The Gift of Being a Caregiver

Maxine, her mother and Stan Goldberg. Stan Goldberg

COMMENTARY BY STAN GOLDBERG Caregiving is often thought of as a one-way street where altruism rules: the caregiver gives and the loved one receives. But most caregivers feel they often receive more than they give, as Maxine Kraemer does in her poignant story.

My lucky day arrived when my aging mother came to live with me, and I became her caregiver. For one thing, I got to share my mother’s last years while assuaging the guilt I felt for leaving New Jersey and my parents.

My History

As a newly divorced 30 year old, I struck out for independence 3000 miles away in San Francisco where my older sister paved the way a year earlier. Thirty five years passed with my father always asking when I was going to move back to New Jersey and then Florida where they eventually retired. I answered that I had a full life and career in San Francisco and couldn’t imagine myself as happy anywhere else. But still I felt guilty. My brother, living in Massachusetts, had also moved away but provided my folks with four wonderful granddaughters who they saw regularly.

Time passed, my sister died,and my dad died. Mother had at least one stroke and received care from a lovely Jamaican woman living with her in Boca Raton. When I retired in 2004, it seemed ridiculous for a stranger to be caring for my mother. I decided to spend my mother’s last years with her.

The Decision to Become a Caregiver and Progression of Responsibilities

I had the space in my two bedroom condo, but I didn’t think she’d want to leave Florida and her friends. How wrong I was! My mother jumped at the offer and moved in with me ten years ago. She was 87 years old then.

At first her care only required providing meals and company, but as her physical and mental conditions deteriorated, we had to employ a couple of aides each day.

I knew I would lose my enthusiasm for caregiving if I were solely responsible for all of her needs, especially toileting. Thankfully, my father left a trust which provided for my mother’s care.

The aides spend eight hours a day with her; five in the morning and three in the evening. When I go away over night, we are lucky to have a woman who stays with her. My own caregiving duties include making breakfast and dinner everyday and providing new books and DVDs. She reads the same books repeatedly and watches the same DVDs, but she still loves the new ones I bring her. Since she is now bedridden, these are her main forms of entertainment.

I try to spend quality time with her each day as her mental awareness and energy allow. I use my iPad to photograph any changes to the house or garden, and love her enthusiasm at viewing these. We look at photo albums together and laugh as we share the memories. Sometimes we just discuss her colorful dreams. I debate with myself about correcting her recollections, especially about who’s alive now.

She is now the sole survivor of her very large family. This is the down side of outliving everyone.

Lessons From Caregiving

Accept and Relish Humor. My mother has a great sense of humor.  She loves to laugh and can often be quite funny. In my youth she had always been so serious and concerned about making sure everything was done right. There just was no place for joking around. Now, if she’s having a particularly cranky day, I can joke “What have you done with my mother?” and she snaps right out of it.  I’ve learned that a bad mood is just that and will pass.

Flirting Doesn't Stop With Illness. My mother is still a flirt. She loves it when men come to the house who either are friends or workmen. Her whole being lights up, and she’s totally adorable.  I’ve really come to appreciate the guys who go out of their way to visit with her.

Structure the Environment. She is very visual and cares about what her room looks like. Her bookcase “had to be painted”, then the wicker bench. I brought home paint chips so she could be part of the decision making. I’ve learned she likes having control over her environment. 

Accept Support From the Person Receiving Care. My mom supports and encourages me. When I was her “little girl” (which lasted until I was 30), she worried how I would turn out, what people thought of my behavior, how I looked, and what they would think of her for raising such a “wild child”. Consequently, she was critical.  I would have defined her as negative.Today she is positive  and complimentary. If I’m sick, she asks how I feel, and always wants to know if I’ve slept well. I guess you never stop being a mother.

Keep Your Loved One Informed. She knows I have a full life and wants me to enjoy myself. She encourages my “respite” vacations and my time with friends.I recognize she needs to know when I’ll be returning. If it’s a few hours, I give her a range of time. If it’s a vacation, I give her a calendar with my departure, itinerary, and return date clearly marked. It seems to be enough for her.

Document Memories. I made a terrible mistake by not writing down or recording my mother’s memories when she was still able to recall them. From some of our early conversations I know that she was very poor and worked in her mother’s candy store every day after school. Her father was a paper hanger and hung out in the Union Hall playing cards when not working. She wanted to be a school teacher and studied for one year in a Normal School but had to quit and go to work. She wrapped packages at Bamberger’s Dept. store, went to business school and became a legal secretary. She saw the Hindenburg burn, lived through the Depression and was madly in love with my dad. My mother loved to sing and had such a beautiful voice a friend thought it was the radio we heard while playing in the backyard. I often try to get her to sing with me, usually some old song we both remember.

Listen. Listening is the most important thing I’ve learned. We were visited by my brother and his 22 year old twins who had not seen my mom for about a year. One of the girls went off on her own into my mother’s room and sat talking with her for about 30 minutes. Afterward, I asked her what they had talked about. She asked my mom what advice she could give her. My mom said “Just be kind.” Could there be any better advice? We all nodded and smiled at the simplicity and wisdom of my beautiful 97 year old mother and at the tenderness of my niece.

My mom wants to live to be 100. I told her that would be great,  but then she has to go. We laugh a lot about that one.

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