CAREGIVING: The following few weeks in June had their ups and downs but at least it wasn’t the roller coaster that it was when Kathy was in the hospital. There is a routine that we got into and although there are always changes and tweaks, a schedule helps a Huntington’s Disease patient. It is one less thing to get anxious about, I guess. And schedules are a godsend for the caregiver, too. Google Calendar is my friend.
These are some photos from the last half of June. My sister Barbara was here for a week and helped with Kathy by keeping her company while I ran errands and did some of my client design work. It was good to have someone to bounce ideas off of like when Kathy’s sisters, Trisha and Mary were here. We had a few fun moments too. Kathy’s aide, Pat used us to show the basics of using the Hoyer lift. All photos of that event have been destroyed under orders of the participants. 
The Saturday before Barb left, Pat and I helped Kathy sit up on the edge of the bed for the first time. I just remember it exhausted her. 
Around that time I managed to get some sort of chest cold. It started as a sore throat and went right to my chest. I was terrified about getting Kathy sick again and sending her to the hospital with pneumonia again. But I tried to be religious about wearing a mask and washing my hands constantly and wearing gloves. I was also noticing my shoes seemed tight, almost unbearable. Hope saw me without socks on and said “Your ankles are really swollen aren’t they?” I’ve been so focused I had never really noticed my own feet. By then I was coughing so hard I thought I would bust in half. I called my doctor and left a message about my coughing and mentioned the swollen ankles. I made an appointment with Hassen, the nurse practitioner (NP) for the afternoon when Dilcia would be here. It is the first time I’ve been seen by my doc’s NP. He prescribed a water pill to help with the swelling (edema) and had me get a chest X-ray and a blood test while I was there. Both turned out normal. I found out later the blood test was to check for the heart failure enzyme. Here I thought they were checking me for my coughing. When I got back home Dilcia told me that the next Thursday would be her last time with us. She might do fill-in work with O’Connell’s but won’t be a regular aide anymore. I knew that day was coming. Oh well.
My coughing got worse before it then got better. My stomach was aching from it. Then when I was getting dressed one morning I noticed bruising. I said to myself, “Crap! Just what I need.” But I googled it and apparently it is fairly common – at least I didn’t crack my ribs. My coughing got better although the bruising stayed on into July. They also ordered another test, an echocardiogram. That was to see if the swelling was due to heart trouble. They managed to line up an appointment for the morning when Hope comes to stay with Kathy. I got to the cardiologist office and because it was a new doctor for me I had to fill out all the usual papers and forms. Who my health proxy was. Who to share information with. Insurance etc. So I was using my phone to get some phone numbers for when they need to notify next of kin etc. I managed to put the phone in my pocket when they called me in but it was open to the address book. I butt-dialed Kathy’s sister, Mary. Fortunately it dialed her home number and she was at work. The test ended up being negative. So even though I was sick, I wasn’t really sick.
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Kathy was doing pretty well. She puts up with my learning and well-meaning mistakes. But since she can no longer really speak maybe it would be different. I’ll do a separate post about how the feeding tube works and another about suctioning. Suctioning Kathy’s saliva and phlegm is as much craft as science. Since she has lost the ability that you and I have – to swallow or cough it up consistently– it needs to be removed somehow. The machine is pretty similar to the gizmo used at a dentist’s office. It was during these first weeks that I would sometimes get a little too carried away with it. One night after I had given her a bunch of water and her medicine through her tube, she sounded congested. I fired up the suction machine and when I stuck the wand in her mouth I managed to induce her to regurgitate all of it all over the place. Fortunately none of it got forced into her lungs. Note to self: “use caution when suctioning on a full stomach.” We were up until 1 am getting her squared away again. Another scary morning came when Kathy woke up at 5:30, regurgitating tan stuff. I had no idea what it was. It didn’t seem like puke. It seemed like the liquid food she gets only a little darker. Again, it didn’t go down her windpipe. So we dodged a bullet.