Feeling desperately worried about having to be default carer for my elderly and ill MIL...

[littletree]

Long story that I shall try to compact:

MIL is 80 and has Parkinson's. She lives 2 hours away from us. She divorced DH's father when he was a child. She has two children- DH and evil SIL. Evil SIL lives in same village as her but is usually swanning off on holiday with her wealthy partner and therefore not a reliable helper for MIL. She does help but not with any consistency. MIL lives on her own in a terraced house and has nice neighbours and another elderly friend that lives a couple of doors down. This arrangement has worked fine up until just recently when thre have been a couple of incidents when it was clear she was not ok on her own.

She is a very nice lady with a gentle nature but of course like all of us she has her faults. She can be nagging to DH and irritate the hell out of him and can hover and nitpick.

She also throughout our marriage has come to stay with us for extended periods of time which drives me bananas. She comes for a week to two weeks at a time totalling around 2 months of the year. I am fine with this for the first 3 days but after this I feel like I am going out of my skin! I can not stand having someone else in the house for that length of time. I feel suffocated and my smile starts to droop and I become a bit snappy.

2 years ago she was diagnosed with Renal cancer. She had her kidney removed and needed aftercare. Her crazy daughter was as usual off on another exotic trip (leaving her 3 small children to be looked after by the au pair) and my husband was working in Belgium only coming home on weekends. I was left to be her carer by default. At the time my ds' were 2 and 4. During this time my grandmother died and I couldn't leave to go to funeral because I had to stay and look after MIL and children. Felt sad and suffocated.

Fast forward 2 years ago to last weekend. MIL has a fall whilst shopping in London. Call from police telling us she was being rushed to hospital. DH went in and released her from hospital and brought her back to our house. Her face is a mess because she broke the fall with it- not breaking anything but badly cutting and bruising it. On Monday, DH had to go to Belgium ironically and I was on my own with MIL and 2 DS;. Had to take her to surgery to get Parkinson's meds (as she hadn't been expecting to stay with us and hadn't brought any), then back to nurse for dressing wounds, then off to pharmacy to get medication. At 4am that night she tapped on my door with horrendous nosebleed that wouldn't stop. Call ambulance. They can't stop it and whisk her away- also bp was in stroke range.

I got a real taster of what it would be like to have to care for her and I didn't like it. I feel angry with her because she had Parkinson's for around 15 years now and has known it won't get any better. And duh! When you have cancer and you're nearly 80, it is also a sign that thingsw might be going downhill. She has made no provisions for herself but instead expects everyone to tell her what to do- and believes it is her children's responsibility to look after her. I am afraid I disagree with this 100% because I believe we are all responsible for ourselves. Yes, people need support and help but she is of sound mind and like I said, it is not as if this has cropped up overnight.

DH and sister hate eachother so I am always acting as a go between and I hate it!

MIL has hinted that she would like to live adjacent to us in a granny flat but all I can see is my life being finished with running around doing things for her! I feel very suffocated as I write this. DH is 10 years older than me and my own mother is 20 years younger than MIL so I feel I am facing the 'What to do with Mother' question earlier than I should. I feel cross that I have to spend so much time having this woman in my house and caring for her because she's NOT MY MOTHER!

I am sorry there is so much more to the story and I realize I sound harsh but I feel really really stressed out by this and worry how it's going to pan out. It has really upset the equilibrium in our house with DH and I both not sleeping. AIBU?

She could stay in her own hom though with access to Medalert (button round neck) and carers coming in regularly which can be up to 4 times a day. An old lady across the road from me did not have family nearby but had this arrangement.

Perhaps this should be tried first before you worry about having to move her closer? Remember, a move at her age can also disorientate older people which could incur greater needs than being at home.

You need to have a social worker appointed who will help you make the arrangements.

Thank you Mears. Yes, that is a fair point and that is what we are going to try. She does receive the allowance at the moment to have a cleaner come in who also is a nice lady who does bits and bobs for her. We are going to look into this to see if the allowance could be increased. Whilst we are not on the breadline, the recession has hit us quite badly because DH and I are self-employed. DH works very hard to keep main roof over our heads and I have a small business that only gives out what I put in.

I am putting together an A4 sheet of options to explore and giving it to dh and mum to discuss. I think she should definitely have a red button and a part time carer at the very least. I would like her to come for more frequent but shorter visits to us for respite. For instance 5 days instead of 1-2 weeks every 6 weeks for respite. I am happy to do this for short bursts, it is the lengthy ones I find difficulty coping with! she already comes for 2 weeks at Christmas. In addition, her crazy daughter (in her good phases) to continue to have her round for Sunday Lunch, dh to be more consistent in phoning her everyday for brief 'are you alright?' calls and going to her house more frequently for visits- at the moment he hardly goes over there. I think he is falling a little short in the phone calls and visits department putting too much emphasis on lengthy visits over here. Perhaps the little and often approach might be just the thing to give everyone a bit more security.

Do you know what level of care is free to the person?

I am in Scotland so the situation is different here. The elderly receive free personal care so the caring service is put in by the local authority. We do not pay. The is an emergency out of hours district nursing service which is also free. The medalert service has a cost but it isn't that much.

I don't know about 'meals on wheels' but this is how a social worker can help you.

Is your MIL still in hospital because if she is, the hospital social worker can get the ball rolling.

I completely agree with granny23.

I don't ever, ever want to be a burden to my children or want them to pity me.

The fact is we life in a weird social environment where we are strongly dependent on very small family units and this means that our marriages are very fragile - having seen couples/families be torn apart over this sort of situation, I'd never want to come between my children and their own spouses/families.

I admire older people who have put plans in place for their own care and taken responsibility for themselves and their futures - I think we should all do this.

OP YANBU, you have my sympathy

Just read your latest post - sounds like a good plan

Contact your local Age Concern and have a chat with them - make an appointment. They will tell you the range of services that are available either from the council or from voluntary services - things like meals on wheels, home help twice a day, etc. There is a lot of help out there if you know how to access it.

Good suggestion morningpaper. Forgot about them.

Age Concern

Yes I've always found them brilliantly helpful and knowledgable

Take Control.

This situation has been foisted on you.

I had very very similar in terms of family dynamic; I was the DIL.

MIL/FIl with Alzheimers/Medical Dementia; I even got a hat trick and a bonus ball with my parents, and his parents all in Intensive Care over one weekend; but in different hospitals.

I "cared" for over 4 years; and it broke me to the point that I didn't know who or what I was.

Your MIL needs nursing care in some sort of home or formal care in the home.

I felt I owed it to my PIL to take on the role (because I loved them so much); but it was awful.

On reflection; and how it panned out; I wish I hadn't, for all our sakes.

I shall call age concern. I suppose the main problem is really the messed up family dynamic of MIL and two children. She divorced her husband back in the early seventies and it was just the three of them. She has (perhaps without fully realizing it) cast my dh in the role of man of the family and sil has always been childishly jealous and very competetive with dh. MIL is the ultimate yes man and has always given into SIL which means she has in a way created a self-centred monster. SIL has 4 children and has milked MIL dry for childcare. The granny always on call. Another reason SIL royally pisses me off. She took all of Mum's offers to be on call and help with childcare before she got too ill but sent her out to pasture when she was the one who needed help. On the flipside, there has been no reciprocity with help from MIL because she was too needy herself by the time my sons were born- I would never have asked her to babysit. When she comes to stay and we go out, we get a baby and granny sitter!

But I suppose I'm digressing, I need to put the plan together I suppose I have been just self-pitying that I always have to me caught in the middle of their f*ed up family dynamic.

Again, I think it is mostly women that end up compromising in these situations. I can not imagine my husband ever doing anything like this for any of my family members.

Please don't compromise.

Seek a solution that meets your needs.

Haven't read whole thread yet but interim post in response to Granny23's comments. Care sandwich creeping up on me in relation to FIL and very scared. Granny23's post is encouraging me to gird my loins and be a bit more resistant. Fortunately I have a few more rellies my age to help, but it's still a worry.

What exactly is your situation BoffinMum?

FIL 84, keeps having blackouts and falls, never know what is going to happen next. 3 kids, youngest a baby.

My mum is 88 this year, she is still on her own and I visit twice a week.

Unless it is unavoidable I expect her to move to a home. I can barely put up with having my OH around the house let alone a dependent parent.

When people talk fondly about caring for an elderly parent they always seem to use the term 'we' and 'us' when in my, and probably your situation, it would be very much I and me. IMO SIL would fade from view and elderly mothers don't want sons to see to their personal care so it all falls on the daughter or dil.

Get paid care in place and then do what can be fitted in around your own family.

I feel for you BoffinMum. Thank you for your support and encouragement those with encouraging comments. Most of the people with negative comments don't seem to have had experience with elderly care and wonder if many people live with a eutopian ideal of what life should be.

I like the philosophy that it takes a village to raise a child and I think the same should apply to the elderly. When there is a support system in place there , it's lots of people doing things and no one person having to sacrifice their everything. I think that has been what this is about for me. I think we should all do our bit to help loved ones and the more vulnerable of society, but, I don't believe in martyrdom. why is an elderly person more important than their young carer? Last night ironically my mother in law slept very soundly and my husband and I were pretty much insomniac all night (again) because we are worried. That sums it up for me. Somebody said it seemed my MIL is a burden. Yes, I guess it is somewhat of a burden. There are good moments and as I said she is a lovely (mainly) kind natured person. But being in charge of her would feel burdensome. We are not there yet, she does have her marbles (mostly) and still ok to be in her house with some additional care. But, again, like somebody else mentioned, she could live for a lot lot longer with increasing difficulties and unable to care for herself. She is 80 today but her own dad lived until 99. Her mother lived to 95. Good health, but also my MIL's sister gave up 20 years of her life looking after them. She loved her parents immensely but does not look back on those years with fondness.

Good luck littletree

Can I just suggest that, if you haven't already, you help her apply for Attendance Allowance - and that you approach your local Adult Services (social services) and get an assessment of her needs. The SW will be able to refer to things like lifeline (the alarm pendant) Also she may be entitled to help free or for a very small contribution - it's all done on savings which are in her name only - doesn't matter whether family members have money or whether she owns a house or not. She may be entitled to more than you think

Once again, Good luck!

There are two issues here. The first is about your poor MIL and whether you as a family have any duties towards her. The second is how you and your husband divide these duties. If your husband was going to Belgium for pleasure in these circumstances, he was being very unfair. If it was for business in order to contribute towards the household finances, it was a tough break for you but "just one of those things".

I think the majority of posters on this board seem to have forgotten the original idea behind marriage. If you marry someone their parents become your family and vice versa. You cannot just say "my mother" and "his mother" as if you were complete strangers. They are both elderly family members and, if in need of care, they are jointly both of your responsibilities.

As for expecting the elderly to provide and look after themselves, it is a shame your MIL had not had her DIL's attitude spelled out to her a little earlier. If she had known, she could have put a lot aside for her old age by not giving her son the upbringing she clearly did to make your husband the man you loved enough to marry. I am sure the holidays, the education, the presents etc did not come cheaply, and, had the money been invested instead, would have provided a very decent pension.

You would not expect your DCs to "care for themselves" and, sadly for all of us, the last few years will probably resemble the first few. Does no-one think we have an obligation to our parents to give back a little of what they gave to us over the first 18 (or more likely these days) 21 years?!

The idea that the old should be disposable and go into a home is an anathema to me (unless they have advanced alzheimers). The fact they are old and physically frail does not mean they should not be treated with dignity amongst their own family and friends, not forced to live en masse with complete strangers.

This whole subject makes me very angry and sad. It is typical of anglo saxon society and makes me want to emigrate to somewhere where both the climate and people are warmer.

CirrhosisByTheSea: very wise words. What do you do?

I really think that some posters have missed their English comprehension lessons because nobody on this thread has advocated abandoning relatives so they themselves can kick up their heels and run away from them with selfish, gay abandon.

You marry your husband - you also marry his family? You make it sound all so simple and automatic. I think that's a very naive pov. Perhaps it is simple for some (although I suspect very few), it is that way. For most, family and the relations within it are far more complex.

Grim,

I never said it was simple. It extremely complex. However, if people think marriage is only about romantic dinners a deux, cute smiling children and wonderful holidays, that is also a naive pov. It comes with obligations too and sometimes they feel pretty tough. However, without them, it is a pretty shallow concept.

As for english comprehension, how many posts have included "care homes" or contacting social workers? To me that is abandonment. Maybe, in your view, I am being simplistic. However, the old are treated shockingly in the UK. It is well known throughout the world. I am lucky enough to have many friends from overseas and they are shocked at how shallow our concept of family is.

Not just typical of Anglo-Saxon society, larrygrylls. My Swedish parents have made it perfectly clear that they would wish to go into a home when they get too frail to live in their own home. My Swedish grandparents (one on each side) also went into a home when this happened). Afaik at least one of my greatgrandparents did too.

If I decided to ditch these "Anglo-Saxon values" and look after my MIL, she would basically be sitting in her shit, because I couldn't get her onto a commode: this house is not adapted to somebody in her condition, there is no room for a hoist and I am not strong enough to lift her. She would never have another bath in her life, because she couldn't get up the stairs to the bathroom and I couldn't lift her into the bath anyway. She would be at constant risk of dying unattended every time I had to pop out to do the school run or do the family shopping or take my children to a doctor's appointment. Or are you suggesting that if I had the right values that I wouldn't have to do those other things any more?

If my grandmother had lived with us, she could easily have broken her neck or set the house on fire when my Mum was down the shops.

Instead my MIL is, and my gran was, looked after by people who have medical training to deal with their conditions, can be on constant call, who do not have to leave the building while on duty, and who have all the equipment needed to make sure they get a decent quality of life.

Anglo-Saxon values? I call it common sense.

I really don't people who make difficult decisions about their elderly relatives think marriage is all about romantic dinners, cute kids etc etc. That's an off the wall extrapolation to make.

So, what do you suggest if someone physically cannot cope with looking after an elderly relative? Or does that problem not exist? Everyone is physically, emotionally and financially capable - yes? Quite simple really.

Cory,

That is a really simplistic argument. Firstly, I have deliberately excluded the senile. It is pointless and mind numbingly sad to have to look after someone who is no longer themselves.

You talk about medical training and their conditions being dealt with. Sure, they will physically have a decent quality of life. But how about emotionally and intellectually (assuming they still possess their own marbles)?

I would rather live shorter with people whom I love and love me in return rather than revert to infanthood in the company of strangers.

Grim,

One has to do one's best. Clearly there are going to be situations where it is impossible. Also it is not an all or nothing problem. One can care for someone as much as possible and they can have breaks in a home. Also there is home help available. The starting point has to be, however, how can I do my best to care for an elderly parent? It cannot be how can I optimise my own quality of life without feeling too guilty. If that is the philosophy, I am sure a solution can be found which will retain, in as much as it is possible, the dignity of the elderly parent, without entirely ruining one's own life.

I am not sure about "financially" anyway. It is much cheaper to look after someone than to pay for a home (wherever the money is coming from).

These arguments are great in theory - but I'm sitting here with tears in my eyes remembering the lovely lady I spent time talking to on Thursday last week - she was truly desperate, I don't know if you have heard that rasping sound in the voice when someone is truly desperate

She had spent the last 20 years caring for her elderly frail parents, one after the other, and now, for the last ten she had combined them with looking after her husband who is almost immobile after various complicated health issues. She was in her 40s then, now in her 60s and only a few active years of life left perhaps. Her husband was violently against carers coming in so she had been alone most of the time unable to even pop to the shops without stress and worry

This lady talking to me as a SW for help, was not about 'abandonment' and that statement makes me really angry. This was about a human being allowing themselves a bit of life before it's over

larrygrylls - you said:
"I would rather live shorter with people whom I love and love me in return rather than revert to infanthood in the company of strangers".

Why the have you excluded the senile? THose with sever Alzheimers? My assumption is you view thwm as shells with no feelings.

My father is highly dependant but there are tiny chinks where you know that he knows us. He knows where he is.

In no way do I think that all elderly relatives should be cared for at home but I am pretty shocked at your double standards with regard to those needing additional care as if they don't matter.