I really don’t know what to do and am urgently looking for some advice please!!
My mum has been my dads full time carer for approx 9 years, he has MSA. She has been amazing looking after him and has gone above and beyond with his care. During COVID-19 she shielded him but stopping daily carers and two days at daycare. This has slowly been taking its toll and then just over a week ago she hit breaking point and we got adult social care involved to find emergency/crisis respite. It had been in the cards that dad would go into full time care/nursing home as his needs were starting to get too much for mum (both are in their 70’s). Mum physically and mentally cannot have him back at home as she is very near to having a breakdown so as a family (my mum, myself and my two brothers) agree that it would be best for him and for mum for him to go into a nursing home. He has agreed to to go into crisis care but won’t agree to go into a nursing home and adult social care are bringing back home next week and have said that they can have carers come in and support him at home. He sadly can’t do anything for himself so needs 100% care and can only communicate through thumbs up and thumbs down. But because when asked if he wants to go home he says yes and adult social care say that they cannot make him stay longer. I feel so useless as my mum cannot cope with him or have him at home even with carers as she needs time to mentally look after herself. I wondered where we stand with moving him to a full time care home even though he is saying no. This sounds so mean but he would be cared for, and will have all his things around him. He only ever watches tele and rarely engages with us when we are visiting. It’s heartbreaking also seeing my mum like this and her needs not being taken into consideration. Any advice will be gratefully received. Thank you!!
Such a difficult situation for all concerned. No one can make someone go into a care home or move home. Unless they want too. However, the person providing the care can withdraw that care. Social Services deal and hear regularly from relatives with such issues.
The only way to make your self heard is to give written notice of withdrawing care. There could be a needs assessment for Mum which states clearly she is unable and/or wants to continue providing care. Even with a care package - which will change even after being set up.
Is an uncomfortable position to be in. What Is the home your Dad is currently in like? Perhaps he doesn’t like that particular one.
Asking someone if they want to go home or a nursing home is like asking a turkey to vote for Christmas. It’s a cruel, heartless question that isn’t, in my opinion, inappropriate.
First there should be an assessment of his needs, then consideration of where those needs are best met, home or residential care.
Mum is clearly mentally and physically exhausted, even if carers were provided four times a day for an hour each time, that still leaves mum continually on call, and responsible 20 hours a day.
Rather than ask dad where he wants to go, someone should have a gentle discussion with him, saying what he needs cannot be provided at home, his needs are too great.
You are brilliant speaking up for mum, and now almost parenting mum too.
Ask mum’s GP to say, IN WRITING, to Social Services that she CANNOT care for dad any longer.
Ask the doctor to arrange an URGENT "NHS Continuing Healthcare Assessment (CHC is how it’s often referred to). Google CHC Framework for the full details.
Ask Social Services to arrange it too, they probably should have done it long ago.
I had to tell the hospital mum was in that her front door was locked, was going to stay locked, and I was the only one who had a key, before they accepted that it would never work for her to go home again, and mum agreed.
It’s a horrible, horrible situation to be in, for all concerned.
This sounds like a difficult situation for you, I’d suggest you ring our helpline on 0808 808 7777 Mon- Fri 9am - 6pm and they’ll be able to tell you what you can expect in terms of benefts and housing .
It might also be helpful to download our ‘Looking after someone’ guide from our support page.
This situation is so similar to mine. I have cared for my mum for 7 years, full time care has been on the cards for her for a while too and covid 19 has made me hit breaking point. I’m young though, I can’t do it anymore, I need to live my own life. Mum is currently in a home but it feels like social care are under the assumption I’m still going to care for her when I feel better. She is undergoing a mental capacity test at the minute…she is saying she wants to come home too.