Safest type of respite care

[Alison_19111]

I live in England but am in Scotland caring for my Aunt. She's 90 and was discharged too early from hospital after neurosurgery; she has issues with mobility, hip pain, cognitive deficit and delirium. My husband and adult son share the care, but we need to take my son home to see his ophthalmic consultant and help him move house. I'm organising respite care for my aunt while we're away and need advice about which option is safer for her..

The options are -

1. A friend who is a Carer can travel up from London and stay with her in her own home. Her employers down South have never asked her to be tested.

2. I take my aunt to England and she stays in a care home there. My aunt will need to be tested but staff in the home aren't. Visiting once a day allowed.

3. Social Services arrange respite care here in Scotland. My aunt will have to be tested and staff are tested every 4 days. No visitors.

None of these options are risk free but it's important that I choose the least risky because my Aunt is vulnerable and my son is coming back again with us and he's shielding.

I know there are other factors to take into account as well as risk of infection, but safety is my priority. My dad was admitted to hospital here in Scotland in March and was doing well until he contracted Covid-19. The last few days he seems to have given up the will to live and tonight they had to push his bed over to the window so we could wave at each other. I don't want my Aunt to go through the same experience because I've made the wrong decision. But neither do I want to put my son at risk.

Advice welcome!

[bowlingbun]

When was she discharged? Did anyone tell you she was entitled to 6 weeks free Reablement Care? If you can't now care for her, push for residential Reablement care!

[Alison_19111]

Thanks for responding BowlingBun.

March.

No.

I'll try, but her HomeCare manager says it's not their responsibility as hospital discharged her. Hospital says it's not their responsibility as she's under Community Care. The Community Mental Health Team say it's a medical issue. The hospital say it's a Psychgeriatric issue. When we've asked for support for her from her GP he says he'll help but doesn't get back to us.

If there had been this much hand-washing going on earlier in the year, Covid-19 would have done a runner.

[Alison_19111]

My Aunt's Care Manager, who said she would call me back yesterday isn't available today. I asked to speak to the Duty Manager who tells me, via admin, that she has emailed the Care Manager and that I'll hear from her today. When I pointed out that she isn't available today, I was met with a silence.

Trapped in a Kafka short story.

[bowlingbun]

In that case, the only way your aunt is going to get the care she needs is to tell Social Services that as from a particular date you are going back to your home, and will be unable to provide any further care for your aunt. Then let health and social care fight it out between themselves.

I know that this feels wrong, but it is the only way she is going to get the support she is going to need for the rest of her life, as she is going to need more and more as time goes on. It shouldn't be like this, but it's the sad reality.

Taking her to England is really a non starter, as then you will probably struggle to get Scotland to fund her care in England, an added complication to everything. Such "boundary issues" are another sad reality.

[Alison_19111]

In that case, the only way your aunt is going to get the care she needs is to tell Social Services that as from a particular date you are going back to your home, and will be unable to provide any further care for your aunt. Then let health and social care fight it out between themselves.

I know that this feels wrong, but it is the only way she is going to get the support she is going to need for the rest of her life, as she is going to need more and more as time goes on. It shouldn't be like this, but it's the sad reality.

Taking her to England is really a non starter, as then you will probably struggle to get Scotland to fund her care in England, an added complication to everything. Such "boundary issues" are another sad reality.

Progress! I finally managed to secure 6 days of respite care with the support of community health professionals who intervened with Social Work. So no need to threaten abandonment. They've been wonderful. They even rang me back today to check that there had been follow up.

BowlingBun, I'm sure you're absolutely right with your comment about cross-border funding but safety was my issue, not finance. Having the respite care funded is definitely a bonus though! But safety is definitely the priority. Screening has been tightened up dramatically here in Scotland and visiting doesn't begin until next week so I'm happy that it looks as if my aunt will have respite care here in Scotland and be at less risk, and also won't have to endure the journey down South and back.

I've learned about the importance of understanding the criteria for respite. My aunt never received an assessment as part of her hospital discharge, has had no follow up after the neurosurgery, had a cognitive assessment prior to discharge which shows marked decline making it unsafe for her to remain at home with carers 'popping in'. GP and Hospital have been involved with pain management/support with delirium which has been ongoing for 8 months. I haven't slept in my own bed or been home since March and my son needs urgent review of his immunimodulation therapy with his consultant back home. Aunt not safe, critical for us to secure respite.

The process has been exhausting.

If anyone else is in a similar situation, don't give up. It is possible.

[bowlingbun]

I understand totally that safety is your top priority, but so many people on the forum have bitterly regretted decisions they made in a crisis, because they didn't understand the way the rules regarding Health and Social Services work.
They have been left in some truly terrible situations. I am very well aware of the rules, and share them, so that people can make informed choices.
I'm really pleased that you have managed to get a bit of respite, but that still doesn't address the main issue, of how you can get home long term, knowing aunt is safe.

[Alison_19111]

Thanks, BowlingBun, but long term care wasn't the issue. It was about working out which kind of respite care would be safest while we go home for a week. Apologies if my post gave that impression!

[Alison_19111]

More complications and another lesson learned.

How to help the person you care for access testing prior to respite care!

My aunt was referred to Hospital at Home a few weeks ago for pain management. When she was being discharged I was told that her GP would organise testing prior to respite, but the GP refused.

On discharge, my Aunt was referred to Elderly Community Mental Health team due to delirium/memory issues. Their Team Leader told me that her GP would sort out testing too, but the GP refused again.

I contacted my Aunt's Care Manager at Homecare, and they signposted me to the District Nurse, who said they were carrying out the tests but I needed to ask the GP for a referral. I requested the referral but the GP refused again.The receptionist referred me to the website NHS Inform which clearly states "Anyone in Scotland aged 5 or over, who is self-isolating because they are showing symptoms can be tested. " Aunt doesn't fit that criteria and given her condition it wasn't appropriate to drive her to a testing centre. I explained the situation again to Homecare who said they were shocked that GP had refused again. They said they would contact GP directly and get back to me. That was two days ago and I still haven't heard from them.

I booked the test Friday evening anyway, helped Aunt take the test at a drive-through centre yesterday morning, and received the negative result she needs early this morning.

Taking a 90yr old in a frail condition to take the test in these conditions isn't okay. I'll contact the surgery and ask for an explanation.

Meanwhile, if the person you're caring for needs a test pre-respite care, doing it this way is an option if you're left with no other alternative.

I may need respite to recover from setting up respite....

[Lindi]

Hi my brother (78) has been in Hospital after a fall he was tested before discharge for respite to a care home at the hospital