Dear Kristie:
I just read your messages and my heart goes out to you having faced similiar situations with my husband who passed away 9 months ago.
Since Gord is in palliative care I would like to suggest you speak with the palliative care nurses and doctors as they have so much more insight into what Gord's meds are doing to him, his change in personality and all they symptoms you have observed.
I found that speaking to these knowledgeable people and the professionals on Canaidan Virtual Society I was able to understand my husband's meds and his illness more. They gave me information I could understand as a lay person and this helped relive my anxiety about John's change in personality, his need to sleep more, his inability to speak as he was just too tired and worn out.
You suggest taking Gord home from his palliative care and you speak of having to work and then spend hours at the hospital. I provided palliative care to John for 18 months with the help of a visiting palliative nurses and a wonderful doctor who came to our home, we were indeed fortunate. However, I would carefully look at the pros and cons of taking Gord home in the state of illness he is in. Naturally we want what is best for our husbands and we feel we can do it all but you cannot do everything, Kristie, you need to look after yourself and your health as you will not be able to all things working and then providing care for Gord.
I know from experience that looking after John at home wore on me and I was not aware of it most of the time until I could no longer sleep a full night, I was waking to every sound John made, looking after the meds, shots, etc takes a toll and I was not working.
I would dearly suggest you speak to the palliative care team and seek out their advice. With Gord so ill he may need hospice care soon and these are things you need to get advice from the palliative care doctor and nurses.
You have done a good thing by turning to Canadian Virtual Hospice as you will have support from many of us who have gone through what you are experiencing or are now going through the same thing. You can vent your frustrations here and no one will judge you and will be there to help you when you most need help.
Take care of yourself and know you are doing all that you can in your situation and turn to CVH when you need some understanding words.
With fond regards
Xenia