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.

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.

Resistance and Seniors: A Care Manager’s Tale

Resistance and Seniors: A Care Manager’s Tale

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.

End of Life Decisions: A Broken Promise

End of Life Decisions: A Broken Promise

As a geriatric care manager, in the early part of my journey with senior adults and their families, I ask about advanced directives: a living will, power of attorney and a health care proxy. There will be one of three responses: 1. No, my mother refuses to talk about these documents. 2. We are planning to go to an attorney or 3. Yes, there has been a designated POA and health care agent.

If you fall into the number three category, it may be with relief that you have these documents in place. As the health care agent, you have had the “discussion” and understand the wishes of the person you will represent. You are certain that you can march forward through the complexities of end of life decision making. Yet for some, when the time arrives, that confidence becomes clouded by doubt. It’s not unusual. Such was the case for Lorraine, Anne’s daughter.

Anne, my client of nearly five years, confided in me with weekly regularity that she wanted to die. She knew she was losing her memory and was humiliated by what was happening. Other indignities followed. An extremely anxious person, the only comfort she took was that Lorraine knew her wishes and would do right by her.

Lorraine did not visit her mother with any frequency despite living just over the Westchester County border in Connecticut, a thirty-minute trip. Watching these meager visits and equally few telephone calls, I was sure that when Anne’s doctor called Lorraine to suggest hospice care, she would readily agree. To my surprise, Lorraine would not acquiesce. She acknowledged to me that she knew what she was supposed to do as her mother’s agent. The problem was she could not bring herself to make those final decisions about stopping advanced medical treatment, nutrition, and hydration. “Who am I to make those decisions?” she said to me. I wondered, was it unspoken hope or unease?

Anne lingered with time becoming the final decision-maker. In the days before Anne’s death, I said to Lorraine, with no suggestion of judgment, that she would carry with her whatever decision she made. I recognized that those who generously take on the role of health care agent do so with a full heart. But sometimes, good intentions can be superseded by last-minute questioning. Doubt fogs the road we thought we could readily take.

ADL’s and IADL’s: The Alphabet of Assessing an Adult Senior

ADL’s and IADL’s: The Alphabet of Assessing an Adult Senior

Where does this geriatric care manager start when a family is eager to help an aging parent?  The answer is an assessment. It is a bevy of questions that are asked to determine how best to approach the issues at hand. Some of the questions I ask are unique to the situation, but others are basic: Activities of Daily Living aka ADL’s and Instrumental Activities of Daily Living aka IADL.

Activities of Daily Living tell about an adult senior’s ability for self-care. Is a parent able to feed herself? This does not include preparing a meal or even chewing or swallowing the food, it is bringing food to one’s mouth. Dress and undressing without assistance, from underwear to shirt and tie.  Toileting: is the older adult able to ambulate independently or with a walker or wheelchair to the toilet?  Transferring:  can the person independently move from one place to another, from a bed to a chair?  Personal hygiene: can an older person bathe themselves, brush their hair, their teeth?

While the Activities of daily living provide a gauge as to whether an adult can live safely on their own, the Instrumental Activities of Daily Living, are also of important consideration. IADL’s include the ability to manage money this would include paying bills in a timely manner. The ability to go grocery shopping or to use a food delivery service. Getting to and from doctors’ appointments.  Household chores including doing laundry, hand washed or otherwise, and selective house cleaning.

Beyond these two significant areas, an assessment will look at the finances of the older adult to determine if there can be alternate living arrangements or home care paid for privately or thru an entitlement program. Knowing about family support within the geographic area in which the older adult resides is important. The role that can be played by adult children living at a distance. The physical, emotional and cognitive conditions the senior may be confronting, and the ability to take the corresponding medications responsibly. The “story” of the senior’s life. Personality traits, occupation, significant events that may influence how best to approach a parent. Who might it be in the family or beyond the family that may have the greatest chance of influencing the senior?

By combining responses to ADL’s, IADL’s, and the topics discussed above, this geriatric care manager can help families take the first step to bringing a parent to a healthier and safer way of living.  To this end, health care directives and a power of attorney should be in place to ensure that next steps can be taken without complications.

Nurturing the Nurturer: The Use of Doll Therapy for Older Adults

Nurturing the Nurturer: The Use of Doll Therapy for Older Adults

As Aging Life Care Professionals®, when we are asked to assist with securing placement in a nursing home, there are many questions we ask beyond the physical and cognitive conditions that are prompting the move. Primary among those questions is: what was mom or dad’s occupation? Those families who have parents in their mid-eighties and beyond often reply by giving dad’s occupation and the fact that mom was a homemaker.

Remembrances of lifelong professions can be retained long after actual employment or the responsibilities of raising a family have ceased.  Take Gene, a retired fireman who had been diagnosed with dementia.  On the day he arrived at the nursing home, being the conscientious firefighter he once was, he spotted a fire extinguisher and was headed straight to his job. Fortunately, his daughter positioned herself to block his access.

For mothers and wives of this era, the role of family nurturer is often rooted in the person. This is not to say that fathers have not played prominent roles, but for mothers or other women that have been employed in caregiving roles, it is not a job that finished at five. In later years, should there be cognitive loss accompanied by agitation we, as Aging Life Care Professionals, look to guide the family in ways to lessen the anxiety their loved one may be experiencing. Nonpharmacological approaches are preferable. One such method is doll therapy.

Doll therapy is just what it says. It is providing a person with a doll, that she/he can hold, cuddle, talk to, even dress and undress.  The latter helping with finger dexterity and hand-eye coordination. The doll can give a person a sense of comfort and purpose with the goal being redirecting the anxiety and bringing a parent to a sense of calm and contentment. Beyond this, a doll can be a starting point for reminiscence, asking a parent to recall their days as a new parent, bearing in mind that it is the long-term memory that is most vivid.

Research studies have shown both increased happiness and increased social interaction using doll therapy. But doll therapy is not without controversy. Some feel the dignity of a parent is compromised using a doll.  Other concerns are that dolls are demeaning and infantilize older adults. A passerby may look at a person with a doll and remark that the senior looks “cute” holding a doll. Not the way a relative wants their spouse or parent to be perceived.

As Aging Life Care Professionals, our approach is a person-centered one. To each client, we bring a toolbox of suggestions, techniques and resources. While the use of doll therapy is one such example, we customize the guidance, recognizing the unique needs of each client while working together with families to ensure practical and realistic outcomes.