Miracles

We've made some progress.

I had an essay written that filled in details of events after we got home. But so much has happened in the last few days, I’m starting over. Mama’s condition continued to deteriorate as she stayed in bed. She vomited again a few times after we got home, and I discovered that zip style plastic bags make good vomit bags. The top stays open well enough, and you just zip them shut and toss them in the trash. She also graduated from constipation to diarrhea.

My sister, Becky came to sit with her for a while the day after we got home so I could run errands. When my sister got here, we went into Mama’s room, and I said look who’s here! Mama looked a little puzzled and said, “what’s your name again?” We just laughed it off. Becky had just been here for Mothers’ Day, but she told Mama her hair was different so that explained it, so Mama didn’t have to feel bad about it. Mama had thought it was a friend I’d introduced her to earlier as someone who might be helping me care for her. We didn’t make a big deal of it. I was free for the afternoon to get some groceries, goat food and bourbon (I have my priorities). We already had plenty of adult diapers for a while, but I needed more wet wipes and nitrile gloves. It was hard to get used to using the gloves, but I adapted. I’ve gotten pretty good at changing her diapers.

When I got home my sister and I started talking about the future. There was no way to know for sure where this was going, but we had to be prepared for the possibilities. Mama already has a will. I am medical power of attorney, and Becky is her durable power of attorney. We set all of that up when I moved here, just after we moved her in with me. But we were now officially at the place we’d expected to call too much for me alone.

After my sister left, Mama called me into her room and asked what all the noise was about, but there was no noise. Another time she had asked if I had been in her room sweeping. I had not. She began to tell me that people were in her room when I was gone. Sometimes they were there taking care of her; sometimes they were just there and she was hearing voices. These experiences didn’t distress her. Sometimes she laughed when she told me. It was just another layer.

There had already been plans in place for visitors. My brother and his wife had already planned to be in town that weekend for an event and had plans to visit. I let them know how she was doing to try to prepare them. When I walked them into the room, I made a point of saying who they were when I said look who’s here. They weren’t as prepared as they had expected. She has lost a significant amount of weight because she has been eating very little, and she was clearly weak. Even her voice is weak. They got to visit for a while, and then we got to have a chat afterward. We are all preparing for the possibility that she might not recover from this.

My cousin Laura and her husband had also already planned to visit. They’ve sold their house and are RV living for a while, traveling and visiting. My cousin-in-law, Ed is a retired hospice nurse, and they have both been through this with family members, so they were an invaluable resource under the circumstances. They very generously changed their plans to stay with me longer than originally expected. They parked in my driveway and set up camp, unpacking homey touches like garden signs, hanging plants and a wind chime. So, for a few days at least, I had someone close by to help with everything, ask questions of and simply relax with. Mama has gotten in the habit of calling me on the phone when she needs me. She has an old flip phone that she’s had for years and is still fairly comfortable with it. We keep it close enough for her to reach. So, I put Laura and Ed’s numbers in it, with their permission, and showed her how to find the numbers on her phone. When I was going to be gone, she could call one of them. They have visited a couple of times before since we’ve been living here, so after a few minutes she remembered who they were, and she is very comfortable with them.

They began to talk to me about palliative care and hospice. We’ve known that we could not get her into assisted living because she’s saved too much money for Medicaid to pay for it and not nearly enough to pay for even a week of residential care. They educated me about hospice, including in-home hospice care, with the possibility that insurance might even pay for it. I had suddenly decided I wanted to keep her at home where she would be much happier than in a strange place without family to care for her. The more they talked, the more I realized it was a hopeful option. They sat with me while I made phone calls and did research with her insurance company and some local resources. I discovered that there was indeed a provider of in-home hospice care that Medicare would pay for.

Wednesday I called and made an appointment for a nurse to come to the house to evaluate her need, and things began to move very quickly. After getting medical and background information from me and then meeting and talking to her, the nurse told me she was going to call the doctor from her car in my driveway to give him the information. That conversation might take a while, she said, “but we are going to get this done today.” Suddenly I relaxed. After the conversation with the doctor, the nurse told me that Mama was accepted. She would see a nurse once a week, someone would come to bathe her twice a week, and she would have a social worker assigned to her. She asked if I wanted a hospital bed for her. Well, yeah. They would set her up on a new regimen of medication and have that mailed to me, and they provide supplies like bed pads, diapers, wipes and gloves. All of this is paid for by Medicare. The next day the nurse and social worker came in the morning. I answered medical and background questions, and they met her. That afternoon she got a washcloth bath in bed. Everyone was kind, easy-going and compassionate. As Laura had already said, people who work in hospice are special people. The next day a box of medications came and then later that day a box of supplies. My head was spinning.

Wednesday Laura and I went out to lunch to celebrate, and Ed stayed home with Mama. Saturday Becky and her husband Don came to hang out and the five of us had a cookout and a very nice afternoon. There were more questions for Ed. Don works for Michelin, so Laura had some questions for him about the tires on their RV. Becky and Don each had a visit with Mama in her room. But mostly we enjoyed relaxing in each other’s company sitting in the shade on a lovely sunny afternoon.

Sunday was the day for Laura and Ed to hit the road to continue their adventures. I would miss them, but I wasn’t nervous about them leaving because I had local resources to call on when I needed them, and who would visit on a regular basis. The thing that the hospice program doesn’t provide is respite for me to get away from the house. My sister has made a commitment to spend some time here to lend a hand, and I had already been talking to a friend who has experience with elder care. She is coming Tuesday afternoon, and we will go from there figuring out when I will need her and when she is available.

There have been a couple of times, when I asked Mama if there was something else I could get for her, she said ‘a miracle?’ I said ‘hey, I got you an in-home nurse and you got a bath! She said, ‘yeah, I guess that is a kind of miracle.’