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

Can they go into a care home for some respite care and are they both up to date with their covid jabs? It may just ease things a little for all of you.

What a nightmare!

Are you and your parents happy for Dad to go home? Are the discharge team aware that there will be times when he will be alone. Having had a Mum with COPD, heart failure, kidney problems and MS I know that over winter it is likely your Mum will need multiple hospital admissions for chest infections and UTIs.

I’m wondering if they should be moving into a care home. My Mum is no longer with us but I remember and I imagine you have icy chills of fear every time the phone rings. At least in a care home they would be safe.

I'd be happier with them in care but dad also has dementia and they think he'll be better off at home. Mum doesn't want to go into care

Yes, icy chills when the phone rings....exactly

Please, looking for encouragement, not prophecies of doom x

Oh dear. That's tough OP. These elderly folk do scare us. The reality is carers do go from patient to patient and stuff happens. They will clean up though if norovirus does happen.

Perhaps no immediately but is it worth looking at warden controlled areas. Still a move but their own place with some back up? Don't be afraid if your mum does end up in hospital to say dad needs respite care. They will fight it especially if they think you will fill in the gap bit it will take some pressure off.

If they can't look after themselves and you are not happy with that responsibility (which is completely fair enough!), then unfortunately the only other option is a care home.

My DM had dementia, which became too much for my father (even in his 60s with none of his own health problems); my sister and I both had very young children and also worked so we couldn't help in any practical sense, so a care home was necessary.

It was a dementia-specific home and my DM settled in okay. It was a very friendly and homely place.

You can then go back to enjoying the time you have left with your DP as a daughter, rather than spending it constantly fretting about them.

Why do you think you passed on covid, covid and Niro are in hospitals, care homes and the community. Have they carried out a home assessment for dad, us the house all set up ready for him, who are they hoping will look after him in between carers visits and overnight or if mum is unwell.

My mum was immuno compromised
and never got Covid despite carers, hospital admissions, appointments etc. best wishes for your dads return home.

What fear has to do here, two very elderly people who are hanging on a thread anyway. How having carers brings fear to you. Sorry, but you are right that your thinking is not correct anymore. You don't want doom prophecies???? - what do you think the reality in the coming months and years will hold also?

Better off at home than hospital, take that as a positive.

Is there any way of stretching to a live-in carer? (I know this may be a pipe dream; MiL went through her savings at terrifying speed when it was needed, but she stayed at home as was her wish.) Or could you find a local 'befriender' to be around for some of the gaps between care visits?

It's horrible. My mum (almost immobile, and with dementia) was discharged with the same package to live with my very frail dad, who of course wasn't going to just ignore her yells if she tried to get up and fell. We constantly expected to find that he'd injured himself in trying to hold her up. She did have to move to a care home and it took a few to get the right 'fit'.

Please, though, don't make infection worries your main concern. It's just not the main priority over getting the general care sorted.

Is your mum able to look after your dad by herself? If not, then you must notify the discharge team that this is the case and as such he cannot return home. He can go into respite for further assessment. Do not tell them you're able to drop everything to support your parents! Tell them it will be an unsafe discharge.

I strongly recommend you ask MNHQ for this to be moved to Elderly Parents (report your own post or start a new Post there) where there will be people with experience who can give advice.

I think you (and your mother) need to be refusing his discharge as being unsafe and insisting he be assessed and discharged into an appropriate care home, but others can advise exactly how you do that.

So sorry OP this sounds very tough 😔 your parents are probably better off at home with carers than in a care home in terms of catching covid and norovirus (which is rife in care homes every winter) it does sound like you are struggling coming to terms with how much caring responsibility you have on you, which is not surprising - it's a lot. Try and carve out a little time for yourself, even if it's a half hour here and there. Put some birdfeeders in the garden and sit out there with your coffee and watch them. Take a walk round the block and concentrate on the nature around you, look up at the trees and feel the wind on your face. Nature can be really healing.

On a practical level, do you have siblings that can share the caring responsibilities? Can you have shopping delivered if you're worried about catching something or go to the supermarket when it's not very busy? Try not to let your mind run away with you and catastrophise - that is the anxiety taking over. Take each day as it comes, don't think too far ahead. Can you download an app like Calm, they have some good mindfulness meditation and anxiety/stress busting ones too. Be kind to yourself, you're going through a tough time 💐

I'm so sorry, this sounds very upsetting and frightening for you and it's never easy to think of your parents dying.

You might think this really heartless but I honestly don't mean it to be - my granny lived to be over a hundred and she was really unhappy about it. My grandad died about 30 years before her but even after that for a long time she was cheerful and enjoyed life. She was independent and had a good social life and was I think pretty happy. After around 90 it started to change, her friends had all died, she was still living independently but it was harder for her to manage and her naturally slightly pessimistic attitude turned into an overwhelming fear of all sorts of dire outcomes (that never happened). She used to actually say "I don't know why I'm still here" in a very despairing tone.

No matter how careful you are about COVID, noro or other infections you can't keep your parents safe from old age and they won't live forever. Even if they did live forever it wouldn't be a good thing for them.

Clearly you love them very much, I'm sure that they also love you and wouldn't want you to be robbed of your life trying to keep them alive forever.

It's very hard for them and for you but I think the best way forward is to try to focus on keeping them as comfortable and happy as they can be given their health. Realistically that probably means full time care, at home is great if ithe cost can be managed but you can't do it by yourself. Get as much help for them as can be managed and get as much support for yourself as you can as well. Some kind of therapy or counselling might help you cope better with your feelings - they are completely understandable but sound very overwhelming.

I just wanted to post from one emetophobe to another, to say that I absolutely hear your worries about norovirus. People without Emet can't actually imagine the terror the thought alone causes, it affects my life massively and gets worse in times of stress, so no wonder you're struggling more with it at the moment.

Tell the hospital and discharge team your mum can't safely look after him, and you can't do it anymore. He needs to go into a home sadly, but it's the best place for dementia and stroke victims.

Please ignore @Ifoughthefight who doesn't get it at all.

Why do I have to get it? I am just a participant and like many people do get some things, don't get others. So be it, the world goes round

Thank you all for your responses. The care package has already been agreed with us as I can't see an alternative - mum doesn't want care home involvement for either of them so I feel we have to try it. If it doesn't work out and it's hard on mum then we'll have to rethink. Maybe respite til we can see where our heads are. No home visit has been made - there have been talks of a hospital bed but I don't know what's happening about that. I hate the idea of carers as he can't get to the loo on his own so will be sat in his own mess til the carer next comes in - it just all seems so undignified ☹️

I do have a brother who does his best and helps where he can. However, he has a stressful full time job and I'm not working as I've taken early retirement. He also lives 50 mins away whereas I'm just round the corner. I maintain a strong weekly presence here (and at home) providing support, company, help with day to day chores, shopping, medical stuff etc. I am nominated carer for my mum and am on standby 24/7

I can see this level of care ramping up and that is triggering all the anxieties I mentioned in my original post. I feel so stressed. I'm not carefree and it's affecting my mental health

How do I get this moved to elderly parents?

Do your parents know how much this is affecting you. With the hospital bed it gets delivered and put together by a company but there needs to be room for it. The hospital discharge team arrange everything. You report your last post to mnhq and ask for it to be moved, I can report it for you too.

Thank you @MissMoneyFairy
Mum would be mortified. She's a beautiful soul and worries about "putting on me" and is forever talking me to gi home, bless her. I can't tell her
I'll report, thanks x

All of this. Be very direct that you can not help in any way. You need your sanity. I've helped out with one parent for years, and that was with a very capable spouse doing the full time caring. I'm still resentful now as my mental state was absolutely shattered. Never again.

@CanIbeRio I have to caution you against trusting that parts of the NHS will talk to each other.

Examples from our experience:
Discharge late on Tuesday, hospital bed delivered on Friday. 3 nights too late.
Another discharge, summons on a Friday, district nurses who administer injections daily refusing to provide daily visits until Monday.
Documented care plan a work of fiction ignoring medical advice.

What really got me is that you said they haven’t even done a home visit and mobility issues - probably means hoists and other adaptations are needed for the carers to be able to wash, turn and do the vital job of preventing skin infections.

Trust your fear - it will be too much.

@FiniteSagacity 😪
That's scary reading

If you're going to comment on a post, surely you should make some effort to get what it's about?