My husband has incurable spinal & lung mets (the primary is bowel cancer, diagnosed & treated 2 yrs ago))
He has been home now about 6 weeks. He was admitted as an emergency to an orthopaedic ward as it was thought he had a slipped disc, but the MRI & CT scan told us a different story. he was moved to other wards but in the end sent home as there is nothing more they can do for him. He is now unable to walk, or sit up unaided and has to be hoisted from bed to chair or chair to bed or commode or anywhere.
I care for all his daily needs and attend to all his personal care, the district nurse comes in once a week to check his pressure areas, though he doesn't really have any as such - but he does have areas where the skin has been rubbed as he's tried to move himself.
We did have carers for 2 weeks but in all honesty they weren't really useful, they were nice people and helpful when they were here, but the system isn't geared to help people when they actually need it, they weren't here when he needed the commode, they weren't here when he needed to move out of bed because the pain was too great etc, so I took a quick course in hoisting and in the end we decided to stop the care, our daughter, who lives fairly locally with her young family, also learned how to hoist her dad.
So really we are managing. Intially after feeling very abandoned I think I'm coming to terms with things, we seem to have had to nudge and cajole and fight even for support. We have been on both sides, as I know a lot of you also have, of the cancer merry go round, and it seems to me that if you are treatable all the the stops are pulled out, if you're not......well that's it.
We had to ask the GP to visit - despite them getting the discharge summary etc - when she eventually did - we had to ask for referral to the palliative care team - who, incidently have contacted us once , but have still to arrange a meeting.
Meanwhile my husband seems to be going slowly downhill, sometimes he is bright, but those times are getting fewer, and I keep thinking - I'm not trained for this - I have a huge responsibilty and no one has told me how I cope. I do feel a little alone sometimes.
Feeling a little overwhelmed sometimes.
Hi and a very warm welcome to the online community although I'm sorry that you've had to find us
I see that you joined the community a few months ago but that this is your first post in this group. I'm sorry that none of the members of this group have been able to share their experiences with you yet and wondered if it might be an idea to join the much busier carers group.
To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and copy and paste your post from here into a new thread there.
Unfortunately there are lots of people in the carers group in the same position as you and I can assure you that you'll never feel alone with their support.
Sending a supportive ((hug))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
