Dodging a bullet

Kathy and I last week (6/9) and yes I have a new hair cut.
Kathy and I last week (6/9) and yes I have a new hair cut.

CAREGIVING: Sometimes it is hard to tell how things are going. I tend to write when things have levelled off rather than when there is a crisis. Things that would be a problem for someone else are things that I am used to in the ebb and flow of caregiving.

The last few nights I was able to sleep in my bed pretty much all night. I’ve been on the couch next to Kathy’s bed, most recent nights. When Kathy starts coughing or choking, it is easier to just sit up and suction her. If I try to run from the other room the secretions, phlegm, or whatever, has already begun the trip back down. I keep everything right there anyway.

The present layout of Kathy's room. Her hospital bed used to be on the opposite wall.  The suction set-up I made is on the stool and I sleep some nights on the futon/couch.
The present layout of Kathy’s room. Her hospital bed used to be on the opposite wall. The suction set-up I made is on the stool and I sleep some nights on the futon/couch.
View from the other direction. Marty is on the floor between us. You can see the suction wand and a long extension on her blanket.

Pneumonia is one of the most common final causes of death in Huntington’s Disease patients. (Actually suicide may be the biggest cause, I forget at the moment.) The hospice nurse would ask me at some visits “How many times a day do you suction her?” And I was saying “Four or five times, I guess.”  Really, suctioning is one of those second nature things I do like you would do with a child or a baby. I wasn’t really keeping track. I decided to keep a list for a day or two and it was more like 14 to 16 times a day. Math has never been my strength.

Swelling on Kathys left side reappeared.
Swelling on Kathy’s left side reappeared.

The week or two before Memorial Day Kathy had another bout of facial swelling. Again, it was a case where I didn’t notice it. Peg, our night-time aide noticed it. She wanted me to call an ambulance. Once again I felt like I was battling her. I thought since she was under hospice she couldn’t go to the hospital. I was totally confused about it. I had a nurse come out the next morning and she was trying to figure out what it was: an injury to her throat; an infection. My theory was that suctioning just naturally can injure the soft tissue in the throat and mouth area and there are so many varieties of bacteria in there that it was inevitable. You could probably think of the suction wand I use as a hickie-machine. Or maybe you shouldn’t.

In addition to Peg’s frantic recommendation to take her to the hospital, both the nurse and I were a little intimidated to call the doctor. Dr. Jackson had given the nurse the impression that she wasn’t going to keep prescribing antibiotics. She had said that “At some point it will be an infection that takes her.” And that I needed to start preparing for that. It turned out we were worked up about being worked up. Since it was the weekend, Dr. Jackson was off and the on-call doctor prescribed an antibiotic. It turned out I had a whole ‘course’ of it on hand. I started reading about swollen glands online. From what I read, many cases go down by themselves or with the help of a little Tylenol. Since she always runs a slight fever I decided to try that first for a day or two and talk to her doc on Monday.

The nurse cleared up the hospice vs. hospital confusion. Kathy’s hospice diagnosis is “Huntington’s Disease.” So, she can go to the hospital or to any doctor or dentist we want for her eyes, the swelling or her feeding tube etc. But not for Huntington’s Disease; or anything considered a ‘cure’. The hospice won’t pay for it, but Kathy’s Navicare insurance would.

Late Monday afternoon, Dr. Jackson called me and all my fears were ill-founded. She felt I was doing a great job and thought I could go ahead and give Kathy the antibiotic. By then I noticed that the swelling was the same or maybe even less. I told her I would just as soon try to hold off on the antibiotics. She has had a few courses of it over the last few months. After a while they just stop working.  A few days later I was reading online that the swelling could be a side effect of one of her psychiatric meds or the muscle relaxant.

At any rate, we felt that we dodged a bullet.