Finding Home Again: Transitioning to Memory Care

Finding Home Again: Transitioning to Memory Care

by | | Alzheimer's, Cognitive Decline

“Advisors, consultants, care managers, counselors, assistants, educators, guides,” we Aging Life Care specialists go by many names, including “nameless.” “Oh, I never knew you kind of people existed.” However we are referenced, our goal remains constant; guiding and supporting families as they journey through life’s transitions.

These transitions are as varied as the families we help. Each life passage brings its own challenges. This care manager recently assisted a family as they transitioned their father, Jim, from assisted living to a memory unit. The reasons for this move were varied: the caregivers outlived their helpfulness, an exhausted spouse, a son who questioned if he was doing right by his father and a husband, father, and grandfather, whose dementia was out pacing the stimulation, socialization and specialized attention that a memory unit could provide.

The transition came with questioning, requestioning and guilt. Thoughts and feelings that are frequently precursors to such a move. This care manager’s guidance to the family, beyond supporting their decision, was to validate what they were feeling. It was a life changing transition that was about to take place.

I recommended that they wait a day or two before the move to tell Jim. The reason for the for the relocation did not have to be a truthful one, “fiblets” as we call them. White lies that have as their goal the safety of a loved one and maintaining or improving the quality of Jim’s life. I also reminded them that change is challenging, but such a modification could potentially improve the quality of Jim’s life, reduce his wife’s burnout and restore a sense of all around balance to the family.

But lest I be dubbed a care manager wearing rose colored glasses, it was my responsibility to also prepare the family for the challenges ahead. I helped them to recognize that Jim’s environment and routine were about to be disrupted. Dementia behaviors could temporarily worsen. From the beginning, we worked together to help the memory staff understand Jim’s baseline. His previous routine, activities and foods he enjoyed, actions that could trigger unwanted behaviors and interventions that would help to soothe him. While memory units vary as to whether family members can visit in the first few weeks, this residence had no restrictions. Primary in my mind was Jim’s wife. She continued to reside in the same building in another section that housed both independent and assisted living residents.

Sara was Jim’s wife of almost sixty years. She faced her own unique anxiety about her husband’s move. She was afraid to visit him. In our day to day lives, logic dictates our expected way of thinking. But such thinking loses its centrality when it comes to people experiencing dementia. “He will be angry with me for moving him.” “He will not recognize me.” “What if he wants to go home?” I helped Sara learn about her husband’s reality. It was no longer the same as her’s. What it consisted of we learned together as either her son or I accompanied her on those early visits. Jim’s world continued to have Sara by his side no matter where she was. Sixty plus years together was not taking Sara away.

John Kabat Zinn, a pioneer in the practice of mindfulness wrote: “You can’t stop the waves, but you can learn to surf.” And so, it has been for this family, they are learning to surf. Sara now visits Jim daily, unaccompanied. Their son sings with his father at music concerts, and Jim, a lifelong birder, proudly identifies the goldfinch print that decorates a wall of the residence, often hand in hand with Sara.

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 | | 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 | | 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.

End of Life Decisions: A Broken Promise

End of Life Decisions: A Broken Promise

by | | Caregiving, Cognitive Decline, Dementia, End of Life, Family, geriatric care management, Health & Wellness

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

by | | Caregiving, Cognitive Decline, Dementia, geriatric care management, Health & Wellness, Medical, Westchester

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

by | | Alzheimer's, Caregiving, Cognitive Decline, Dementia, Family, geriatric care management, Westchester

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.