Caregiving Up Close: Yasmin

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The third in a series of three caregiver portraits
in honor of FCA’s 40th Anniversary


“… When I can muster enough energy, while listening to music from her era we sing, dance a little, and I frequently ask her questions that elicit memories of her past. It is elating to hear her recall them, often with a smile.”

While Jasmin Hall is well aware of the frustrations and stresses of caring for someone with Alzheimer’s, she also has taken the initiative to explore a range of resources available to her as she cares for her mother. That help, along with finding joy in the small moments, has been invaluable in her caregiving journey, which she describes below.

Seven years ago, at the threshold of my desired career advancement as a journalist/ community organizer, I returned home because my 93-year-old mother was diagnosed with early-stage Alzheimer’s.

Undoubtedly, the diagnosis and its progressive stage(s) were devastating in what it means for her as a still-active woman. Likewise, thoughts of the potential changes and impact the diagnosis would have on my life, career, and culture were equally alarming.  

As I was single, childless, and the youngest of my parents’ four children, my life circumstances were an indication that I would be the primary caregiver. With the death of my father, my brother, and a sister, and with my other sister suffering from a chronic illness, I am my mother’s full-time caregiver.

Caregiving in my mid-50s is exasperating. Being unemployed, as well as living with my parent, is utterly frightening!

Without a doubt, caregiving is, for me, a major stressor. And yet, it has its rewards.

Because my mother’s income is slightly over the In-Home Support-Services (IHSS) eligibility requirement, I am an unpaid caregiver. After monthly bills, meds, and personal hygiene products, we cannot afford to pay someone for respite. Therefore, the ongoing daily care, its longevity, Alzheimer’s disease-related symptoms such as repetition and disorientation, are ongoing stresses which have affected my eating habits (or lack of), caused brain fog, perpetual fatigue, and other health-related issues such as heart palpitation(s), weight gain, and overall irritability.

Further, I’m unable to go for my formerly sacred ritual morning walks, and this has impaired my desire to exercise, entertain, engage with friends and loved ones, advocate for nonprofits I regard, or attend cultural/art life-enrichment activities I was regularly accustomed to.

Painting the town often included taking my mother. Before, and early in her diagnosis, we would mingle monthly to catch a jazz set, dance at the senior center, walk in the park or at the beach, take a brain fitness course, see a play, etc. Unfortunately, participating in fun activities has literally halted, although it would enhance our lives!

Places such as senior centers that offer life-enrichment activities require that folks with dementia-related illness be accompanied by someone, and day centers are often too costly or out of reasonable proximity. Therefore, I opt to stay home rather than prepare us for the long journey and/or use the gas to travel across town or to another city.

Nevertheless, I feel I am blessed, and caregiving for my mother has its rewards.

Despite my mother’s severely arthritic knee, she is mostly ambulatory, overall manages her toileting, follows prompting well and can often engage in lucid conversation. When she fell and had hip surgery a few years ago, many of the doctors commented that her overall health was otherwise excellent and complimented me for taking good care of her. One doctor said the reason she is doing well is because of me. Another time, while visiting a friend in the hospital, one of the staff mentioned that my mother looked happy, and she could tell because in her work she encountered many sad seniors!

It is heartwarming to hear my mother say, “You’re nice to me,” or “The meal was delicious,” or “Thank you, it feels good,” when I rub her knee with warm oil. Often when among family or friends, she asks or looks for me. She often wants me to lie in bed with her, yet I seldom do, for my need of some solitude and stillness. Other times, when I can muster enough energy, while listening to music from her era we sing, dance a little, and I frequently ask her questions that elicit memories of her past. It is elating to hear her recall them, often with a smile.

I discovered Family Caregiver Alliance (FCA) from a flier during a much desired, rare, and overdue visit to a library. Upon contacting family consultant Jo McCord, she immediately returned my call and scheduled a home visit. Shortly after, without bureaucracy, our family received direct support services.* The ease in conducting business was just as important as receiving the services!

Being a recipient of an FCA respite grant allowed me to enjoy simple pleasures, like sitting under a tree and visiting a library. It is an invaluable direct service, just as the winter and summer Camps for Caring are. Corresponding with education coordinator Calvin Hu regarding my mama’s attending camp was also a positive experience.

Having access to free webinars and receiving the monthly e-newsletter are awesome education/information resources!  For example, this month’s article on how to engage the care recipient in conversation is pertinent and practical information I can use and share with family, friends, and loved ones. Also, as a political junkie, receiving policy information and the ability to partake in campaign advocacy and/or organizing effort(s) from home is absolutely a fantastic resource.  

My fellow caregivers, we too are fantastic—even fabulous! And as we share the unique experience of being entrusted the care of another and traveling this sometimes troubling terrain, I often listen to gospel singer William Becton’s euphonic lyrics: “Stay strong while we’re going through.” I admire you, and I hearten you, as the song is appropriately entitled, “Be Encouraged.”
   
According to Alzheimers.net, approximately 5.3 million Americans are living with Alzheimer’s and it’s projected that by 2050 the number will rise to 16 million. With these alarming statistics, we need alternative living situations where family or other care providers and care staff can live on premises with their loved ones (who have the disease). We also need many more community-based organizations whose mission is to coordinate the care of the recipient and caregiver as a joint “wrap-around” service and resource. Additionally, having ample low-cost day and senior centers throughout neighborhoods that explicitly serve the memory-care population is a must!
 
As a woman with no children and very few relatives in California, if I am unfortunately diagnosed with Alzheimer’s or a related dementia I pray that I have planted plentiful seeds to stir the spiritual harvest of universal karma that God will send someone to reach out and embrace me as I have tried to do for my lovely mother and as Family Caregiver Alliance has done for us!


* Residents of the San Francisco Bay Area may be eligible to participate in special caregiver programs, including legal consultation, support services, educational programs, and limited respite assistance. Please visit and join FCA CareJourney or call (415) 434-3388 for more information.

 

Date: 
Tuesday, May 1, 2018