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The Anguish of Watching a Parent Decline

February 22, 2019 Barbara Ballinger

We’ve been deluged with articles, books and movies about the difficulty of caring for an aging parent. There are many physical and emotional needs that a caregiver must tend to like a gardener to keep plants alive.   

That’s all well and good, but we’ve also heard about caregiver burnout. Most often it’s a daughter who becomes the main person in charge, especially now as unemployment shrinks and more of the very old live longer. I’ve quickly learned what my peers who assumed this role earlier found as I become an expert: We’ve stepped into a crazy land. It’s a journey without a Google map.    

 

  

Although my mother turned 90 nine years ago, I found that it wasn’t until she turned 99 five months ago that life became tougher for both of us. At 90 she still could take the train to my house two hours away by herself and climb the stairs to her bedroom in my two-level 1797 home. She also could travel with me to China and walk along the jagged rocks to catch the boat to cruise along the Yangtze River. Our travel mates dubbed her “Empress Estelle” for her grace, sense of adventure and ability to share stories of other travels with her husband, Joe, my dad, and with me and sometimes other family members after he had died. 

But five months ago, changes became more pronounced on many fronts. First, her hearing went south. She refused to buy a hearing aid, convinced that they didn’t work based on one grandfather’s experience decades ago. The result was that she became more isolated and missed many conversations. I tried to speak louder, be right in front of her when I talked, so she could “read my lips.” Thank you George H. W. Bush. 

Problems with her eyesight due to macular degeneration also had worsened. I started bringing her large print books from my library and even asked the library to buy some favorites such as Michelle Obama’s recent autobiography, Becoming, which I particularly liked. I also brought books I liked that we could read together. She liked the shared activity; it was I who tired reading long chapters. 

 

 

She began to walk slower and then barely could walk or at least only with her cane at first, now with a walker. She stayed in bed longer, so she wouldn’t have to budge and not risk falling. Incontinence became the biggest challenge, so we always had to know where a bathroom was. She went out less as a result. I took her to a new urologist who offered medicines, which sadly failed to solve her problem. Some parts were simply worn out. 

Always the consummate home cook, long before Julia, Martha and Ina made it fashionable, she had greater difficulty preparing food. Her taste buds changed, and her list of preferences narrowed to Jell-O, fresh bagels, soup, desserts and soda, lots of the latter, which she had never liked. Soon, she was totally dependent on prepared foods delivered from the grocery store or home cooked ones from me, her preference, which put more pressure on my new “vocation” cook-and-delivery service. 

We temporarily tried City Meals on Wheels, which delivered free meals. She soon asked me to cancel the service since the Kosher food tasted bland to her and arrived in bare-boned airplane-style containers. It didn’t meet her culinary standards, even though her appetite was diminishing. Her hands began to lose their steadiness, so she no longer could polish my silver which she once loved to do when she visited. Peeling apples for a favorite Julia tart became too difficult, too, as did peeling and grating potatoes for hand-grated latkes. I took on those chores, but the sadder part was that those activities had made her feel needed rather than invisible as we all scurried about with our busy schedules. 

In addition to sleeping more, many days she would not get out of her nightgown when I visited. Initially, it bothered me, and I would say, “Why not get dressed? I am making a nice dinner.” The underlying message was that my hard work preparing a meal deserved real clothing. Then, I gradually accepted that that simple activity proved more difficult, so I gave up except if we had company. In fact, I tried to invite some of her and my friends over whom she liked. New faces were the best medicine, linking her to days when she was more active and vital and could talk about trips to England, the Far East and even favorite restaurants in the neighborhood where I was raised. “Do you remember the garlic bread lady and the delicious spiced peaches at Washington Arms?” I would ask. She would smile and we would share how much we loved that special place, shuttered years ago.  

After each visit as time went on, I adjusted my expectations downward. She would eat less, sleep more, inquire less about my life. My daughters seemed to have a more difficult time dialing down their expectations. They worried about her weight loss and greater frailty; they had each bonded with her from living at her apartment at different stages during and right after college. She no longer resented one daughter storing some of her clothing in in her ample closets, which she liked keeping perfectly organized. She no longer cared. When I mentioned getting the ceilings repaired and painting in a few places, she got adamant. “No, not until I’m squared away.” What did that mean I wondered. And then there was even a nasty comment. I tried to ignore but it stuck in my brain.   

What made it most difficult in accepting the changes were that her mind remained sharp as did her memory. She could comment about our President’s actions based on what she heard on news programs she continued to watch and listen to with the volume turned to loud. She was terribly upset when Charlie Rose was fired from his news program since she had always loved his interview style and choice of guests. “I’m very angry with Charlie,” she told us, thinking we might have the power to get him to change his ways and get his job back. She could accurately recall how she entertained her Jewish friends on Christmas Eve annually rather than go to a Chinese restaurant and movie as many did when she and my dad lived in a suburban home. She enthusiastically recalled life further back when her close-knit, multi-generational family in Columbus gathered Sunday evenings for baked spaghetti and chocolate and coconut cake.  

Even though she could do less, she fought me long and hard not to get a regular cleaning helper or caregiver. I finally won that battle. And then there was another about regular help to bathe her, prepare simple meals and simply engage her in conversation. Months of arguments about my worries that she’d leave on a burner or fall when bathing led her to relent. I finally found the perfect expression to stop the fighting. “This is simply not negotiable. I can’t handle the stress, and you may outlive me,” I kept repeating those words, which finally made her agree. Several months after the aide started, she found she loved the company. She also agreed to wear a Medic alert device after more nagging on my part and her doctor’s insistence. I had heard that the worst injury in the home for older people was falling and then being unable to get up.   

The hardest part for her I decided was navigating life as a single despite our family’s attentiveness. When we had time to talk—really talk, she would share that she never felt her life was as good without her husband of almost 50 years. They had what I would define as a very traditional marriage, typical of her era, mostly good but with cracks, which they mended by avoiding certain issues rather than talking about them to each other or with a professional. Few did that back then, though my father greatly believed in the concept of getting therapy—for others.  

But the real secret to their long union, I believed, was that she accepted that he ruled the roost, didn’t want her to work if she couldn’t be home to prepare dinner and serve it by 6 p.m. and be up early to offer breakfast since he left by 7:30 a.m. or so. She had a few part-time jobs but nothing that took her away too much from the house, though she could have. She is smart, organized and would have been good at a major job, I believe. My mother also accepted my dad’s decision that the son in our family would be the prince and represent their future hopes and dreams. There was none of this Jewish princess stuff permitted for me—nice summer programs but not the same emphasis on college and graduate school. Their dreams for me were more modest--to graduate from a “good” college, marry and have children.  

And then as my mother’s siblings, cousins and many of her closest friends, except two, died and it became harder for her to go to her synagogue weekly and interact with new friends, life became lonelier. She waited for our calls daily and visits and then she shared more often that some live too long and that very old age with all the ailments is no way to live. We heard her underlying message clearly but reminded her that we wouldn’t go to jail for her since we understood what she was asking us to do. She had a philosophical attitude about dying. “When it’s your time, it’s time,” she’d say, often adding, “Some of us live too long.”  

However, I have never truly believed her. I know she has relished living to see two great-grandsons born, walk and talk, and the older one knows her building, some of its staff and the view of a bridge from windows on the East River. “Dad would have had such fun with the boys,” she has told me so many times. And that’s why I believe she wants to hang around as long as she can enjoy them. So, while I empathize with the all the ailments causing her diminished difficult state, I also know how lucky she is to witness our family move into the next generation. And despite all my emotional exhaustion from my extra responsibilities, greater sadness about her increased pain and our disagreements often resulting from that pain, I try hard to heed one friend’s advice to enjoy our time together every single visit. This is when we both must learn to live in the moment and not dwell on what next.  

Sidebar Tips for Caregiving

In her well-researched and thorough, book The Conscious Caregiver (Adams Media, 2017), Linda Abbit, a family caregiver and founder of Tender Loving Eldercare, a blog and online community, asks and answers some of the most key questions for the caregiver-recipient relationship to succeed, from how can I practice self-care to how do I know if I should move my loved one from his home to a facility? Abbit starts by defining “conscious caregiving” as choosing to “allot time, energy, and compassion to themselves as well as to their care recipients.” Certainly, the job, which many of us don’t apply for but which is thrust upon us or which we take on because out of love or a sense of responsibility reflects a tough balancing act. Here we share three tips from Abbit’s highly helpful book: 

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Among the key minefields to watch out for, she says, is burnout, which can lead to health problems such as a weakened immune system and illness, anxiety, depression, headaches, obesity and even substance abuse. She shares both how to recognize and avoid it. One key strategy is accepting help by acknowledging that you can do anything but not everything. Learn to delegate, use respite care, add care at home, adult-day services, respite care in an eldercare facility, a support group and take time off from work.

Most of all, perhaps, is the need to be kind to yourself, lower expectations of what stellar caregiving means and identify your feelings so you know what you feel rather than operate almost as a rote zombie. And here’s a huge piece of good advice--if you explode at a loved one from irritation, lack of patience, whatever the reason, step out of the room or situation and cool off, identify what happened and come back with a better attitude, maybe even the next day or several days later. 

Another one of her helpful tips is to master self-care. What works for you may not work for the next person, so carefully develop a repertoire of what your happiness list includes. For Barbara it was--and is--to continue her writing work and painting and periodically enjoy an escape elsewhere. When her father was diagnosed with Alzheimer’s disease, she joined a support group to gain ideas to help her mother who was more private about what was happening. For Margaret, hiring a caregiver during the day for her mother was a godsend and gave her some time away from the caregiving grind. And for others, Abbit suggests, listening to music and venting, and might we add venting to the right person.

You want to find someone who will listen rather than lecture or advise unless that’s what you seek. Better yet, too, is to have someone who went through the experience and gets what you’re experiencing and maybe feeling, though feelings will be influenced by your particular relationship with the recipient. We also add that it’s helpful to count your blessings to balance the negative downsides that occur along the way.   

The third tip is to understand anticipatory grief. In these end-of-life situations, the recipient will not get better; maybe, one day she or he will be more lucid, more active, much happier. But the end result is the same: death, since nobody has figured out a way to escape that stage in this world. Family caregivers may experience feelings of anticipatory grief before the end, she says, which amounts to a feeling of loss while your loved one is alive.

Imaging what life will be like without the person is a start. So is figuring out ways to enrich interactions while you both can do so. And if you’ve engaged in discussions long before about medical treatments, end-of-life ceremonies, legal documents being signed, dispersal of possessions and more, great. But many don’t so now it becomes more crucial. Don’t put off. She also offers ways to start a dialogue, perhaps, by talking about ancestors who have died and how the end of their lives were celebrated. Abbit goes on to share what the grieving process often looks and feels like. However, much like parenting, you can’t really understand grief until you’ve experienced the loss. 

This is not a book that most of us buy or read with enthusiasm. However, it makes the process a bit easier to know what others have experienced and to share their first-hand ideas. Knowledge is power, even when it’s drowning in tears.



2 comments

  • Nan Jackson

    Feb 27, 2019

    Wise and sad at the same time. Thanks, Barbara.

  • Marilyn liss

    Feb 22, 2019

    Estelle is a role model. Aging is not easy. She has fought it
    For a long time. She is a special woman.


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