Help!! Mum is 88, I am 68 and she only wants me!!

[Joan_1501]

Hello,

I am an only child (married with one daughter and a six year old grandson who live 50 miles away). I am my mother's main carer. She lives six miles away from me. She has severe osteoporosis, and short term memory loss. She continually says she is poorly and recently says she shouldn't be on her own all the time. I go every day (except a Wednesday when I go of an evening) and stay for five hours or more. Whilst she can wash and dress herself and straighten her bed I do everything else, including helping my husband with her garden. She needs prompting with medication and putting clean clothes on (although she does remember mostly to to put clean underwear on) .

District Nurses go in every four days to re-dress a large sore on her leg (it has been like that for two years as she cannot tolerate dressings and ends up removing them..although denies that she does so!). They also put her a morphine based patch on her back for the osteoporosis. I used to do that for her but then she get asking me to remove it and became very distressed if I wouldn't do as she asked. In the event the G.P. decided that the best course of action would be for the D.N.'S to do it, so that I could tell Mum that I wasn't "allowed" to stick it on for her.

She will not go to day care - tried it once but didn't like it....said she wasn't up to going. Nor will she go for a short stay anywhere to give me a break. Last year she had agreed to go in for two weeks, but the week before refused point blank to go in!! I was really angry with her and did shout (a representative from S.S.D. visited to try and persuade her to go in but to no avail! In fact the S.S.D. social worker said that whilst she could understand my point of view my mother was able to make her own decisions and that I had verbally abused her!!!!).

However, I organised private carers to go in three times a day, meals on wheels daily and we did go on our holiday, although I spent the first four or five days worrying about her.

Prior to going on that holiday I had been visiting my mother twice a day - four hours plus during the day and a couple of hours in the evening. On our return I decided that I would not go back of an evening and that I would also have a "day off". Mum was not happy (and still isn't) with the arrangement. On a Wednesday she phones throughout the day and our voice mail is full of messages (ten!!) when we get back home!! Whilst we have managed to get away on a few occasions it has always been very stressful in the lead up to us going..Mum wanting to know why I am leaving her when she is poorly etc. etc.

I am the only person who visits her. She has no friends or other relatives. Has always been one to keep herself to herself. My daughter (who works full time and has a six year old)phones her Grandma once a week and does get over about every six weeks to see her.

My mother will not entertain the idea of a volunteer visitor. She says that she doesn't want "strangers" looking after her...only me!!

I have a very supportive husband...couldn't manage without him. About four years ago we suggested to my mother that we built an annexe for her on to our home, but her first words were that she didn't like the village we live in! She said she was pleased we had asked her but declined the offer.

Recently she has asked if she can come to live with us but I have said no, that I couldn't cope and she became very distressed. I feel guilty all the time, but deep down I know that looking after her full time would be a nightmare and that my husband and I would have even less time to spend doing things together.

I feel very resentful that my husband and I are not able to do the things that we planned to do in our retirement years, and I admit that I do sometimes lose patience with her and shout! I know that I shouldn't do because of her dementia, but even when I retired 8 years ago (before dementia set in) and we had been on holiday to Portugal, she said on our return that she hoped that we wouldn't be booking any more holidays abroad as she had been poorly whilst we were away!!! Three years ago when my husband retired, instead of the long holidays we would have liked to go on we went about every six weeks for a couple of days..as in Blackpool, the Peak District etc. My mother wanted to know why we were going so many times and said that we were "copying" people!!!! Arghh........!!!!!!

Sorry that I have rabbbled on....it's good just to get it all down on paper!!!
And I am sure that there are many other carers like myself out there who are tearing their hair out!!!!!!

Thanks for listening!!!

Joan

[bowlingbun]

Hi Joan,
Many of us here have had the same problem, me included. We had four elderly ill parents, two three miles in one direction with dementia, bowel cancer, heart disease) and two six miles in the other direction (prostate cancer and osteoporosis plus lots of other ailments). In the end we nicknamed ourselves the Thunderbirds, ready at a moment's notice to drop everything when the next disaster occurred. Then 3 parents died, I needed major surgery, and my husband died at 58 from a massive heart attack. From all this I have learned that the very elderly are all very "self focussed". They don't really see or understand how much they are asking of others, and don't really understand that you are actually a pensioner yourself. The only answer is to take firm control of the situation - I needed counselling to learn how to do this. Firstly, I needed support to say "No" to mum. I learned to manage her expectations. With an endless list of jobs, I would pick one, and insist that I finished that before doing the next one. Then I worked out what didn't need me. My Mum had a gardener - that is definitely one job you don't have to do. Flatten all the borders so it just needs mowing. Accept that from now on you are never ever going to be able to please mum, and gradually introduce more and more carers. You need to take control of this. The more she accepts, the longer she stays out of residential care - that's the bottom line. Make sure mum understands this, it's the brutal truth. Have you got Power of Attorney, applied for Attendance Allowance, applied for exemption from Council Tax on the grounds of "severe mental impairment"? Sit down with your husband and make a plan. Decide what you are doing for mum that doesn't need to be done at all if you do things differently, i.e. gardening. Decide what would make things easier at mum's - does she have a washer/dryer or tumble dryer? Dishwasher? Then decide what needs to be done by someone, but doesn't HAVE to be done by you i.e. cleaning. Then decide what you would like to do. Then decide what you really must do - managing finances, arranging carers. You both need some "mum free" days, leading up to proper time away on a regular basis. Social Service have apparently been involved at some point, have they done a formal "needs assessment" for mum and a "Carers Assessment" for you?

[crocus]

When my mum started with dementia she wanted to come and live with me too. As I am already caring for a husband with an acquired brain injury it was impossible, but I know how difficult it is.

One of the features of dementia is the loss of empathy. Expecting them to understand your feelings is like expecting a man born blind to understand sight - impossible. Also, in the early stages they often know there is something wrong, but dont really understand what, so you will often find them saying that they need "help" or are "poorly". They are also frightened and cling to familiar things/people to make them feel safe. They also do not remember that things are being done for their own benefit.

All of this makes them extremely difficult to look after. Just at the time when they need more help is the time that they will refuse it.

I am sorry to say that you will have to thicken your skin and reduce the amount of time that you are giving to her (well done for refusing to have her live with you) if you cannot cope with it.
Work out what you can do and stick to it. I notice that she had carers going in while you were on holiday, but it sounds like that has stopped. Is that because she objected to them once you were back? Why not go on holiday, book the carers and then just continue with them once you return. Ignore her taunts and jibes - tell yourself its the dementia and loss of empathy

DO NOT FEEL GUILTY - whatever you decide

[susieq]

Hi Joan

I had similar problems, my Mum was 83 when she was finally diagnosed with Alzheimer's and I was 60, newly retired. We managed OK at the start with Mum in her home and me in mine a couple of miles away, but as time went on she needed more and more support until, at the end of 2009, she had a bad fall and ended up in hospital for three weeks. I do have one sister, but she's married and has grandchildren so, as the unmarried daughter with no 'responsibilities', it fell to me to take on Mum's care. When she was discharged it was decided that I would shut up my home and move myself and my elderly cat in with Mum to care for her 24/7 (Mum's flat was bigger than mine).

My Mum didn't want to go to the Day Centre (although I did get her there a few times before she flatly refused to go any more !) and didn't want 'strangers' coming in to help out, so it was just her and me 24/7/365 except for the 4 hours a week respite that I got when my sister would come and sit with Mum. Eventually I was in desperate need of a break and arranged for Mum to go into respite care at a local residential care home for 5 days - initially she was very reluctant but after many discussions/arguments she agreed to go for a 'holiday' That was the first and last break I got ! (and she actually enjoyed her stay, said it was a very nice hotel !!).

Eventually I couldn't cope with Mum on my own any longer - she had got to the stage where she no longer knew who I was (frequently asking me if I was her Mum !); where she continually wanted to go "home"; where she would wander around the flat all night packing her clothes to go "home" and it was decided (family conference) that it was time for her to move into a care home permanently. It was heart-breaking to do this, after all she was my Mum and I loved her; I can't describe the guilt I felt but looking back and with hindsight it's probably something that we should have done earlier rather than later.

Six months after moving Mum into the care home she passed away - but for those six months we had a Mother / Daughter relationship again; because I was only 'visiting' and not 'caring' she (mostly) knew who I was and we could enjoy each other's company.

Like you my retirement didn't happen the way I had planned it - Mum and I had decided that when I retired we would travel lots and I would take her to see all the places I had visited when I worked for two major airlines. But life rarely pans out the way we want it to; my only regret is that I never married and never had children so now at 68 I'm on my own with just the same elderly cat for company.

[jenny lucas]

I completely agree with BB and Crocus. Sadly, grimly, but brutally - you will NEVER get her 'permission' to do less for her! She will fight you every inch of the way, with every weapon at her command, the most powerful one of which is inducing guilt in you.

But this is NOT a sustainable situation. It is not emotionally healthy for you, obviously, but it isn't for her, either. She has turned you into her 'parent' ... her 'mummy' who has to look after her and, almost, be her 'husband' (ie, her ideal I suspect would be for you to move in with her and live your entire life looking after her and keeping her happy and comfortable and entertained).

It's entirely understandable that she wants you to look after her - it would suit her very well. But there is more in this equation than her - there is you, too. Just because she is old and in poor health, does not mean that she is morally entitled to have things 100% her own way.

As BB says, the elderly and sadly also sometimes the ill, to, can be incredibly (ruthlessly!) self-focussed. And the only way to deal with this is to do as BB and Crocus have recommended, to draw clear boundaries between her life (which will consume yours entirely) and your own.

Saying 'no' to her will not be easy, and maybe the easier way is not to say 'no' but not to say 'yes' either. Learn to speak to her with a temporrising manner - 'I'll get around t that next time', or 'We'll see'.... and change the subject. Don't get into arguments with her, just smile and either walk away, or do something else, or make a cup of tea , or turn the TV on.

Also, don't 'consult' her about what she wants etc. Just make decisions and then present her with a fait accompli - say things like 'I've arranged for the carer to come in'.....an 'I'll see you the day after tomorrow'. Don't debate, just say that's it. Be brisk and kindly and firm.

The thing is, she wants to treat you like a child (ie, obeying her!) yet have you look after her like a mummy! Not on! If she wants the 'looking after' then she has to 'obey' you!

I think it can also help to look back and remmbrer what she was like when you were growing up, and before she was so old - was she always 'demanding' and 'controlling' and 'self-focused' or is that something that has come on with old age and infirmity? If the former, then those habits of 'obedieince' she schooled into you will be harder to defeat. But defeat them you can, and must.

As I say, she cannot use up your life and have everything her own way. If she doesn't want strangers, or to go to day care, then she must put up with being lonely and alone. Her choice.

Remember above all, you are ENTITLED to your own life. You can't live your life in your mother's pocket, and nor can you live your life 'waiting for her to die so you can finally be free'.....not only is that a bit ghoulish (I feel the same way about my MIL!), but also, she might go on till 100+! You have to get your life back now, and that's that. Remember too, harsh though this sounds, at 88, she's had twenty years more life than you have had - these are your 'young old' years in your sixties and seventies, and it's vital you d the things with your husband that are the things you want to do, and can do, at this stage of your lives.

All the best to you. Make 2015 the year you get your life back, and this forum is GREAT for support and advice and encouragement.

Kind regards, Jenny

[bowlingbun]

My mum is 87. My dad died at 78. My husband died at 58. Yet still my mum tries the "woe is me" routine sometimes. She blames dad's "early" death on the equipment he used as a research scientist. I know she liked my husband, yet I have to remind her sometimes that I was widowed at 54, so she had 20 years more of married life than I did. When I'm in a bad mood, I will refer to my mum as "The Ayatollah" dishing out orders for others to do her bidding. When she says "I never expected it to end like this" (i.e. nursing home) I just say it's the penalty for living for a long time, but at least she's lived long enough to see her great grandchildren. My husband never met his grandson, who he would have adored. If you can build up a few phrases like this, which are appropriate for mum, it really helps. I really love my mum, and I'll be very sad when she is no longer here, but I do find her constant self pity very wearing.

[Worrywart]

Hi Joan,
Just wanted to say hello. I was / am in a similar situation to you and I took the advice of the lovely people on this forum. My mother had brain haemorhage aged 72 - she is now 75 and after a year inhospital came home with a care package. Around this time I was retired on ill health as I have chronic health problems. I have a sister but she has young children so the majority of the work fell on me. I soon became exhausted and resentful. I know that sounds nasty but my mother, who has vascular dementia following the brain haemorhage, is difficult and not in any way appreciative. She also has a constant need to go shopping and would go every day if I would twke her. The fact she is wheelchair bound and 13 stone and I'm not in good health is irrelevant. She too will phone me evey morning asking if we are gng out, if I say no not today she will stay in bed and refuse to wash. She says horrible things to me like ' don't other coming here without the children , asks me why I'm so fat ( I haveput on 2 stone since losing my job and I'm not proud of it ), if I say I'm going to see friends or have my hair cut she laughs as if ( why are you bothering). She was not an encouraging or supportive mother as I grew up but in no way cruel. We were never really close so I suppose this is why I struggle with her. My husband and I waited for me to finish work so I could at last have a life ( I've had about 30 operations in my life so we have never done much as in holidays ) but like you all that has gone and our short breaks are usually stressful or I come back to problems and then wish I had never gone.
Sorry to sound so negative. But what I'm tryng to say is I did take control. I now leave things to the carers and stop trying to be everything to eveyone. I still do her cleaning, washing and shopping etc . My sister now takes her out once a week and I will take her a second time if my husband is available. I have learnt to say no and it's not easy . Like you Bowlingbun I love my mother but I don't always like her and I feel the feeling is mutual! I am gng into hospitsl next week for major surgery - but there is no empathy or concern only 'who will take me to town' questions. Very self obsessed.
Take control Joan as it will wear you down xx

[Joan_1501]

Hello to bowlingbun, crocus, susieq, jenny lucas and worrywart,

Thank you all so much for your replies to my first "post". I can't begin to tell you how helpful and supportive I found you all to be!

You were all talking in the same vein and this was uplifiting. Many of my friends have spoken in the same way as you all have, i.e. to get more help, etc. etc. but I have found it very difficult even though if I was advising them I would be going down the same route!

In fact, before I retired I used to work for Social Services taking referrals and advising the general public so I do know what is "out there" or how to find out, but there is one thing in advising people and another in dealing with the situation when it is happening to yourself!!
So, it is so nice to hear directly from people who are having (or have had) the same problems and can speak from personal experience....brilliant!!

Anyway I have decided tonight to take TWO days off from looking after my Mum and will be e-mailing the care team as soon as I have finished typing this reply! I will let you know how I get on in the coming weeks.

Yes, she does get Attendance Allowance and Social Services have seen her in the past (when she refused to go in for respite care last year!!). And yes, before she came out of the place her needs were assessed and she was advised to have home care support but she was so strong willed and told the Manager that she would sort things out with me! I was at the meeting and being the "dutiful" daughter that I am I went along with her because I could see she was getting agitated and upset!! (What a wimp I was!!)

And yes, I could have a Carer's Assessment but in the past always maintained that a Carer's Assessment was O.K. if the person being cared for would agree to things being put in place...but my mother is so strong willed that I know that she wouldn't agree to anything!!!!

I have Power of Attorney (and what a headache that was getting her to agree to it!) so this does make things easier being able to deal with her finances

So, a new year, a new start.....watch this space!!!!

P.S. One thing I wasn't aware of was the advice one of you gave me about the possible reduction in Council Tax because of her mental impairment, so will be following this up!

Anyway, once again a BIG THANK YOU and a BIG HUG to all of you!!

Joan (Wanted to put one of those smilie faces on my message but it doesn't appear to work when I try to do it!!). Need training!!

[jenny lucas]

Joan, glad you found all the responses helpful and supportive.

In a way, the biggest, biggest barrier is psychological - you know how to get support and help for your mum, BUT, you 'daren't' get it in....several times in your posts you've mentioned that your mum got agitated, or distressed, or both, and then, immediately, you backed off...

Well, that's certainly an effective technique she's got, hasn't she?!!!!

'Learning NOT to be scared of other people's reactions' is THE key to being assertive. Learning not to endlessly placate someone else is key. Learning how to say no is key (even if you don't use the 'no' word, your deed is the 'no' - ie, you just don't do what the other person wants you to do).

Why not write down what it is that you currently do for your mum, and what, ideally, you would like to do, and then a third list which is what you are ....for the time being...prepared to do. (This may change as her care needs change, and your own life changes).

You could then look at the first list - what you do now - and compare it with the third list - what you're prepared to do - and then draw up a 'priority' listing of what you want to stop doing first......eg, the top three things about your caring role that cause you the most irritation and resentment.

It may be a bit harsh to go from the 'what I do now' list to the 'what I'm going to do in the future' list all at one go (!), so having an 'order of withdrawal' as you make a 'planned retreat' from all your endless duties, could be both gentler on her (she'll fight EVERY one of them, so be prepared for that )('Learning to blank objection' is another essential skill in assertiveness!), and on yourself (because it IS hard to say no, and you WILL feel guilty and pity and compassion etc)

Talk to your husband, get him onside, find out from him what are the things about your caring duties that most get on his nerves, or he feels most sorry for you about, and what are the things he'd most love to do with you once you're freed from this crushing and unsustainable burden, and that will guide your priorities too.

Finally, just a thought, but several of us here have found that once an elderly person has gone into a residential home, our relationships with them actually improve - the 'daily grind' of laundry, housecleaning, feeding, etc, is lifted (passed on to the home) and so time spent with the parent is more 'quality time' and therefore more enjoyable. Resentment can wither away and sometimes a far more 'mother and daughter' relationship can re-emerge, to the benefit of both of you.

And, finally finally (!), why not sit down with your husband and plan a break away, even a holiday, in the spring, and that will give you something good to focus on, plus a timeline to ease off your caring burdens to a manageable level.

All the best - it can be done - but the psychological 'freedom' (ie, not being 'afraid' of your mother's emotional resistance to change) is the most important to gain, in order to achieve the practical freedom.

[Joan_1501]

Hello again....I am now having two days off a week from visiting my mother although I do go back in the evening on my days off.

I took her yesterday to see a consultant re her short term memory loss (as advised by her G.P.) and she has gone mad, saying that I have been telling tales, and that there is nothing wrong with her memory etc. etc. etc. The visit has really upset her and I am now wondering if it was all worth it. To-day (Tuesday) was my day off but when I have been over to see her this evening she just started again nattering on about how I have made her ill by taking her to the consultant and that she has not slept. One thing led to another and I am afraid I let rip and did shout at her...what a mess...I feel ashamed of myself. My poor mother does not deserve this but she just annoys me so much at times. Is there anyone else out there who "loses" it like me. I know I should walk away and somtimes can do, but at other times I just don't seem to be able to.