The authors share their experiences caring for their aging mothers who were diagnosed with neurological diseases. Kristine's mother Carole was diagnosed with a rare brain disease and her condition deteriorated, requiring Kristine to take on a caregiver role. Szifra's mother Sally had Alzheimer's disease. Both authors wanted to maintain their mothers' quality of life, independence, and dignity as their conditions progressed. They utilized various resources and made accommodations to care for their mothers at home and later in assisted living facilities.

1. February 2016
Caring for an Aging Parent with Love and Dignity
by Kristine Porcaro & Szifra Birke
Unplanned Journeys
We both have had the privilege of and responsibility for walking beside our mothers during the last miles of their lives. Each
step demanded that we create new strategies. Along our journeys we created new, unexpected and cherished relationships
with our moms during our time as caregivers
Kristine’s Story
My mom Carole was 58 and diagnosed with a rare neurological brain disease - so rare that no prognosis was clear. I found
myself in a complete role reversal with her. I was now the one worrying, pushing doctors for answers, reading everything I
could get my hands on, but my mom’s condition just kept deteriorating. The only goal that I felt I had any control over was
to try to maintain mom’s quality of life, independence, and most important, her dignity.
I had my first daughter as mom began to decline. I thought their
behavior sort of resembled each other - my infant daughter was
struggling with similar things, yet, as she began to learn, mom began to
forget. I wanted to always be there to help mom, but I couldn’t and felt
guilty. I knew my mom had never wanted me to sacrifice for her sake.
As a new mother myself I began to understand that.
Szifra’s Story
My mother Sally, a World War II Holocaust survivor, was diagnosed with
Alzheimer’s. I began a campaign to scaffold her with covert support that
would allow her to continue to go to work each day in her clothing
store. As her memory and judgement slowly declined, my mother also
lost some of the no-longer needed protective armor she had built to
deal with the murder of her entire birth family. I shared Kristine’s desire to
maximize her mother’s quality of life and dignity.
I looked for opportunities instead of losses and created a situation that was a win-win for both Mom and her caretaker. My
mom could celebrate the birth of each of her grandchildren again and again - and each time was fresh and thrilling for her.
Mom’s care partner,Anne, could grieve the loss of her fiancé as many times as she needed to - and Sally was newly
sympathetic.
Sharing What We Learned
We talked with nurses and called Associations that worked with other neurological diseases to collect ideas and discovered
ways to help keep their quality of life as high as we could. Many were extremely helpful, pointing us in useful directions
and providing resources.
We got a very quick education on health insurance, Medicare, Medicaid and long term care insurance. We met with Social
Security since she qualified for Social Security disability benefits.
We utilized geriatric care managers. They discussed safety when my mom was still living at home. We increased lighting,
installed railings inside and outside, removed all rugs to help prevent falls, and made many other environmental
adjustments.They shared advice on which assisted living and nursing homes had good reputations for care.
To avoid stairs, we kept everything she needed on one floor.
We eventually utilized an adult day care facility so mom had some place to go with people around until she needed 24-
hour care in an assisted living facility.
“Connecting the Head and the Heart of Wealth Management”
LEXINGTON INSIGHTSLEXINGTON
Wealth Management
Quote of the Month
“You gain strength, courage and
confidence by every experience in which
you really stop to look fear in the face.
You must do the thing you think you
cannot do.”
Eleanor Roosevelt

2. February 2016
We used resources to learn about different places to live in our area and we kept the private aide since she became like
family and loved my mom and took care of her almost as well as I did.
My mother didn’t want help so I told her that the companion I’d hired needed her friendship and some spending money. (I
also coached her companion.)
We were fortunate enough to find a lovely woman her age from a similar background. She shared stories and read to her.
Assisted living is expensive and the financial strain was enormous. $11,000 a month, holy smoke. Fortunately, my mom had
a long term care policy that helped tremendously.
To get her to move to an assisted living facility when she clearly couldn’t take care of herself any longer, I fabricated a story
about a gas leak that necessitated a move to a “hotel” - the assisted living facility - for a month. She forgot about that
deadline and quickly settled in.
I never expected my mom to “be okay” in an assisted living facility. To my surprise, she adjusted really well. We, too, kept my
mom’s care partner, who’d become her closest confidante and friend.
When the nursing home said that it wasn’t worth giving her physical therapy to improve her walking, we hired an outside
PT anyway.
I was always looking for ways to give her a pleasant experience to spike her endorphins. One small example, I collected a
basket of greeting cards we’d sent her to “discover” again and again.
We left a journal on her table so anyone who came or went could leave me notes.
We bought a phone with big buttons that had pictures of the people in her life so she could press the picture to make a
call.
We left her explicit reminders on a white board, including the fact we had visited.
We left her lots of notes.
She had trouble drinking, but by using a juice box with a straw we could push the liquid up into her mouth.
Music was always soothing for mom. Her “friend” sang, danced or listened to music with her.
I learned to take care of myself and ask for help. I learned to tell people what I needed or what they could do since most
who want to help don’t really know how. “Do my laundry” - that will help my mom so I can be there with her.
Relax and bend the truth. The truth is less important than helping your parent relax, have fun and stay out of trouble.
Ask for Help - from family, agencies…
Many times there is one person in the family, either because of proximity or personality, who ends up with the bulk of the
caregiving. It’s exhausting and if you’re not careful, can build resentment and divisiveness within the family. Be open and
honest with other family members.
Suggested Resources
If you are the “call everyone/research online/get answers” type, go for it. If you’re not, find someone who is.
National Parkinson Foundation: www.parkinson.org Other Sites for Support
Alzheimer’s Association: www.alz.org www.agingcare.com
ALS Association: www.alsa.org www.aplaceformom.com
Eldercare Locator: www.eldercare.gov www.hometr.net
Recommend Reading: Being Mortal: Medicine and What Matters in the End, by Atul Gawande
Money - Be Proactive & Smart
This may be an important time to get professional assistance to help you negotiate. Lexington Wealth can help you find a
geriatric care manager, an expert to help with transitions to new housing, advice on Medicare, Medicaid and Social Security.
Perhaps the most important thing you can do for yourself is to approach this new experience in your life with a flexible
mindset. You want to come out the other side with your good memories intact, your relationship deeper, and the
knowledge that you did the best you could given all that was going on in your life. It isn’t easy, but it is bearable and can be
life affirming.
“Connecting the Head and the Heart of Wealth Management”