My mom hides her purse behind her pillow at night. Inside her bag is a roll of pencils, a set of steel pliers, a wallet full of change, four hair curlers, safety gloves, a deck of playing cards and three rubber bands. Why is her bag in that specific spot and as heavy as a box of rocks? A child of the Great Depression, I suspect it's because she was raised to keep your valuables close, and to throw nothing away. But if you were to ask my mom, she could not tell you why she is carrying the contents of a plumber's toolbox in her pocketbook. She probably wouldn't even recognize it as her own. My mom suffers from dementia. She's all mixed up and she knows it.
Since my father passed away over five years ago, I've watched my mother slip deeper and deeper into a shadowy fog of memory loss. The most difficult part is watching her observe the changes in herself. "I just don't know what's happening to me. I used to be so on top of things," she will often lament. Beyond historical events, her cache of recent memories is fleeting. The furniture in our home where she has lived for 36 years is unrecognizable to her. The day of the week, the month, even the year: all are beyond her powers of retention. Facts and details flit away like butterflies.
What is most remarkable – aside from the fact that modern medicine cannot find a cure – is my mom's everyday courage and resilience in the face of this cruel disease. She tries to laugh. Sometimes she is silly. And even when she doesn't know where we're headed, she willingly climbs into the car and comes along for the ride. Rarely does she get upset.
Her situation is certainly not unique. According to the Center for Disease Control, the numbers surrounding dementia are staggering. Worldwide, there are now an estimated 24 million people living with some form of dementia. ? Sooner or later, we all will deal with parents and loved ones whose health and memories are failing them. As my siblings and I learn to care for my mom, here are some of the lessons I have found to be important.
Get the paperwork in order…
My mom used to keep meticulous records. But as her forgetfulness grows, her efficiency diminishes. In order to establish personal management over finances, our family consulted an advisor and reviewed my mom's budget, assets, insurance policy and pension benefits. Consider establishing Power of Attorney as well as Medical PoA. If you need to register a joint checking account in order to pay bills, begin the process now. Consolidate any outstanding debt or credit card balances into one payment plan. Carve out a living will and trust if they are not already in place. Keep an active list of all the medications and physician records in the case of an emergency. This often takes time on the ground with the bank, over the phone with agents or in meetings with accountants and lawyers. Summon up as much patience as possible and take the process in steps. Baby steps. You will be pleased with yourself later should your parent get to a stage where you need to be in more control of matters.
Accept them where they are…
Growing up, my mother took great pride in her family's appearance, including her own. Now I need to remind her on a daily basis to bathe or change her clothes. Although deep down you may want the younger version of your mom or dad back, try to accept your loved one and their current limitations. Concentrate on the now. I draw gratitude from the simple. I am happy that my mom is trying. She is welcoming and warm. She smiles. She is happy to spend time with her grandchildren. My mom still recognizes my voice on the phone. I no longer probe for answers, as it simply flusters her when she cannot recall the details. Instead, I am content that she trusts me to handle her personal matters. She wants to hold my hand during her doctors' visits. Mourning the loss of what she used to do – cooking a meal, knitting a sweater, volunteering, calling me on my birthday – only takes away from the small blessings that we still enjoy together.
Put yourself in her shoes (or slippers)…
My mom tires early in the day now and talks incessantly about when we'll next eat. She repeats herself over and over again, almost to comfort herself with the one or two tales she has not forgotten. She is fixated on making cups of tea and washing her sheets. In this flurry of manic activity, I look at her and see the woman who cleaned and cooked for five growing children; the mom who drove me from mall to mall in the hunt for the perfect prom dress. The sewer; the diaper changer; the listener; the peacemaker. She took in a cousin and raised her as a sister. She buried a husband and cared for her own invalid mother who lived in our house for over a decade. After 75 years, I might be confused and absent of information too. I try to imagine how she feels at this stage of her life, during the moments when I begin to grow impatient with the endless questions and her pace and her wonder.
We have my mother on medication in the form of a memory patch, which she wears daily. I've contacted neurologists who have screened my mom. Most confess to having no certain answers. We could take some more of my mom's blood, try another pill, or register her for hyperbaric oxygen chamber treatments. We will attempt some of these if time and the need warrants. For now, I'll just watch and learn from the master. She will tell me everything.
Everything she remembers, that is.
Sally on Her 75th Birthday from Mark McDevitt on Vimeo.





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Mar 5, 2010 at 4:26 PM Hi Ann,
Paige Scott is a mutual friend who connected us some time ago. I was on LinkedIn today and came across your touching and extremely powerful piece on your mom. I was particularly moved by what you have written as my dad suffered through the same indignity before his passing. While there are a variety of support groups and new medicines for this disease, my fervent hope is that more is done soon so that the suffering may diminish. Only those who have lived through something like this understand that the children are the real victims of this disease. In a sense it may be a blessing that your dad has passed as this would surely be tough on him, as it was on my mother. My sister and I grew even closer through this experience as we realized that we were making the transition from being "the kids" to being my dad's "parents." The worst day of my life was the day he didn't recognize me. It broke my heart. Thankfully my dad didn't suffer in terms of pain and I hope you are as fortunate. It has taken great courage on your part to be this open and to share your experience. Please know how much it helps those of us impacted in our own way. And more importantly, please know how very much your mother loves you.
Take good care,
Eric Morse
Mar 5, 2010 at 7:31 PM Eric,
Your thoughts mean a lot to me. Thank you for the feedback. I wrote the above piece about my mom in order to share my story with others like you, who have been through much of the same experience. I hope that you had a chance to view the video I had posted as well: http://bit.ly/aZjl9G
I think it speaks to my mom's resilience in the face of the mental decline.
Best,
Ann
Mar 7, 2010 at 5:04 PM Ann
This is a vey touching and heartfelt post. It shows the importance of family and friends coming together as a team amd looking for the bright spots in every day.
I'm reminded of Gretchen Rubin's blog posts where at the other end of the age spectrum she says "the days are long but the years are short" as she watches her young daughter grow up quickly. Its all about savoring as much of daily life as we can.
Thanks for sharing a window into your family life.
- Jim
Mar 8, 2010 at 9:03 AM Jim,
I appreciate your sentiments. I am writing a piece on Gretchen Rubin presently and love the quote you shared above.
Warmly,
Ann
Mar 12, 2010 at 6:43 PM Hi Ann
Love the love in your words....you still have her though she is not the same...I appreciate that it is sooo tough but I would trade with you in a minute to be able to hold my mom's hand again...give her a bit of irish soda bread this coming St Patrick's day and enjoy it all no matter how hard and sad it can be...
Thanks for sharing it.
Marion
May 15, 2010 at 2:42 PM Hi Ann,
Sybil Lockhart, who wrote Mother in the Middle, referred me to this page. We are in a freewriting group together.
Your mother shows great "courage and resilience" as you say above, and I love the way you share and honor that here. There is so much medical science doesn't know, but it's not as bad as it was even 10 years ago, when my mom had undiagnosed Alzheimer's and I thought she was dying one cell at a time.
It can be very hard to appreciate the aging process while someone you love is going through it. Thank you for sharing this story here.
Do you worry that her condition is genetic?
Lynn
www.writeradvice.com
Author of You Want Me to Do WHAT? Journaling for Caregivers
May 16, 2010 at 11:07 AM Thank you Lynn, for your feedback. My mother's condition may be genetic as my grandmother had similar issues when we cared for her in our home for over 10 years. As for me, I take it one day at a time. I look forward to checking out your site and hope to stay in touch.
Blessings,
Ann