CAREGIVING: The goal with our hospice care is to keep Kathy comfortable. Hospice care (from a health care cost standpoint) is limited to Kathy’s actual “diagnosis” of end stage Huntington’s Disease. When something else pops up (blood pressure, infections etc.) there are “conversations” about what to do next. Or not. They will support whatever decision I make. But I have to make decisions on how far to go with treatment. Or not. (Just so you are not in suspense, this was just a “practice” decision. There was no question from the nurse or me whether to treat. And at the moment Kathy is doing better.)
Friday morning started out with a call that Betsy could not make it. They were sending someone new, but she couldn’t be there until 11:30. I changed Kathy and gave her some of her meds. Since someone was coming to give her a sponge bath I’m not even sure I turned all the lights on. She whispered that she was fine. And she nodded when I asked if she was comfortable. I probably didn’t really examine the side of her face because it was turned toward the wall. Later I went to clean her teeth and do her mouth care….
I realized the right side of her face was really swollen. Her right cheek was huge and very hard.
She was just starting to get over the bloodshot eye on the other side. Now this. Swell. I finished cleaning her teeth and tried to look inside her mouth to see if there was an infection I could see. I was worried. Had I injured her while suctioning her? Or while cleaning her teeth? Or did I injure her rolling her on her side to change her diapers?
Then the phone rang. It was the new aide named Cathy. She was lost. She couldn’t figure out “where in hell Hampden is.” She sounded older. And no, she didn’t use a GPS.
The original plan from the agency was for this Cathy (with a “C”) to be one of Kathy’s regular aides starting on the coming week. That way there would be backups. Friday was an emergency fill-in for Betsy but she seemed ready to go home because she was late. I asked her where she was. She kept repeating the directions they had given her at the office:
“Go down Wilbraham Woad
to Somers Woad and turn left.”
I told her that was correct IF she was in Hampden. She kept repeating the directions and saying, “I been driving back and forth on Wilbraham Woad… but I ain’t seen no Somers Woad.” I asked again if she was in Hampden and she said “I never been to Hampden.” I asked what stores she was near. She “…was near a funeral home” … on Tinkham Road.
She was indeed on one of several “Wilbraham Woads”; but in the wrong town. She was two towns away in Springfield. (Many roads here are named for the town or village they go to. So, Wilbraham Road, Springfield will take you to Wilbraham. But, once you get into Wilbraham the same road becomes Springfield Street because it goes to Springfield.)
The “Wilbraham Woad” she needed was in a different town completely. I gave her new directions which she “wote down and wepeated.”
I left a message with Mercy Hospice to tell them about Kathy’s face. Eventually Cathy, the aide got here. She was grumpy because of the bad directions. She had been sick for days. She didn’t want to work today, but the office told her to come. Kathy was a priority case.
I was distracted by her wig. It was sliding around on her head. I wanted to be ready to catch it if it fell off.
At that point I was still glad to see her. We all have bad days. I was trying to reassure her now that she knew where we were. I led her in and introduced her to Kathy.
I said “She usually gets a sponge bath in the morning.”
“Oh I haven’t done somebody in bed for a long time. Can she get up to go to the batroom? I have a bad back. So, I can’t move her. I don’t want to miss work.”
I could see this wasn’t going anywhere. I let her help me get Kathy dressed. Kathy didn’t get her sponge bath. After she left I called the agency and told them they sent the wrong person. The scheduler “didn’t realize the aide had a bad back.”
Annie from the hospice called back to ask about Kathy’s swelling. My mistake was in telling her that Kathy didn’t seem to be uncomfortable from the swelling. I didn’t describe it very well either. She said to keep an eye on it and if it doesn’t get better someone would come out tomorrow. It was true that it didn’t seem to bother Kathy. But it is rare that she shows any pain at all.
Then I checked her temp and it was elevated 100°f.
Our night-time aide, Pat arrived at 8:30 and was pretty upset. “Something is terribly wrong!’ She had me call the hospice again. Another nurse called up and said there really wasn’t anything they could do tonight. She had me give Kathy a Tylenol suppository to reduce her fever and another nurse would call in the morning.” While Pat took care of Kathy and got her ready for bed I looked on Google for pictures of swelling, spider and ladybug bites and drug interactions. The closest pictures looked like a reaction to steroids but she didn’t take any.
Marsha, the hospice nurse came on Saturday. She had on a huge raccoon coat. I was worried that Marty would get aroused but he was himself.
Marsha got serious when she saw Kathy. She felt the swollen side and how hard it was. She said it was obviously an infection. I asked whether it could have been a bug or spider bite of some kind. She said it wasn’t anything external but it was something on that side. She put in a call to Dr. Jackson, Kathy’s primary care doctor. She was on call, but we had to wait a bit for her to call back. Meanwhile we double checked her temperature (99.3°). We got flashlights and looked around in her mouth for signs of infection or trauma. Marsha used a spoon to hold back her tongue.
When Dr. Jackson called Marsha told her about the swelling and the enlarged face. They talked about antibiotics and asked me if Kathy was allergic to any meds. She would phone it in to Rite Aid Pharmacy because the hospice will not cover it. Dr. Jackson was asking if a doctor or nurse practitioner from the hospice could examine her. Marsha explained that as a hospice they don’t do that and can’t pay for it. Our other insurance, NaviCare would pick it up. Hospice would actually need to discharge Kathy and then re-admit her if she made it back home. Because Dr. Jackson is fairly new to the area (she did her training in South Carolina and Tennessee) she wasn’t familiar with how hospice and palliative services worked in Massachusetts. Marsha put me on the phone with Dr. Jackson.
Dr. Jackson explained again that I will need to decide when “enough is enough.”
Kathy is nearing the end of her life and any type of infection could go right through her. “Maybe not this one. But perhaps the next one. Her system is compromised. We have already treated her for a toe infection and an eye infection.” But it will be my decision. I told her that “I just don’t want her to die of a toothache.” She said hopefully this course of antibiotics will stop this infection. But chances are “it will be an infection or pneumonia that takes her.”
Dr. Jackson and Marsha talked a little more and Marsha told her she and I “would have a conversation.” I remembered my mom was doing pretty well living in her retirement apartment in Boulder. She had a minor fall, and the staff there is obligated to call for an ambulance.” The EMTs took her to the hospital, but they realized she had shingles once they admitted her. By the time they had that under control other infections started and she never got back home. She passed away at the hospital.
Marsha and I agreed I need to do some more soul-searching about what Kathy would want. She used the saying that when god “decides it is your time… it is your time.” I prefer to leave the faith metaphors out. But I agree the body and mind decides when to let go. I will probably talk to Rachael, the hospice chaplain (but wearing her hat as a counselor).
I started to wonder whether switching from hospice to palliative care would give us more options. On Sunday another nurse, (another Cathy), called to see how Kathy was doing. I asked if she was going to come by. She said she would if I thought she should.
I said “I think it would be reassuring. To me, at least.”
She came in the early afternoon. Kathy’s temperature was a little lower. I am starting to put the thermometer under her armpit to get a reading. According to Dr. Google that reading is usually one degree lower than a real oral temperature. Since Kathy can’t keep the thermometer under her tongue it is hard to trust the oral readings.
Her blood pressure was good and the swelling was not painful at least. We looked around some more to see what caused it. But, it is still a mystery. I helped her give Kathy another suppository but this one was for Ducolax. I talked with the nurse about whether I should switch to palliative and she said it is totally up to me. She said they have had cases like this where a family might want to be able to do more treatments or tests. Then they get referred back to hospice a month or two later. I realized that what we are doing is the best we can do for her.
Pat has been an aide for many years. Many of her clients have either been under hospice care or passed away in their homes or senior apartments. She feels Kathy is happy to be where she is, and at home. She gets love and attention when she needs it. She gets to sleep or nap. She has only seen Kathy cry once and it was back in the beginning.
She asked what Kathy would want? I told her that early on Kathy said “I want to live.” Kathy would point out old, somewhat batty characters, that she wanted us to be like. Her mom had passed away when she was 55 and she didn’t want to die young. We didn’t know what she had died of back then.
Kathy’s ideas would shift and evolve.
She seemed upset that my father was in a hospital bed in the family dining room. He had broken his hip. Kathy was starting to have anger and anxiety issues. It was probably related to Huntington’s and we were still in denial about that. She told me having him like that made it hard on the rest of the family. Even my dad’s doctor felt my mom and dad should move into an assisted living place.
Much later, after she was diagnosed with HD we started talking about our living wills. It was there that she first wrote about dying at home “if possible” and not have a lot of life support.
Pat also asked ‘what do you want?”
“Are you worn out? Do you want it to be over?”
I said “No. As long as I can see a little bit of a smile most days and as long as she is comfortable and not suffering, I’m happy (relatively speaking.)”
Update: Today is Tuesday and Kathy is doing much better. The swelling has gone down. The temperature seems normal. I got the snowblower to work. And Kathy had a bowel movement. All is right in the universe.