Dad’s Last Years
Twenty-six years ago, immediately following the shiva for my mother, I became the primary caregiver for my father. Six months prior, testing at Johns Hopkins Hospital confirmed his diagnosis of dementia. His “forgetfulness” and other dementia-related signs were evident for several years prior. Mom was protective of him and maybe in denial—to a point. She knew Dad couldn’t drive without a “navigator” or he would get lost, and he was no longer able to competently handle their finances. Finally, at my urging she agreed to the testing.
Dad refused to accept the diagnosis. He absolutely believed nothing was wrong with his memory or judgment. This weighed on my mother. He was her primary concern during the last months of her life. “Who will take care of my family?” she asked two days before she died. “My family” was a euphemism for Dad.
Thus, I became Dad’s main caregiver for 11 years. My oldest sibling, though living four blocks away, struggled with multiple sclerosis. Complications from MS took her life four years after Mom. My other sister lived 200 miles away. She came to help when she could.
My sisters and I now faced four main obstacles:
- Dad refusing to accept and/or believe his diagnosis;
- Dad refusing outside help in the house to properly clean, cook, shop, etc.;
- Dad refusing to move from his house; and
- Dad refusing to stop driving.
Regarding issue #4, we were somewhat fortunate, however. In my heart I know that a malach (angel), i.e., my mother, “intervened” regarding driving. Two weeks after shiva, Dad totaled the car, sustaining no significant injuries. Being a crafty fellow, however, he did everything he could to buy a new one. Who was behind the scenes preventing this from happening? Me.
What to do about and for Dad was on my mind all day, every day. I consulted a social worker at Jewish Community Services (she eventually gave up; he was that difficult a case!). Kibud av v’aim (honoring one’s father and mother) was a priority, and I consulted local rabbis, including Rabbi Dr. Tsvi Hersh Weinreb, Rabbi Erwin Preis, z”l, Rabbi Mendel Feldman, z”l, Rabbi Dovid Gottleib and the Rosh Yeshiva at Ner Israel for guidance. There wasn’t much they could do other than sympathize.
Some in the community stepped up. For example, Dad’s Daf Yomi chevrah (daily Talmud class friends) at Shomrei Emunah Congregation of Baltimore drove him to and from the class, for which I am extremely grateful. Once a month, until her death, a long-time friend of my parents took him to lunch. The monthly Alzheimer’s support group was helpful in offering me a space to vent, but there was little the group could do to help with my day-to-day challenges.
What to do with Dad during the week when my husband and I were at work became a huge problem. We tried many things, such as the local senior center. He didn’t want to be with “old people” and refused to go. He and my mother used to volunteer at a food pantry, but now, he was unable to complete the tasks without her guidance. I signed him up to be a kosher Meals on Wheels volunteer, packing lunches and dinners, but he was “fired” for starting a fight with a long-time volunteer. During the day he’d wander through the neighborhood. It was a nes (miracle) that he made it home unscathed! Again, his malach (angel) watched over him!
Dad also spent time at the strip shopping center two blocks away. There, he’d nudge the tellers at his bank (always ordering blank checks—I found stacks of them in his desk). He also bought over-the-counter medicines at Rite-Aid contraindicated and picking up nosh at the grocery store. He spent hours reviewing his mail but was unable to distinguish the important mail from the junk mail. And chas v’shalom (G-d forbid) he should throw any of it away!
With a few exceptions, Dad spent every Sabbath, Jewish yom tov (holiday) and weekday dinners with my family, particularly after my sister died. We were fortunate to have friends who understood the situation and graciously opened their homes to him when they invited us to their homes. I’d be dishonest if I didn’t admit that having him over almost every night was stressful. I cannot thank my husband enough for his support.
I knew Dad needed to be in an assisted living facility but didn’t know how to make the move happen without a fight. Eventually, I had no choice. One day, Dad wandered into a dangerous area. That was the last straw. My sister, who lived in Long Island, agreed to take him for a long weekend, allowing me to move Dad’s essential belongings to a kosher facility. When he returned to Baltimore, I did not return him to the house. Of course, the transition wasn’t easy, and he never accepted his new living situation. He even made it back to the house multiple times, including after it was sold!
Making matters worse, at times he was belligerent to the staff and other residents at the facility. As a result, he was put on an anti-psychotic medication to calm him down.
A couple of years later, Dad had, what I believe to be, a bad reaction to his anti-psychotic medication. (Let me state that this was never proven but is my gut feeling.) He ended up in the hospital, never again speaking, walking or eating on his own. Subsequently, he needed a feeding tube and was dependent on a wheelchair for mobility.
Though he returned to the assisted living facility after the hospitalization (where he was detoxed from all the meds), it became evident he needed more care. I knew it was against his wishes, but I had no choice but to transfer him to a nursing home. My husband and I discussed bringing him to our house with 24-hour care, but this wasn’t going to work for us. Fortunately, Dad’s savings allowed me to hire a private caregiver for eight hours a day, every day in the nursing home.
This was his life for about two years. Then one day, during my visit, he did something he hadn’t done in years. He picked up my hand and smiled at me. This was the first time he acknowledged me in the past two years. The next day, the head nurse called and said they were recommending him for hospice. Dad lived for two more weeks.
Perhaps I’m too hard on myself. I still carry the guilt that I never did enough for Dad:
- I could have done more
- I should have been more patient
- I could have been a better daughter.
This journey was mostly taken alone.
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Read more by Eileen Creeger.