CAREGIVING: It hasn’t snowed enough to use used but new-to-me snow blower, but we received a very pretty dusting of snow. I bought a dwarf Alberta Spruce at Lowes to use as our Christmas tree. My modest goal is to not kill it. In the back of my head I was thinking that I could plant it near Kathy’s grave. Neither of us is in any rush for that event. And even a dwarf spruce gets bigger. I’ll probably plant it in the yard as a reminder. Hanging decorations on one of these is tricky. I had to use twist ties to keep them from falling off. I decided to use the first box of decorations I was able to get to. I lucked out because it had most of our favorite small ones. I made the star out of a coffee can one year. I bought LED lights because I didn’t want to cook the tree with the ones I had. Time will tell.
Unsurance
Maybe next week it will be different, but Kathy is still not a “citizen” according to the Massachusetts Health Connector. (see a previous post) I can’t get past the same screen to sign up for health insurance. I was dreading the income pages, but I can’t even get there. I’m sure it will be fine. We have until December 23 to sign up and pay for the first month.
The woman on the phone was very apologetic. She said “This is ridiculous! I can see that you have been stuck here since November 30th. You sent in the Social Security Card twice and all kinds of documents. My word!” She tried to get her supervisor to fix it right away. And supposedly within 24 to 48 hours I should be able to log on and continue the process.
But, as of Saturday afternoon it is the same.
Constipation and the Big Toe
I am keeping an eye on Kathy’s big toe at the moment. (Not when I am trying to write.) She had an ugly big toenail. I snagged it taking off her socks and it started to bleed. It was hanging on by a thread and finally came off. Dr. Jackson prescribed an antibiotic called Keflex (Cephalexin) for an infection that was right below the nail. She cautioned that everything has side effects. Antibiotics kill the good bacteria in our bodies and Kathy could probably get diarrhea from it.
The course of antibiotic is almost finished and a) the toe is still pretty red; and b) instead of the runs she is pooping bricks. Constipation can be a serious problem for patients on feeding tubes. As I understand it the food has nowhere to go. That could be why Kathy regurgitates the formula every once in a while. The regurgitation is dangerous. She could aspirate it and get pneumonia. The constipation could be caused by the new medicine for her secretions: Glycopyrrolate. It is one of the side effects listed on the sheet that came with it. I try to give her extra water and started giving her generic Miralax (Polyethylene Glycol). It kicked in this morning (actually it was probably last night).
I keep a chart of things that happen: when she goes, any pain, any sores, when I change her bandages or whether she had a bad night. It helps because it seems like everyone who walks in the door wants to know “When was her last bowel movement?” I’ve always thought I should bring out “TylenolBM™: when it’s a pain in the butt to go.”
Visiting Nurses
The nurses from Mercy Home Care have come two times so far. Maura came on Tuesday and Denise came on Thursday. Denise will be Kathy’s case manager so I had to go through her history again and sign my name on her computer screen. I still haven’t totally figured out how or if this is palliative care or home care. I will try to talk about it on Tuesday when they come back. So far it doesn’t seem any different – probably because Kathy is stable.
The Food Anxiety
One area where I almost messed up was Kathy’s tube feeding supplies from Coram Nutrition. At first, I was getting an automated call reminding me to reorder a week or two ahead of time. At some point they stopped those calls. They told me I need to call when I am down to two weeks of food. Being somewhat mathematically impaired I was just kind of guessing without actually counting. We got down to a day or two of food. It isn’t something you can run down to CVS to get, either. They also supply the syringes to give her meds, the bandaging supplies for the tube site and tape.
Once the whole delivery arrived I counted the number of “cans” (like juice-boxes) of formula and divided by 5.5. Since I give her 5.5 cans of food each day, I figured out we had a 30 day supply and I put an event on my google calendar two weeks ahead of that. More than enough time.
My Doctor: I should be taking lessons from you
On Wednesday morning I went for my own doctors appointment with Dr. Lyons, my doctor. If you remember his group practice went bankrupt a few weeks back. There was a period where his family didn’t have any health insurance. He told everyone in his family not to get in any car wrecks over the weekend. Apparently it is better now that Mercy Hospital took over the practice. He said that gradually any big primary care practices will either go out of business or get absorbed by hospitals. The doctors will continue to lose money but the hospitals make up for it with procedures like MRIs and testing.
The exam went fine. My cholesterol is low; blood pressure was almost too low; blood sugar was okay. My protein was low but it always is. And I am still too short for my weight. I need to exercise. I’ll be back in six months. I was supposed to go to my urologist and to see to a dermatologist. Now that the aide schedule is a little better I will make appointments. He said that considering what I am going through with Kathy, I seem to be managing my stress levels really well. “I should be taking lessons from you.”
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