The things my father says truly embarrass me. I know that his inhibitions have been ravaged by the disease and the indignities he has suffered. There are strangers wandering in and out of his room, wiping his mess from either end, changing his clothes, taking him down to meals he would rather refuse. Other residents wander in, too, lost and alone. Their dementia is an unseen issue in their daily lives. Dad speaks in full sentences to Brian, refusing toast and waffles. He speaks of care staff with the cheekiness that only the aged can display. “Here comes the fat one.” Or "Here comes the old one.” He eats his eggs, though.
The physiotherapist has a conversation with Brian, who has taken much of the advocacy burden from me. Brian looks more like Dad than I do (I am adopted!), with beard and baldhead. Katherine wants to give Dad some physiotherapy to help him to more easily transfer from the wheelchair to the bed. Brian says that we need to refuse this help, since making Dad stronger in this activity will only jeopardize his safety. Dad is in palliative care, we have to reassure them, and this is a different situation than most of the other residents. Dad will not get stronger. He will get weaker and requires two people to lift him now. There is no sense in helping keep up his strength to defy the care staff.
Brian has a conversation with the dietician. She has found that Dad seems to like to have an egg a day. Brian feeds him breakfast on a daily basis, and this is what he wants. The dietician is concerned with his cholesterol. Again, we explain that he has been given a final prognosis, the brain tumour is inoperable and untreatable, and we want him to be happy eating whatever he wants to eat. Like a teenager with anorexia he has been asserting his will around the issue of food. It is the last stand for dad. This reminds Brian of his stepfather, who was in a nursing home with Alzheimer’s Syndrome many years ago. They wanted to put him on a diet, as they are worried about his food intake. Again, let us just keep him happy.
At home, alone in the solitude, I began the day by wrestling with Bell telephone. Dad’s phone has been disconnected, he cannot use it properly anymore, and yet he is still getting bills. Dealing with Bell has been incredibly frustrating. The company is too big and no one seems to know what is really going on. The same is true for mail. We get a continual assault of mail directed to Mr. or Mrs. Jilks. It has been my job to weed out the junk mail and the solicitations from the various charities with whom Mom and Dad communicated. “Admail” cannot be returned. These are the bulk mailings that companies send to us all. They are unreturnable, due to the cheap rates for this type of mail. Opening the mail I scrawl, “deceased” on the form begging for donations, and return it to the charity. It is difficult to do on some days.