There are 4 separate pieces that involve a lot of text.
"Feet" I have been the intermediary for my mother for a long time. I interpret the doctors appointments, the insurance policies, I’m the financial planner.
Our facility has a house doctor. You can barely find a doctor willing to make a house call anymore. The only alternative is taking a patient from the facility to see their doctor in their office. This is usually a long wait, as the doctor has his/her mind set on their processes and not how hard it is for their patients to even get there, let alone hold concentration about where they are for over an hour. The house doctor is a good idea. They, however are not bound to contact family members and of course my mother has no recollection of seeing a doctor. This cuts me out of the information loop. My sense of responsibility is severed.
I noticed a swelling and reddening of her ankles. I documented this and sent images to the staff. The skin stretched and bacteria gathers. Edema, Cellulitis. These are the words I look up on the internet.
The common creams suggestions, the blood test all seemed off track to me. She is given extra medications that make me nervous. I can only complain to friends. I document her swollen red tubers. I started applying natural remedies, but I’m not there often enough and herbal products are not embraced in a facility. Covertly, I continue.
After a few months, I got a call from the house doctor (actually a nice man) who said that this edema was totally normal for old people. Heart not pumping so effectively. The patient needs to put their feet up. My mother has always prided herself in physical activity and good health. She cannot remember to put her feet up. Instinctively, she goes for a walk. I can’t seem to shake the guilt of not being there enough.
" George's Bunnies"
People have their own way of dying, even when there are documented stages about the passing process. My father spent a lot of time in the year previous to passing, looking down at the ground. I believe he saw rabbits there. He was so enchanted by the antics of the rabbits that he kept falling out of his wheelchair. This caused blows to the head.
We decide to put him into a Geri chair, sort of a cross between a Lazy boy and an wheelchair. The lifting of his legs prevented him from seeing the ground view and turned his gaze upwards. I believe he then saw airplanes. He was happy to see them all.
I got him this fluorescent green pillow for Christmas. He picked at the long pile. He could see it. It kept him from slipping between the cushions of the chair. I took this photo about two weeks before he died. It made me feel optimistic about where he was going.
While the Geri chair kept him from getting a concussion (a condition that presents a lot like Alzheimer’s), many facilities are prevented by law to use them. This is because of restraint laws that are in effect to protect the patient. One can only think that there must have been abuse to generate such a law.
Relating to someone with Alzheimer’s is like shooting a moving target that is filled with emotion.Keeping peace is more important that stating the truth (than trying to convince someone of the truth). Saying “yes we will be having dinner with your mother” is much more satisfying than explaining that dinner with a long deceased person, who would clearly be over 110 years old is simply not possible. Some regular conversations are also not possible.One needs to have some mutually satisfying connections to stay in the game for the long haul.
Before entry into a facility, the caregiver is the center of all activities like meals, entertainment, bathing and bedtime. Once in, there is a team of people tending. They are interchangeable. There is a group, where before it was personal. Alzheimer’s people get so many cues visually and this group behavior has a surprising benefit. No longer a fuss about ‘time to eat lunch’ when it is clear that everyone else is eating lunch. They typically follow suit. So many details just go away.
One visits their loved one and picks up the slack- things missed by staff. Dental hygiene is often forgone due to patient refusal. Stretching exercises and walking keeps their mobility and is fun. As the disease progresses, there are more limits. My mother is still ambulatory. I witness others and how their families make connections. Food, music, photographs, some glamor, and sports TV for the guys.Movies are often too hard as the story line disappears. I make family albums to review. String beads into bracelets, Greek music for private singing, and the pinnacle of popularity-sweet treats. There can be times of anxiety and I bring my mother to a mirror and say ‘make a face’. Works like a charm to change a mood.
In an Alzheimer’s facility, stylishness is not important. Functional, loose fitting and accessible is the main focus. Even wearing ones’ own clothes is not imperative. Some trade willingly with each other, some unwillingly through laundry sorting errors.
After my father died, the facility gave me a bag of his clothes.
Months later, I felt something in my shoe. A name label. Not my father’s name, but one of his friends, Allen. Allen had died a few weeks before George. I must have gotten some of Allen’s things in George’s bag. How did these oversized socks get on my feet? Sort of like how do germs travel unnoticed and how in this community we are unexpectedly touched by each other in this most incredible time in life.
Allen had the tick of moving his tongue rapidly back and forth horizontally with his lips parted about a half inch. Once you see it, you try it. Everyone does. You could mimic this gesture towards someone in the facility and they would right away san “Allen”. This sticks with people, who often don’t remember much else.
I have since hung Allen’s socks on my bedroom wall, next to the insides of an accordion and a piece of wire that made its own shape by being driven over many times.
In the facility we are exposed to many other families going through similar life and death processes. We become close with them, however we disengage when their loved one passes. Our commonality has ended.
I was not prepared for how many deaths I would become a part of.