Generosity – The Heart of Caregiving

Dementia
Written By Lyle Weinstein

Caregiving is a path that many others have taken in the past, many are taking in the present, and many more will take in the future. While there is no magic answer to solve all the issues you will encounter on your caregiving journey, the collective experience of caregivers constitutes a treasury of practical advice, and other caregivers themselves constitute a treasury of emotional support.

The truth is that life will not return to what it was before the dementia appeared. Accepting that fact allows you to engage your loved one’s needs where they actually are, rather than where you hope they would be. In doing so, you can avoid many of the difficulties that arise when, due to their dementia, your perceptions and understandings conflict with theirs.

The work I have done with and for caregivers is the direct result of my father’s 14-year journey with dementia. My efforts remain focused on helping caregivers safely support their loved ones with dignity and warmth. They are distilled in The Montessori Alzheimer’s Project. It addresses issues that arise in the different environments you and your loved ones share: the physical environment, the emotional environment, and the communication environment. For each of these, the fundamental point is to recognize that your loved one’s ability to access conceptual memory is becoming ever more unstable. This means that their ability to maintain ordinary reference points is weakening. In this introduction, let’s focus on some of the issues related to communication.

To “maintain ordinary reference points” requires the ability to remember names as well as the ability to locate oneself in time and place. The weakening of those abilities will continue as dementia progresses. In The Alzheimer’s Family Manual, there are a series of contemplations that may help you to understand why that is so frightening. Following is one example, “Contemplation on Words.” For each phase of this exercise, try to spend a minute or so (or at least the time it takes for a few slow breaths). Let yourself drop step-by-step into the states of mind as described. Approaching the contemplation this way enables you to connect directly with their experience of being increasingly trapped by the illness. The purpose is to give you a feeling for the experience of your mind misfiring.

To begin this contemplation sequence, imagine that forgetting a word is not an occasional experience. Imagine that it happens all the time…

Then imagine the interruption of the ongoing conversations you have with yourself when certain words aren’t accessible any longer…

Then imagine trying to speak to someone else when you can’t find the words. Instead, there is just a big gap…

Then imagine them staring at you—half-grinning, with a growing concern in their eyes. There is tension in the air as you fight to find a word, any word, to fill in the gap…

Then imagine that this hole in your mind is nakedly exposed. Imagine how much safer it would feel to not speak, or only to say “yes” or “no.” Imagine how much easier it would be to just fill in the spaces in the conversation—when you are expected to respond—with “yes,” “no,” or “mm-hmm”…

Then imagine that the words spoken to you stop making sense. The sounds themselves cannot be distinguished as having meaning…

Finally, while imagining the look of fear and sadness on the faces around you, imagine that the sounds of speech are indistinguishable from any other noise in the environment: It is all just sound…

After letting go into the experience of indecipherable noise, gradually pick out intelligible sounds and come back your normal experience of words. Carry with you the recollection of disconnection.

Approaching the contemplation step-by-step in this way gives you a sense of your loved one’s experience as they are increasingly trapped by the illness, of one’s mind misfiring. Imagining this experience of losing reference points highlights the importance of making your loved one feel safe, of guiding them with soft sounds and a gentle touch.

Just as you feel frustrated by communication difficulties, your loved one is similarly frustrated. Just as you feel like you are not being understood, your loved one feels that same way. But, added to those feelings is their growing panic over losing our most basic reference points.

Sometimes people react to that terrifying loss with anger, sometimes with silence, and sometimes with uncontrollable panic. For your loved one, each of these reactions may occur as different times. As a caregiver, by offering your reference points to them, through the tone of your speech, through the gentleness of your touch, through the warmth in your eyes, you give them a life raft. In doing so, you will begin to understand that protecting them from fear is the greatest offering of generosity.

This kind of contemplation clarifies the importance of making your loved one feel safe. That is far more important than convincing them that your perceptions are correct. Boycott conflicts about facts, time, place and memories. Instead take those opportunities to make them feel safe in the moment. Engage them in light of their world, their perceptions, acknowledge what they are saying, and then redirect them to physical and emotional safety.

Why can this help? Notice that rather than following the meaning of your words, your loved one is far more focused on your emotional tone. As their ability to hold concepts in mind weakens, or their ability to remember the conversation of 2 minutes ago erodes, don’t fight that. There is no argument to win. Instead, lean into the warmth of your affection for your loved one. In trusting that affection, you invite them to do so as well. It is that affection they both need and want.

When communication is confused or in conflict, affirm what your loved one is saying. Express that you will take care of the problem. Here is a real-life application of this approach: After reading The Montessori Alzheimer’s Project, a caregiver encountered his very agitated mother, panicked that she had left the front door to her house open. As she was in an assisted living facility, he realized she was worried about the house she had lived in many years before on the other side of the country. Instead of correcting her, he simply said that he had already stopped by and closed it. Her agitation immediately ceased.

If you argue, it will only prolong and deepen the conflict. Logic and reminders do not work when the person you are speaking with cannot access those mental processes for themselves. Accept, project warmth, redirect, and move on. If redirection is needed, add, “In the meantime, let’s do x” – something physical to do together such as going for a walk or watering plants

Facial expressions and body language is what your loved one is keying off, rather than your words. So, do not argue using more words. It is a losing proposition for both of you. Stick to the fundamental power of caregiving, which is the ability to make your loved one feel safe through warmth and affection.

Don’t be overly concerned with where your loved one is in the dementia process. The key to limiting the stress in both your lives is enabling your warmth to be their safe place. This is always true. Your lives will be workable so long as you make your Loved One feel safe. That is my hope for all caregivers and those for whom they care so much.

Always Be Kind,
Lyle

© 2023 Lyle Weinstein

ABOUT LYLE WEINSTEIN:

Lyle Weinstein is the author of The Alzheimer’s Family Manual: Advice for the Caregiving Journey and co-author of The Montessori Alzheimer’s Project: Bringing Montessori Insights to Dementia Care. These are available in both paperback and eBook formats. He served as a Director of the Santa Barbara Alzheimer’s Associationfor several years, focusing on caregiver issues; in particular, on issues faced by adult children of parents with dementia. His sister, Cindy Weinstein, released her own book in 2021, Finding the Right Words, adding to the family’s legacy of support for dementia caregivers.

Lyle’s journey began when his father experienced early-onset dementia at the age of 54. After being cared for at home for many years, his father then resided in specialized dementia care facilities. The family’s experiences provided the foundation for The Alzheimer’s Family Manual.

Together with his wife, the founder of a Montessori school community in Vancouver, BC, it became clear that there was much to be gained by applying Montessori principles to dementia caregiving. They began working with Montessori Teacher Trainer Greg MacDonald in 2017 on The Montessori Alzheimer’s Project, releasing the book in 2018.

Since then, Lyle has given presentations on the use of Montessori principles to dementia care in person and online for Alzheimer’s Associations, Alzheimer’s Societies, and for other caregiver support groups. He is a highly regarded speaker now offering training programs that enable caregivers to apply the principles and practices recommended by the Montessori Alzheimer’s Project.

To schedule a presentation or a training program, please email: info@montessorialzheimersproject.com

Resources Mentioned in the Editorial:

In addition to the resources mentioned, Lili has a page specifically for Dementia Resources.

Lyle Weinstein
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