siblings or other relatives off with a stick (or in fact the police) in order to stop their attacks on the vulnerable person's estate. Yet there is also tremendous generosity shown - you definitely see life at its best and worst here on Talking Point.

Sorry - touch philosophical there.

P.S. Beverley - if you felt like "spreading the joy" around you could intimate to your sister that there is no guarantee that should you at some point need to place your father in a care home, there is no guarantee that the LA might not come after her for money that was distributed. Honestly - I think they'd have a hard time making it stick, since the legislation talks about intent (i.e. funds may be reclaimed when the intent was to avoid care home fees), but that doesn't mean they might not try.

 

[BeverleyY]

Well, there have definately been times when I have felt I don't want to talk to her anymore.

My biggest dissappointment in life being that I spent too many moments having 'disagreements' with my Mum over my sister. Of course, my sister could do no wrong and I am rather outspoken and put my Mum straight on a few facts. I feel really bitter now that 99% of the cross words me and Mum shared were over my sister

This will make you raise an eyebrow. Last week I told my sister we were househunting. Oh she said, that's a shame isn't it that you will have to lose your house if you give your job up to look after Dad full time. When I pointed out that it was also going to be the second lot of moving fees associated with buying a house because of looking after OUR parents, she piped up at the end of the conversation. Oh, if you need a bit of money to help with the moving fees... I took a deep breath.. could it be that she would really offer to give me some of her fat inheritance... errrr.. NO... she said, if you need a bit of money, take it out of the money Dad has in the bank that is meant for the grandchildren!!!!!!!

So, she has their money sitting tied up in some investment account, and would rather her own children went without their inheritance completely than give me a tiny proportion of what our parents gave her.

I have asked myself if she is inconsiderate, spiteful, has no conscience or is just plain stupid that it really wouldn't dawn on her to say 'god, we were given the same amount, and you spent every penny of yours Beverley on housing Mum and Dad.. and I have done nothing to care for them...'

Oh.. and I do have to type this. We are going on holiday in 5 weeks and it will be a very welcomed break for us and the kids after losing Mum. My sister is already stressed that she will have to look after Dad for 2 weeks. She has told me she is not sure she will be able to cope, because she can't give him an insulin injection as it will make her feel sick!

Sorry to sound so full of cynical poison, but if ever I wanted to punch someone... it is my sister at times.

And... by the way, yes we are on very good talking terms, and my Mum did say to me 3 weeks before she died, in the ONLY moment that she recognised my sisters misgivings... that God would know how good I am.

I am angry with my sister - very... but, what go's round comes round they say...

Beverley x

 

[SusanB]

Dumbfounded...you are going to talk to her about this...aren't you, Beverley?

In the same calm articulate way that you have outlined here, I hope.

You are, aren't you? go on go on go on go on

S.

 

[BeverleyY]

Dumbfounded...you are going to talk to her about this...aren't you, Beverley?

In the same calm articulate way that you have outlined here, I hope.

You are, aren't you? go on go on go on go on

S.

To be honest. No.

I won't ask her for money.

If she isn't forthcoming enough to say, hey.. I don't deserve this, you take some so that you don't have to move etc.. then, I won't bother. Maybe, long after Dad isn't around anymore.. then there may come a point that I tell her just how I feel, and just how selfish I think she is.

She did agree that if I give up my job, that I should take Dad's income to go towards covering my loss in salary. Of course, I'm not so sure that Social Services would be happy with me effectively taking his £1500 a month pension as they may see it as restricting his capital from growing, and if a time comes he needs to go into a nursing home, then obviously, Social Services will want him to have as much money in the bank as he can.

Oh well.. I'll take a deep breath now, and expect her call at 6.45 sharp. When I will be asked: how is Dad, what is his sugar level... have I hidden the biscuits etc... she's full of handy hints on caring for him

Beverley x

 

[jenniferpa]

I'll rephrase this: I think you should tell her outright that if the financial situation becomes sufficiently difficult to manage that you have to place your father in care so that you can go out to work, that the LA will definitely be looking to recoup their costs from your joint inheritance. There is no time limit on how far back they can go over this. People sometimes quote 7 years but that's just for inheritance tax - there is no such limit when it comes to recouping care home fees. It would be to her advantage to help you keep your father at home. Lets face it, even if they (the LA) couldn't claw the money back, court costs could be horrible.

 

[helbo]

Oh I can relate to this so much ! My father in law died two weeks ago, my mother in law is going to need so much support. My husbands brothers wife fell out with his parents 6 years ago, and she and their son haven't spoken to them since. We are providing her main meal every day amongst other things, and he has just informed us that she will 'allow' him to do Tuesdays and Saturdays. That leaves 5 days for us to 'do' which doesn't really add up. She has told his brother that we must keep her at home because if she goes into care it will eat away about £20,000 a year from the inheritance. If she lives another 10 years, it's all gone. But she will be doing nothing. At the funeral she sat in the car until everyone had all gone in, then sat at the back, and after the service sneaked out of a side door and was last seen running to the car and going. Caring is going to be hard enough without someone like her in the family.

 

[BeverleyY]

I'll rephrase this: I think you should tell her outright that if the financial situation becomes sufficiently difficult to manage that you have to place your father in care so that you can go out to work, that the LA will definitely be looking to recoup their costs from your joint inheritance. There is no time limit on how far back they can go over this. People sometimes quote 7 years but that's just for inheritance tax - there is no such limit when it comes to recouping care home fees. It would be to her advantage to help you keep your father at home. Lets face it, even if they (the LA) couldn't claw the money back, court costs could be horrible.

I sincerely hope that they couldn't do that. From what I read (and understood) they can question where capital went if they think it was dwindled on purpose to avoid care fees - BUT when my parents came to live with us my Dad had no formal diagnosis. All that we knew back then was that his memory was a bit iffy, we had no idea the impact it would have later. He had a stroke a year after moving in with us. Therefore, when they gave the bulk of their money away, they had no reason to believe that they would ever need care - therefore, nobody could say they gave the money away to avoid paying for something that they had no idea they would need.

Beverley x

 

[jenniferpa]

Well that's why I mentioned "intent" in my previous post. However, much of the language is intentionally vague and it's the LA in the first instance who determine intent, which seems a trifle unfair. I would be surprised if the issue didn't come up, but probably it would be dropped. To be honest it's less about time since the capital went and more to do with situation at the time. While I can definitely see your point, the fact that he'd had a stroke prior to the move might mean that the possibility of a move to care might have been anticipated. Just playing devils advocate here. I did see one case where the person had done something similar but had been in their 80's but with no health issues who had a stroke less than a year after the distribution, and the courts held that there was no reason at the time of the distribution for the person to assume that they would need care (age was specifically mentioned in that it should be discounted). So just being old is no reason to assume that you'll need care. However if you have existing health issues, who knows how they will assess. I do know that the assessment forms ask you about the last property you owned (if you no longer own one).

 

[BeverleyY]

Well that's why I mentioned "intent" in my previous post. However, much of the language is intentionally vague and it's the LA in the first instance who determine intent, which seems a trifle unfair. I would be surprised if the issue didn't come up, but probably it would be dropped. To be honest it's less about time since the capital went and more to do with situation at the time. While I can definitely see your point, the fact that he'd had a stroke prior to the move might mean that the possibility of a move to care might have been anticipated. Just playing devils advocate here. I did see one case where the person had done something similar but had been in their 80's but with no health issues who had a stroke less than a year after the distribution, and the courts held that there was no reason at the time of the distribution for the person to assume that they would need care (age was specifically mentioned in that it should be discounted). So just being old is no reason to assume that you'll need care. However if you have existing health issues, who knows how they will assess. I do know that the assessment forms ask you about the last property you owned (if you no longer own one).

I think you must have misread my post. He had the stroke over a year AFTER moving in with us.

Up until that point, Dad had no health problems at all other than diabetes that he had had for at least 40 years.

Oh well, only time will tell. Hopefully, my Dad will never ever need to go into a NH. I hope that he dies of something else before he gets to the stage of needing 24/7 care like that. I know he'd prefer to be dead than live like that. He's made that perfectly clear, many many times.

Beverley x

 

[jenniferpa]

You're right Beverely - I did read that as a year before. Still, though, they'll ask about property should that time come (which hopefully it won't) and your sister won't be protected from the potential angst in that event. It's seems very unfair that you're the one with the worry and the labour and she just gets to say "dear, dear".

 

[Margarita]

They do say money is the root of all evils .

All the money in the world can't buy good health give us back are parents how they where before dementia.


you did make the choice to have your parents live with you not your sister , even if you did not know what was going to happen in the future with your father . but I was brought up with you made your bed lay in in now .

so the only way forward is , it that happen to me and I had a sister like yours is

I would be telling her to stick her money up where the sun don't shine , its not her money or the kids money I want its her support .

reads like your holding a lot of resentment toward her because of the money she got .

Oh.. and I do have to type this. We are going on holiday in 5 weeks and it will be a very welcomed break for us and the kids after losing Mum. My sister is already stressed that she will have to look after Dad for 2 weeks. She has told me she is not sure she will be able to cope, because she can't give him an insulin injection as it will make her feel sick!

tell her your going to go to the doctor and get him to get a district nurse to come out for 2 weeks while your on holiday to do the injection, I would not let her get away without sharing the care .


I made sure my brother done his part in sharing the caring before I found out how useless he is at it

 

[BeverleyY]

reads like your holding a lot of resentment toward her because of the money she got .

Yes.. I do have a lot of resentment. Not because I want the money, but because I simply don't believe she deserves it.

They did give us money, but I spent every penny of it on getting this house for my parents.... whereas she just has her in the bank and wouldn't dream of offering it back for anything in relation to Dad.

She didn't visit as often as she should have, and yes, the whole situation really angers me.

It's not about money, it's about support - and she gives me absolutely none whatsoever.

She has no dependent children hers are 20 and 21), no mortgage, no debts, nothing.

I have 2 younger kids (7 and 13), a huge mortgage, huge credit card bills that I have run up because my mortgage is so big - the only reason my mortgage is so big is because I bought this ouse for us all to live in (I had to double the amount of my mortgage, and double the term of repayment).

When they registered my Dad dead by mistake, I had to sort it out.

I care for Dad, I sort all his finances AND I have made myself worse off financially.

She has just no stress whatsoever and doesn't even seem to appreciate one ounce of the things I do.

It's not so much resentment I feel, but utter disgust and disbelief at her lack of a conscience.

Beverley x

 

[Margarita]

In every family they always a sidling that shoulder the burden of they parents more then other sidling . I can only talk from my experience of having 4 children 21 22 24 29.


you just must be stronger then your sister

.

I encourage my children to talk open with each other with any with any resentment they feel with each other , they tell me every thing moaning how unfairly they feel they been treated . but I tell them don't tell me tell you sister or brother, they can't talk talk to each other without me mediating , other wise they argue so much they would end up in a fight, but now with what happening with my mother they seem more closer to each other but its taken years for me to get them to talk to each other , or may be they just grown up fast , as my younger daughter was only 15 when my father pass away .

So my point is

She has just no stress whatsoever and doesn't even seem to appreciate one ounce of the things I do.

It's not so much resentment I feel, but utter disgust and disbelief at her lack of a conscience.

how do you know she does not appreciate what you do have you ask her did she tell you that ?


I don't know what type of childhood adult hood relationship you both had have , in that can you both not open up talk to each other , how do you know where your sister coming from if you both don't talk openly to each other . tell her what you feel now . tell her what your telling us how you feel about her .

you can talk about her behind her back and to your mother when she was alive. but why can't you tell her face to face in how you feel about her , why ? do you feel they no point as she just not going to change .

 

[BeverleyY]

how do you know she does not appreciate what you do have you ask her did she tell you that ?


.

She appreciates what I do.. because the more I do, it means the less she has to.

Maggie, I have said to her many times:

Why don't you come over more. I get told 'because it's too far'. We live in Ashford Kent, she lives in London. My husband commutes that distance EVERY day, and still manages to come home and do his turn for dinner.

She said it's awkward because she doesn't drive and they don't have a car (her husband does drive). I said, well you have £130,000 in the bank - take lessons, buy a car.. then you can come to visit every weekend. She said no!

Everything is.. I can't I can't I can't.

When I moan, she says.. what can I do, I don't have the space for them to have lived with us.

Well.. NEITHER DID I..! I had to buy a bigger house to enable that to happen (that doesn't bother me because I wanted them to live with me anyway).

There is a difference between the words I can't and the words I won't.

I have always had this philosophy that you change the words I can't for the words if I wanted to I could. Like this:

I don't have time come over = If I really wanted to I could find the time to come over.

I guess it all comes down to sacrifices doesn't it.

I was prepared to sacrifice my home to enable it. She won't.

When I need to, I will need to sacrifice my job. She won't.

She is one of those people with a million excuses.

No time, no space, got a job, need to cook the dinner for the kids etc... etc..!

When Mum and Dad came to live with us, I was not working. The house we bought was so big, that after 2.5 years I was forced to go back to work because we could not afford to keep living here otherwise.

Perhaps I am just not tolerant of feeble excuses.

Anyone can do anything if they WANT to. Kids, jobs, houses etc, you can find a work around any problem.

My frustration isn't the money, it's the fact that I just cannot understand how she can be so wrapped up in her own life and kids trivia of new boyfriends week after week that that took priority over visiting my parents.

I love my parents in equal measure with my children. Perhaps some would say that is wrong, but that's just how I feel.

Beverley x