All sorrows can be borne if you put them in a story or tell a story about them.
THE FIRST TIME I acted as a caretaker was when my parents celebrated their wedding anniversary with a party at our house. One of the guests was my Aunt Fanny (not her real name), my mother’s sister. Fanny had had a minor stroke at some point before, but she was functioning quite well. However, when she went to the bathroom, she had a problem, so some of her urine ended up on the bathroom floor. Mom asked me to clean the bathroom. I did, but it wasn’t easy and by the time I finished she was disheveled and sweaty. I can still remember the sickly sweet smell of her urine; I later found out that she had diabetes. I wasn’t happy to do the homework, but it had to be done. When I joined the party, Aunt Fanny called out to me, “You look awful!” Well yeah, I guess I did it because it was a dirty hot job to clean up after her. That was my introduction to the world of caregiving. I was seven years old.
I am neither a doctor nor a nurse, although on several occasions when talking to doctors I was mistaken for a health professional. My journey in caregiving led me to learn a lot about many illnesses, medications, and dementia. We were lucky to have a family doctor who made me his partner in the care of my parents. I am a lawyer. My approach to the law is also as a kind of caretaker. I specifically went to law school to help my extended family. I hated the idea that we could be threatened with lawsuits or embroiled in any legal matter, and have to turn to a stranger for help.
We talked about caring in law school. I had a teacher who took care of his senile father. He said we had a 50-50 chance of having to care for a parent with dementia. Little did I think then that he would be doing it a year from now. Why did I choose to be a caregiver? I don’t think I ever did it consciously. Being a caregiver is often not a role you choose; it is most likely something that happens to you; usually you are drafted and did not enlist. Instead, I was faced with a long series of decisions and “unknowingly” became a caretaker because of those choices.
When I was quite young, one of my cynical friends said that we should get married as soon as possible because any sibling who is not married when the parents need help becomes the caretaker until they die.
I graduated from law school in 1980 and had every intention of working for the federal government, a good fit for female lawyers at the time. However, a government hiring freeze went into effect just as he was ready to enter the workforce, so that was not an option. Job prospects in the private sector were pretty bleak, and they got worse in 1981. Perhaps if I had been given the kind of offer I couldn’t refuse, like a high-paying position in a law firm, my family’s story would have been very different. . As it was, I took care of my mom while she was looking for work from home. Maybe it was learned behavior. As a child, I visited the house where my mother grew up almost daily. Two of my aunts who never married shared this house with her mother, my grandmother,
taking care of her until the end.
Maybe it’s what the family does.
My dad swore that mom would never be placed in a nursing home, and I agreed with him. I personally believe that if a healthy young person were fostered into a home, they were over-medicated and cut off from the outside world, that person would experience mental decline. How much more for the older person! My aunt Min went to a nursing home and had a positive experience. However, she was in a converted house with a very small group of patients. A devoted husband and wife team ran it.
She had two other aunts who needed care towards the end of their lives. Her families also took care of them. She didn’t take care of them, but she visited them from time to time and helped them in any way she could. In addition to my own experience, I have spoken with many people who were or are caregivers of patients with dementia and Alzheimer’s.
My story is a cautionary tale. I’m trying to talk to each of you so you can learn from my mistakes and take heart from our successes. I hope my experiences help you, whether you are a full-time caregiver or someone who occasionally interacts with an elderly loved one.
BECOMING A CAREGIVER
I have nothing to offer but blood, canvas, tears and sweat.
-Sir Winston Churchill
YOU BECOME THE PARENT, and your father becomes the child: that happens when you realize that your father’s mental or physical capacity is weakening to the point where your roles have begun to change. When this role reversal occurs, it’s not the happiest time of your life, but it doesn’t have to be the worst.
The first hurdle is deciding when that day has arrived. It can come on suddenly with obvious signs of mental decline, or it can take a long time to realize something is wrong. Some people rush the day. The first “older moment” or mistake is for some a sign that the older person is incapable of taking care of themselves. Sometimes it is done maliciously; the adult son who wants the father out of her life or to gain control of some asset. Some forgetfulness occurs at any time in life: a child’s lost homework; the lost key of a young adult. Then suddenly the misplaced item is evidence of aging. Not necessarily so, without a pattern of problems.
A personality change—a person who was very bossy becomes meek, or a person who was very sweet and loving becomes belligerent—can also signal the start of serious problems. The other side of this is not recognizing that the day has come. You may deny it because you don’t want it to be true and you don’t want to face the future without a parent to lean on, however subtle or bizarre the inclination. If you don’t see your parents regularly, are you really aware of what’s going on? I knew a very concerned daughter who lived out of state. She talked to her elderly parents often on the phone and she thought they sounded good. She assured him that they were fine. When she finally came to visit them, she was shocked to find her normally ordained parents living in utter misery. She certainly didn’t want to accept that my parents were starting to have health problems. One day, my father announced to my mother and me that he thought her hearing was deteriorating and that he wanted to buy a hearing aid. My mother and I quickly said no, your hearing is fine. It wasn’t right, and he was right about the need for a hearing aid. But I vividly remember denying that I had a problem because, as I now realize, I didn’t want her to have a problem or admit that she was getting old. As I mentioned, I was born when my parents were in their 40s, so these issues came up earlier in my life than they might for others. No matter. When you recognize that your parents are aging, you must deal with the inevitability of being an orphan: the fact that you are 20, 30, 40, 50, 60 or older is completely irrelevant to your emotions. I consoled myself with the thought that I myself could drop dead at any moment and not have to face the orphan. Not a very healthy consolation.
My mother had high blood pressure for many years. She started showing signs of dementia when I was in law school in the late 1970s. Mom became legally blind at some point after she went senile. This meant that she could discern light and dark and some shapes. Dad had hearing loss, prostate cancer for which he had surgery, and heart disease. He had rheumatic fever when he was in his 20s and apparently he was left with an enlarged heart. He had two angioplasties that unblocked the arteries around his heart. Both parents were found to be borderline diabetics. An electrocardiogram found cardiac damage in my mother’s heart and she ultimately died of heart failure. Dad died of leukemia-14 hours, HOURS, after being diagnosed with acute myelogenous leukemia.
My sister, her husband, and their daughter lived just two blocks from my parents’ house. My sister did what she could to help, but her husband was a semi-invalid and took up most of his time. No other family could help.
It takes a long time or is it sudden
Sometimes there is no mental decline as we normally think, but rather lapses in judgment. A friend of my parents was more of a tyrant in his own home. One day he was clearly ill and his wife and adult daughters wanted to ask for help. He ordered them not to call an ambulance; They obey and, to his horror, they see him die on the living room floor.
My father was one of those who did not have mental impairment. However, one night I thought I heard him enter the room. He often slept on the sofa there. He was about to put me back to sleep, but it bothered me that he should be in bed. I went to the living room and found him sitting in a chair with chest pains. I knew that he had a recently diagnosed heart problem and that he was probably having a heart attack. However, he did not want to wake up the family, so he simply sat in a chair in the living room. I put him in the car and in the hospital. He had had a very mild heart attack, caught on time, so the damage to his heart and his health was minimal. I then asked him to clarify his decision. He indicated that he had not wanted to disturb me.
“You didn’t want to wake me up and disturb my night’s sleep?”
“That’s how it is.”
“So you thought you would sit on the chair even though you knew
Could you die there?”
“So I would wake up in the morning and find you dead, and you
Did you think that was the best way to handle it?”
This bit of consideration on my father’s part was, of course, ridiculous. But the effect of it on my life was profound. From that day until my father’s death some 10 years later, I never slept through the night. He slept very little, often only four hours out of 24, and very little, getting me out of bed at any sound. Parents of babies will understand the lack of quality sleep I experienced.
The family had known for several years that something was wrong with Mom, and we put it down to her getting older, even though she was not yet 70 years old. Personally, I consider it to be an early age to experience noticeable mental decline. However, I have read that the first Alzheimer’s patient, a woman treated by Dr. Alois Alzheimer, was 51 when she received the treatment and 56 when she died. Alzheimer’s can affect both middle-aged and older people.
The turning point for my mother came one day when she was making dinner. He made somewhat elaborate dinners and this consisted of a plate of meat, vegetables, mashed potatoes and gravy. They were all cooking at the same time, and she was trying to plan it so that everything would finish at the same time. This can be a bit tricky for anyone. I heard her in the kitchen clearly upset. When I approached her, she said something like, “I can’t, I can’t.”
I calmed her down and led her to the porch. We had a glider that she loved to sit in at night, and I made her sit there. I came back to find that dinner was almost finished. Everything was cooked and ready to be served on plates except for the potatoes, which needed mashing. From that day on, she couldn’t cope with anything complex in the slightest, even though this had been something she did practically every day. She had been a good cook, so I tried to get her to help me with small parts of the cooking task. We often made waffles from scratch, so I had him separate the eggs so I could beat the whites. Parting requires some skill, but it was something she had done effortlessly for many years. This time she only looked at the eggs and couldn’t act. Distressing.