Carers with Heart Failure

I am the main Carer for my wife who has MS and is immobile following breaking both ankles, all physio being stopped in March. She has a morning carer for 45m to get her up with my help and 2 evening carers for 30 mins ( as likely 20) to put her to bed. I do everything else including feed her and housekeep and deal with her double incontinence and work. I have recently been diagnosed with heart failure which leaves me with breathing difficulties and fatigue and poor sleep. The process to get me treatment is underway but is grinding along at snail’s pace., I have just waited about 6 weeks for an echocardiogram, now I have to wait for a review with a cardiologist. Every day seems to get harder and harder. Our Carer company can’t provide more help - no staff - despite funding being available. Our local authority is still looking for someone to put a caring contingency plan together - request some months ago, they can provide no emergency cover at this timer. Carers can also be very techy about level of PPE they will wear when in our house which generates a lot of stress. Situation is unsustainable, any suggestions please.

Mr Big Panda,

I’m sorry to hear about your recent diagnosis. Caring is hard enough without having to deal with your own health problems on top.

A range of options and questions spring to mind.

Could your wife go into rehab care until care at home can be sorted out. She is after all recovering from two broken ankles and would benefit from physio once the casts are off.

Is your care agency the only one in the area? Could your wife either change agencies or have two agencies which cover different visits.

It doesn’t sound like you should be helping the morning care worker - you are risking your own health - that needs to be a two person visit too.

Alternatively, you could ask for direct payments and employ care workers yourselves, you could use a payroll charity to deal with the paper work - this gives you more control but can also be a headache if the care worker phones in sick etc.


Hi Melly
Thanks for your support and suggestions.

Putting my wife into rehab care would be a last resort, chances of her coming back home would not be good. Good places are very short supply and then COVID! Her ankles have mended, but the physio at the hospital and elsewhere was cut off because of COVID, she occasionally has some private now, last month, or so but I have to drive her there (1 hr). Lots of agencies in area but all short of staff and we have been trying to change to get a better package for 3/4 months but no interest and they will not share - ie 1 do morning, because its against their COVID policies. 3 mornings we do get 2 carers for a shower ( if they have 2 to send) We have funding for 2 every day but they cant supply. It’s also early, 0700 and I am finding it more and more difficult to get up at 6 and do the prep for them ( else they would run riot through the house every morning and that gives me a further problem).

Sorry my response is a bit negative but by stating the details you may spot flaws in my thinking or in what is being provided and that builds the conversation which others may also join in on.

Hi again, in Special schools, supported living etc they get round this by having a night in between e.g staff would work at one site/ one bubble one day and not go to a different one until the next day. Perhaps they different agencies could do all care visits one one day or even alternate weeks.

Hopefully other will have more ideas too.


Hi Melly
It would make sense but organisation skills…

Thanks for responding to me, makes me feel a little less on my own.

Have you applied for NHS Continuing Healthcare?

Yes, think we had that for a year after the accident.