Hi,
my husband has metastatic prostate cancer spread to his spinal cord, bones and lymph nodes. During a recent hospital stay he was diagnosed with heart failure caused by the build up of fluid his lymphatic system is struggling to process. My husband is still in denial about how all these things are or might affect him. He has physiotherapy twice a week to help in move and sit up in a wheelchair and to sit in an arm chair. He believes he will recover and walk again. Doctors have talked to him about his conditions but he just doesn’t hear what they say!
We have carers three times a day to hoist him, wash and dress him and give personal care. Most of the time I manage to cope with all the comings and goings in our home, which now resembles a hospital ward with medical supplies, incontinence materials and mobility equipment in every room including the kitchen. However last week after one of the carers told me to stop interfering by moving a chair,, and had left the used bedpan sitting on our toilet, I lost my composure and expressed my frustration by saying I was fed up with carers and physio’s and anyone else who wants, just walking into my home, having no regard for me and making me feel like I was invisible.
today the manager of the care agency came to tell us that one of the two carers who was in my flat when I vented my feelings has asked not to come back to us. Unfortunately for me she is my husband’s favourite’ carer and he asked the manager to ask her to come back, he even went so far as to ask if she will come and sit with him if I need to go out for more than an hour. Having a career come to sit with him was something he has previously been against.
What with feeling as though I have to justify my behaviour to the manager and my husband’s insistence that the carer be asked to come back, I feel awful, so sad and as though I really am just a convenient person to have around, if I walked out my husband would have to have live in care or go to a care home..his adult children do not want and are not involved him his care at all.
I go above and beyond to be friendly and welcoming to everyone who is involved in this situation and to meet my husband’s needs, practically, emotionally and spiritually and I am left asking myself why do I bother. I don’t know how much longer I can cope…my husband has always been demanding of me and none more so than the last 15 months since being diagnosed with cancer. Sorry for going on so long and thank you giving me a space to talk about me.
