CAREGIVING: I admit it. I appreciate all the kind comments about what I am doing and how I am doing. I’m grateful for all that support: from my family, Kathy’s family, my Facebook friends, my music friends and the different health aides and nurses the have walked through the door.
I appreciate criticism too.
Tuesday Kathy was visited by Susanne, one of the home health nurses from the Baystate VNA. She checked Kathy out and said her BP and basic stuff were still OK. Asked about her eating and swallowing. Checked a blister or sore that had developed on Kathy’s ankle. Showed me how to care for it.
Then she asked about a better wheel chair. I said that may “take a few more months.” She asked “…have you heard anything lately?”
“No, I haven’t.”
She saw the way Kathy was sitting: slumping to one side on the futon. She asked about the hospital bed. I said “…the VNA is working on it.”
“Have you checked into it lately?”
“No, I haven’t.”
We talked about the Hoyer lift. She saw in Kathy’s chart that Bob the physical therapist is working on it. “Have you spoken with Bob lately.”
Again. “No, I haven’t.”
(I could see where this was going.)
I mentioned that Lisa, the social worker was looking into getting more health aide time from Greater Springfield Seniors Services (GSSSI).
“Have you talked to your case manager at GSSSI to check on it?”
Susanne said I need to call everyone again, and again, and again to get them on the stick. I have to be my own, and Kathy’s best advocate. They are swamped with other stuff and need prodding. Ask for help. Keep asking.
I realized after she left that when I have a good meeting or a phone conversation with someone, that I feel like my job is done. I wait. You just have to go back and read a few of my old posts to see it. (e.g. “so and so said, ‘something would happen’. But we are still waiting.”) Maybe it is because I am an introvert. I presume people are on the same page. But the page looks like every other page to them. And they have a book of pages to get through. I also like to be liked, so I don’t want to be a pest.
But Susanne was right. There isn’t that much time left. I’m caring for someone with Huntington’s, a terminal disease. So I called GSSSI to find out about more help. I left a message for Jennifer, Kathy’s previous case manager. Then I called the VNA and left a message for Bob the physical therapist.
April, our new case manager, called back. No, she had not heard from the VNA yet. So it was good that I called. I said, “I really need more hours.” First she wanted to make sure her records were correct about who was coming what days and for how long.
She asked “What would you like?”
I drew a blank…. I had no idea what I wanted, or where to begin.
I said that I would like help getting Kathy ready in the morning so if we could “have personal care every morning that would be a start.” She said she would check into that. I tried to explain that the biggest problem for me is getting her in and out of the bathroom, so having an “extra person here to get her ready for bed would be great.” She said she had to wait until her supervisor comes in on Wednesday to ask.
Wednesday, when Hope was here, April called back and said it was all approved. She had already talked to Medical Resources and they were going to see if they had enough staff to do it. Later Lisa called from the VNA. She was excited that she heard we got additional services from GSSSI. She was going to check on the hospital bed and ask Bob to give me a call about the Hoyer lift. Thursday, Bob dropped by when he was in the area. Kathy was asleep so we just went over the Hoyer lift and talked about my problems moving her around. He called the medical supply company and the lift could be here early next week. He admitted that he needed to write a 6 page letter of need and that he was the delay on the wheel chair.
The moral of the story is that nagging works. The squeaky wheel gets the wheelchair.