My days with Harriett are etched with routine. It's a very simple, uncomplicated routine, but it rarely changes. And the changes that affect the daily routine, are routines in and of themselves. A doctor's appointment every other Thursday, at which I could probably write verbatim the dialog that will ensue at each one, ending with the flushing of her port and a "Pro Time" or "INV" test to be sure she's on the correct dose of blood thinner. The other routine interruptions of our routine are the visits from the Hospice team. Twice a week a nurse and an aide to attend to her health and personal hygiene. And less often the social worker and a chaplin. Through that team and our family, all her needs should be covered.
I am a night owl so our day starts later than most peoples. Since it is late I usually throw on some clothes and head right down stairs to help Harriett begin her day. Unfortunately, this means I shower less often than I used to. Too much information? It's just one of the facts of my life, now. But don't worry, if I am going out or expecting you over, I will be showered, polished & shined!
Harriett is very thin and lacks the strength that she used to have. I throw back her covers and offer a hand so she can pull herself to a sitting position and move her feet to the floor. I dress her starting wtih a fresh Depends, very warm socks with dotted rubber soles and a velor gym suit for it's warmth. After getting all the clothes pulled onto the lower half of her body she stands with the help of a walker and we finish pulling everything into place. Then it's off to the living room.
In the living room she sits in a motorized recliner. It's outfitted with a foam pad provided by Hospice to keep her butt comfy.. there is no fat in her butt cheeks, a thick fleece blanky that we pull around her neck & shoulders, a heavy cotton lap blanket folded in two goes over her legs and feet, and another thin fleece blanket covers the upper body. We've raised the foot of the recliner and she is set to spend the rest of the day in the living room. We keep the house very warm but I often turn the fireplace on for additional heat for her.
I have usually turned the burner on under the tea kettle before I go to her room so now things are ready to begin fixing her breakfast. First I take a fresh glass of water and her pills to her. I keep her pills organized by the week so all I have to do is dump out this morning's pills into her pill dish and we're good to go. The water is usally hot by now and I fix her coffee. It's a spoon of instant, three spoons of creamer and one spoon of sugar. When Mark's home she gets brewed coffee. I have an iced latte every morning so I don't brew a pot like he does. Next is a small bowl of malto meal, with one spoon of sugar and a splash of milk... oh YUM! Right?
Harriett dozes much of the day or rests with her eyes closed. She was an avid reader in the past and she does try to read, but she's been on the same book for weeks now. I think that is very frustrating to her. On occasion she will work on her scrapbook, cutting paper and adding a few photos. She really enjoys sharing these with guests and the Hospice people. She's not into day time TV and not very interested in music anymore so the house remains quiet for the most part. I suppose she does hear me tapping away on the computer, or less often, vacuuming or cleaning. I ask her throughout the day if she needs anything, or if there is anything I can do for her. The answer is no 99% of the time. If she eats anything at all during the day, it's a Boost energy drink. Sometimes she'll have a cup of tea.
For dinner she's been having another bowl of malto meal. This is a half cup serving we are talking about. Last night she changed this routine and had ice cream. Can I tell you how happy that made me? It's an indication that her appetite may be returning in some little way. YaY!
It's off to bed anytime between 8pm and 11pm, usually closer to 8:00. She uses the walker for balance as she lowers her pants. We change Depends if she needs to. She sits on a blue bed pad and we removed the gym jacket and her top, her pants and socks. She has her second little dish of pills and then I lift her legs up onto the bed and cover her up, tuck her in. We say "good night" and on occasion "I love you." I turn out the light and leave the door ajar just in case she needs me I will be able to hear her.
Every day I wonder what this existence is like from her perspective. I imagine (sarcastically) her inner voice: "Yippee!! I get to sit in this chair all day. And if I'm good, I'll get to go back to bed!!"
I am so thankful for the people who affect this routine. I am not good at chit-chat and she gets so much more animated when they are here. I try to give them space so she is the center of their attention and can totally soak it up. But I listen from another room and thank God over and over again that we have this help, for more reasons than just their medical expertise.
So this is the bare bones in the day of the life of Harriett. There are of course, variances. Some days involve throwing up. Some days involve extreme diarrhea. And there have been days we've found her on the floor because she tried to walk on her own. Hopefully, those are behind us.