When JD was in the hospice, she was assessed for home care. Carers that come to our house and help JD getting out of bed, washed, dressed etc. All things non-medical. All things I can really do myself.
When they did the assessment, JD was really poorly and 2 people were needed to roll her over in the bed, wash her etc. So she was assigned 2 carers coming to our house, 3 times per day. An hour in the morning to get her up, half an hour at lunch time and half an hour in the evening to put her in bed.
After having JD home for just a few days, I realised she did not need the carers that much. She was by then able to walk again with simple hand-holding and I felt the carers as more of a burden than a help. I mean, there was nothing for them to do and due to the schedule, they came to put her in bed at 7.30pm! Far too early, considering she does not get out of bed until 10.30!
So I cancelled the two later visits and just kept the carers for in the morning. But even that is really not needed. I can do it all myself easily. And yet, people keep telling me not to cancel the carers completely. I would much rather cancel them and when the time comes, re-book them when I can no longer do things myself.
The idea is to relive some stress for me. But I actually find it quite stressful to have to take their schedule in to account. JD has a hospital bed but most of the time, she sleeps with me in our double bed. When we wake up, around 8, I put her in her hospital bed and I sort out the catheter etc. Then I have a shower and make JD breakfast. She eats brekkie whilst watching TV, waiting for the carers to arrive.
The carers are 2 young girls, barely 20. They mean well and they are really kind with JD. But you can tell they lack a certain life experience. For example, it took them quite a while before they started cleaning up the bathroom after they finished. Or making the bed. They do it now so that is a bit better. I found myself being annoyed at having to clear up after they had been. What is the point of having them if I could do it myself in the some space of time AND leave my house tidy afterwards?
Apparently the idea is that I can sleep late and just watch tv when they are here. But I am just not like that. So I feel a certain pressure to be showered and dressed before they arrive. After all, I can not really leave JD alone for long when there is nobody else in the house so I can't have my shower after JD is up and dressed.
I am not explaining it very well I think. I guess I am just struggling to let go of some of the freedom of being in complete charge of my own time and my own house.
On a positive note: things seem to be going quite well with JD at the moment. It is difficult to explain what is going better and what is going worse. She seems more alert when asking simple questions such as: "do you want a drink" and "would you like to go out" but other things she is just not responding at all. Physically things are going quite well I think. She can walk half the way to the shops without falling over (much) so that is good. We went to the rugby again today and it seemed she had a good time, even if she did not seem to watch the actual rugby much :-) She was distracted by spectators in Halloween costumes.
I am now thinking it is probably not going to be a matter of weeks before she dies. When she was in the hospice and so poorly, I really could not see her make it to Christmas but at the moment, I think she could be like this for a while.
Which brings a whole load of other long-term issues, mainly financial ones. I get £53 a week in carer's allowance, JD gets £120 a week in Disability Living Allowance and that is all the income we are entitled to. How does the government think we can survive on that? I mean, I gave up my job to care for JD, which is surely cheaper than a nursing home. And yet, I get no unemployment benefits or anything. I guess we'll cross that bridge when we get there.