Check out this wonderful story about a Dementia Village in Holland. I’d love to see this become a model used throughout the world!
I remember it like it was yesterday. My mom was sitting in the living room, my children watching TV, Dad reading the newspaper, and me on the laptop. Out of the blue, my mom looked up from the paper and said, “Now why are they advertising ‘after Christmas’ sales when we just had Thanksgiving!?” The room went silent; my kids looked at me with such puzzled faces….we had just celebrated Christmas the day before. The tree was up, the presents unwrapped, and Granny couldn’t remember what happened yesterday.
I calmly looked at her and said “Mom, we just had Christmas, remember?” Her stare back at me was one of confusion, embarrassment, and fear. She escaped back into the newspaper, hoping that no one would notice.
From that visit on, I paid close attention to her comments and her expressions. After very little observation, it was becoming clear to me that my mom was showing signs of Dementia.
Dementia. I didn’t even like that word.
Dementia seemed like a negative label, and I could see a future where that ugly label was being placed on my mom, a woman filled with dignity and grace—a woman who’d spent her life beautifying everything around her. Looking at the word more closely only made it worse: Dementia (taken from the Latin, originally meaning “madness,” from de- “without” + ment, the root of mens “mind”) My mom was not “mad”; she was not without mind; she just seemed to be having moments of blankness in her memory. But here we are, diving into this murky new world head-first, and we’ve got to call it something.
Everything in me wants to call it something appropriately descriptive—something neutral and non-judging, like “age-related cognitive impairment.” I hope with all my heart that one day our language will evolve, and we’ll be using grace-filled words to refer to the terrible disease these none-the-less grace filled people are suffering from.
Until then, dementia it is.
Only a short way into the process of getting my mom diagnosed, we found out that she was experiencing vascular dementia. Vascular dementia is the second most common cause of dementia, accounting for 20 percent of all cases. It was challenging to know what was happening to my mom’s mind. Her physician explained that she was having “mini strokes,” medically known as transient ischemic attacks (TIAs). A TIA is when blood flow to a part of the brain stops for a brief period of time. These TIAs were apparently the cause of her vascular dementia. I wish I could say that this information was comforting, but it wasn’t. At this point we knew the cause, but the diagnosis also made it pretty hard to deny that my mom was in fact losing her memory, and that there was little (or no) hope of recovery.
After the pieces were put together, and I realized that we were in for a journey with my mom and her dementia, I began to research everything I could find on the Internet, in books, in journals, etc. Certainly, I thought, there must be an approach that preserves her dignity and wellbeing. What I found was very discouraging. Many books had been written, several resources were available, but the overall message was very distressing. Of all the approaches I found there was not a single one of them that could be called “hope filled.”
Fortunately, a friend of mine heard I was struggling with my mom, and she gave me the book Contented Dementia. I devoured the book as voraciously as I’d devoured any book in my life. And then I read it again. This woman (the source of the content of the book, though not its author), who had cared for her own mom, seemed to have an approach that allowed her to have a positive, respectful, relationship with people with dementia—she was actually connecting both joyfully and productively with people suffering from severe memory loss.
The first chance I got, I began to try various techniques from the book on my mom. When I did, the experience was wonderful. My mom was happy instead of frustrated and confused. After those first experiences, I could not learn fast enough. For the first time, I had hope that my mom’s diagnosis didn’t mean that she was condemned to live out the rest of her days in confusion, frustration, and discomfort.
I emailed Penny Garner, the woman in England who had established a loving relationship with her own mom. She and I communicated several times, and I was so taken by her approach, that I decided to travel to Burford, England and train under her. After a couple of visits, I realized that she had discovered many techniques that were effectively helping people with dementia to be content. The more I learned, and then implemented what I learned on my own mom, the more I witnessed the relationship I had with my mom as being positive, and it actually preserved her dignity and well-being at the same time.
At the same time, my colleagues, Mary Koloroutis and Michael Trout were finishing writing their book See Me As A Person: Creating Therapeutics Relationships with Patients and their Families. The behaviors they wrote about, seemed to integrate perfectly into Penny’s approach with those suffering from dementia. See Me as a Person invites clinicians (which, in the world of dementia care, includes family and friends who care for the dementia sufferer) to “attune” to the people in their care. In so much of traditional dementia care, where the main objective seems to be to get the patient to cooperate, the idea that you would actually try to tune in to what the person is experiencing gets completely lost. If the person with dementia is not experiencing “reality,” why would we want to tune in to that? (As you’ll see, as this book continues, we do it because it works!) See Me as a Person also identifies three therapeutic practices: wondering, following, and holding, which I could see immediately would help me keep my mom emotionally safe, allowing me to become for her the “sturdy” presence that Mary and Michael wrote about in their book.
My mom lived with dementia for about five years. Discovering this new way of connecting lovingly, respectfully, and authentically with people who have memory loss was a journey, and I’m grateful every day that for at least some of the time my mom lived with dementia, she was happy.
Throughout this trying journey, it was important for me to see my mom not only as the aging, vulnerable person she was becoming, but also to remember who she was in her finest hour, prior to the onset of dementia. She was a woman filled with grace, beauty, dignity, personal pride. She was an exquisite homemaker who loved to travel the world, and she was the loving mother of six children. When I kept both faces in front of me—the face of who my mother the dementia sufferer and the mother I’d known and adore for my entire life—I was able to be in a loving relationship with her that filled both of us with happiness and contentment until her dying day.
As a colleague shared with me a piece called Joan’s Family Bill of Rights, written by Barbara Lewis, my mind went right to the journey I had taken with my own mom. My mom had dementia, and although Barbara’s experience was in a hospital setting, I see such a crosswalk between her insights and mine from a memory care unit perspective, that I decided to write my own family bill of right’s, in honor of my own mom and our journey together.
MaryAnn’s Family Bill of Rights
Staff who care for the elderly, especially the frail vulnerable population that has dementia, are the greatest people on earth. They take care of our loved ones and provide compassion and care “24/7.”
Throughout nursing care/memory care/skilled care facilities are posted “Residents’ Bill of Rights and Responsibilities,” which outline the expectation of residents. Nowhere did I see the rights of the families who spend long hours at the side of their loved ones, sometimes watching them slip slowly away from them, until their final breaths. After spending months being with my mom, MaryAnn, in a memory care unit, here are my suggestions for caregivers when dealing with families:
1. Don’t treat elderly people like they are children. They have endured many many years of hard work; this is a time they should be treated like wise, priceless individuals.
2. Don’t treat elderly people like they are objects. Shouting at them and pulling them around by their clothing is not humane; they most likely are some one’s most priceless gift, treat them with loving kindness.
3. When you enter the room, first notice what the person is doing. If he or she is resting, exit with quiet respect. If family is present, don’t make the family invisible by not making eye contact and ignoring them.
4. When the fall alarm goes off, have a sense of urgency when you respond. We as family members can hear it ringing in the hall and are afraid some frail person may be hurt. Laughing at the desk or making light that the alarms are going “off again” is neither funny nor reassuring.
5. Don’t complain about anything. We don’t care if you are short staffed, the computer doesn’t work, you can’t find what you need, etc. Family members don’t want to hear your complaints, no matter how valid they may be. We want the room filled with as much love and tenderness as possible.
6. Don’t see the family’s involvement as meddling in your work. Some people can only cope with the loss of their loved one’s identity by trying to feel in control of a world that feels like it’s eons away from everyday reality.
7. Determine the families’ energy level before you make a high-energy entrance that may feel chaotic or disrespectful to others. Your energy level should match the resident’s and family’s. Know when to laugh and when to be quiet; the emotions we feel vary from sweeping sadness to gratefulness just to have our loved ones with us one more day. We appreciate when you know where we are in the spectrum of emotions. Meet us where we are, not where you are.
8. When you care for the elderly person with kindness and compassion it is the best gift you can give any family. We worry all the time; we carry guilt, remorse, sadness, regret and many other emotions. Your ability to make our loved one smile and feel content, gives us unbelievable peace.
9. Remember we are grieving. Our loved one is no longer our mom, dad, uncle, or aunt, as they have resorted back to a different time. Words cannot describe what it feels like when your own mother looks at you and doesn’t know who you are. Ask the family what they need, how they are, and what you can do for them. Sometimes just asking is enough.
10. At the end of the elderly person’s life, demonstrate concern for his or her family. Although you may think the family will be at peace to be at the end of their difficult journey of having a loved one with dementia, this may not be true. The realization that they will never have this person in their life again is overwhelming. Their emotional pain is internal, and there is no cure. Your kind words can soothe a breaking heart.
*Adapted with appreciation from Joan’s Family Bill of Rights (www.joansfamilybillofrights.com) by Barbara Lewis.