CAREGIVING: Wednesday I took Kathy down to the UConn Health Center for her six month checkup at the Huntington’s Clinic. (This is the same clinic I donate all of my proceeds from music downloads hint/hint/hint). Originally our appointment was to be at 2 pm but I got them to move it to noon. I figured we could avoid some of the problems we had coming back late in the day when Kathy was exhausted (see Close Call). I got her up early ish. I gave her her shower but I am still figuring out the best way to use the new shower bench. Getting her in there isn’t too bad but getting her out is as scary as crap. The bench is really solid. So that is the good thing. But the seat has a pebbly texture on it that is so non-slip you can’t slide your butt around on it; and that would be even if you had two functioning legs. I might put some sort of fabric or something slippery on it. The bathroom is so small that I need to lift the commode insert out of the toilet and park it in the living room. That way I can wheel her chair in there.
We finally heard something about the personal care / shower aide we were promised. The original agency couldn’t find anyone so it has been turned over to the agency that sends Fran (and sent Su before). Hopefully it will work out although their aides have a tendency to leave because the pay and reimbursement stinks. So we will see.
Anyway once we both had our showers, got her dressed, had breakfast and did her teeth we were off. At least it wasn’t terrible out. Marty kept watch at home. I think I have the arrivals and departures thing set up better now. I roll her out on the porch as far as I can in an old wheel chair. Then I just have to get her down a few stairs to the car door. I have memorized how to line up a mark inside the car with a mark on the railing of the porch and when the car is in that spot I can open the door and it is safer to get her in the car. I think for a while Kathy didn’t want anyone to know she needed help so she didn’t want to use a wheelchair in public. But now she does whatever. (Except use a public men’s rest room – see below.)
The trip to Farmington CT takes about an hour and a half depending on the traffic in Hartford. I leaned the seat back and tried to get her to sleep on the way down. But I had to stop and make the seat more upright when she started coughing on fluid. We got there with 30 minutes to spare. I got her into her chair and rolled her into the building. The next challenge was bringing her to the men’s room because she didn’t go right before we left. I wish they would just have solo unisex handicap bathrooms. It is a healthcare facility, after all. I brought her into the stall and she tried to pee but she was nervous and decided she didn’t really have to go. Then while we were still in there a guy came in and used the urinal. We waited quietly while he washed and dried his hands and went out. I decided I didn’t need to go that bad either!
The appointment went pretty well. Robin, is the nurse practitioner who has seen Kathy for a while now. Nurse Practitioners are allowed to prescribe meds although she does almost everything consulting with Dr. Carolyn Drazinic, the head of the program. Robin is very friendly and funny. I got to know her better through the caregiver support group that I used to attend there. She asked Kathy some standard questions. They ask everyone who gets mental health meds, especially with Huntington’s., questions about suicide or hurting yourself. Do you get stuck on things or patterns (OCD)? Has she been angry or anxious? Have you had any hallucinations? (Do you hear toasters talking to you?) I try to let Kathy answer as many as she can. Kathy tends to say yes to most Y/N questions: Do you still cook? Do you feed and dress yourself? I usually just nod the actual answer to Robin. She asked Kathy what state she was in and she knew it was Connecticut. She knew the town was Farmington, which I thought was great. She thought the season was fall, but with the weather who really knows. She said the president was Obama but it was hard to hear. At this point her head was drooping straight down so her chin was almost on her chest and it was hard to hear her. Robin got on her knees to talk and joke with her. She could see Kathy smiling at different points. She got her to spell “world” correctly w-o-r-l-d. But she couldn’t spell it backwards. She got to the letter “D”. She was able to name a bunch of her siblings. She would have named them all but she was talking so slow we would still be there.
There were some standard neurological tests like sticking out her tongue; and following a pencil eraser with her eyes; that she did perfectly. Robin handed her a sheet of paper with the words “Close your eyes” on it. She said to “Do what the sheet said.” Kathy read it out loud and closed her eyes. Then Robin asked her to fold the sheet of paper in half, and hand it back to her. Kathy started to fold and pull it between her fingers to crease it. But her hands were shaking a lot and she just couldn’t quite complete it.
By then Kathy was getting really tired. We talked about meds and we will be withdrawing some of the meds now. They have pretty much done what they were supposed to do. Since she doesn’t have the tremendous anxiety issues that she had (before I started this blog) we can cut back the amounts of some like Lexipro and Zyprexa. Later we may increase some others since Kathy’s biggest problem is dystonia rather than movements. Her body is bending into a rigid pretzel. Robin also wants us to get a better wheelchair that reclines and supports her head better. So we talked about getting another physical therapist to come and do an evaluation before we can get another one. That means the Visiting Nurses will be coming in again. I think?
We made another appointment for six months that, with luck, she will be able to do. She was walking at her last one; but with this disease you never know. I handed Robin one of Marty’s dog biscuits I had in my pocket for her dogs. She started laughing. “I’ve had patients and families give me a lot of things but never a dog biscuit!”
On the way out we attempted to use the Men’s Room again. Kathy wanted me to stand outside and guard. I said sure, “…once I get you on the toilet”. But then she decided she didn’t need to go at all again. So I wheeled her out in the hallway but I went back in so I wouldn’t explode. I got her comfortable in the RAV with the seat leaned way back and a pillow. She may have slept a little but I know she was relaxed.
Back home the transfer from the car… to wheelchair… to chairlift… to chair– went smoothly. Marty was hyper as usual when he is alone for a while. I got Kathy to her familiar bathroom in time. She must have peed a half-gallon (it was close to five hours that she held it in). Once I got her comfortable I ran out and parked the car.
I finished up a little design work and cooked dinner and got her to bed early. I’ve been working on a new song so that distracted me enough until I went to bed. For the second day in a row, though, I forgot to take my own meds so I need to put sticky notes up to remind me.