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?

Could you organise home care for him? It would take some of the pressure off you.

I'm sorry to say that things like this dont really improve.

This sounds awful OP no wonder you feel this way that is a LOT for one person to deal with and manage

This absolutely, if he’s in hospital now discharge planning meeting and he has to accept formal carers or a care home.
this is not for you any more

Totally get it. I would speak to my dad at least once a day but if the phone rang at an unusual time I would immediately tense up and expect something bad to have happened. He would sometimes ring in the middle of the night after dementia really took hold. It was some time after he died before that reaction calmed down.

What is the existing care set up? What's he said about what he wants for his future care? Would a care home be best now?

How old is he? And I think he's relying on you a bit too much. You visited him in hospital every day for a month???
More recently, why did he ring you and you then had to call an ambulance? I think old people can get a bit too reliant on their adult children. And really there's no point you zooming anywhere. There's nothing you can do. It's down to the paramedics and the hospital. Relax, or you're going to end up in hospital yourself!

Yes he has carers 4 times a day (state funded) but I do the shopping, cleaning, admin and I’m ‘on call’ all the time for a myriad of different questions/problems. I love him, he’s a good dad but after tonight, seeing him once again attached to monitors and very poorly, I’m just bone achingly exhausted.

It sounds as if his health is so precarious that he needs to be somewhere with 24 hour nursing care. He might qualify for CHC funding if his health needs are high and unpredictable.

please don’t take this the wrong way, but does he want all of this active treatment necessitating repeated admissions? If not he can talk with his drs about a ceiling of care and make advance decisions.

i feel your pain.

i have homecare. (and a pendent alarm set up for £25 a month) for my mum

it gives me a rest from running around and confidence that my mum is not lying having fallen indoors somewhere.

but i do feel permanently on edge. waiting for the next problem to solve. sigh.

Do the shopping online, get attendance allowance and pay for a cleaner

Maybe it's time to think about a nursing home then. 🙁It will at least ensure he's never alone.

He wouldn’t want nursing care as he has full capacity and I imagine they are mostly for people with dementia. I’ve suggested assisted living but he’s been on the waiting list for over a year and there’s been nothing available. He has a cleaner but I think some areas (like bathrooms) need cleaning once every few days. He gets attendance allowance and we use the money to pay the cleaner.

Ideal scenario would be supported/sheltered housing but there just doesn’t seem to be any available. He only has state pension and no private income. I’m going to ring Social Services tomorrow but that’s often a frustrating experience.

I’m so sorry that you’re dealing with this and I totally sympathise.
My DF is very poorly and it’s exhausting managing things . DM has been in a care home for more than 3 years and while she’s being cared for , I get constant calls from them with this emergency or that emergency with transfer to hospital.etc
Or “ she is unlikely to last the night you better get here“
( 4 times in the last 6 months alone I’ve had to make emergency plans to rush back home from overseas business trips because it was her time )
last one being Monday afternoon and she’s rallied again … total stress …

Your friend has summed it nicely re trauma response …. I think that’s what was wrong with me earlier this evening … so unsettled and restless and weepy ..

apologies , I don’t want to make this about me but wanted to let you know you’re not alone ..

not sure what to do ..
I am thinking of getting my father to a sheltered place with support or similar as I can’t afford not to work …
my friends think if I don’t act and carry on then I am at risk of burnout ….

take care

What about extra care with a domiciliary care package? I think your dad would be a suitable candidate for this. Sounds absolutely exhausting OP, I can empathise slightly after living a small part of this with my dad.

Nursing care isn't the same as dementia care. It's for people with medical needs. Care homes will often specialise in dementia care and have different areas or floors for people but different stages. I'd have to say he sounds health wise like care would be useful for him. He's at maximum carer visits and a residential placement would cover what they do and also what you do. There would be company around too. I would be talking to social services to say the four daily visits is not enough. Because it's not if he's being hospitalised or calling on you this often.

My mum has just gone into a nursing home, she was absolutely against it until about two months ago when she was so unwell she wasn’t expected to live . I wish she had agreed to go in earlier , it’s not full of people with dementia and the daily activities and constant companionship is great . Just make sure to do your research and look at reports etc. it’s been harder for me to adapt not going to my mum’s home daily as I was her carer but now after a week of her being there the relief of knowing she cared for 24/7 is amazing.

As he is now in hospital again, he should be eligible now for reablement care. This is interim residential care to get you back to being able to live independently, for up to six weeks. It's free. Tell the ward team this is what you want - it's not forever but it gives him some time to recover under supervision and you a break.

https://www.nhs.uk/social-care-and-support/care-after-a-hospital-stay/care-after-illness-or-hospital-discharge-reablement/

It talks about regaining abilities but that's very much dependent on the individual. My mum got it as she was in that in between stage of wanting to leave hospital but not yet able to manage at home.

I’m sorry you’re going through this and yes, that sums it up perfectly. Today has been very difficult day after a long day in A&E. The emergency call at 2:30am was very upsetting, he couldn’t breathe and I had to hang up, call 999 and then ring him back while we waited for help to arrive. Thankfully I was also able to ring some local friends and they raced to be with him while the ambulance came. I live a good 40 mins away so I was able to leave as soon as the ambulance arrived. But all day long I’ve been jittery and cold/shivery and I imagine it’s the shock of it. You have my sympathies.

He was very poorly and could barely breathe. He got to the phone and just hit ‘redial’ to get me as I was the last number he called. He was admitted as critically ill although seems to have improved as the day went on. But yes, I visited every day as I didn’t want him to feel lonely. He does have a local community if people but everyone was too busy to go. Disappointing but yes, I should have cut back for sure.

I am sorry OP, that sounds really hard and unfortunately that jittery response to every phone call, yup I get it too, don’t suppose I will stop getting it until the inevitable happens.

You said there were other family members but not nearby so it all falls to you - is this other siblings? Can they come up to take off some of the strain - even for example stay at yours for a week whilst you go on holiday and they become the first responder?

Does it matter if the house gets a little untidy in between the cleaners visits ?

Also whilst your DF was in hospital could you have cut down your visits to every 2-3 days - an 80 minute drive each evening on top of the visits and presumably working during the day doesn’t sound sustainable over a long period.

I know you want to help your DF but you must take care of yourself. Whilst he is in hospital he is getting all the medical care he needs and regular meals, so honestly I would try to pull back a little bit.

I second 'extra care housing' if there is one nearby. Are you in same county as him. Would be consider being housed closer to you? Extra care will often have 24 hour live in care and sometimes communal meals etc. It is a good option between home and full time care. It is tricky as he is having genuine medical emergencies most admissions, not just admitted with a fall or inability to cope, so it sounds like when he is not poorly, he does still manage with his package of care.
I also think you should just explain to him, next admission, that it is exhausting you to come daily and you will phone him instead in between visits. You can contact hospital chaplaincy to visit him if friends cannot fill the gap.
Also see if you have a local Carers Support/ Care for Carers organisation that you can refer yourself to. It might just help to have that emotional support and advice for you.

I’m so sorry you are facing this.

Id up him to a twice weekly cleaner - anything to reduce the burden on you even slightly.

Age UK might have options for shopping support.

Another vote for extra care housing. It is extremely expensive but so is every other option and it might give you a little bit of respite. There’s an extra care place in Banbury I know that I would move in to tomorrow.

You must be shattered. This might sound harsh, but you need to do less, or you'll get to the point where you can do nothing.
I'm not saying ignore phone calls or stop dealing with emergencies. But you need to knock the extra cleaning on the head, and do a bit less visiting if he's in hospital for long periods.
It's hard when you're the only support for someone but this really isn't a one person job.

Oh love I feel so sorry for you and your dad. I could have written this post two years ago when I, an only one in my late 60 was caring for my mum.
I’ve always said the worst part was the anticipation of the dreaded phone calls, then of course the endless trips to A & E people looked at me with disbelief when I used to say I suffer from PTSD
but it’s no joke. Mum has passed away now, but I still can’t think about hospitals without feeling sick.
The last time my mum was admitted aged 92 I promised myself I wouldn’t let her home, her house was very unsafe for her anyway. I battled with the social worker for weeks, I didn’t have POA but eventually the SW agreed a care home was the best option. It was the SW decision in the end not mine which helped.
Please get in touch with them again. Tell them you can’t continue, and that he’s unsafe living alone, there’s things they can put in place, you don’t have to carry on with this alone. Best of luck to you both.

There is just not enough sheltered accommodation. A relative of mine had a stroke still in his 50’s and in discharge from hospital was able to move straight into a warden controlled flat at a normal local authority level rent. Now, these types of accommodation don’t exist and people lose independence unnecessarily going into hugely expensive residential care. You have too much on your plate OP and 40 mins from you is too far. It’s good he already has the carers coming in.

please don’t take this the wrong way, but does he want all of this active treatment necessitating repeated admissions? If not he can talk with his drs about a ceiling of care and make advance decisions.
This OP. Rushing into hospital to patch up things which are never fully reversible and lead to further decline is not the only option.