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

by | May 23, 2023 | Aging in Place, Alzheimer's, Caregiving, Cognitive Decline, Dementia, Family, geriatric care management, Nursing Home, Post Acute Care, Westchester

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.

The Ten Commandments: Strategies for Communication

The Ten Commandments: Strategies for Communication

by | Aug 19, 2022 | Alzheimer's, Caregiving, Cognitive Decline, Communication, Connected, Dementia, Westchester

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.

A Good Life, a Good Obituary

A Good Life, a Good Obituary

by | Nov 18, 2021 | Aging in Place, Caregiving, Connected, End of Life, Family, Westchester

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.

Resistance and Seniors: A Care Manager’s Tale

Resistance and Seniors: A Care Manager’s Tale

by | Jul 15, 2021 | Aging in Place, Caregiving, Covid-19, Dementia, Family, Resistance, Westchester

Like in the childhood game, “telephone,” the first call came from the neighbor across the street, who called the son in Texas who, in turn, called his sister in New Mexico, who, in turn, called me, the eldercare consultant in New Rochelle.

It seems the neighbor across the street observed their eighty-two-year-old mother taking her garbage to the curb. How, she inquired of the son, could he and his sister be so neglectful, not her words exactly, it was more the tone of her voice. I imagine, the neighbor was trying to be helpful. Given the adult children’s geographic distance, perhaps she thought they were not aware of what was taking place during these thrice weekly jaunts to the curb. The truth be known, the son and daughter had been trying, unsuccessfully, for over a year to persuade their mother to just give a companion a try. Just a try.

Despite hints of early dementia, the mother was readily able to reiterate to her children all the reasons for not wanting anyone coming to her house. To start, she was not having difficulty managing on her own. Regarding her shopping needs, what she was not able to pick up in the supermarket, there was a COVID volunteer from her local church she could count on. A companion would interfere with her privacy. Hinging on that, she had her sentimental belongings throughout the house, and she was certain they would disappear within a week of the companion’s arrival. And so, it was with this background that a daughter, undaunted by her mother’s past refusals, called this eldercare consultant, confident that what she and her brother were unable to do, I could accomplish.

With the weight of the adult children and the neighbor accompanying me to her house, I met with the mother. She was welcoming and showed me around her home. I was slightly suspicious. Tours usually come after a client gets to know me. Perhaps the unsolicited tour was to make a point about her capabilities or maybe she was just being hospitable. With the sightseeing out of the way, we got down to the reason for my visit. Mom was well rehearsed. She conveyed to me all the same reasons she had shared with her children.

This type of resistance is not unusual, as an eldercare consultant I have come across it repeatedly. The mother recognized that accepting help brings with it relinquishing privacy and adjusting to a new routine. She saw it as a sign of weakness to acquiesce. What she was indifferent to, was a little bit of help could go a long way to ensuring her continued safety and longevity in her home.

While empathizing with each of the mother’s reasons for refusing help, I used one of my tried-and-true strategies. “Give it a try, just for a few weeks,” Not a budge. “How about if you think about it?” I asked. Affirmative. And with that I said I would give her a call in a few weeks.

“I’m happy you didn’t forget about me,” she said two weeks later. In the same breath, she said she would be in touch with me when the time was right. Will the time ever be right I thought to myself? Or will the next call be from the daughter, all her mother’s excuses banished, replaced with an urgent request for help.

An Aging Life Care Specialist Goes Underground

An Aging Life Care Specialist Goes Underground

by | Mar 24, 2021 | Aging in Place, Alzheimer's, Caregiving, geriatric care management, Health & Wellness, Westchester

We Aging Life Care specialists ask a lot of questions. Most pertain to the medical, social, emotional and the home environment. Now we are going even deeper in the home and descending to the basement.

Why the basement you ask? Because in some homes, across all fifty states, evil may be leaking from the ground. It’s colorless, odorless, invisible and can only be detected by testing. This mysterious element is called radon. It is a radioactive gas that comes from the decay of uranium found in the soil one’s house is built on. It typically moves up through the foundation to the air and enters one’s home through cracks, walls, construction joints or gaps in the foundation around pipes. A home traps radon inside, where it can build up. The ventilation and the air flow patterns in a house will affect how much radon will be pulled into different areas of the house. The age of the home, does not make a difference. According to the United States Environmental Protection Agency radon is the leading cause of lung cancer in non-smokers in the United States. The higher the radon level in a house, and the longer the exposure period, the greater the risk to the occupants.

Apologies for the scare, but the good news is that radon levels can be measured and if remediation is necessary, there are solutions. The place to start is with A Citizen’s Guide to Radon, published by the EPA. In a nutshell, the average radon concentration for homes in the United States is 1.3. It is when the radon levels, goes beyond 2 picoCuries per liter (the EPA will explain the jargon) that thought should be given to resolving the potential problem. While you can hire a professional tester to determine the radon level, you can easily start with buying a do it yourself test kit available in hardware stores or online. You can also call: 1-800-SOS-RADON (part of the EPA). This testing method consists of a small charcoal canister. The radon in the air is absorbed on the charcoal and the decay products can then be measured by a laboratory. The laboratory cost is usually incorporated in the cost of the canister. It is suggested by the New York State Department of Health, that two separate charcoal canister measurements be used before deciding to correct the situation. If mitigation is necessary the most common method is to have a vent pipe system and fan installed, which pulls radon from beneath the house and vents it to the outside. More information is available from the EPA at 1-800-55RADON.

So, why this article on radon? This past January was officially declared Radon Awareness month. But beyond this, often, as Aging Life Care specialists, we turn to our personal experiences when they can enhance the lives of those we help. Some years ago, with great excitement we closed on our dream weekend home in the woods. Surrounded by nature, deer leaping thru the woods beyond, a welcoming lake for rowing and swimming, what could be better? The answer would have been a tent for camping had we not taken care of the high radon level that was noted in the inspection report. As Aging Life Care specialists, it is our goal to keep our clients safe at home. Checking for radon is another step to ensure their safety.

Making Your Bed and Other Strategies for Lessening Caregiver Stress

Making Your Bed and Other Strategies for Lessening Caregiver Stress

by | Dec 1, 2020 | Aging in Place, Caregiving, Covid-19, Family, Health & Wellness, Social Distancing

Covid-19 has thrust many of us into new or expanding caregiving roles. Medication management, arranging doctors’ appointments virtual and otherwise, making sure a senior is eating more than tea and crackers, and doing our best to ensure our elders feel connected in a world where quarantine and isolation have been the keywords of these last nine months.

Alongside these caregiving responsibilities, we have family and work commitments and, yes, an obligation to keep ourselves healthy. While the initial reports are promising for vaccines, we are still awaiting that GPS to give us clear and consistent direction.  While waiting for those directions to appear, I would like to share five strategies to help you, the caregiver, lessen the stress that accompanies the increased role you may be assuming:

  • Accept the feelings that come with this time. Your anxiety doesn’t have to control you when everything around you feels so uncertain. Focus on what you can control: you, your thoughts, your actions. Speak with those friends who offer you reassurance and comfort and let the other incoming calls go to voice mail, especially when those unsolicited advice-givers are on the other end.
  • Have an emergency contingency plan. Try to organize what the National Alliance of Caregiving calls a “care squad” or simply a caring support team that can help in the care of a loved one in the event you become ill. Identify trusted people who can provide help such as bringing over groceries, picking up medications, offering technical guidance for virtual doctors’ appointments, and making those all-important outreach calls to a parent.
  • Practice self-talk. Remind yourself that you have coped with difficult situations before and think back to how you handled them. Re-discover that strength and confidence. Extend to yourself the empathy that you would impart to a friend in need.
  • Stay in the present, ask yourself: “What do I have to deal with right now?” “What can I control right now?” Think about all the times you worried about the future and the outcome was not as dismal as you imagined it would be.
  • Stick to a routine. As Gretchen Rubin speaks of in her book The Happiness Project, start your day by making your bed. You may say why do that, I’m just going to unmake it at night? Making your bed sets the tone for the day, it takes little effort and goes a long way in making order out of chaos. Holding on to a routine brings a sense of normalcy during very abnormal times.

Finally, some years ago at a tag sale, I picked up a small 4X4 framed piece of embroidered needlework, never knowing how relevant it would be for these times. It reads: “Long is Not Forever.”  I hope you will hold on to those words as I do.