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Caring for a Parent with Dementia is Challenging, Humbling

Burning out from caregiving, this columnist rekindled her spirit after finding a gift laced with a happy memory in her closet

 

Crafted from fine cotton yarn, the black sweater has been a staple in my spring wardrobe ever since my mother bought it for me several years ago. Pulling it from the back of my storage closet last month, I suddenly recalled a sweet memory of Mom – and a time when I wasn’t overwhelmed by what social workers refer to as “caregiver’s burnout.”

Then came an unexpected flood of tears.

It’s not like me to fall apart over a sweater while I’m reorganizing my closets, but then again, my 80-year-old mother hasn’t been herself lately, either.

Up until this year, Mom’s decline has been gradual. In 2008, not long after my son graduated from college, everyone in the family noticed she was repeating her favorite stories even more than usual. The following year, her friends began calling to tell me she wasn't showing up at club meetings and lunch dates.

At first I dismissed the episodes as normal signposts of the aging process or I blamed them on medication side effects. But a phone call from Mom’s primary care physician, who was treating her for cardiovascular issues, confirmed what we'd suspected all along. 

“I'm concerned that your mother’s memory loss could be linked to dementia,” the doctor told me. “It’s time to look into it.”

Getting a diagnosis and some help

So began a series of tests and appointments at Beaumont Hospital’s Geriatric Evaluation Clinic, where my mother’s vascular dementia was officially diagnosed. A team of geriatric specialists outlined their prognosis, offering safety precautions and lifestyle tips that would foster Mom’s independence as long as possible.

There was good news to sweeten the bad: The doctors agreed that Mom, a widow, was capable of living alone in her condo a while longer. But they strongly advised her to stop driving her car.   

That was last November, but my mother doesn’t remember visiting the clinic, nor does she use the word “dementia” to describe her memory lapses. Understandably, she’s devastated by the loss of her car keys and wants to believe she’ll get them back.

Meanwhile, thanks to Beaumont’s Older Adult Services on the Royal Oak campus, I learned about the Helping Hands program, a private hire service that assists older adults with transportation and light housekeeping. Our Helping Hands companion, Barbara, has become my mother’s new best friend – and she’s my weekly respite from errand running.

Even so, Barbara is only a temporary solution.

Friends and family members are trying to talk Mom into moving to an assisted living facility while she’s still able to make her own choices, but she’s totally resisting the idea. “There are too many old people there, and I'm not ready for that,” she remarked after touring one of the nicest eldercare facilities in the area.

Of course, I can’t blame her for seeking refuge in denial. Lately, I find myself wishing I could rewrite the whole scenario, too.

Remembering a mother's heart

Like most elders suffering dementia, my mother is often preoccupied with real and imaginary problems. She calls in a panic when she can’t find her TV guide, for instance, or when she thinks a thief snatched her garden hose. When her anxiety mimics a heart attack (which happened often last year) she’ll ask to be driven to the ER. But she no longer calls just to chat or to express interest in what I do when I’m not managing her medical care.

To be fair, she’s lost interest in nearly everything she once enjoyed, from needlework to lunch with friends. And shopping.

Years before she became ill, my mother’s favorite sport was bargain shopping. While my father bonded with his buddies at Tiger games, Mom and I would hit the malls and discuss our wardrobe scores over lunch. Even after I grew up and had a child of my own, she’d still purchase a new item of clothing for me whenever the seasons changed.

Which brings me to the story of how I acquired my black crocheted sweater.

Several years ago, I told my mother I’d been hunting for such a sweater – a transitional piece that would substitute for a spring jacket. I’d looked for one in several clothing stores and had nearly given up the quest when, one spring afternoon, I found a T. J. Maxx shopping bag hanging on the side door to my house. In it was the perfect black sweater, which my mother had purchased at her favorite discount store.   

Rediscovering the sweater in my closet last month, I remembered the mother and best friend I sorely missed. My tears released a flood of mixed emotions.

As Kahil Gibran wrote, “When you are feeling sorrow, look again in your heart, and you will see that you are weeping for that which was once your delight.”

Until that moment, I’d been privately raging against the dementia that was slowly devouring my mother’s life, her self. Most important of all, I hadn’t fully grieved the loss of the woman my mother once was – the strong, thoughtful woman who had generously shared her wisdom and recipes; encouraged my career; baby-sat my son when he was small; and took delight in shopping for new clothes.

I wore the sweater again last week when I drove Mom to an appointment at her pacemaker clinic.

“That’s a pretty sweater you’re wearing. Is it new?” she asked, trying to make small talk as we headed down Woodward Avenue. Clearly, she had no recollection of buying the sweater.

So I reminded her that she'd surprised me with it a few years ago, and that it was one of my favorite things. She looked genuinely pleased. I also noticed a familiar sparkle in her eyes when I mentioned T.J. Maxx – and I made a mental note to take her shopping soon.

For information on Beaumont Hospital’s Older Adult Services, phone 800-328-2241 and Helping Hands at 248-551-0776.

Cindy La Ferle's award-winning essay collection, Writing Home, is available on Amazon.com.  For more information, visit Cindy La Ferle's Home Office.

 

Related Topics: Caregiver, Dementia, and cindy la ferle
Are you caring for an elderly parent? If so, what local resources do you use when you need help? Tell us in the comments.

Alan Stamm

10:39 am on Sunday, June 12, 2011

Poignant, brave storytelling, Cindy. I hope we'll see sequels from time to time.

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Cindy La Ferle

10:57 am on Sunday, June 12, 2011

Thank you, Alan. I wouldn't have shared it if my mother could read it. But she doesn't use a computer (nor do her friends) and doesn't read my writing anymore. My hope is that others in my position will read it and know they aren't alone.

Lynne Cobb

12:00 pm on Sunday, June 12, 2011

Your story brought tears to my eyes...as one also watching a parent suffer through this horrible disease, sometimes just seeing that "sparkle" in their eyes is what can get you through the day. Thanks for sharing!

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Cindy La Ferle

1:33 pm on Sunday, June 12, 2011

Lynne, it really helps having a friend like you who's in the trenches. Wish it were easier for us all. Thank you for being there.

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Jan Smith

1:01 am on Monday, June 13, 2011

This brought tears to my eyes, too. The problems involved in caring for elderly parents creates such a whirlwind of emotions. Almost nothing about them and their current situation squares with the parents we've known and loved all of our lives. They are less strong, less sure and in some cases like your mom's, very confused. That spark of interest in shopping is a good thing. Sometimes bringing up old family jokes and funny memories can bring smiles and even laughter. It feels so good when that happens!

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Cindy Hampel

10:42 am on Monday, June 13, 2011

Cindy, I recognize what you're going through with caregiving issues for your Mom. Although my Mom didn't have dimentia, her behavior changed quite a bit from the Mom I remembered and loved as a little girl. As I mentioned in my book, I needed to cling to those earlier memories of my Mom to give me the emotional context I needed to keep helping her as her health deteriorated. My Mom was a packrat, and it certainly had a downside when we were clearing out her condo after she died...however, I also had the chance to look at -- and sometimes cry over -- something that triggered a fond memory or offered me more insight into the person my Mom was, especially before I was born.

While my Mom was still living at home, I had arranged for regular delivery of warm lunches. When it was difficult for my Mom to go to the doctor's office, I also arranged for regular visits by a doctor who made house calls. Those services were a real blessing. We also had a monitoring service so that my Mom pressed a button when she went to bed and after she woke up. She also had a necklace button she could press to summon help so she could alert the service if she fell or needed help.

Cindy, thank you for writing such a poignant story that accurately represents the emotions we share as caregivers for our parents.

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Susan Lambert

10:52 am on Monday, June 13, 2011

Cindy...as usual your writing leaves me nearly breathless as I literally was holding it while reading your words! I will not comment much on this one as it hits far too close to home but I did want to let you know how much it meant to me. Though I am no longer caring for my mom (heaven's turn for that) my care-giving days are far from over. It truly helps to be reminded that others are in similar situations with loved ones. Thank you again.....your writing is beautiful and please keep us updated on Mom's progress!

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Cindy La Ferle

2:16 pm on Monday, June 13, 2011

Susan, Cindy, and Sharon: Thanks so much. I appreciate your kind words.

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Lisa Hook

3:19 pm on Monday, June 13, 2011

Cindy I am moved to tears. Thank you for sharing in such a beautiful, intimate way. You make your readers feel like good friends. Your warmth touches the soul. Peace and love to your and your mother. My prayers are with you in this journey you are on now. Over the years, reading about your life has been a joy, it is also an honor to share the sorrows. You really touch the heartstrings with this. I remember my grandmother thinking I was my mother, and calling my daughter by my name. I just held her and loved her until the end. Hugs to you and thank you for your insight and wisdom as always. God gave you such a gift. Thank you for having the courage to share it with the world.
Lisa Hook

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Cindy La Ferle

4:37 pm on Monday, June 13, 2011

Lisa, Thank you. I do think of Patch readers as good friends -- and feel lucky to be able to share my thoughts here.

Pam Rusinowski

7:49 pm on Monday, June 13, 2011

I am always left a little breathless and in awe of your reading and how it feels like I just finished visiting with a friend. You are a blessed writer! Thanks for sharing your life, your thoughts and emotions. Pam Rusinowski

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Pam Rusinowski

7:49 pm on Monday, June 13, 2011

Meant to say "in awe of your writing"! LOL!

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Cindy La Ferle

8:31 pm on Monday, June 13, 2011

Pam, I really appreciate your comments -- thank you for reading the column today!

Joanna Jenkins

12:14 am on Thursday, June 16, 2011

I have a lump in my throat-- Thank you for your honesty and for being such a great daughter. I know first hand it's not easy being a caregiver for a parent. Your mom is blessed to have you.

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Constance Johnson

7:40 am on Saturday, July 9, 2011

My father had vascular dementia and he passed 3 years ago. Your article brought back many memories from the days we cared for him and dealt with the issues his disease brought, from the driving issue to the confusion and calming his fears. Helping him was an honor but it was sometimes very painful. Thank you for sharing; I miss those days with my father. He had a wonderful sweetness even amidst the trials from his disease and I enjoyed the time I had with him.

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Cindy La Ferle

3:45 pm on Saturday, July 9, 2011

Constance, thanks for your comments. You certainly can empathize, and I appreciate your taking time to write. Sounds like your father was a wonderful person. Cherish those good memories.

Carla Temple

12:08 am on Thursday, September 1, 2011

Oh Nin ! I'm sorry you're experiencing this awful disease with you dear mom. I know you've been through a lot. Phone calls prompted by your mom's anxiety gotta be so difficult to hear. I love the description of her shopping skills. A woman after my own heart. Bargain hunting is such a fun "hobby". :D She and Mops would have been good friends, had they met.....
We're having some real issues and worries now with Pops. I'll fill you in sometime. It's terribly sad and concerning. I can't even "parent the parent" because he is so stubborn .
Hugs your way . Hang in there . . . laughter does help I hope. ~ I'll be spreading the word here of the wonderful writer in DTW jaja (Spanish for ha ha) xox

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