Losing control

28^th November, 2007

I slept the whole night without waking up once. I am amazed! The only thing however was that I was incontinent of urine. I am beginning to lose control of my bladder function – yesterday evening whilst reading it happened as well. This makes me feel scared as the spinal secondaries are clearly causing motor function problems and it makes me wonder what other things will be affected – bowels and walking in particular. I can’t seem to win, sleep v incontinence. This makes me angry and frustrated.

13:20 – Dad just left. He came on his own, the first time he has driven this far alone, since diagnosed with Parkinson’s. I was expecting them both to come. He only stayed an hour, and it makes me feel as if I am a bit of an inconvenience. I know that is not true, but I do feel so lonely at times and we all have our own ways of dealing with grief and the fact I will die soon. On asking Dad if Mum is OK, he tells me Mum is afraid of driving here in case she gets lost. She has a real fear of getting confused, but I am more upset than I thought I would be. I think this is compounded with the fact the Doctors, this morning, were talking about the possibilities of where I go after here*. I have a weekend visit arranged, but I can’t stay here long term and this also goes for staying at Jue’s. The doctor asked me if it would be possible to stay at Mum and Dad’s but it would not be possible ever! It makes me sad that my parents don’t want me, even when I am dying. That does sound a bit melodramatic, but that is the reality. So I need to look at my options, nursing home/ nursing care and get a care package that I can afford, although there is no point in looking too far ahead.

22:00 – Had a real rollercoaster of emotions. Spoke to the Social Worker and told her we need to look at sorting out nursing care 24/7, but because we don’t have a spare bedroom for them to stay in and have their own space, this is not a viable option. I was left feeling very low, together with how I felt about Mum and Dad. RP rang, which left me sobbing and I just wanted him to sort it out with Jue – I am trying to deal with the changes that are happening, as I do now seem to have no control over my bladder when I sleep. I am shattered and spoke to Jue, RP the nurses and social worker. Where do people my age go if they need complex, longish term nursing/medical care.

The Consultant came to see me and has said that in my circumstances shared respite care between here and home will be possible, so after of hours of thinking what I am going to do and where will I be cared for it now seems possible to spend time in both places.

*I do think this could have been handled better at the hospice. I was struggling to cope with the thought of Andrea coming home and we had also agreed (Andy and I), that she would not die in my home, yet I felt under immense pressure to have her back full time. The average hospice stay is two weeks, and both of us were aware of this deadline. Lack of communication between the hospice staff (doctors, social workers and nurses) meant Andrea was never sure what had been agreed – this is something they need to improve; only one staff member should discuss discharge arrangements, imagine how upset and frightened Andrea became, being told by one staff member she could go home and return to her room, and by another that would not be possible etc. I felt terribly guilty for not wanting her to come home again, but she needed so much care physical and emotional and there is not enough help in the community to make this arrangement possible. Andrea needed someone with her 24/7 as she had frightening attacks where she couldn’t catch breath and was very unsteady on her feet. One thing she and I had discussed was the fact I didn’t want to become her nurse, but remain her sister, but this seemed an impossibility as the hospice assumed she would return to me, at least on a part time basis.