Above:Happy Saint Basset’s Day. This is a card I did a year ago that is in our Zazzle store (hint/hint)
CAREGIVING: Tuesday was St. Patrick’s Day. When Betsy was here she dressed Kathy in a green shirt and green nightgown. I’ve had a fair amount of work lately and a long-awaited check finally cleared at the bank. So, I have been busy paying bills and doing work.
Kathy’s sister, Mary called from Fort Myers, FL on Sunday. I put her on a speakerphone so Kathy could hear us talking. She was smiling and attempted to speak a few times. I think. When I had to let Marty out; and then back in again. (Dogs are like that.) I let Mary entertain Kathy for a few minutes. Early in the day my brother John was on KGNU-fm in Boulder, fundraising for the station. We listened on the internet. He usually does his Radio Nibbles Show talking about dining and food. This was a show with food songs. He mentioned Kathy and I on the air and Kathy seemed to like it.
My standard disclaimer: I’m not a doctor or a nurse. Some of the things that work for Kathy and I might not work for you and the people you might be caring for. Might even make it worse. So…
Later on I gave Kathy some wine and decided to try yogurt. Those of you that have followed this blog or are friends on Facebook may remember that Kathy was hospitalized about a year ago. She developed a pneumonia and was at Baystate for over a week. It was touch and go. Huntington’s Disease affects control over all of her muscles including swallowing and speaking. Since she came home and had the feeding tube put in she really was not supposed to have anything by mouth. There is a high risk of liquid or food particles going down the wrong way and into her lungs. As it is, having a feeding tube doesn’t prevent pneumonia. Kathy can still produce saliva or mucus; or can regurgitate her formula.
I believe Kathy actually enjoys it when I am suctioning her mouth and throat. She seems to smile. Go figure. On a number of hospice and palliative care websites, I have read that suction is traumatic for most patients. They are probably referring to deep catheter suction. That is when a narrow length of plastic tubing is fed down into the chest to suck out water and mucus. As far as I know home care is usually limited to mouth suction with a mouthpiece called a yankauer. It is similar to the suction gizmo that dentists use to suck your spit.
I created/hacked a hybrid suction method by heat bending a yankauer so that I can wiggle it a little further down Kathy’s throat. That is where a lot of the junk seems to gather. I feel that suction is one of the things that has kept Kathy comfortable this long and I am really the only one who can suction. The aides are not permitted to suction. Heck, they aren’t allowed to cut fingernails.
I am using small amounts of water and mouthwash to clean Kathy’s mouth everyday. I figured I would try a few other things that would at least give her a taste of something. I have tried different drinks on various types of swabs. Wine works really well. Kathy always loved Chardonnay when we would go out to eat. The swab just wets her tongue and then most of it gets sucked back. She actually swallows very little, if any. I have tried some other juices. V8 Fusion fruit juice seems to work okay. But orange juice doesn’t. Even the no-pulp juice seems to create mucus that I have to suction out with the yankauer.
Vanilla yogurt and strawberry Kefir work well too. It really needs to be something thoroughly mixed without bits of fruit. Vanilla is great. Peach is not. There is a risk that Kathy will aspirate on the fruit. I have to really concentrate on what I am doing and be ready to use the yankauer to go fishing for stuff. I have also learned to stop after a while and suction anyway. She is enjoying the taste so much that she might not stop to breathe, or to cough. Kathy closes her eyes and gives a big smile while she has her treat. I may try some ice cream or apple sauce next. And baby pudding is always a possibility.