4-20-2022 Linda was discharged to our home yesterday morning

(Tricia)

We had thought Linda would be discharged into hospice care over the weekend, but a procedure to place a drain to aid with removing any fluid that might build up again around her lungs was delayed until Monday afternoon. That meant she was not discharged to our home until Tuesday morning.

I met with the hospice nurse and social worker from the Visiting Nurses Association yesterday as well. They did their initial intake, but I have to admit I thought I would receive more help and guidance.  I chose VNA because it offered private-pay caregiving services, as well as hospice and palliative care, and I had let the coordinator know last week that I would want to set up caregiving coinciding with Linda's discharge, particularly overnight. We didn't find out until Monday evening that the VNA could not set something up that quickly.

That meant it was a rough day yesterday, as I tried to put into practice what I've learned by observing the nurses at the many hospitals and facilities over the last months. I thought the hospice workers would offer some training--but, no, they were only here to ask intake questions and meet Linda. The nurse did help care for Linda while she was here for the intake, but then she left me apologetically with very sympathetic words and a pat on my back as she wished me "good luck." My friend Dauria, bless her, came over with her daughter last night and helped me get Linda ready for bed. (Thank you so much...that was so needed.) 

Linda then had to be checked every two hours overnight, just to move her pillows from side to side and to be sure she kept her oxygen cannula inserted in her nose (her oxygen levels stay steady as long as its inserted, but will drop quickly if she takes it out, which she sometimes does.)  In between the check-ins, Linda is mainly asking to be allowed to sleep, especially in the mornings.  I'm hoping that after so many chaotic weeks in medical facilities, she will finally be able to get some rest.

I have been scrambling yesterday and today to try to find another home care agency with availability. I just received a call back from an agency that says they can provide coverage overnight tonight.If we can set that up, I can finally try to sleep tonight.

I know this blog will become harder to write as each day passes. It was much easier to write when we had good news to share and things were heading in a hopeful direction. But Linda's broken hip and subsequent surgeries put an end to that. Entries from now on are likely to be short, but we will try to let everyone know what is happening. Thank you all for your support through this incredibly difficult time.

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