One crisis after another

[endofalongday]

I oversee the care for my elderly dad and for the past year (minimum) it’s just been one medical crisis after another. Tonight I’m just exhausted and I think my friend is right when she says I’ve developed a sort of trauma response. I’m always jittery or jumpy and if the phone rings at an unusual time, I leap on it. I feel totally stuck and wonder if this is common with ageing parents and caregiving?

For most of his adult life, my dad has had significant health problems (mostly heart) and even as a teenager I remember repeated visits to hospital. In the last 10-15 years he’s had 4 heart attacks, open heart surgery, cancer and now he’s got severe mobility issues and osteoarthritis. I’m 40 mins away from him but I’m the only family member nearby so every last bit of it falls to me.

In Aug he had a hip replacement and that required a 4 week rehab hospital stay so every night for a month I was up and down the motorway visiting. He got out and within 2 weeks had a really bad fall so a late night call had me zooming up to meet him and the paramedics en route to hospital. One month later he was admitted as an emergency with pericarditis and after a month in hospital, he was only home 4 days before he was admitted with a bowel obstruction. No joke but he was released last Friday and then in the early hours of this morning I got a frantic call and had to ring for an ambulance. Huge emergency and turns out he’s had a heart attack. It’s not just these 4 months but it just seems to have been this way for years.

No idea why I’m posting really just to say I feel permanently on edge and as though I’m planning around ‘the next big thing’. Is this just old age for him and the way it goes? Is there a way I can stop being so ‘hyper vigilant’ all the time?

I cared for my very elderly parents over a 10 year period, starting with my dad and then my mum who rapidly declined after his death.

During this time there were multiple medical appointments (often at completely unsuitable times for an elderly person) emergency hospital admissions (A&E late on a Friday night is not fun) along with continuous mini everyday dramas (meds, food etc, carers late because of an understandable emergency)

They had the carers, a cleaner etc but these things don't really alleviate the intease worry. For example on Halloween I would have to stay in case they opened the door to someone unsuitable. That was a huge concern.

As time progressed I was more and more on edge. Everytime the phone rang I completely panicked. We had friends who routinely called us at 10pm and that did my head in. In effect my tolerance to anything remotely out of the ordinarily was gone.

After they died it didnt really get any better. I did two things, I went on a mild dose of citalopram and I went to a weekly meditation session. With hindsight I should have done both of these things whilst they were still with me. I would also now install a Ring doorbell and cameras in the house in common areas (with their permission) to keep an eye on them. This was not an option at the time.

I would do it all again. There were some great times in between, and I miss them everyday.

No more advice to add other than offer my support. What a fantastic daughter you are. I was my parent's carer until the inevitable happened and I can empathise - I had similar.

Thank you so much for all your replies. It’s helpful to know that these feelings are normal. I have lovely friends who really rallied round yesterday (especially when it looked like he wasn’t going to make it) and that helped. My brother lives 200 miles away but he is coming up tomorrow. There isn’t much he can do as he’s very stretched himself with multiple responsibilities.

I know dad wouldn’t consider any kind of nursing care. He’s been in post hospital rehab (housed in his nearest nursing home) twice and it was pretty grim. Dad has never worked full time due to a lifetime of heart issues but he’s very well-read and mentally very sharp. He gets very frustrated by people talking to him like he’s ‘a doddery old man’. I keep reminding him he looks like one (we have a dark sense of humour!! 😊) and if they do, he should challenge it. But on the few times he’s been in rehab care, he was utterly miserable. He doesn’t have private funds so is reliant on state support.

However, in one bright spot I did learn yesterday that he will be likely be elligible for more support at home, including someone to do the shopping, cleaning etc. If there’s a family member available to do all this, it’s not offered but if I tell them I just can’t shoulder it any more, he’ll be re-assessed.

For me, it’s less about the practical stuff but more about the immense emotional load. I’ve made a rod for my own back by always being instantly available but because of the ‘hyper villigance’ and the feeling of ‘what’s wrong now’, I always immediately answer the phone or texts. We probably speak or text 4 or 5 times a day. I probably need to have a few sessions of therapy to help me manage this better.

I lived that level of hyper vigilance for about 6 months last year any it nearly broke me.
From lurking on this board before DMs hospitalisation I was well prepped to be clear and firm with discharge people, social care etc about what I could and couldn't do. It feels extremely hard and a bit callous, but it really is best in the long run.

Do you have kids? Husband? They must be feeling pretty neglected and worried about you if so.
You can’t carry on with this level of stress, its not like you live super close either.
This is an ideal opportunity while he’s in hospital to step back, either delegating to paid cleaner/carers/homehelp or seeing what the hospital or social workers suggest.
What would happen if you got squashed by a bus this afternoon? Things would be put in place and the world would keep turning. You mustn’t set yourself on fire to keep someone else warm! You’ll be the next one having a heart attack if you’re not careful.

Medical advances of the last 50 yrs or so are great, but this is the consequences, very ill people living on needing a great deal of outside help to maintain the illusion of “independence”
In your situation I’d be pushing for a nursing home, he may not like the idea but he’s sacrificing your life for his…No way would I want that for my kids.
Your brothers got the right idea, live far away and be busy!

This with bells on. We don’t know your circumstances but even so what you’re doing is too much, and you mustn’t neglect your physical and mental wellbeing
I’m considering help now, like a previous poster I probably need tablets / therapy for what I went through. Don’t be like me.

Yep, you can have no kids, work 30 hours a week and this can drive you to the edge of sanity (ask me how I know).

Thanks all - no kids, no husband but a very pressured job (which I love) on top of all things dad. It took me so long to calm down last night that I definitely had a big wake up call of realising I can’t continue like this.

I’ve reached out to a few people today including a wonderful woman at his care agency who told me a couple of weeks ago that he needs to be reassessed and I need to say that I cannot continue to help him in the same way. I’ve also spoken to my dad’s minister and asked if they’ll put together a rota of people to visit. I should have done this sooner really but it never occurred to me until I hit breaking point yesterday.

Your dad needs an alarm pendant -and a key safe -so he can get an ambulance out first. The call centre will then call you. Or a neighbour.

My Mum is a similar age and has 'incidents' - but neither of us dcs is close enough to visit every day etc, even if she is in hospital.

But her call alarm has brought neighbours round to hers to just pick her up off the floor, or to wait with her for the ambulance. The service is invaluable and your ER has someone talking to them immediately and tight through till someone comes to ERs aid.

I think you do need to take on far less. You must be negleting yourself, and presumably many other responsibilities. Which is wrong of you, bluntly. Hard though it is you have to find a way to respond more proportionately

Thanks and yes, he has that. He wears the bracelet and it connects through to the response service. Obviously the other night he wasn’t thinking straight so just rang me. I obviously don’t mind but then I had to hang up and ring for an ambulance. Was very thankful that a lovely friend nearby also answered her phone and rushed round too. She then kept me updated as I was en route.

But in the past when he’s had falls or minor issues, he’s called Lifeline first and then they ring me. The crew is usually there in under 10 minutes.

Glad he's got it, it's a great service. You really don't need to be rushing over every time / visit every day/ phone 5 times daily though. I know it's hard but you really must pace yourself.

That’s great news about the rota of other visitors.

However - I wouldn’t agree to be on the WhatsApp group/email thread for that, if any. You can imagine - endless messages of the ‘I will try to go to see him on Saturday but may not be able to this week because my dog isn’t well’ followed by a surge of ‘sorry to hear about your dog, what’s wrong?’ ‘ my dog died a year ago and I still miss him every day’ type, and you still don’t know if anyone is actually going or not. If one person would agree just to let you know when visits are planned, meaning that you can potentially skip those days, and field updates from the visitors to give you a summary, that’s well worth asking for.

Ha, neither would I. No, one person is going to ask all the people who know my dad and their availability and then just put a list together.

I am so glad you are putting additional support measures in place for your DF to reduce the burden on you.

I have two friends both single, one with a DC, who have subsumed their lives to support elderly DPs and that’s great if that’s the level of support they want to give, but they do not live their own lives any more. In my case DH put his foot down and now he has finished work he has started to do some of the visits himself and if it becomes unmanageable he will support me in encouraging them to go into a home ( self funding). It’s harder if you haven’t got a voice at your side supporting you, so please keep posting here as we all want to help.

There are nursing homes that are not for dementia care, that should be an option if you can locate one. We have a lovely place opposite my work, top floor is for dementia, middle floor is nursing care but not dementia and they take them out/arrange activities etc and bottom floor is residential and the residents are free to come and go, some of the bottom floor have partners elsewhere in the building, others just are lonely and prefer communal living. I run activities at my work and get lots of participation from the home, they even brought their dementia patients to the short carol service. It’s about finding the right setting, for your sake op!

Care home asap. Do you have POA? Look at getting that if he still has capacity.

Alas, it’s not really that straightforward. He absolutely doesn’t want nursing care and as he has capacity, I can’t (and wouldn’t) override that. The only nursing care facility I know of in his area is really not nice and his expressed desire is to stay in his home but with support. I’ve offered support for the last 5 years since my mum died but it was mostly ok. We had a nice system in place and he managed really well. It’s just the last year that things have taken a big turn but I’ve soldiered on thinking each hospital admission would be ‘the last one’. Hasn’t been the case at all of course.

I’ve called the Complex Care team in his borough and am waiting for someone to call me back. I’ve asked for him to be reassessed so we can get some enhanced support for him. I do also wonder if they can pull some strings on supported housing. I might be being naive but I’ll ask. The main thing is, I know that yesterday I hit my rock bottom and something has to change.

I feel for you OP.

Had the same and I lived abroad as a single mum.

Misery. Decline and falls last decades now - how do you sustain a state of emergency for that long?

You don’t. You’ll get iller and probably sacked to boot.

DF wouldn’t want you to ruin your life any longer.

You won’t believe this cos you’re so wired from trauma but setting yourself on fire won’t put him out.

It’s agony but it’s time to detach. This could go on for years (it’s already been too long) and whatever you do he’s going to die.

You must be hoping for that already, which is a revolting position to put you in but that’s what society’s done. Call SS and be firm about residential care. DF doesn’t call the shots and neither should they.

Saw him tonight and he’s a little stronger - amazing since he nearly died yesterday. Had a good call with social services and they will reassess him and take into account my inability to care for him and do all the heavy lifting. They say there is more help we can access and that residential care is a last resort, especially for someone with full cognition. If I can get more practical support, it will certainly help.

My father and grandmother were both sharp as a tack - right up to the very end.
Both ended up in care homes. Both prone to falls.

I've had some experience of what you've been through, though not so severe. In my experience, carers tend to keep offering to carry more of the load than they are really able to shoulder because of feelings of love, but also guilt, obligation etc. and so the burnout doesn't really ease.

Therapy has really helped me with reframing things and it sounds as though you might also find it very helpful. Travelling every day to hospital is taking too much on yourself and your own health and wellbeing is clearly suffering.

If you haven't already, I'd recommend letting social services know that you can't do any routine support of any kind - no cleaning, no shopping etc. - and have to withdraw almost totally for the sake of your own health. I'd use language like 'carer breakdown' to get across how serious this is.

With a bit of luck, it's possible to outsource most life admin, through something like an hourly paid PA (my dad has one, who I use as a sort of proxy to do the phone calls, form-filling etc that I can't manage any more, and it had made an amazing difference). There's still plenty of stuff to do on and off, but the fact of not having the day-to-day stuff to deal with has meant that I have more bandwidth.

I am glad your dad is feeling a bit better. I hope you get enough support to start to feel well again yourself.

This.
Of course residential care is a last resort for them OP, they go with what’s cheapest.
The wants of someone at the end of life do not trump those of others in the prime of theirs. I hope I don’t do this to my children.

Wants don’t trump needs, and you need your health more than DF wants care at home.

End of life is the best ever emotional pressure any of us get, but just remember a) blackmail benefits no one b) it’s not the end.

Last and very much not least, a lot of people really enjoy care homes these days.

Both DGP were sharp as tacks and lived out their last years in peaceful, companionable relaxation at the local care facility, which they certainly wouldn’t have got home alone.