Is it Walking or Wandering? Ten Pointers to Put Caregivers in the Right Direction

Is it Walking or Wandering? Ten Pointers to Put Caregivers in the Right Direction

One of the most frequently asked questions of this eldercare consultant is: What is an appropriate residence for my family member? To be effective in this role, it not only entails a thorough assessment of the adult senior but also refresher visits to long standing residences and visiting those residences that have opened since Covid.

A “mix and mingle” recently brought me to Briarcliff, New York to a new residence that is exclusively devoted to residents with dementia. An impressive feature was the enclosed outdoor space where residents can “wander, “as my guide pointed out, or, as I would like to think, where residents can “walk.” So, what’s the difference?

Wandering implies that the person’s actions are aimless or purposeless, putting them in danger to themselves. Stepping outside on a stormy day, making one’s way over to a busy intersection or leaving the house in the dark of night. But in other situations that wandering is walking. It has a purpose; since it is difficult for the person to communicate feelings or needs verbally, it is up to caregivers, sometimes with the assistance of a professional or organizations such as the Alzheimer’s Association to figure out the reason for a loved one’s walking. While the explanations can be plentiful, the Ohio Council for Cognitive Health provides some direction as to why a person with dementia is walking continuously:

Pain: the person may be in pain and not able to express the pain.

Medication: the person may be experiencing medication side-effects that cause agitation.

Noise: the room may be too noisy or overstimulating

Boredom: If the person is bored, he or she may walk as something to do.

Toilet: The person may be searching for the bathroom and is not able to find it.

Lost item: The person may be searching for something that he or she believes is lost. This item may or may not exist.

Hunger: The person may be hungry and not realize that he or she needs to eat.

Confusion: The person may not recognize their own home and may want to go somewhere that they think is home.

Habits: The person may be trying to continue a long-standing habit such as going to work.

Sleep disruption: Restlessness or changing sleep patterns can lead to confusion between night and day. A person may wake early, become disoriented and think it is daytime and leave the house for work or a walk.

And this eldercare consultant’s suggestion, it comes from my favorite tee shirt which shows a pair of Birkenstock sandals. Beneath the sandals is the quote: “All who wander are not lost.” I would like to adjust that quote a bit and say all who walk find tranquility in the moment. The assurance of putting one foot in front of the other in uncertain times.

As Rare as Venus Passing Across the Face of the Sun

As Rare as Venus Passing Across the Face of the Sun

On June 5th and 6th 2012, the world was able to witness planet Venus passing across the face of the sun for about 6 hours causing a small black dot to appear on the sun’s surface. This event will not reoccur until 2117. I didn’t see the passing in 2012, and I can confidently say I will not see it in 2117. Yet in my world of being a geriatric consultant, I did see something equally as extraordinary. A senior adult called this Aging Life Care® Consultant to inquire about my services and how I might, one day, help her. A senior adult inquiring about help for herself, as rare as Venus passing across the sun.

This call was a first for me. I was accustomed to counseling adult children in such matters as dementia, in-home and residential alternatives, and overcoming parental resistance. I asked Isabel (not her real name) what prompted her call. She explained that her adult children lived at a distance, and she wanted to prepare for whatever the future may hold. She was 84. There was nothing compelling going on at the time, so I described how I could potentially be of help. A year later, I heard back from Isabel. She asked that I come to her home so that she could meet me and vice versa. Two years passed before I heard from her again, this time she asked if I could help her find a companion for a couple of days a week. Because I had done what we call in the trade, “a meet and greet,” I had a good idea of what type of companion would work best with her. Luckily, she was available, and the match was a successful one.

The passage of time brought conditions that required more care and eventually the need for a fulltime companion. None of this lessened Isabel’s astuteness to her needs, especially her hearing loss which was impacting on the activities she enjoyed in the community and with friends and families.  I am accustomed to seniors finding less effective and more irritating hearing solutions telling others: “To just speak louder.” Not Isabel. In keeping with this proactive senior, she headed to an audiologist to be fitted for hearing aids. They have helped, but even with regular adjustments, not to the degree she hoped.

With her mood now wavering and her age passing 88, we spoke about how the diverse world she was accustomed to was receding. Her family suggested consulting with her doctor about an anti-depressant which Isabel thought might be helpful (Again, I am more familiar with the response: “who needs that, I’m not crazy”). Not surprisingly, Isabel also asked me to recommend books about getting older. I mean getting older…. the real McCoy. Step aside Nora Ephron. The vicissitudes of accepting that you have less days on this earth than more. And with some research I shared three books with Isabel that would support what she was feeling.

  • Still Here: Embracing Aging, Changing, and Dying 
  • Growing Old: Notes on Aging with Something Like Grace
  • Helping Yourself Grow Old: Things I Said to Myself When I Was Almost Ninety

 Currently, Isabel and I chat on a regularly irregular basis. Sometimes short because a Zoom is about to start, other times longer. She leads me. I always like to know what she is reading, and we exchange names of books we have enjoyed. Truth be told, some of her nonfiction book recommendations are beyond my comprehension.

As an eldercare consultant I have always felt in the giving, there is receiving. It is so much the case with Isabel. And when the opportunity presents itself, I always remind her that she is my role model. I am not waiting for Venus to pass across the sun.

The Ten Commandments: Strategies for Communication

The Ten Commandments: Strategies for Communication

Before you turn away from this blog given its title, let me assure you I am not offering religious guidance. Instead, I want to offer ten communication tips if you are caring for someone with dementia, Alzheimer’s Disease or otherwise. I take no credit for these suggestions, but because I feel each is so relevant, I want to share them with you. They were written in 1996 by Jo Huey, of the Alzheimer’s Caregiver Institute. These approaches were based on her thirty-five years as a caregiver.

  1. Never Argue- instead, agree: What a person with dementia is saying is what they think to be true.
  2. Never Reason- instead divert: Reasoning is a futile effort, because the part of the person’s brain that controls logical thinking has been hindered.
  3. Never Shame- instead, distract: Change the subject as quickly as possible, the person with dementia may not realize what they are saying or doing could be viewed as inappropriate.
  4. Never Lecture- instead reassure: Imagine how much better it would feel if you just smiled and reassured someone with dementia: “I did the same thing yesterday.”
  5. Never say “Remember-” instead, reminisce: A person with Alzheimer’s Disease, cannot remember. So, if you were looking thru a photo album, say “this looks like Phil and Sue when they went camping at Lake George.” The person may use this cue to connect, otherwise, treat the album as just that, photos of people enjoying themselves.
  6. Never say “I told you”-instead, repeat/regroup: As the caregiver, you are the priority. Take a step back, start the conversation the next day. The person with dementia will pick up on your stress, causing the conversation to be frustrating at both ends.
  7. Never say, “You can’t,” instead do what they can: Such an approach is another reminder to a loved one that they are losing their independence. As the caregiver, you are tasked with the responsibility to search for the things that a person with Alzheimer’s can do successfully. This is what we call a “strength based approach.”
  8. Never command/demand, instead ask/model: The adage that actions speak louder than words, is equally relevant to a person with Alzheimer’s Disease. Because your loved one may not pick up on your verbal sense of urgency, it is better to model behavior. For example, if it is meal time sit across from the person and take a few bites of food. They are more likely to mimic your actions than heed your words.
  9. Never Condescend, Instead Encourage/Include: When caring for someone with dementia we may tend to exclude them from conversations regarding their health and overall wellbeing as if they’re not there. Not only can this hurt your loved one’s feelings, but it can result in aggression toward the provider of care. Rather, stand or sit next to them and allow them to be a clear part of the conversation.
  10. Never force, instead reinforce: No one likes to be told they’re doing something wrong. A better approach is to start by telling them what they’re doing well. Then, gently approach what they could be doing better.

In 1996, the same year that Jo Huey compiled these strategies, Motorola came out with their Startac phone. It was the first flip phone. It offered a vibrate alert as an alternative to a ringtone. The phone was so popular that Motorola sold 60 million of these phones at $1,000 a clip. How cell phones have evolved over 26 years. But the advice offered by Jo Huey is as relevant today as it was 26 years ago. I hope her suggestions can offer guidance as you face the challenges that can accompany a dementia diagnosis.

Farewell Dear Voice

Farewell Dear Voice

In the early days of COVID, senior centers and adult day programs shuttered their doors abruptly. Nearby family members visited cautiously while geographically separated family members remained just that. Caregivers weighed risking their health to meet the daily needs of the elders they were assisting.

For this eldercare consultant, it was a telephone, and technology that were my methods of communicating with clients and their families. As spring and summer arrived, outdoor visits served as a means for re-connection.

And while the seasons gave me the opportunity to re-unite with current clients and meet new clients, there still existed a segment of the population that remained isolated. It was during this time that I received an email from a non-profit organization asking for volunteers to reach out to homebound seniors to “chat” as they called it, just chat. Within weeks, I was asked to call Rosemarie T. in Brooklyn, no last name given.

While less than an hour from New Rochelle, I only knew Brooklyn via the tales my husband had shared of his youth growing up there and my occasional visits to a great aunt who lived, well, somewhere in the boro. As for Rosemarie, I was not calling in my familiar role as a care consultant, but just plain “Micki,” as I am informally known. I was instructed to keep the weekly conversation at no more than thirty minutes and let Rosemarie take the lead.

And so, began the year and a half relationship between, Rosemarie T. and Micki Z. It didn’t take much encouragement to learn about her early life in Spain and then Portugal. Oh, how she longed to be back in happier and healthier times. She was frustrated and depressed by the infirmities that were besetting her. Talk of death was a familiar part of our conversations. But no matter how great her suffering, before we said our good-byes, Rosemarie would tell me how much she loved me and made me promise that I would take care of myself. Each time I assured I would.
Occasionally our weekly calls were interrupted by Rosemarie’s hospitalizations. With each return home, Rosemarie sounded weaker. Talk of death now became an impatient wish to die.

In December of 2021, Rosemarie got her wish. I was notified by the “chat” representative of her passing. They told me how much my calls meant to Rosemarie. But truth be known, the voice of this faceless woman had also become very endearing to me. Thank-you and farewell Rosemarie T. from Brooklyn.

A Good Life, a Good Obituary

A Good Life, a Good Obituary

I like to read obituaries, in death, as in life, I find it interesting to learn about people. And so, while returning to New Rochelle from Upstate New York, I read the obituary for Donald Lincoln (his middle named bestowed upon him by his paternal grandfather in honor of our 16th President) Burgess. He died on August 25, 2021, at age 102 years in Pittsfield, Massachusetts.

His family referred to him as “a scholar, musician, World War II veteran, business executive, gardener, friend and lover of the sea.” This care manager believes this description comes with certain characteristics which make for a good life. Among them, being a good person, courageous when the occasion calls, kind, helpful, loyal, trustworthy, selfless, generous and purposeful.

For Mr. Burgess courage and loyalty characterized his devotion to country. During World War II, on the U.S.S. Brough he made twenty-six North Atlantic Ocean crossings protecting convoys of troops and supplies. He continued another 18 years in the naval reserve, to his resignation at rank commander.

After forty-three years in the printing business where he worked his way up from office manager to president of Sutin-Burgess Printing Associates he retired. A life of purpose became most apparent. During this time and thru retirement, he was a gardener, taking pride in a backyard full of plantings he nurtured for many years. His generosity to community was highlighted by his love of music and using his piano skills to serve as the organist for his church. Perhaps most significantly he was the care-giver for Kathryn, his wife of sixty-four years. While I am not a fan of “single-handed” caregiving, the term used in the obituary, I can imagine his devotion to his wife, trumped all offers made to help him. He “surrendered his role to professional care-givers only as a last resort.”

And then came one of the hardest tasks older adults face, “letting go,” as his obituary read, of his home of over a half century. He entered Payn House in Chatham, New York. Its website describes it as “a sensible, affordable option for the independent retired person.” Here, Mr. Burgess drew on his strengths from times past. While adjusting to a new home and befriending residents, “he maintained ties with far-flung family” and dwindling friends. “Doug, found among new friends and activities respite from loss, and opportunities to give of his time and abilities.”

Besides his children, Mr. Burgess left behind ten grandchildren and nine great-grandchildren. Judging from his well written obituary, I think his family recognized all the pieces that made for a life well lived. Quoting the author, futurist and pastor Erwin McManus, “a life well lived is the most exquisite work of art.” Douglas Lincoln Burgess, you were a masterpiece.