Hello (again...)

Hi, I posted at the start of the year but haven’t been able to post since due to drastically changed circumstances.

I live n England and am a carer for my adult son. I’m also a carer for my aunt and my dad who live near each other in my home town back in Scotland.

In the week of lockdown my dad was sectioned due to a long-standing mental health condition, my son was told his remaining vision was hanging in the balance and my aunt was given an unsafe discharge from hospital after neurosurgery. My aunt has moderate dementia. When hospital rang me to say they were about to discharge my aunt, I came up to Scotland with my son and my husband, concerned that she wasn’t fit enough to return to her home. However it then became clear that there were active Covid cases in my aunt’s ward. and we decided to care for her in her own home as she was so frail at that point. To cut a long story short, my husband and I have been caring for my aunt since she was discharged; we cannot have carers in the house because my son in the high risk group as he is immune-suppressed. It was definitely an unsafe discharge; no follow up support, nothing except a DNR form stuffed in her toilet bag. Hospital also refused to test my aunt for the virus even though they knew my son was high risk. The doctor in the hospital advised that my son and my aunt isolate for 2 weeks; crazy, given that I help my aunt with personal care and my son also has autism. Staff who delivered the hospital bed were wearing dust masks from B&Q that they had bought themselves. The ambulance staff had no PPE, even though hospital promised they would.

My dad developed pneumonia in hospital and was moved to a medical ward where he contracted Covid-19. He’s survived but the hospital is still in lockdown; I haven’t been able to visit him and haven’t seen him since March.

My son should be seeing his ophthalmic consultant every six weeks but has been given an appointment for the end of the year. I plan to contact his consultant to discuss a plan for my son as he will need several procedures carried out to try and preserve his vision. He only has sight left in one eye so will need a lot of support during this period.

All things considered, I think we’ve coped fairly well.

My aunt’s mobility has improved and her post-operative delirium is mostly confined to night-times.

My son’s vision has stayed stable.

My father will hopefully be discharged in a few weeks.

However, when lockdown allows for it here, we need to go home to England with our son for a week to sort out urgent matters there. We plan to come back to Scotland so that my aunt can be seen at a memory clinic as she hasn’t had a formal diagnosis. She also needs support with pain from arthritis. I want to be back here too to support my dad when he’s discharged from hospital. I need a plan to be able to go home and return, and keep my son and my aunt safe in the circumstances.

I’ve contacted a small care home near where we live and they can provide respite care for my aunt providing she has a Covid-19 test beforehand and it proves negative. However we won’t be able to visit her during that week.

Is it unreasonable for me to expect her to be okay for a week if we can’t visit?

Am I putting my son at risk if my aunt has spent a week in a care home?

Would it be safer to take my aunt back to my home for that week? We have no downstairs loo there. We are also very, very tired.

Should I be asking my aunt’s GP and the psych-geriatric doctor who’s recently given us some support to refer her for respite care locally in Scotland. Infection in care homes is higher here.

I’m sorry this is such a long post!

Any thoughts about how to keep my aunt and my son as safe as possible in the circumstances so we can get home to sort out matters there?

Hi Alison

Phew you have got a lot going on. Well done for keeping it together.

I personally think that whatever decision you make you have to put your sons needs first, especially as he is high risk.

It will be higher risk in my opinion in care homes in England however individual homes will vary. There has been a problem when homes have used Agency staff who have gone to several homes and spread the virus.

One would hope they have better procedures now.
Have you spoken with your aunts GP to ask his opinion in the local area where your aunt lives?

Its decision only you can make at the end of the day . But difficult choices.

Are there no other relatives that could look out for your aunt?

I’mreally worried for you, you cannot be in so many places at once like this.

It’s not fair on you and your family.
Your son must be top priority, he deserves to have a happy mum who has time for him, where you can be back in your own home again.

Try to think ahead 6 months, rather than look at the immediate picture. Aunt’s dementia will be worse, now is the time to look for residential care WHERE SHE LIVES. Otherwise she will end up in a cross border dispute about which authority is going to be responsible for her care bills for the rest of her life - something you probably haven’t thought about.

When dad is discharged, where to? Maybe it’s also time for him to think about moving into long term accommodation.

How old are the various members of your family?

Do dad and aunt own or rent their homes?
As dad has been sectioned, this means in England the the NHS would fund his long term care I believe, but I don’t know about in Scotland. Be sure to find out.

Another thought if you are continually driving backwards and forwards if you either break down or there is a car accident it will effectively break yours and your sons self isolation as you will be in contact with rescue or ambulance services.

One of the reasons myself and family are staying put in our home town.

Thanks Cloudygal. I agree about putting my son’s needs first. One of the reasons we need to go home for a time is to help him with a housing issue. I’ve heard today that the Scottish government is testing all care home residents and staff as a way of identifying 'silent carriers". I think finding respite care here in Scotland may be the way forward and can speak to the GP. Otherwise I could ask my brother but this would mean he would have to stop nursing, and one of the reasons we came to care for my aunt was to enable him to keep working during this difficult time.

Bowlingbun, thanks. Meeting the costs of care isn’t an issue. Luckily, my uncle left my aunt well provided for should she need to be cared for in later life.

My father wants to go back to his home with an increased care package.

Neither my aunt or my dad wish to go into residential care and I’m happy to support both of their wishes for as long as is reasonable. My dad’s circumstances would mean that the cost of his care would be covered by the local authority. He is 88 and she is 90. Up until a few months ago, they were both living happily in their own homes with support.

We don’t intend to drive back and forth. We just need to go back home to sort out urgent matters there, once the restrictions here in Scotland allow for it.