Desperately worried about my step mother.

[worryworryworryworry]

NC for this.

My father had an catastrophic stroke last autumn, he was in hospital for six months and rehabilitation is going well but slowly. His eyesight is much reduced, he will never drive again, he can't move his left arm, can't walk, has just about managed to stand up after a LOT of physio therapy and as you can imagine he requires a lot of personal care. He's wheelchair bound, obviously. He's doing amazingly well, really increíble considering the type of stroke he had and we are so very grateful that he's still with us, frankly. He was a very active man, loves the outdoors, travelled worldwide for work (he's a Dr and an expert in his field) and basically he can't do anything any more.

My step mother is doing everything for him. And I mean everything. They don't want carers in, that would make everything worse. He's suffered a loss of dignity as it is and having her looking after him just about allows him to keep some grip on 'normal' life.

But we (his children) are very worried about our SM. We were finally able to go and see him and I was shocked by her appearance. She has always taken pride in her appearance and it's as if she's just stopped caring. Her hair is usually immaculate and now it's literally half grey from the top down and she just doesn't care. She's wearing clothes that look like they haven't been washed for weeks. But the most worrying thing is how thin she's got. She is literally skeletal, I have never seen anyone that thin before apart from people suffering from anorexia.

She says she's eating ok and the extreme weight loss is just stress. She's doing everything single handedly and my partner (a GP) says she's heading for a breakdown of some sort. We are really desperately worried about her. It's a huge strain. Even just pushing him up ramps, etc.

So what the hell can we do to help?? We (his children) all live an hour away from him in different directions so day to day care isn't possible. And she won't let us help when we are there. She says it's not right for us to be doing his care, which I understand.

And of course the other factor is that she's lost her partner, the person who would be sharing this load of it were one of her parents or something. For context he is 63 and she is 60.

Any help/advice would be so much appreciated.

That sounds incredibly difficult. Obviously you can't force her to accept help, but it does sound as if she could do with support.

What do you think is the fundamental issue? Is she embarrassed to ask for help? Or is she so stressed that she doesn't know where to start? Or maybe she thinks the care provided wouldn't be "good enough"?

Does she have any friends, or did she do any activities before this happened? Would there be anyone there who could maybe pop round a bit and offer support? Maybe some gentle encouragement from a friend, suggesting that she seek some help would have an effect?

She may feel she can't go against your father's wishes and get help in, if it is him saying he doesn't want it.

Is she getting any time to herself? A weekend's respite care for him might give her enough of a break to be able to say she needs more help. Also, and there's no easy way to say this, he could be taking out his frustrations on her in some way that is getting to her and she's not telling you.

I forgot to add, if your partner is a GP can he/she not speak with her privately and say they can see the signs it is getting to be too much and does she want some support? If they won't accept carers, what about cleaners and a gardening service?

Thank you for the replies.

It's a horrible situation. Yes, her family are pretty local and do provide a lot of emotional support to her but I think it's practical support she needs. She's wiped out, exhausted, but she is still determined to care for him.

One example is that she had planned to go and see her father on Father's Day and couldn't go in the end because my dad would need to go to the toilet at some point in the near future and can't go himself. He wasn't able to predict when that might be so she had to stay home.

It's not embarrassment on her part. I simply think that by doing everything herself they're managing to cling onto some form of normality.

I thought maybe doing an online shop for them might be a plan? So she doesn't have to worry about food shopping. I don't want to seem like I'm butting in though?

DP would be happy to have a chat with her but she would have to come to him iyswim? He won't just go ahead and give out advice where it hasn't been asked for.

My mum was just like this when my dad was ill. I pushed and pushed to help and in the end they gave way and it worked well - it gave her a break. I also, before that, spent lots of time at their chatting with dad so she could rest, cooking and helping with the house. Eventually they had carers but it wasn’t until he died that she even began to look ok again. She never stops missing him and one comfort to her was that she cared for him as much as she could have done. You can’t take that away really. Things will run their course and eventually one way or another, they will reach a crises and have to accept help.

I feel for you - it’s a very tough time.

Maybe you could help her/them to set up the online shopping account? If they don't want any kind of intrusion, someone else doing the shopping might be too much, but if you enabled them to access it themselves that might be a lot easier for them.

My friend has just been in a similar situation, however roles were reversed. His mum had dementia and dad was carer. Dad took ill suddenly and was rushed into hospital. Had an inflamed and infected gallbladder and sepsis. My friend had to step in to help mum. It became clear his dad hadn’t been coping. House was filthy, no food in cupboards etc. Sadly they’ve had to put mum in a home while dad is in hospital and she’s not likely to come out. Mum was completely off the professionals radar as dad had done everything. I think ultimately mum has also been neglected. She’s actually flourishing in the care home. My friend obviously feels guilty but had the father accepted more support they feel it could have been a different situation and mum could have been supported to stay at home longer.

It's sad, because it's not really normal and dignified to run your partner into the ground because you wont accept outside professional support.

Clearly it's common though. There seems to be a sticking point when it comes to people coming into your home. As pp said though, if your stepmother becomes ill herself then the whole thing comes crashing down and unplanned respite is likely to be more distressing.

Could you speak to your dad about it?

If you have a generally good relationship with your SM then I’d be prepared to be a bit pushy and blunt. We’ve had this with my grandparents, she was doing FAR too much, forgetting to eat, not coping but absolutely determined she was and also very touchy and proud. My sister and I shoved our way in over the course of a few weeks. We kept ringing, offering help with specific practical tasks, turning up with food and sitting down to eat with her...and then I said I was worried she was going to keel over and die and then what would happen. I think that shocked her into accepting at least some help although still not keen. It meant though that we were able to support her in keeping him at home, which was what they both wanted. It is practically impossible to do without carers and/or wider family support. So, practical things you may be able to help with:
Online shops
Arranging/collecting medication
Liaising with agencies - this is SO time consuming and draining so if you can even take over a small portion it’s a massive help. Eg applying for benefits, dealing with NHS if anything needed, talking to social services.
Food - take it round, sit with them while they eat to make sure she eats it.
Is there any equipment you can source to make life easier? Have they had an assessment of the home to see if there’s anything they need?
Keep talking, keep being there when you can, keep trying.

Thanks all for the sound advice.

The house is neat and clean, no worries there. They actually had an extension put on a couple of years ago which means that he can be at home because it's all open plan and they added a downstairs toilet. Without that he couldn't have gone home at all.

He has a hospital bed downstairs, a great wheelchair and community physios come in 3 times a week and bully him into standing up 😂 No I'm kidding. They work him hard and get results. He loves seeing them.

I just get the feeling that something has to give and as pp have pointed out I don't want it to get to breaking point and there be a disaster that we can't cope with.

There is vague talk of them moving to be nearer my brother because that's where my dads work is located. I'm not sure of the ins and outs of what's happening with his job but I do know he will be desperate to get back to it if he can and they're keen to have him back.

If SM could return to work with outside help for my dad I think it would do her a world of good. I just don't know how to orchestrate that!

I've read the other responses and your replies. I think you just will either accept you do nothing and there will be a crisis or be more direct and tell her how worried you are about her and make offers of practical help, ask about specifics, etc. It's great that your dad is getting physio like that as it shows he wants to progress his recovery.

Just will either have to accept that should read.

How old are they both? Is it likely your father will ever return to work? What exactly is their problem with accepting carers for her to delegate some of the work to?
If she wont accept carers would she accept housekeepers/cleaners? some respite from a charity who will sit with your dad while she goes out/has her hair done etc?
How does your father feel about your SM running herself into the ground for him?

Does your SM have DC too? If so, can you work with them to talk to her all together.

It seems odd that your Dad can't currently take himself to the toilet or walk but thinks he has a chance of getting back to work. It seems neither of them have realised how bad the situation is, or are in denial.

If your step-mother isn't keen on outside help coming in what aout other things that could help - could your Dad operate a battery-powered wheelchair for example?

It's a small help, but when a friend of mine was dying of cancer a mobility scooter made a massive difference to the physical exertion on her husband. It meant they could get out and about much more (they had a hoist fitted onto their car to lift it in and out). It's expensive, but it helped.

Maybe make use of one of those companies that delivers meals that you just heat up. Wiltshire Farm Foods is the only one I can think of off the top of my head, but there are better ones. Then at least sometimes she can have an easy night meal prep wise. Or even going down and doing a mass batch cook session with her

Is there anywhere that can do respite for her? With the friend I mentioned before she went to a day care place once a week. That was at a hospice so I'm sure there must be places for people who are not terminal. Originally she went specifically to give her husband a day off, but she grew to actually love it.

This sounds very difficult, especially as they are both relatively young. The situation doesn't sound sustainable, especially for what could be be another 20 years or more.

My father was a carer for my step mother for years (she was blind and had dementia). Like your mother he didn't want any help. Eventually, aged about 86, he collapsed and had a pacemaker fitted, during which time she went into temporary care.

He carried on for about another year but was clearly not managing very well. We said we would arrange some respite care so he could have a rest. He finally agreed and we agreed that we would do it at a particular time, but after one very difficult weekend he just admitted that he couldn't cope and asked us to arrange it sooner, which we did and it turned into a permanent arrangement. He died a year or so later and I felt so guilty that we hadn't forced his hand sooner to give him an easier last few years.

My step mother is still alive and is much better cared for by them than she was by my father

Sorry, posted before ready. I was going to say that it may be moving into a care home is not the right thing your father, but your stepmother clearly needs some help.

Could your husband talk to your father, doctor to doctor, and explain that he needs to seek additional help for the sake of his wife!

Might be worth talking to the Stroke Association for advice.

Thank you everyone.

I actually do think that she's reaching a crisis point. Maybe we need to do some in-depth research and find out for sure what the options are. My dad would probably be delighted to go to some sort of respite - he thrives on company and obviously lockdown has completely knocked that on the head.

Everyone is going to their house at the weekend for his birthday (at their request, obviously) and I've offered to totally cater for everyone with food and drink which she accepted (she wouldn't normally). Hopefully I'll get a chance to sit down and have a proper chat and see where we can go from there.....

To the pp about work - it's complex but because he's the UK expert in a certain important field he has a lot more flexibility to work where he wants to.

@worryworryworryworry
I’m so sorry your dad had this stroke. I know exactly how you feel.
My mum had a stroke 2 urs ago and she is right side paralysed and cannot speak. She has lost some cognition. Although older than your dad she was very fit and active before the stroke, walking, cycling, dancing, travel abroad etc.
Dad was adamant that mum wouldn’t go in a home and so she came home to their house, thankfully a bungalow. Dad realised he could not manage by himself and so they have carers 4 times a day. Dad hates having them in but realises he could not do everything. As it is, he is 80 and does all the cleaning and cooking and still keeps the garden immaculate.
He was meant to have a carers assessment by social services but refused it.
So what I’m trying to say is that maybe your stepmom should have an assessment and then get in some carers to help out. My mum’s carrers get her up washed and dressed in the morning, come at lunchtime and teatime to help her use the loo and come at bedtime to put her to bed. Perhaps your dad doesn’t need that level of help, but you really must look into it.
Hope things work out in whatever way is best for your family 💐

Just another thought that if it is your dad saying no carers, then maybe you need to have a word with him and be firm about the amount of pressure on his wife. Point out that she is not looking well and that he could relieve the burden on her by getting in some help for her. If you put it to him like that then maybe he will agree.

Is there any social worker involved, someone who could put forward how the current situation isn't sustainable if they want him at home. Without carers she may easily get to ill to physically manage his care.