CAREGIVING: Whattaday. Wednesday is usually the day that Hope comes in the morning and stays for over four hours. This gives her more time to give Kathy a shower and then gives me time to get away. I was hoping to go shopping at Aldi’s to stock up on stuff. Things got off to a rocky start. But they ended well. Hope was going to switch times with her other client in town because Kathy is usually still sleepy and weak when she gets here. Our original goal was to get someone to give Kathy a shower in the morning just like she had done for herself. Now, as the Huntington’s Disease progresses, it seems like Kathy is sleeping 12 or 13 hours (not counting long naps during the day). So the early start time matters less and less. I tried to get Kathy up as gently as I could but she kept on falling asleep. I finally did get her from the bed into her chair. But when I tried to transfer her to the toilet she crumpled while I was trying to get her depends off. It was as if when I pulled down on them her body said “OK, I’ll go there instead.” I did get her up, on to the can. I’ve been using one of Marty’s leashes as a safety belt to keep her from slipping off the commode to the floor. I just clip it to her gait belt that has the handles. She can still rock and bend, but it gives me a chance to grab her clothes or supplies. When Hope arrived we realized that it wasn’t safe to give Kathy a shower today, so she gave her a sponge bath again. The social worker from Baystate VNA was coming at about noon to see what she could do to get us more services. I could have delayed it until Thursday but figured I need to keep pushing this along. Then Greg, a nurse from the same VNA called to say that he would like to come see Kathy at noon too. So I wasn’t going anywhere fast. Hope got Kathy cleaned up and I helped get Kathy into her wheelchair. Once she was dressed we transferred her to the futon and I fed her a smoothie made from Ensure, some peanut butter, yogurt and two bananas. I think I threw a hunk of tofu into it for some extra protein. honey and some vanilla too. She seemed to like it a lot and drank most of it. One meal not to worry about. Hope brought her to the toilet but she couldn’t go. Pretty typical occurrence. We got her back on the futon and I gave her her medicine. I had found some photos of Kathy and her family reunions up on her desk, so I showed them to Hope. We got to go to some fun gatherings in Pennsylvania and North Carolina. Kathy slept while Hope vacuumed and made the bed. I worked upstairs on design projects for two of my hospital clients.
Since the nurse and social worker were coming we decided to let Hope leave early. There isn’t enough parking here as it is. As she was leaving, Hope said “I don’t know how you do this by yourself.” I just said ” Very slowly.” Lisa, the social worker, arrived around noon. Marty showed her in. She has a beagle and thought Marty might be some combo because his legs are longer than a typical basset. Kathy never really woke up completely when she was here, but we went over a bunch of stuff. It was: “How can we help?” “What do you need?” “Let me see what I can do.” I had learned from Hope that some of the supplies I have bought on my own are covered by MassHealth or Medi-Care. So Depends, or something like it, are covered. We’ll probably have to switch to the kind with tabs but those might be easier anyway. She’s getting me gloves and more pee pads to put on the chairs and bed. She is going to check on the hospital bed and the Hoyer lift. I also asked about a better commode chair so that I don’t need to wheel Kathy into that narrow bathroom. She might even try to get Ensure covered. That is over ten bucks a pack. (Kathy might not qualify for that unless she starts wasting away.) I told her about the ramp I bought. It is still in its box. I just haven’t had the energy to put it together and try it. And I have been wondering if Kathy should really leave the house. Lisa said we could get an ambulance for doctors appointments, if the doctor orders it. There are little buses that will pick you up at curbside, but the ambulance will put her in a special gurney thing and carry her down the stairs if they need to. Less tiring on her and me. As Lisa left, Greg the nurse from her office showed up. It was good he wasn’t right on time. He came up and we went over some of the same things about the hospital bed and the Hoyer lift. Kathy was starting to wake up. He was asking me why the palliative nurses didn’t think Kathy was a good candidate. I couldn’t remember without reading this blog, to be honest. I mentioned that even though Hope is certified to use a patient lift, she isn’t allowed by her company to do it for some reason. Greg said, in that case, I could be the main one using it. That sounds good unless I want to run an errand. He reminded me they are just for moving a patient to and from her chair. For example I could lift her out of the hospital bed and into her chair but they aren’t for lifting her in the living room and rolling her to the kitchen or all around the house. It creates a funny picture in my mind. Vacuuming underneath her. We also talked about the DNR certificate. It turns out it has to come from her doctor’s office. He said they might be able to send us the form. One we get it we should have a copy on the refrigerator for when an ambulance is ever called. If they can’t find it readily they would have to begin chest compressions and intubate her and all that stressful stuff. While he was checking Kathy’s vitals (which were all excellent) Erica, the speech therapist, called and wanted to stop by around 2pm to check on Kathy. I figured the day can’t get any busier, why not? Another phone call came from her doctor’s office about the Scopolamine patch authorization getting approved. After Greg left I brought her to the bathroom. Of corse she had already gone and couldn’t pee again but I changed her pants etc. Then I brought her to the kitchen for some lunch but she was hopelessly bent over. Her head was almost on her knees. She wasn’t in pain, but she was having to swallow upside down. I was sitting on the floor, feeding her guacamole by spoon and the rest of the smoothy. We decided to try eating on the futon where she could put her legs up; and I could support her back and head more. That made a big difference. She was able to eat a bunch of the guac and drink juice and a smoothy. After she was done eating I was making more of the shake when Erica arrived. Erica has a lot of energy so Kathy would answer her questions pretty well and did a great job of swallowing different stuff like the smoothy. She listened to her lungs and all was clear. I mentioned that Kathy might be getting constipated. But she said part of the problem with Huntington’s is in her vocal chords. I’m over-simplifying but to poop you have to be able to close off your vocal chords to grunt I guess. I was laughing that speech pathologists have to know about both ends of you. For some reason Kathy thought that was pretty funny. And she was smiling. I showed Erica the list of foods and drink I had given Kathy and she was impressed with how well she was eating and drinking. She told Kathy she was doing great and that when she first met her she was really worried about her. The Scopolamine patch and pureeing her foods were helping. After Erica left, I changed her again and made pureed broccoli and potato. And smoothie. And ice cream.