Alzheimer's: A Daughter's Perspective Interview with Judith Ingalsbe

Posted by Donna Mae Scheib on September 28, 2016

Alzheimer’s: A Daughter’s Perspective
Interview with Judith Ingalsbe

Alzheimer’s. Maybe you and your family are already familiar with this disease, or you’re worried about becoming all too familiar with it. And with good cause. Alzheimer’s is one of the nation’s costliest and devastating diseases. It’s the sixth leading cause of death in the US and the fifth leading cause of death for those age 65+.

Alzheimer’s attacks the nerve cells in the brain, resulting in cell death. This disintegration causes wide-spread damage throughout the brain and results in a decline of a variety of brain functions.

Throughout our nation and across the world is an ever-growing support and advocacy community to educate families and provide the support and resources needed throughout a loved one’s illness. Many are those who have walked through and are still walking through the disease with their loved ones.

Judith Ingalsbe is one member of that advocacy community.

Ingalsbe is the author of “Stone Benches: Understanding the Invisible Footprints of Dementia,” which was recently nominated for the 2016 NBA National Book Awards. Her grandmother, mother, and veteran father were all diagnosed with Alzheimer’s disease. She recently embarked on a trip to Washington DC to educate Congress on the needs of those living with Alzheimer’s disease, their caregivers, and family members. 

“This disease demands our attention,” Ingalsbe said. “We need answers we simply do not have and we need them quickly. It is the time we call in reinforcements, ask our legislators for help, and get our loved ones fitted with life vests. This storm will not calm until we do.”

Senior Living Link had a chance to talk with Ingalsbe about her experience with parents afflicted by Alzheimer’s.

Senior Living Link: When did you first suspect something was amiss with your parents?

Judith Ingalsbe: I first noticed something was amiss with my mom when her personality began to change. My sweet, caring mom became suspicious and was often angry over things she perceived, which in reality had not occurred. During this time, my father had moments of forgetfulness, but I wrote them off as stress in dealing with Mom’s challenges. It wasn’t until much later that I became aware of serious changes in his judgment and reasoning skills.

SLL: As you began walking through Alzheimer's with your family, what was the hardest aspect? What was the most unexpected aspect?

JI: Alzheimer’s disease dramatically impacts families emotionally, physically, and financially. The challenges are immense, but I have to say the loss of our loved one is the hardest. The person we know and love is inexplicably changed forever. We can no longer relate to them as we once did and must learn to form a relationship anew with this familiar looking person who now reacts to us very differently. The most unexpected aspect was when my mom died. I became acutely aware of the grief I had experienced years before when I lost the mom I knew and loved. However, I found myself grieving all over again, this time for the very different human being I had grown to love. Not the mom who nurtured and raised me, but this precious woman who did not know my name, the one I took care of.

SLL: When did you know you had found the right assisted living for your parents?

JI: My parents did not reside in an assisted living. Typically, assisted living facilities
are not equipped for memory care patients, who need increased security and assistance. I think finding a facility that is right for our loved ones is one of our greatest challenges as families. I utilized independent caregivers for my parents early on; they were with us for years and became like family. Dad now needs more assistance than one person alone can provide, so I moved
him to a memory care facility a little over a year ago. No facility is perfect, but I appreciate the fact that his works to train their staff on the unique needs of Alzheimer’s patients. Our families at memory care have become very close, which is an invaluable support.

SLL: When did you know you would write a book about your experiences? What inspired
you?

JI: I have been asked to speak to various groups over the years. Last October, I was sharing my family’s journey with a local support group and noticed there was not a dry eye in the room. It affected me deeply, to realize how painful this reality is, yet I’ve walked through it and am still standing. I knew at that moment I had to do more than simply make it through another day. It was undeniable that my experiences, insight, as well as mistakes, were to be shared in a more powerful way. There are millions of family members who need encouragement to make it through another day. I am humbled and honored to be a vessel for the understanding and compassion God has for those walking this most difficult road.

SLL: With your family members and other Alzheimer's patients, what continually surprises you about what they have to offer even when afflicted with this disease?

JI: Alzheimer’s patients are some of the most forgiving folks you will ever meet. They may be upset one moment, yet memories of infractions are fleeting. They are loving, comical, generous, and affectionate human beings who live without inhibitions or regret. My favorite place for lunch is at Memory Care with my dad and his buddies. They are absolutely captivating and so much fun to be with! 

SLL: What advice would you give family members looking for a memory care unit for their loved ones?

JI: Besides the obvious financial and safety considerations, I suggest looking for facilities with smaller living communities and fewer residents. Those with Alzheimer’s are easily overwhelmed in crowds and confused with rambling hallways. The more compact a facility, the better. Also look for a home-like atmosphere, safe outdoor courtyards, and comfortable common areas. In addition to a tour, drop by during mealtime to experience the atmosphere. Ask for a copy of the menu, activity schedule, and visit their support group. It’s also important to note extra expenses which can quickly add up. Some facilities have a “menu” and charge more for those who are prone to roaming, need extra help in the dining room, or require more than the standard bath schedule.

SLL: What tips would you offer for the family to stay engaged with their loved one once
they've moved in?

JI: Never stop visiting! Join them for lunch and get to know other residents and their
families. Have a nail painting party, bake cookies, plant some flowers, birdwatch. This is your loved one’s home; it’s important to treat it as a special place, not someplace we wouldn’t want to be. Also, resist the temptation to bring them to your house for visits. It’s important they feel settled in their new home. Some of my favorite moments with my dad are walks ending in quiet moments sitting on a bench in the courtyard or at the end of the hall where we can simply
enjoy being in the presence of each other. I call these “Stone Bench Moments” where we discover moments of connection absent of words or an agenda.

SLL: What is one thing you wish someone would've told you at the beginning of this
journey?

JI: I wish someone would have shown me the beauty in joining the reality of those affected with this disease. I wasted too much time attempting to convince mom she went to the beauty shop yesterday, not last week. Too many wasted breaths attempting to convince my father of something he no longer had the reasoning skills to understand. When we learn to leave our expectations at the door and simply join their reality, conflict blissfully disappears. I now check train schedules for residents who are eager to go home, allow a resident to take my purse because she believes it is hers, and help my dad examine empty rooms to make sure they are ready to rent. I even bought the memory care from one of the residents who believed she owned it. I don’t know why we insist on correcting every inaccurate detail; their reality is much more fun than ours anyway!

SLL: What advice would you offer to healthcare workers when interacting with the family?

JI: I often remind those working with family members to remember we are grieving. This is a frustrating, extended period of loss and often we are met with unimaginable challenges. Family members look to caregivers for support. We must form a team in order to give those affected the best possible quality of life. 

Luckily, there are many ways to get involved and provide that team support. From registering with research studies to participating in an advocacy walk, there is something for everyone. 

“Caring for someone with any form of dementia is a demanding, full-time job. Families tend to be isolated and often overwhelmed. However, it is imperative we get involved if a cure is to be found,” Ingalsbe said.

“Stone Benches: Understanding the Invisible Footprints of Dementia,” published by Symphony Publishing, was released on March 23, 2016. For more information on availability, go to http://www.StoneBenchesJourney.com.

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