CAREGIVING: The first few days home were generally pretty good. I guess anything was better than pneumonia in the hospital. But this is still Huntington’s and we are biding time. The first morning was my first poop clean up since the feeding tube started. Took some getting used to but it wasn’t bad. Some of the neighbors called to lend their support. Pat came in the morning and gave Kathy a good sponge bath. The nurse came back to check on her and to change the dressing on her feeding tube. On Sunday the 8th, Kathy was a little stronger and more alert. My sister Barbara was coming to visit from Reno, so I put an air conditioner in the room where she would be staying. I pulled out some other fans, got caught up with laundry and did some office work. Later, I tried giving Kathy some mango nectar and water by dipping a toothbrush in it. It didn’t work though, and it started going down the wrong way. It gave me some unwanted practice with the new suction machine.
Monday (June 9) included a bunch of phone calls and lots of laundry. There were some medical appointments I decided to cancel or at least postpone. The doctors at the hospital set up a follow-up appointments with her primary care doctor and with the feeding tube doctor. It probably seemed like a good idea at the time. But any appointment involves an ambulance to take her there and bring her back. So, I checked and they were not necessary. Susanne, the visiting nurse, came and was much happier with the way Kathy looked than when she called for the ambulance. Tuesday morning (JUNE 10) Whitney, our newest aide came to give her a bed bath and get her ready. She wasn’t familiar with the feeding tube, so I disconnected it for while she got Kathy ready. When she was all finished though she picked up the white end of my laptop charging cord and asked me if I wanted to plug Kathy back in? I could see how they looked the same.
Tuesday afternoon my sister Barbara came to help out. We haven’t seen each other in a few years although we keep in touch a lot. My cousin Joanne and her partner Gustavo picked her up at Bradley airport and brought her to Hampden. Once again the chair lift came in handy for transporting luggage up the stairs. It was great having Barb visiting and helping out although it took a while for me to let go and let her watch Kathy while I got other stuff done. Eventually I was more relaxed about it. The first days of having Kathy home from the hospital were a big learning curve. I was afraid she would break. Thursday, Joanne came back and brought my aunt Josephine up to visit us. Josie was my mom’s youngest sibling and the only one still with us. She’s 93, walked up the stairs without a cane and hardly takes any prescription meds if any. I’m not sure how aware Kathy was of all the visitors in her room, but she probably enjoyed the laughing and chatter.
Meanwhile, Dilcia came that day to clean and help with Kathy. She was looking at the new arrangement and I showed her the bedroom. I mentioned that eventually “I need to move the bed over to that window; and Marty’s love-seat over to that wall.” That will make more room for the other equipment.
She said “Let’s do it now.”
I said you aren’t supposed to move furniture.
“Yah, but if you tries to move it you self, you gonna bust your back and make more work for me!”
So, while they were chatting away we rearranged the house.
Later that day I tried to make some other appointments. I tried to rearrange a yearly visit to my Urologist, but ended up having to cancel it for now. I had received a recall notice for my Toyota and thought I could run down and take care of that before my wheels fall off. No such luck. The parts are on order and the next batch should come in July. So, they took my name and number.
Friday (June 13) I let Barb stay with Kathy and ran a bunch of errands. I got a PSA blood test done for my eventual urologist appointment. Went to CVS to pick up some supplies like incontinence pads and miscellaneous stuff. Then I went to Stop & Shop for some groceries and prescriptions. Then as a surprise for Barbara I stopped at Wilbraham Seafoods and picked up two fried clam plates for or lunch. She is always talking about wanting to get fried clams when she comes to Massachusetts. Short of going to the Cape it was the best I could do. It tasted good to me, anyway.
But by the end of the day everyone was exhausted. When Pat arrived to get Kathy ready for bed, we were all asleep: Marty, Kathy, Barbara and I.