Older man (Asperger's syndrome) and parents' care


I’m not quite sure where to post this, because primarily it pertains to what must be a familiar story of older people with complex needs refusing care. However, this is affecting my husband who has AS.

My husband is an only child. He has always had a rather difficult relationship with his mother and an even more distant relationship with his step-father, whom he never forgave for marrying his mother within a year of his father’s death (over 40 years ago).

His mother is about to be discharged from hospital after being held in hospital for assessment under DoLS. His mother is barely mobile and was becoming incontinent at night and confused. His stepfather is almost immobile due to arthritis in his legs and persistent sores. The couple live in a house that is isolated and they can no longer access toilet or bathing facilities upstairs.

Basically, my husband has moved in temporarily to look after the couple. However, it is becoming obvious that their needs are too complex for my husband (or anyone on his/her own) to manage. My husband’s mother insists they want no-one but my husband to look after them.

I am a bit out of the picture because I am caring for our son. However, my husband wants to know if, when his mother is discharged, he can simply refuse to deliver any care and move back into his lodgings. He is very distressed and phones the hospital several times a day to state that he cannot look after the couple.

I am posting here because I know this must be a familiar situation, but I want to know what the implications could be. Would the copule be left with no care or would they be forced to accept some care from social services?

If your husband feels he can’t cope or even doesn’t want to (which is fine) then other arrangements will have to be made.

The hospital can’t discharge anyone in those circumstances until a care package is put in place - it would be an “Unsafe Discharge” - remember that phrase and quote it to the hospital if you have to.

Your husband’s parents are by no means unique in wanting their offspring to care for them, but what they want becomes less important compared to what they need.

Social services will have to make a “Needs assessment” for both of them and decide what will happen next. Care on discharge from hospital is free for up to six weeks and is known as Reablement care

Care after that may have to be paid for depending on their financial circumstances, the cut-off point for free care is if an individual has more than £23.5k in savings - if they do, they pay for pretty much everything (after reablement care) - until it’s gone.

Your husband needs to make immediate contact with…

PALS can co-ordinate between him and the hospital. No one can be force to care for anyone.

I’d tell your husband to move back home as fast as possible! Seriously, he can’t be forced to care for anyone, and it’s time both his parents had a reality check.