Does anyone have any advice where to begin arranging home help?
I feel in the dark for the next steps of dad's care and everything feels uncertain. Dad is currently staying in the local hospice for pain management as his health declined over Christmas and he was in chronic daily pain. Thankfully since he has been admitted into the hospice, their care of dad has been above and beyond and they have managed to get on top of his pain relief. Dad is now comfortable with a pain management place and is looking forward to coming home.
Before dad was admitted into the hospice, I was his sole carer and don't have any other support - I was responsible for everything from looking after dad's physical needs to looking after the home and managing his medication. It quickly got on top of me as I had to continue working full time for financial reasons and despite my best efforts, I struggled to maintain the upkeep and standards of care that dad deserved. My own mental and physical health plummeted and I quickly burnt out under the stress.
I think the hospice are planning to send dad home soon as while he has been discharged from oncology and no longer receiving treatment, he is not at end of life. He is incredibly frail and at risk of falling - even in the hospice, he has fallen more than once because he is weaker and unable to stand for longer than a few minutes. I desperately want dad to come home in line with his wishes (I live with him) but I am unable to sleep with the stress and anxiety of facing the responsibility of being his sole carer again. I want to arrange home help to support me but don't know where to begin and it is so hard to just even get a quotation of how much this would cost to see if it is an option to have some help. I have to continue to work as without my job we don't have any other income.
Everyone I speak to (professionals) have said to just take one day at a time but I feel I can't as I assume that with anything else medically or NHS, there would be a waiting list and I would like to set up the services and help for dad (and myself) before he comes home. I'm not sure if this is reasonable to expect, but I don't know what I will do from day one looking after dad when he comes home if nothing is set up or in place.
I'm in tears writing this and have never felt more alone or frightened. Would appreciate hearing any advice or own experience from other carers.
Sorry to hear about what you are going through, your dad is entitled to a needs assessment from his local council and at the same time you should ask for a carers assessment - see this page from the NHS
The hospice may well have a list of contacts for care providers in your area and so may be able to provide you with some direction.
In terms of money it may also be worth checking if you get all the benefits to which you are entitled - a call to the benefits team here might be helpful on that front.
When Janice was really ill I tended to find being at work where things were normal and I felt in control comforting sense of normality. Fortunately my employer was very supportive at the time and I tried to make sure I was doing jobs that were not overly critical in terms of time so I could get to appointments as needed.
<<hugs>>
Steve
