I’m looking after my husband who has metastatic prostate cancer, MSCC, is housebound, unable to walk, control bowels and has a catheter. We are nine months in to this overwhelming and beyond horrendous situation. He has a chest infection/rasping cough. He is on his second round of oral antibiotics. We have no family support other than the occasional phone call or text message. I have increases carer visits from two to three a day in the hope it helps me with personal care. It is so hard to transfer my husband from wheelchair to bed/ commode. He weighs double my weight!
I am feeling at the end of my tether. I have approached the subject of residential respite care but he won’t entertain the idea. He is in denial about his situation and believes he will get better and be able to walk again. He was having physio at home, three times a week but since getting his cough and feeling exhausted by it he had cancelled the appointments.
I have asked for a palliative assessment but so far all that has happened is a physio from the palliative care team came to talk about ‘future plans’ and his willingness to sign a DNRA which my husband declined. He is adamant he doesn’t want to go to hospital for any reason. He has a telephone consultation with his oncologist at the end of February. He’ll say he feels ok. The oncologist phones him every three months . No one other than the GP who came to do basic ops, has seen/examined him since he was discharged from hospital in June last year.
the macmillan help line has been supportive and helpful but when I ask for help from palliative services they seem to think I am over reacting and just tell me he is not yet at end of life stage so leave me to cope. The stress and anxiety is real and becoming more than I can handle. Just needing a hug and someone to understand what it feels like to have no one around to talk to and help me. Feeling so sad and isolated.
Hi Teatowel
Janice had been referred for a hysterectomy but the gynacologist was not happy to provide that and instead fitted a mirena coil. After a couple of months she asked for it to be removed. She then developed a serious gynacological issue and got sicker and sicker. It got to the point she could barely walk and so we got a wheelchair. When she saw the gynacologist he ignored the discharge. We asked GP for a second opinion but his response was we need a first opion first but we never got anything from the hospital. Family were - unhelpful.
We all have a breaking point, we were lucky in that my GP was good at supporting me but even he was defeated by the hospital from tme to time.
<<hugs>>
Steve
Hi Teatowel
She is doing really well now though it took some time. I think perhaps I got a bit more comfortable with things before she did after doing the less stress course but we are over 10 years from the last chemotherapy and only on annual review by the oncology team. We had an appointment just recently and boiled down to an x-ray and some blood tests and then a face-to-face meeting.
I think she is perhaps a bit more worried about how by ankolysing spondilitis is going.
<<hugs>>
Steve
