30 October 2010

To care or not to care?

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.

I'll learn.

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.

25 October 2010

A long overdue catch up

Apologies for not having posted an update here for nearly a month. We have moved house and there is no internet in the new flat, no mobile phone signal and the mobile internet dongle I bought to tie us over has no signal either, unless I walk out into the front garden (so that is where I am now whilst JD is having a nap)

A lot has happened in the past month. JD went into the Cynthia Spencer Hospice whilst we were moving house. Initially it was going to be only for a few days. Unfortunately, JD picked up a bladder infection after a few days, due to having been given a catheter. This made her extremely poorly and so she was not able to leave the hospice until this cleared up. Further more, the doctors wanted to make an assessment of JD’s care needs so that I could be given the right amount of support to care for JD at home.

The doctors at the Hospice are in charge of symptom control but the doctors in the Coventry & Warwickshire University Hospital are still in charge of her cancer treatment. And the Oncologist wanted to try giving JD a VERY high dose of steroids to see if this would reduce any oedema (swelling) of the brain and make her a bit more alert again. Combined with the infection, this completely knocked her out. She was so poorly that I decided, together with JD’s mother and the doctors at the hospice that there was no point in continuing with the chemotherapy regime as this seemed to have no benefits at all, other than trying to prolong life. And the way JD was, it seemed it would be a matter of weeks, rather than months anyway.

So the chemo was cancelled.

But then things started to pick up again. JD became more alert, more talkative. Or rather, more responsive. It seems that once the side effects of the massive dose of steroids had worn off, they actually are doing her some good. She is still confused and unable to hold a conversation but generally she will answer questions if they are not too complicated and do not involve describing emotions or actions etc.

After a particularly lucid conversation I had with JD, she said she wanted to continue with the chemotherapy. So I informed the doctors of this. Now she will go to Coventry hospital once more for a final appointment. After that, her treatment and monitoring will be moved to the local hospital here. It saves us a 3 hour trip every 6 weeks.

She can come out with brilliant one-liners and when she laughs when people make jokes, it is wonderful to see.
In the end, JD was in the Hospice for about 2 weeks. I missed her terribly but it was good to have that time to settle in to the new flat. I must thank all the friends who offered help. Some by coming around with manpower, others came with food and yet others kept JD company in the hospice whilst I was running around organising things.

Now that JD is home, we have been given all kinds of equipment. A hospital bed, a commode, a bath lift, an electric rise/recliner chair (which JD plays with ALL.THE.TIME). Our sofa has been raised, a ramp installed for the wheelchair, and carers come in every day to get JD showered and dressed.

More later about these carers and the point of them and district nurses and GPs.