Hi, everyone. It's been a while since I posted anything in general about the current state of affairs here. It has been really quite a challenging year for me and my family.
I accepted the wonderful VA facility offer of respite twice this year. I spent the first one working overtime at my job, it being the heart of our busy season, and spent the second one, at the beginning of March, with my sister near DC, as her husband was dying unexpectedly and quite quickly of multiple causes. He had gone to the hospital with shortness of breath, and was diagnosed with flu and a bacterial infection at first, which became known to be instead lymphoma and widespread cancer. Since my own sweetheart was already at the hospice unit here in Maine, I was able to fly down immediately and am grateful for the time with my sister, her dear husband, and their two splendid sons. My brother-in-law was 64, and he died just three weeks after he fell ill. Such an awful shock. Such a loss.
I have to say I would die myself before going into the ICU at Holy Cross in Silver Spring MD. I have never witnessed such imperious and callous cruelty outside of film. Nurse Racheds run the unit, and they continually defied humane orders of the doctors and robbed my sister of any hope of peace at the end. The culture on that ward is vicious. The good nurses seemed cowed. We have complained and will continue to do so, and I am determined to take every opportunity, like this one, to advertise the malfeasance. Don't go there!!
The contrast with the dear, kind, loving care my sweetheart is given at the VA hospice unit in Maine couldn't be more dramatic. Still, when he went back for what was to be 8 days for an attempt to address his sleeplessness and agitation this month, he crashed badly, in what we think now was an overreaction to the initial sedative. We all thought he was dying. I was called in for a whole staff meeting to discuss the situation.
On Tuesday he couldn't eat or drink. He couldn't talk. His eyes wouldn't track. He was unresponsive. When the meds were adjusted, he came back a bit, but the puréed diet he was on was no incentive to survive, so I went in with a jug of cream, a stick of butter and a salt shaker and added these to everything. I brought in soft goat cheese, hummus and avocados, which he loves, and got him eating those. Mind you, the nurses were giving him protein fortified ice cream for breakfast, and lots of custards and puddings, too. They were trying!
I was really having a hard time last week, in shock and grief. I called his children and advised them to come, as the doctors had said I should. And then the meds were fixed. He slept Wednesday night, and was better on Thursday. He slept Thusday night and ate solid food on Friday. He even walked with his walker and me to support him. I was ecstatic. I was doing a happy dance every where I went.
I got him home on Saturday, on a pass just in case. The kids came from near and far, with grand babies, one brand new he had not yet met. We had a wild wonderful Easter Holiday. Our beloved sister-in-law whom we had not seen since before her ordeal in Iran joined us. It was glorious. I called the VA on Tuesday and had him officially discharged.
He is still tired, and weak. I don't know how long we have. I don't know how or if I will go back to work. ( Part time this week.) I don't know if I can continue to transfer him. But I learned how far I am from being ready to let him go.
The VA nurse in charge of his care will be talking to me tomorrow about home hospice services. I am so grateful to her and all of the staff. Honestly, no one has ever gotten better care than we have.
And that's where we are. I have pea soup on the stove I had better get to.
Love to you all. Ec