Alzheimer’s Gave Me a Gift I Didn’t Want: A Male Caregiver's Story

I never wanted to be a caregiver - I don’t know that anyone does - but I accepted this new role and what it meant for my relationship with my mother and struggled from the very start. I had to learn how to continue being me while taking care of someone who was no longer herself – someone who, through the years, would become a stranger to me as I wrestled with what it meant to be a caregiver.

Had I known how unprepared I was to enter the caregiving arena, I would have paid money to learn some of even the most basic rules such as taking time to care for yourself as well your charge. I had no clue as to what I was in for but, through trial, and often error, I had to figure out how to take care of my mother’s emotional and physical needs.

We knew nothing of administering medication, how to lift an elderly person, how to recognize the signs of distress, how to deal with disorientation and the emotional upheavals – both hers and mine. No school. No classes. No training.

In fact, I only recently learned of the CARE Act that could help provide basic skills training for caregivers when their loved ones transition home from the hospital, like how to administer medication and other duties that would fall to caregivers. At a time when caregivers are overwhelmed with emotion and anxiety, these basic skills training could be an immense help. I only wish I had this training when I was caring for my mother - I may have been better able to care for her at home. We had tried home care aides, but quickly discovered most were not properly trained and the hit-and-miss of having different people in mom’s home simply added to her level of stress. So her children rallied around her and we did the best we could.

You see, my mother was a fiercely independent, pull-up-by-your-boot-straps kind of woman.

Arriving in Philadelphia in the 1940’s fresh off a sharecropping farm in Kingstree, South Carolina, she got her first gig by standing impeccably dressed beneath the Ninth Street Bridge doing car-side interviews with white people looking for a “girl” to do a day’s worth of housecleaning. Her earnings, and my father’s salary as a tailor and cigar maker, helped raise a family of four that moved through a series of rented homes in North Philadelphia (all of which had coal-fired furnaces) to a three-story “big house” in Nicetown that came with gas heat. It was the first house we lived in where you could literally flick a switch and get instant heat.

So when Alzheimer’s took on this strong, independent, religious and pride-filled woman, we (my two sisters and brother) all mobilized to take care of her. We wanted - no needed - to return some of the love, compassion, sacrifice and endless nurturing she always gave.

Now, it was our time to care for her. In my heart and mind, it was simply a rite of passage. So, I took on the responsibility of being a caregiver with plenty of confidence, pride, and a sense of duty . . . and immediately began to falter when I came to realize that Alzheimer’s was taking the person I knew my whole life and leaving me with a stranger. I struggled with the loss of the mother I knew and grabbed tightly to the hand of this person I knew nothing about, who had few memories of me, but somehow was still my mother.

Alzheimer’s began to express itself in everything from sun-downing, to her use of foul language, to asking me questions of a sexual nature that more than once forced me to leave the room in shock. I responded to each with disbelief that this was coming from my mother and once cried when she accused me of stealing from her bank account. I was also deeply challenged when caring for my mother included changing her colostomy bag, bathing and dressing her.

Seeing my mom naked for the first time left me ashamed, embarrassed and for weeks I couldn’t get over the feeling that I had violated her.

Unable to come to terms with my own deep-seated feelings of such intimate care, I joined an Alzheimer’s Support Group. I was the only man in the room. Trying to explain just how emotionally worn I had become over the issue of bathing and changing a colostomy bag did not go well.  Their response was to basically ‘suck it up and keep moving.’

So I did. No school. No classes.  No training. Just love, and a mission to do as much for her as she had done for us.

My siblings and I cared for our mother for two years until she was admitted to the hospital for a broken hip. After that she went straight to a nursing home where she lived the last five years of her life because her condition was well beyond what we were equipped to handle. On her last day on this earth, I got an urgent call from the onsite nurse who told me I needed to come right away because my mother’s body was starting to shut down and they expected her to pass in a short while.

I didn’t rush. I took my time preparing myself because I knew my mother wasn’t going to leave me without saying goodbye. The years of caregiving had created something beyond the typical mother-son bond. Our lives and identities were entangled in strength and history and loss. Passing the nurse on the way to my mother’s room, she said mom was comatose and probably wouldn’t awake again. I just smiled and kept walking. Sitting beside her on the bed, I held her hand and she opened her eyes, recognized me, and called me by my name for the first time in more than a year.

I asked her if she was worried about me. She said yes. I told her she didn’t have to worry anymore and that I had come to terms with some things and would be fine. If she wanted to go that would be okay. She nodded her head, and within an hour she had transitioned to the next life as I continued to hold her hand.

Lillie Mae Blake was 98-years-old when she died. Her funeral services stretched over two days to accommodate the many friends, relatives, and loved ones who wanted to say goodbye to the woman they knew and loved—strong, independent, and deeply religious.

While I mourned the loss of my mother, I did not mourn the loss of my identity of caregiver. That “gift” was one I hadn’t wanted, one I often stressed about, often felt angered about and isolated in my role as a caregiver. But I would not have changed it for the world. I am a better man for it because it has allowed me a deeper understanding of my identity and connection with loved ones. It also prepared me to care for other members of my family when they’ve fallen ill. (My brother and oldest sister have since died—both within three years of our mothers passing). Still, I learned more than I cared to know, and became the kind of person my mom had always wanted me to be—compassionate without cause, and an unconditionally loving son who walked her home with pride.

- Joseph Blake

For more information on the PA CARE Act, click here.

For caregiving resources, go to www.aarp.org/caregiving/‎.