continued from Chapter 13: part 3
Three of us caregivers in the support automatically stayed close together and each of us faced tough options.
Evan and Rachael faced their own different scenario; during his last few months, he was no longer able to work and he stayed home with regular visits from the visiting Nurse.
Rachael returned from work one day to find Evan profoundly depressed. It seems the nurse, when she had come by that day, had told him that since he was terminal he should pre-register at the nearby general hospital so that he'll be sure of a bed when he needs it. He wasn't prepared to hear that he was dying.
Eventually Rachael quietly signed him up for a palliative care ward, but when she went to look at it, she found that there were only four-bed wards, no private rooms, and she knew that he would want as much privacy as possible. He was that kind of person.
From what I've heard of palliative care, she would have been given all the privacy she needed.
When he was clearly dying, she managed to get him into a private hospital room. At night she slept on a sofa in the room and left for home around six thirty in the morning, to clean up and do any pressing business and then returned. The floor was noticeably short-staffed and she was fearful that he wouldn't get enough attention if she wasn't there for him. She wanted to be with him and she was, at the end.
My friend Berry brought Ronald home from the hospital and she managed with the help of her son, Don. The discharge planner was the only one who ever told her that Ron was terminal and the planner did mention a hospice group nearby who could come to the house and help out.
She chose to go it alone with Don's help. Ronald was free of pain and managed to exercise a bit each day.
Don moved in with them for the remaining months and with his help she managed.
He went to work each day but she knew relief was at hand in the evening.
The doctor stopped by regularly to keep an eye on things. She despaired at trying to keep Ronald propped up in bed instead of sliding down so that his feet were uncomfortable pressed against the foot board. She devised a good plan to combat this; she kicked off her shoes, stood on the bed straddling him, then she carefully gripped under his arms and at the count of three, pulled him up in place. Worked beautifully. in their pre-illness days, she was tiny and he was tall and skinny so it conjures quite a picture.
She and Don had a reward for getting through the day. First,they got as much liquid nutrient into Ron as they could, then they settled him for sleep. When he was thoroughly asleep, they would cook a splendid diner, preceded by a healthy drink and play some Vivaldi; the music and the good food eased the tension from them.
Ron's bedsores forced her to send him to hospital for his final days and she regrets that she couldn't hang in that little bit longer. But again that's hindsight. She was probably emotionally and physically depleted and in need of more help.
Each family has its own need, whether it is for a temporary condition that is expected to be cured or whether it is for a terminal patient. Don't ever feel that you are going through this alone. There are answers out there for you. Ask your doctor, or call a visiting nurse association or speak to the hospital discharge planner.
And take notes.
continued in chapter 13: part 5
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