Changes
That last one is no joke. I make plans to work in my yard or get something done, sit down and hours later, I wake up, having missed most of the day, or the whole evening. My house is a wreck, my yard is scraggly, and the plants I was so happy to have growing are on their last legs, and not because it's fall.
I've put on weight and lost muscle tone because it seems I'm always sitting. Work. Doctor's offices. Driving from one place to another. And it's mentally exhausting, so by the time I get back home, the rest of me is too tired to do much.
The doctor visits seem to be never-ending. Wound care, pain management, dentist, urologist, regular doctor for various ailments. And the middle of the night phone calls because she's fallen and is headed for the Emergency Room. I'm tired. SHE'S tired. All that wears her out.
She's also in pain. The tops of her feet, her ankles, her knees, her bottom (being wheelchair bound, she's always sitting - that takes a toll on your buttocks and upper back of the thigh), her back, her shoulder, her neck... Suffice to say, everything hurts. Tylenol wasn't helping much, so we tried the Pain Management track. Tylenol 3 twice a day and hydrocodone on Wound care days. She was on it for a couple of weeks when I asked her how it was doing eliminating her pain. Mom told me that it took the edge of some of it, but it didn't even touch a lot of it. It felt like running in place, trying to get her comfortable. Nothing seemed to help.
We returned from a Wound Care appointment, where she was declared healed from the latest amputation. I took her to her dinner table, then went to the library for a Family Night Meeting where they were discussing hospice.
It was a very informative meeting. Mom had always fought that idea because she looked at it as a death sentence, but I think the constant pain has softened her stance because when I told her I was going to the meeting, she told me to listen very carefully to what they had to say. One of the things they addressed was the "death sentence" myth. The purpose is to make end of life as comfortable as possible. If a person goes into hospice, then dies a week later, they waited way too long to go in. I listened to everything they had to say, and came to the conclusion that this would be the way to go, if Mom would agree.
I talked to her at length, explaining everything as best I could to her, making sure she understood what I was saying - a sometimes tricky proposition. In the end, she agreed with me, so I called and set up an evaluation. They got us in the next day.
A nurse came to the home. She observed Mom for a while before I arrived, then we spent the whole afternoon answering questions and giving history. I don't know that Mom had to be there for this part, but I wanted her to know what was going on. Her dementia isn't always obvious, but if you spend any time with her and let her talk, it really does jump out at you. Her insistence that she had to protect her two-year old baby from the bullies came as a bit of a shock, but if you listen long enough, you can figure out what she's talking about. About 6 months ago, a man named Ed came to live at the home. He was scared and angry and had no idea what was happening, so he lashed out. Mom was scared of him. He kept coming into her room and going through her things. She became obsessive about locking her door and having sunglasses or a sleep mask on her all the time so she would be invisible to him. I've been here through all of this, so I know what it's about, but it did sound crazy to the nurse. A little more than a week ago, there was a sea change in her attitude about Ed. Her dinner mates had taken to picking on him and pushing him around, and the Mama Bear in Mom came out. She decided to love him instead of being afraid of him - so she looks out for him and keeps the mean ones away. She says he's like a little child and it's her job to protect him.
I was working this morning when I got a call from the home where the hospice nurse was visiting Mom. She had refused her pain medication this morning and was being uncooperative to the point of combative. I live close to the home, so I was there in less than 10 minutes. Although they had been together for about half an hour, I introduced Mom to Nurse J and explained that she was from hospice and trying to get to know her so she'd know the best way to take care of her. Mom relaxed a moment, then turned to me wanting to know who'd assigned her the job of taking care of Ed. No one, Mom - you took on that project yourself! I redirected her back to the Nurse and showed her the name badge that had the hospice logo on it. Told her that she would be meeting quite a few new people in the next week - a social worker, a chaplain, the nurse, the doctor, and there would be volunteers who would come and visit with her - and to look for the name badges so she would know they were from hospice. She seemed to understand that, so I hope she doesn't give anyone else a hard time.
We went back to her room and talked to her about her pain. We're going to try some different, stronger medication to see if it helps. Mom balked at that saying her pain tolerance was great, but I told her - I see you squirming to get comfortable all the time. Your shoulder hurts anytime you move your arm. You've been complaining a lot about how tender your feet are. She sat there nodding. And I told her that she shouldn't have to exercise her pain tolerance. She's earned the right to have no pain if it's possible and that taking the pain meds would help keep her from having it. If she's in pain, it's already too late - we want to keep the pain away, prevent it in the first place. She seems to have accepted that, and took her pain meds before I left.
My brother and his wife visited her this afternoon. They said she seemed happy and comfortable, if a bit foggy. To be honest, with her dementia, she's headed towards foggy already. I'd rather she be a bit foggy and comfortable than more alert and in a lot of pain. She's winding down and I want to make sure it's as easy for her as possible.
With the help of hospice, that will be easier. And if she's good, I'm good.
❤️
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