Don’t Call My Mom Demented

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.

2 thoughts on “Don’t Call My Mom Demented

  1. Wow. Your story really pulled at my heart. About a year ago my brother and I visited my mother’s gp as we were concerned about her behaviours and memory. Due to confidentiality we are not allowed to be involved in any future conversations without my mother’s consent. Over this year we have tried to broach the subject with mum but she becomes either increasingly aggressive or promises to go to Dr but then makes excuses or forgets. This past few months have been extremely difficult with her social skills so bad we cannot take her out anymore and the comments she has made to younger family members are very inappropriate (us older one ignore or try to talk it through with her) because she has deteriorated so much the grandchildren don’t want to visit as she constantly upsets them. When my brother or I visit (every day) she becomes angry at herself for forgetting little things then becomes really abusive to us and blaming us. If you have any advice on what to do as we are being pushed away but we want to help.

    • First, Lesley, I want to say that I know how hard it is to go through what you and your sister are going through with your mother. The turning point in my own journey with my mom was finding the book Contented Dementia; I would recommend you get yourself a copy of it right away. You can also find helpful information at http://www.contenteddementiatrust.org/. Contented Dementia explains the care method used by my colleague and mentor, Penny Garner, a renowned dementia care provider in the UK.

      I’d also invite you to listen to a webinar I gave a few months ago called Relationship-Based Memory Care: A Behavioral Approach to Caring for People with Dementia. Here is the link: https://www4.gotomeeting.com/register/352033431

      There are three things that I would recommend for you that may provide you with some relief right away. Penny has created “Three Golden Rules” to follow when interacting with people with dementia: 1) Don’t ask questions, 2) Listen to the person with dementia and learn from them, and 3) Don’t contradict the person with dementia.

      It may seem like common sense for you to give your mother correct information when she’s gotten something wrong, but once you learn more about how the mind of a person with dementia works, you’ll understand that correcting her will do no good at all, and more importantly, it can do her emotional harm. More often than not, she will not retain current facts, but she will retain the feeling created by her interactions with you and others. If you can keep your interactions with her happy, treat her like an expert on her own life, and join her on whatever page in her life she seems to be on, she will be happier and easier to work with. You may find that one day, in the middle of a happy (and perhaps even somewhat nonsensical) exchange, she becomes quite willing to come along with you to wherever you’d like to go.

      Once you read Contented Dementia, you’ll understand all of this better. In Spring of 2014, I will be publishing a book called Dementia: There is Hope, which will integrate Penny Garner’s well-researched, remarkably successful care practices into a very simple handbook for caregivers.

      I wish you all the best in your journey.

      Margo

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