Panicking about Elderly Parents. Really need some advice to calm me down

[CanIbeRio]

My parents are 88 and 86

Dad currently in hospital after suffering stroke. To be released with a care package - 2 carers 4 times a day. Is completely immobile

They are sending him home to my mum who has multiple health issues- COPD, kidney failure, heart failure, stenosis.

I'm currently staying with her as she's recovering from Covid which despite testing myself for every day since tests were available my worst fear came true, and I passed it on to her. She is OK but did have to go to hospital over the weekend. Now I don't feel i can rely on tests - it's like having a comfort blanket removed

I'm absolutely terrified of myself or the carers bringing covid to their door again or even worse, the dreaded norovirus as it would be carnage for 2 immobile poorly elderly people. I'm severely emetophobic and it just fills me with dread as I would have to deal with it and it seriously terrifies me

I'm almost at the point where I dont want myself (or my family) to go out or to a shop....I know this is irrational and I need to get a grip but my mental health is buckling under the fear of this and the pressure I feel under to care for these 2 elderly people. I adore them, but it's robbing me of my life

please help x I feel so gloomy and depressed

I'd suggest you make it absolutely clear that you cannot and will not continue to be carers for your parents, and that it would be unsafe to discharge your father home. It seems to me quite ridiculous to suggest that a man who is completely immobile can manage with just carers visiting four times a day. What is going to happen if there is an emergency, which unfortunately is only too likely? Neither is going to be able to summon help, let alone help each other.

My Dad had a stroke a year ago and it sounds like he has the same level of immobility to yours. We were told by the stroke rehab unit that, because of the immobility, his needs couldn’t be met by carers visiting him at home.

He has been in a nursing home since January and I am very grateful we were firmly told no to having him home. The care he receives there takes significantly longer than x4 30min visits. It takes a hour to get him washed and in his chair (with 3 carers at times) for example. A carer (or multiple carers as needed) pops in every 30 mins at least just to check on him (with him calling for them more often as he needs) and reminds him to drink, uses a slip sheet to reposition him, cleans up spilt drinks, sort medications, opens/shuts windows/curtains, props up various parts of him with cushions etc. There is always a nurse on duty for his unit and they order, collect and dole out his prescriptions 4 times a day, take obs twice a day, change his catheter and manage GP appointments. They are very quick to take action on infections and are much better at getting antibiotics out of the gp than Mum and I ever were pre stroke. If he were at home then my Mum could never leave the house and both of their interactions with other people would be minimal. Dad’s speech is very intermittent but he has made new connections with the carers, other residents and the activities team. He is far better entertained and supported where is he, as much as I want my Dad to be who he was and live at home, what he has been through means that a nursing home is the very best place for him. It does help that we have been very pleased with the nursing home and both Mum and I are local to it so can pop in regularly.

Can you talk through with your Mum what will happen if he soils/needs adjusting and no one is due for hours more?

How does she cope with little sleep for days on end when there is a crisis? (D&V, infection, bed sores etc)

What will happen if she needs to be out for the day or gets delayed at one of her hospital appointments?

Who will fill in if the carers can’t get there? What level of attendance does she expect from them? It won’t be 100% so there will often be days when your Dad doesn’t get in a chair which is so important. What happens if there is a carer no show and he is stuck in a chair for far longer than he should be?

Has she thought about how vulnerable it can feel having new faces in her home so often? Her home won’t be the calm retreat she is imagining.

What will happen if they get snowed in?

How she will manage entertainment and outings for your Dad to the same level as a nursing home?

What happens if there are more nhs staffing strikes and emergency services can’t get to them quickly in a crisis?

Then it’s the smaller stuff like if her washing machine breaks but all your Dads bedding is soiled? Is she physically strong enough to push a wheel chair around on carpets etc?

Ask her if she recognises that she isn’t just making life decisions for her and your Dad, but you too. Can she really cope as your Dads carer if you are hers?

This isn’t a calming post, and I’m sorry not be able to give that to you. You are right to be worried, I would be too. If your Mum can make feasible plans for each of the scenarios above that don’t rely on you then fantastic, but it’s a tall order.

@StarinasPirinTablet
That's a ver sobering post. I'm so sorry this happened also to your dad
Thank you for your insight. I feel so despondent for what's to come. Mum just wants him home. She's lonely and missing him. I don't think she realises he's not really going to be the same. Fir various reasons she's only seen him a few times in tge 5 weeks he's been in hospital 😢

Sorry things are so bad.

I'd start phoning care homes first thing tomorrow to find a nice one that has space. The good ones may be full so it is really worth finding out early what the options are.

If you can afford it, get a live in carer or more care visits for the next few weeks to bridge the gap until a care home space is available.

And as previous posts have said , don't expect the NHS to coordinate things or organise much care. You will need to do a lot of admin and phone calls over then next few weeks until you can work out a new stable living situation for both your parents.

Mum would be mortified. She's a beautiful soul and worries about "putting on me

That is what's going to happen if your Dad comes home though. In between carer visits it'll come down to you. Maybe read her @StarinasPirinTablet post above to show what could be done for your dad in a proper care setting. And you could take her there to be with him every day. Whereas at home you'll be worried, watching him struggle, or trying to lift him by yourself and so on, between carer visits.

OP

in the kindest possible way, from your posts you don’t sound as if you are robust enough to take on the caring load that is coming your way. Are you receiving any help for your anxiety?

the bottom line is that you cannot wrap your parents in cotton wool and protect them from everything. They are old and unwell. What we can do for them is make the time they have as comfortable as we can - while respecting your own needs and your own boundaries. You need to keep yourself safe too.

has anyone explained to your mum the reality of your dad being at home? FIL was adamant that he wanted MIL (immobile, dementia, osteoporosis) home and social services would have gone along with it to save on care home fees. we had to spell it out to him that she would be left sitting in her own poo, possibly for hours, if it happened btw carer visits. it was very hard but we would not have been doing either of them any kindness by letting her come back home in her condition.

Are you prepared to be called to deal with that and multiple other situations OP? @StarinasPirinTablet post is spot on.

MIL went into a home where she is clean, warm, fed and safe.

As someone who has cared for 2 parents ( with help from brothers) my advice is don’t do it. My father died of cancer and at the end was immobile.
The carers visit at 6 am to give breakfast when the person is still asleep and then at 11am for lunch when the person is full from breakfast. They won’t wash if the person is asleep when they arrive. They want to put to bed at 5 pm.

So here’s what you do. You refuse discharge until they make a proper continuing health care assessment and instinct on a full OT visit. Re CHC funding you need to get proper advice ( this assumes your parents will be privately funding for care). I think that the alzheimer society can give advice re CHC funding and how the domains work .

I would start calling care homes to find somewhere suitable where they can go together. My tip is to try independent ones as they tend to be more flexible regarding couples eg they let grandparents in law share a room despite only one needing to be in the high dependency wing, and only changed the lower level need person the low level need rate and gave him the code to get out of the wing, also was allowed a scooter which aren't normally allowed in there etc

I was in a similar position to your mum in that I was already caring for my own mum on my own and she had a terrible stroke. I was able to get her back home and a care package of 2 people 4 times a day was put in place. Strange as it may seem my life was actually easier even though it was awful for my mum. She was no longer a fall risk and we had excellent carers.

We were also referred to the local hospice for my mum’s extreme vulnerability and low life expectancy. They really helped and kept an eye on us. Also things really improved heath wise once my mum was out of hospital, not physically but she had really bad hospital induced delirium. That went within a week. Unbelievably my mum was unconscious a full 24 hours only 2 days before she was discharged . OT had come round and we had all the equipment in place. She never had a bedsore. (My mum died peacefully in her own home in January) NHS (hospital at home- twilight nurses-palliative care-paramedics) all superb that week. Personally I would see how it goes at home first, a routine in place and the carers have legal obligations, they have to raise any issues and everything is logged. The idea they will not show up when someone is that ill is just ridiculous. Your mum and you might find the carers a huge support. I did.

It’s all so very different for all of us isn’t it. DM did get bed sores sadly

I agree with others that I would refuse discharge. There is no way you can meet the needs of an immobile person between you and some intermittent carers.

You might be extremely lucky like the poster above. I hope you are. But it’s not the norm.

OP I know you don’t want to be scared but you must face reality. Your dear parents are long in the tooth, very unwell and have done a brilliant job of remaining independent until this point.

Your DF needs a very high level of care now. Your DM not far behind and currently not being realistic. It won’t be the same as it was before.

This becomes exhausting for all those involved and I would get outside help and as much as possible. You must prioritise yourself in all of this at some point too because it’s easy to go downhill fast. The stress and sadness is truly overwhelming. You will need energy after their deaths as well to cope with the admin side of things too. It’s pretty onerous too if I’m honest. The whole thing is a shocker, all of this and I’m so sorry you have to experience it. Pls look after yourself. I hope they continue to live the best lives they can. ❤️‍🩹

Could not agree more about everyone having different experiences, my experiences of poor care was in the hospital sometimes, a nurse managed to drop my mum / she was devastated and in a respite care home, where the ratio of staff to patients was just ridiculous. I hated feeling that I had no control over how my mum was treated.

OP, I have a friend who was in your position a year ago. What they did was find a care home for their mother and arrange for their father to visit every day, for most of the day so that he still felt able to care for her although the reality was of course that the care home staff did most things. But this has been successful in that they both are looked after appropriately both physically and emotionally. The father has his meals with her - just goes home to sleep. Would something like this work do you think?

I just wanted to add that after MIL went into a care home, much against FILs wishes, it turned out very well. He was able to visit her daily and just spend time with her rather than trying to do care. And he made friends with all the nurses / carers - it became a really important social space for him as he was alone at home. He even went up for meals and parties etc. This would never have haven’t if she had gone home with carers 4x a day as was proposed.