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
My name is Steph, I'm part of the team who look after the Online Community here at Macmillan. I hope that you're finding the forums to be helpful and supportive.
I am sorry to read about everything that you're going through with your husband. It looks like you have had lots of good advice from Community members. I am here to add to this support and offer some information and contact details if you need them.
We hear that you have an awful lot to cope with and that this is impacting your wellbeing. We completely understand that contacting services and filling out forms might cause added stress. Unfortunately assessment is usually the only way that healthcare services can ensure that the right support is going to those who need it.
I'd really encourage you to reach out to the Macmillan Support Line to talk everything through, or even whenever you just need a chat with someone there to listen. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.
We also have some information here to help support you when your loved one has cancer. There are sections on both emotional and practical support for carers. This includes lots of information about who is here to support you, how to access help and more information about advance care planning. Your needs are important and we're here to support you as best we can.
There is some detailed information about accessing help for carers from adult social care.
When being assessed or attending appointments, it is really important that both you and your husband are open about the challenges that you're facing. This will ensure that you're accessing the care and support that you're both entitled to.
If you are unhappy with your care, this information from Macmillan might be helpful.
Macmillan are here to support you both, but you might also want to access some dedicated carer support from Carers UK.
I hope this is helpful, please do let us know if you need further support with anything. You can contact the Community team by email at community@macmillan.org.uk
