At a time in my life when I’d rather learn about cruise ship vacations or how to knit, I’m getting a forced education on the ins and outs of assisted living homes, the Aide and Assistance to Veterans program and something called an 1823 form. Such is the life of a caregiver.
The joke that every day is a new day to an Alzheimer patient is so true. If I show my mom a nice facility for my parents to move to, the following day she doesn’t remember a thing about the place and I have to start all over again. Some days she is okay with the idea of being waited on hand and foot at a facility, with her every wish taken care of by a staff of caring people. Other days she wants to remain in what she thinks is her winter vacation home in Florida. Or she’d rather return to New England to her real home and be with her work friends, not realizing that house was sold over forty years ago and the business where she briefly worked, Fernandez Supermarket headquarters, is no longer in existence. Or some days she gets ready to go to work, thinking she is already “home”. She said the little yellow bus stops in front of her house and picks her up for work every day, when actually it is the school bus for the neighbor’s kid that stops in front of our house every morning at seven a.m.
On days when the clouds cover the Florida sun or an occasional downpour darkens the sky, I have to deal with mom’s dark depression and disorientation. An emergency room doctor told me about Sundowner’s Disease; at dusk seniors become very agitated and aggressive and they stream into emergency rooms. Mom has a full-blown case every evening, some days worse than others. But I can count on the weather to turn her personality from pleasant to agitated. She frequently will then ask about the whereabouts of her mother, father or cousin. Did her mom leave for work already? Or my mother will get dressed up to attend a friend’s funeral or wedding. Why won’t I take her? There is no reasoning with her. My logical responses to her requests aren’t even registering. Her mom died over twenty-five years ago. “But I just talked to her. You are wrong!” Her black pupils stare at me. She doesn’t blink. Or mom will get dressed to attend church no matter what day it is or become upset that she has to fix a huge meal for the church crowd, taking all the dishes out of the cupboard, opening cans and upsetting herself over the myriad details in her head. “I’ll never do this again. What was I thinking? Where is everyone?” I tell her no one is coming but my words fall on deaf ears. Or if she finally understands no one is coming that flash of relief is only momentary. Her memory fades and is replaced with anger that she is expected to cook for an ungrateful crowd. How could “they” stick her with such a huge task?
Each day her mind plays an endless tape telling her the beloved cats are missing. The tape rewinds several times a day, forcing dad and I to assure her our only cat is fine. “See? This is Essie. “ I bring the cat to her. But in her mind there are three cats, never two, never four cats, always three. She just saw the black one this morning. Or maybe the color of the missing cat will change. Essie comes sauntering into the kitchen wondering why mom is yelling, “Kitty, kitty”, over and over. “Is it time to eat”? Essie seems to ask expectantly. Mom comes into my room and yells at me for killing her cats. How could I? Again, my attempt to reason with her does not reach her brain. Her anger escalates, sometimes ending in tears, or she walks outside in the cold looking for the ghost cats, then returning to scream at me. How could I? How dare I take away the only thing she loves? She slams my bedroom door after screaming in my face. The frustration raises my blood pressure.
There is humor in Alzheimer’s disease. I came home one day to find mom had made cat food sandwiches for her and dad. Dad got wise to that when he saw the empty cat food container on the table. He called it mystery meat. But rather than feel saddened by mom’s mental decline he saw it as just another stupid task mom did wrong. It was times like this that mom went on for hours about how she wanted to commit suicide, how worthless her parents had always made her feel. She cries that one of these days she is going to end it all and we’ll all be happy. Soon. She’ll do the deed soon. Perhaps today will be her last day on earth.
Friends have suggested sneaking medication into her food. That assumes she eats a regular meal. She doesn’t. Mom picks at her food, sometimes finishing it, sometimes wrapping up the leftovers. In her mind she is back in America’s depression years where one never throws out even a tiny bit of food. The refrigerator is filled with small tin foil, wax paper or Saran wrapped squares holding her meals. The packages are soon forgotten and I remove them when I clean the refrigerator.
Her once immaculate bedroom has become something from one of the hoarder television shows. Dirty and clean clothes are thrown all over. Magazines, newspapers, mail and garbage are strewn in the closet, on the bed or on the chairs. I gave up on my attempts to keep the area clean, at one time filling three-quarters of a recycle garbage can with newspapers. But she fought me, not wanting her possessions to be touched by anyone. In amongst the piles are the contents of the kitchen: pans, Corning Ware, groceries. We are down to only a few eating utensils. The rest are hidden amongst clothes in the closet, in her bureau, or, I discovered, wrapped in her underwear and put in her purse.
I am becoming more and more despondent every day. Dad refuses to spend the money for them to enter the assisted living home I’ve chosen for them. Their doctor says to let nature take its course and the decision will be made for them. Their friends have suggested other, more drastic measures, which I am pursuing. Those measures mean putting me in a position of being the bad person. On the other hand doing nothing means I’m being neglectful. Again. The frustration raises my blood pressure. Dog training, beading and writing gives me some comfort. I refuse to medicate myself to be less depressed. I need to be in control of myself, able to make quick decisions if necessary.
There remains the worst aspect of this journey I am on and that is dealing with my father, an autocratic, miserly man, diagnosed with Dementia, who also has anger management and control issues.