February 2000

Feb. 9/00
Somehow dad ended up having a swallowing assessment today. A few weeks ago one had been mysteriously ordered. We cancelled it because we really did not think there were any changes to be made in dad's diet. We were right about that. The therapist did make a few other suggestions though. She said we should put the food into the middle/left side of his mouth since his right side has been affected by the strokes. We should also try to get him to tuck in his chin while eating so food goes down easier...something easier said than done. We should also ensure he remains sitting upright for 40 minutes after eating, and finally, clean out the mouth cavity after each meal.

Feb. 11/00
I have been trying to visit dad more often but for shorter time periods. I pop in and out hoping he realizes that I do come to visit him. Last Wednesday was his physician visit day and I wanted to be there. So I arrived about 10:30 AM; dad was sleepy but gradually came to after a while. Someone had told me about a new kind of wheelchair cushion that I thought might suit dad. He still gets red on his buttocks from sitting so much. I spoke with the physiotherapist who showed me the cushion on another resident's wheelchair. it's called a Roho cushion and is made up of individual pockets of air. The cushion is inflated to meet the requirements of the individual and apparentky is excellent for preventing sores. Cathy called the medical supply people right then to order it; I also ordered a better egg crate foam cover for his bed. The one he has now is getting pretty thin.

When the doctor came into dad's room and said hello, he was rewarded with a big smile. I was astonished...I rarely get a smile anymore! His doctor was pleased with dad; today was obviously a good day. Nothing more to do for dad than we are already doing.

I wanted to speak with the doctor because I was particularly worried about dad's ability to express any pain he might be feeling. His physician said that if dad were feeling pain, he would be agitated...rocking back and forth in his wheelchair, striking out. The reason I asked was when I was with dad last Sunday, he was holding his head in a new way and I was concerned that he had a headache or worse yet, was having another small stroke. I also confirmed the directions on dad's chart if something were to happen when I was out of town. So not much more to do in that area.

I have mentioned previously the issue of whether we are going to use a feeding tube or not when dad can no longer remember how to eat. I subscribe to the on-line version of The new England Journal of Medicine and in the January 20 issue under Sounding Board there was an excellent article entitled Rethinking the Role of Tube Feeding in Patients with Advanced Dementia I must admit I have not read it other than a quick scan. I guess I am putting it off. Dad's doctor was interested in receiving the article. I told him it was a way for families to understand all sides of the argument for and against feeding tubes. He certainly agreed.

Feb. 20/00
I have seen dad every few days for an hour here and there. I find more than that very difficult. There has been little change except for days when he does not eat as well. Every time I see him I pray for some look, some acknowledgement that he knows me, that all the years of caring for him still mean something to him. I see nothing. One minute I am grieving because he is so lost to everything; the next minute I am impatient because he grabs me and pulls and sometimes hurts me. When I see him after a few days I feel terrible because I have been away; after an hour with him I ask myself: what's the point? He doesn't know me anyway. Where's the logic?

Feb. 24/00
Occasionally I speak to groups of gerontology students about Caregiver Network and what I do and why I do it. Today I was visited in my apartment by a class of about 15 along with two instructors. It was quite an event! Of course the animals were in heaven; Oreo went from student to student angling for attention and donuts. The cats would stray into the middle of the circle (everyone was on the floor) and generally disrupt everything. Lots of laughter.

It was especially interesting because one student asked me; given what I do and what I have experienced with my father, what steps have I taken towards ensuring my own future care, since I am single with no children? Ooops. What steps have I...or anyone my age...taken? Where will I live? I will probably move near Debbie (next younger sister). Will I live in an apartment with no stairs? Who will be my support? The things I do know are the health care system and what specialist to call if something happens. Beyond these...?

Feb. 27/00
I attended a conference on End of Life (EOL) Care on Friday. It really boiled down to: will a piece of paper...a Power of Attorney or Advanced Directive...adequately convey the wishes of a dying person, when all the complexities and history of that person are sometimes unknown to those who have to interpret the document? The whole day made me think of dad and his wishes. Somehow I have the knowledge that he wanted no heroic measures because I remember our family physician (now living in Calgary) telling me dad had such a document. Well, I have never seen the document and as I get closer to the day when I have to make a decision about life support in some aspect I wish I had the document. I know dad is 91 and he has lived a long time. I know he is very cognitively impaired and there is no hope he will ever improve. For these reasons the decision I make will not be so difficult. Had things been different, however, I would be suffering terribly about what to do. All this to say that we each need to tell someone we trust what we want if something happens and we cannot speak for ourselves.