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African Americans Living with Alzheimer’s Disease: B. Smith Shares Her Plight

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Last week, we learned that former model and restaurateur B. Smith has been living with Alzheimer’s Disease.  Smith, dubbed the “black Martha Stewart” due to her career paths as a designer, author, and TV host, shared her story about remaining steadfast in fighting the disease, and having the support of her husband and business partner.

Photograph of B. SmithHearing B. Smith’s candidness about the uphill battle of living with Alzheimer’s was empowering, especially since African Americans typically do not share their stories about Alzheimer’s.  Being an advocate and putting a face on what Alzheimer’s “looks like” in our community is a powerful testimony for and from Smith; her story validates the experiences of those living with Alzheimer’s, and the caregivers and families who care for their loved ones each and every day.

Alzheimer’s Prevalence

More than 5.2 million Americans live with Alzheimer’s, with over 200,000 being those 65 years and younger.  Of this population, 3.2 million are women and 1.8 million are men; women make up two-thirds of those living with the disease.  It is estimated that by 2050, the number of those with Alzheimer’s will triple from 5 million to 16 million.

Last year, almost 16 million American families and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias.  This unpaid care has the value of $220.2 billion.

When it comes to medical care, Alzheimer’s is the most expensive condition in America.  With the projected tripling of those living with Alzheimer’s, this medical care expense strain will be astronomical.

Concerns Surrounding African Americans & Alzheimer’s

Two African Americans holding hands, one's a caregiver, the other is the one receiving careAccording to the Alzheimer’s Association, many Americans dismiss the early warning signs of Alzheimer’s, inaccurately believing that what they are experiencing are normal developments in the aging process.  This misunderstanding of the aging process versus Alzheimer’s is especially true for African Americans, who are two times more likely to develop late-onset Alzheimer’s disease, and other dementias, than whites.  Missing the beginning stages of Alzheimer’s greatly disadvantage African Americans, as we are less likely to receive a diagnosis for our condition, which correlates to delayed treatment and planning.

How Alzheimer’s Disease Affects My Family

During the Summer 2008, my beloved Grandmother (who affectionately known as “Big V” from my blogging) was diagnosed with the early stages of Alzheimer’s at the age of 78.  She, as well as us, noticed her having difficulty with routine tasks after she had a mild heart attack two years prior.  We decided to tell her general practitioner about our concerns, and he suspected Alzheimer’s, and placed her on a medication regimen to slow down the progression of the disease.

Why I Dislike Alzheimer’s & What It Is Doing to My Grandmother

Thanks to her doctor’s ability to spot the early signs, the medication has allowed her to still hold on to her independence, and allow us to have more time with her.  Though I am very grateful that Grandmother has been receiving treatment early in the game, I honestly hate what this disease is doing, and has done, to her over the last six years.  I detest seeing her confused and frustrated about not being able to remember dates and appointments.  My Grandmother is the matriarch in our family, and has always been an independent woman; relying on others to help her remember things and conduct simple tasks makes her feel helpless.  It pains me to hear her talk about what Alzheimer’s is doing to her because there is nothing that I can do to extinguish it from our lives.  Alzheimer’s scares me because my biggest fear is her looking at me one day, and not knowing who I am.  If I am fearful of this, I know that she has to be terrified.

Being a caregiver at almost 29 years of age is toilsome emotionally and physically, especially when you are used to receiving care from the person who raised you.  My Grandmother will be 85 years old this summer, and though I am fortunate to have her here, I do not have all of her here.  I miss being able to talk with my Grandmother the way that I used to; there are days when I am talking to her, and when the disease has taken over.  Seeing her defeated on the days that Alzheimer’s is present destroys me inside.  I am used to her being strong for me; how do I learn to be strong for my hero, my rock?  Being strong for her has been challenging; some days I succeed, while on other days my anger and weariness consumes me.  Alzheimer’s is a vile, ruthless enemy, one that tests my faith, patience, and strength each and every day as it affects my Grandmother.

What Alzheimer’s Has Taught Me & My Grandmother

Though Alzheimer’s has invaded our lives, I have learned a great deal from this experience.

1)  Treasure the Good Days, & Do Not Dwell on the Bad Ones.  When Grandmother has a bad day, I know that it is not me or her; it is the disease.  I try to calm her frustrations/worries that may pervade that day, and know that tomorrow will be better.  When we have a good day, I treasure it because they occur more often than the bad ones.  When I am able to have talks with her like I used to, or when she does something that let’s me see that she is “still there,” it makes my heart smile.

2)  Stop, Breathe In, and Breathe Out, When Things Get Overwhelming.  Taking a step back and inhaling deeply when I feel myself becoming consumed by stress is not only healthy for me, but also how I react to her.  It is OKAY to step out of the room to gather my thoughts and calm down.  My mood affects her mood; if I am feeling crabby, that energy will transfer over onto her.  When I am calm and in control, that energy assists her if she is feeling anxious that day.

3)  Enjoying the Quality Time You Have With Them.  I never thought that I would a caregiver at this age; no one my age should have this experience so young.  However, I have grown so much as a person because of caregiving.  The most positive takeaway from this has been cherishing the relationships you have with others.  Though my relationship with my Grandmother has undergone an irreversible change, I have learned to relate to her in the manner she is able to connect with me.  The activities she enjoys, such as watching TV and reading the paper, I try to be a part of.  The new ways we are able to spend quality time together is dear to me, and I try to make sure that we have our “Big V/Little V” time each day.

4)  Having An Empowering Support System, & Making Time for Self-Care.  I am forever grateful for my friends, especially those who are or had been caregivers to their elderly loved ones.  Being able to share my challenges and successes with such people has been my saving grace – you cannot survive caregiving without an empowering network of people who “gets” you, and your circumstance.

Taking time to be a “carefree” late-20s something is also essential; chatting and spending time with my friends is my version of respite care.  (Respite care is the temporary care of relief of a primary caregiver.)  Just as it is imperative to have a ardent support system, respite care is necessary for both me as the caregiver, and for her.  Making time for self-care affords me the chance to provide the best care possible to her, and avoid caregiver burnout.

Resources for Those Living with Alzheimer’s Disease, & Caregivers

There are programs and organizations established for those who are impacted by this disease.  In order to overcome the struggles both those living with Alzheimer’s and caregivers endure, you have to educate yourself about the disease, and the supports that exist to help you during this journey.

The Alzheimer’s Association is a well-respected organization that works tirelessly to educate and support individuals and families affected by this disease, and create awareness about the prevalence in America and worldwide.  The Alzheimer’s Association has several resources that may benefit those affected:

Provides information about warning signs, caregivers testimonies, and brain health, etc., specifically for African Americans and families affected.  

2014 The Longest Day, a day observed around the world to honor the strength, passion, and endurance of those living with Alzheimer’s.  The goal is to raise funds and awareness to propel the mission of the Alzheimer’s Association.  The Longest Day is held on June 21, 2014, which is the Summer Solstice (the longest day in the year, and the first day of the summer season).  

Other resources for caregivers of those with Alzheimer’s

Final Thoughts About Alzheimer’s

Education, medical research, awareness, community support, and acceptance are dire so that we can one day live in a world where Alzheimer’s does not rob us of those we love, and their memory.  I love my Grandmother, and Alzheimer’s will never be able to break the bond we have, no matter what lies ahead for us.

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I found this Alzheimer’s Request poem online, & thought that it would be suiting to share for this article.  This reminder touched me because it allows us to put into perspective what our loved ones want us to understand about living with Alzheimer’s, especially for those who may no longer be able to use their words to express their feelings.

 Alzheimer's Request

(Featured headlining images:  Courtesy of A Place for Mom, Dwell by Cheryl, & Imgfave.)

About Vilissa Thompson, LMSW

Vilissa is the Founder & CEO of Ramp Your Voice!, an organization she created to establish herself as a Disability Rights Consultant & Advocate. Ramp Your Voice! is a prime example of how macro-minded Vilissa truly is, and her determination to leave a giant "tire track mark" on the world.

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