my husband is in the same space but the end of the beginning has come along quite quickly after years of luck with treatments. He now has a hospital bed downstairs at home and is on a Syringe driver. I think this has been a blessed relief because he has not been out of pain for years and now he mostly is. Every day is a rollercoaster with ups and downs, but the peaceful state he is in makes me (and everyone else) feel much better. The hospice have organised everything for me, the GP comes out if I ask and pops in for a visit too. The district nurses come, at least once a day but more if I need them. The hospice are providing night sitters so that I can get some rest, they have been such a boon, lovely people who are calm and know exactly what to do, not in the least intrusive. We are having a care package shortly, I’ve simply asked for someone to help with personal care and to help me change the bed (I possible to do on my own as hubby is too weak now to get out). I can’t thank everyone enough for the wonderful support I am getting at home, and it means that we have all our home comforts without the need for hospital admission. We agreed a TEP with our doctor, this means no acute hospital admissions, it was scary as John has sepsis a few months ago (it was what made us decide not to go to hospital again due to 23 hours on a hospital trolley with severe pain in his hips). We do receive antibiotics if John needs them and in fact, have some at home for use immediately if he gets an infection. He has a supra pubic catheter from previous retention issues so that’s the source of infections for him. I decided a week ago to give up my usual stance of being superwoman, and now accept all help offered on the basis that I need to be available to my husband and not his nurse. The district nurses told me to call my brother in law form Sweden three days ago if he wanted to see John lucid again, he’s bounced back a bit now his beloved brother is here, which is a great comfort. Don’t be afraid if you get offered these services at home, I’m surprised and elated that I have been able to manage with support.
with my love, I do know what you are going through