MIL should be in a care home, but refusing to go. A rant

[Rainicorn]

MIL has osteoarthritis and a fused spine amongst other medical things. Following a fall last year, she ended up in hospital where they found bowel cancer and resulted in a 6 month stay where she lost mobility because of her refusal to get out of bed. She also has chronic pain which is under control morphine patches.

She has just got out of hospital again, this time a 10 day stay which should have only been a day patient and they diagnosed CPOD and we've been told heart failure last year which she never told us about, or maybe didn't know about as she was pretty ill anyway.

She currently lives in a small one bed flat in what used to be sheltered accommodation but now help can only be given by community care alarm.

She has 2 carers that come in 4 times a day to get her out of bed (hoisted), into her chair. She also likes to go back to bed after lunch for a sleep. They cook for her, dress her, bathe her, give her her medication. Basically all she does is feed herself.

We visit every day. I do a lot of running around for her, shopping, paying bills, taking her to go appointments in her wheelchair etc.

She keeps phoning us for trivial things, like making her a cup of tea, picking up dropped remotes for the TV, and also for things like moving her leg an inch to the left which she could domherself simply by raising the hospital bed but she doesn't see why she should when others can do it for her. This can be during the day, it can be at 3am in the morning.

I am exhausted, DH is exhausted and it is causing arguments between us. We cannot convince her to move somewhere where there is 24 hour care so they can make sure she is looked after. She is happy being cared for the way she is,my apply to wake us up to come move her.

The thing is, if we refuse to do these things then she always seems to get ill, or needs to phone the doctor out for something. I feel like this is what it's going to be like until she dies, and I don't want to wish her dead.

I realise how selfish I sound. She has lost a lot of her independence and she doesn't want to lose what little she has, but she fails to see what impact she is having on everyone around her.

We only found out a few weeks ago that when we were refusing she was asking her neighbour to do things. Her neighbour is a lovely caring woman in a wheelchair who has sleep apnea and she was waking her by banging in the wall. We have since taken neighbours key away so she doesn't disturb her.

It's almost as if she doesn't care who she inconveniences as long as her needs are met. She is a very headstrong woman.

I think you need to speak to her social worker and perhaps simply turn off your phones at night so you at least get that break from her...

She'll have to use her alarm then for help and they'll soon tell her it's not an emergency etc.?

Really feel for you - very tricky situation!

I have no useful advice whatsoever - but bloody hell, you are a living saint. No wonder you need to rant. I really hope you find a solution.

Not enough experience to comment really but could you switch your phones off at night? if she rings the doctor (will she? Aren't these calls really 'notice me' rather than 'I need help') at least that flags up that she is not coping?

This sounds awful.
Do you go to her in the middle of the night when she phones?

I don't think you can force her into a nursing home though if she doesn't want to go.

She also maybe doesn't meet criteria for 24 hour care package.

She has no independence, she is totally dependent on you and her carers. Being in your old inappropriate home is not independence.

The only thing you can do is refuse to go and do anything for her unless it's life threatening - she will have to wait till her carers come over for that cup of tea etc. if it's really life threatening she can call 999.

You don't sound selfish, you sound amazing. But no, she won't change her behaviour because this suits her just fine. Speak to her GP, social worker anyone you can and explain that the situation cannot go on. And yes, turn the phone off overnight. In a true emergency she can use her care alarm.

Gosh you're all too kind. I expected to get flamed and told I'm terrible.

Wrt turning off phones, we have done, but she then calls community nurse/care people who then call our mobiles to let us know she has called them. Have turned off mobiles as well only to be met with lots of answer machine messages.

The only thing keeping her out of a care home is her. Because she is in sound mind, the SW cannot insist she moves there.

She lives a 5 minute walk, 2 if we run. The care home is across the road. It's not as if she would be moving miles away.

'she then calls community nurse/care people who then call our mobiles to let us know she has called them. Have turned off mobiles as well only to be met with lots of answer machine messages.'

So you have messages. if you felt kind you could let the care people know that you need sleep so will no longer be responding between 5.30pm and 9am. Or put that on your voicemail. She clearly has people to call - people who are paid, perhaps? While you take up the slack, believe me, the system will let you.

I've had similar, although not as demanding, from lady I got to know through helping her out through local volunteering scheme, with lots of calls for all sorts of things, including repeated ones as her memory is poor now, and I've had to pull back to protect my health and sanity as it was putting those at risk; so can only imagine how desperate you must be with it being Constant.
Do speak with SS / care agency etc and tell them you have to be allowed peace and rest at night, she has the alarm ge emergencies, and will be doing no one any good when you become unwell yourself from the stress and lack of sleep. Don't look on it as being selfish but as self care, it's very important! Hope you get some peace sorted soon x

I agree you are a saint. And should switch your phone off after say 8 pm at night and 8 in the morning at the very least. I don't think it's right that you are made to feel guilty for just wanting a normal life without being on call 24/7. And it's the care staff who are being paid to be on call not you. And if it's making you and your DH argue that's simply no good at all.

I agree tell her that you won't be responding to phone calls between 9pm & 8am. Turn everything off and let whoever leave messages you can speak to them the following day and say you are not able to help her overnight and they will have to assess her care needs taking that into account...

I was in a not dissimilar situation some years ago. The only way that she is able to remain 'independent' at the moment is at the cost of your independence.

Your and your dh's lives, needs and wishes are as important as hers and, as it sounds like she has no boundaries around what she'll ask for and when, it's up to you to set them. It's also up to you both to manage your own guilt and resentment. It's not your fault that she ended up in hospital - it was a result of her health problems.

I agree with pps that it's reasonable of you to say that you need sleep/privacy and won't be able to answer calls between evening and morning. Also, what you are/aren't prepared to do during the day.

She sounds completely wrapped up in herself - which is often what old age and ill health does to people - but you and your dh need to factor your lives into the situation too.

If she has capacity to decide that she doesn't want to move, then fine, but she then needs to find ways to manage at home that don't infringe on the rights of others.

I didn't do enough of this at the time, and I made myself very miserable.

Seeing title of the thread my first thought was Wtf. But wow you are really going through it at the minute.
My friend has a parent who is mentally and physically ill, ended up in a hospital and she told the social workers etc she was offering no support so they had no choice but to get real help. It's a shit situation and I wish you the best of luck

Similar situation with elderly relatives in my family who tbh are now being neglected imho but they just won't accept the help we've been offered as in their eyes family should do it.

Ignoring the fact we have our own health issues, marital problems, DC, jobs, homes etc to take care of, and only 24 hours in a day and 2 days a week not working

I know I sound like a bitch now. But 5 years in and super stressed by it.

You are a saint. It can drag you under. I ended up phoning the community psychiatric nurse and telling them if they didn't help me I would soon be part of their case-load. They came over that day and talked to my mum and persuaded her to go into a care home as a temporary measure. She hadn't wanted to leave her home, but was much happier with company and good care and stayed there.

If you have children who need you too, you are pulled between the two trying to do your best for everyone.

If she needs hoisting out of bed, can she manage with going to the toilet on her own during the day? And if she does, is she putting herself at risk of falling? It's really hard to know when the time has come for you to step in and "take over" from your parents with important decisions about their well-being.

hugs x

These situations are very tricky because as you say she has capacity to make a decision about where she lives and everyone is allowed to make bad or selfish decisions if they have capacity, we all do!
If she has a care package of four calls a day then those careers are not on call the rest of the time. The care line is for emergencies not to call the carers, so needs a list of people to call if she presses it. This is normally a relative or neighbour, or in a true emergency an ambulance etc.
Community care teams ie nurses, Physio, OT are not there to deal with her personal care needs so it usually falls to care packages and family/friends. This can work ok if the person is reasonable in asking/receiving care.
Your situation sounds awful. Is there anyway you can sit down with her and the professionals involved and have a very frank conversation?
If she lacked capacity then a best interests decision could be made but as she doesn't things may have to carry on or you step back , let a crisis happen, which it probably will then her hand will be forced. Far from ideal but often what happens.

How bloody awful for you. She's really not an easy person, is she.

The more I deal with old people, the more I think that the equation 'What carer loses in life quality V what old person gains' is the way to make decisions about what support you do, or don't, give. You having your evening disrupted V MIL having her foot moved is a no-brainer.

Go straight for the big guns, ask for a social work assessment of you both and a follow up meeting.

Avoid the cringeing embrassment and being made to feel bad by asking her social worker to tell MIL that you and DH can't be her 24hr hot and cold running servants. Then explore the options, as they say.

By the way, a lot of people do much too much themselves for the old and sick - people give and give and give to the old person who needs professional care, only stopping when their health/marriage gives out. In the meantime, the oldster is able to notch up another 15 years on the clock. You really mustn't damage yourself and your family.

I will talk to DH about turning phones off.

I am also SIL main point of call, she has SN and has just moved into her own place from a care home so may need to keep at least one phone on.

Re toilet, she has a colostomy bag and permanent catheter so not needed.

She can't walk or transfer herself. She is hoisted into a wheelchair, wheeled into the living room and hoisted into a chair. Then in reverse to go to bed. She can't stand either. Her mobility deteriorated in hospital when she refused to return out of bed.

Thank you all for your support. It is hard, I have nobody to talk to about it except DH. I hate burdening my friends with my problems.

I can't tell you the immense relief that has flooded over me this morning after I received a phone call to say MIL has been accepted into a new scheme here that is between a care home and sheltered accommodation, so she will have her own flat in a new complex like she currently does but there will also be 24 hour care so her little things she keeps phoning for will get covered by the staff.

I had a little cry this morning, I just hope she accepts the place.

I really hope this works out for you all

I've had a very similar run of things to you except DH and his sister ate 90 minutes away from their mother, which I think makes it easier for us as they can't just pop over. They do get the midnight calls from the alarm responders though when she falls and pulls the cord.

DH considered going over to stay with her one night a week. I'm afraid that I pointed out that he has a 5 year old who he'd never see on Saturdays because Daddy would be 70 miles away and it would be giving her false reassurance about how MIL can stay in her sheltered accommodation. She is not safe there, she is essentially being propped up by the care workers and is at the maximum number of visits she can have.

I'm going to sound brutal but tell your DH that you are colluding with her by dropping everything for her whenever she clicks her fingers. Tell her you will be over at 8am every morning and 5.30pm every evening, for 15 minutes to have a cuppa with her, but that is enough. If her carers can't offer the level of support she needs outside of that, she needs to be in a care home, for a short term assessment of her needs. It doesn't need to be in the one over the road, she can look with you at others within her / your budget but she is making you collude with her into keeping her in unsuitable accommodation. My SIL did sit her mother down and say that if she kept falling, she and DH (her brother) couldn't keep coming over in the middle of the night or 3 or 4 times a week because they also have lives. I ordered brochures or a few care homes and cried at the costs they charge which SIL discussed with her mum. She has no quality of life at home as she's housebound but will be moving to a care home, just for 4 weeks at present, which does 4 meals a day, seated exercise, singalongs with a piano, movie nights with pop corn and wine. They just don't compare.

and big hugs to you because it's grim being able to see what your MIL won't

Sorry, missed your 2nd post. Fabulous news. Really big it up - does she want some new bedding for her bed in the new accommodation? Something to brighten it up, new pictures etc? Focus on this being a fresh start for her.

And it is such a relief - when my MIL saw a nice care home on Saturday and said she'd be happy to go there for an assessment visit, DH's relief was palpable. She said yesterday that she's looking forward to going now.

That's great news, OP.

I suggest you and your dh very strongly encourage her to accept it, and tell her you will NOT be available after 5pm and before 9am (say). You have to be cruel to be kind, sometimes.