Over the last two years, my East Side Institute colleague Dr. Susan Massad and I have had the honor of leading “The Joy of Dementia” workshops around the country, including one in the San Francisco/Bay Area that took place earlier this year. We were joined by about 60 people, a number of whom are living with dementia. One of them, a former college professor whose diagnosis was still recent, began sharing the experiences and emotions she was going through, and ended by saying, “What can I say, it’s just weird.”
I was incredibly moved by her telling us this – both because it’s not an easy thing to say – and because she’s right. Dementia is weird – in the most ordinary sense of that word. Things start to become slightly, and then not so slightly, and then greatly off-kilter – not only for the person living with dementia but for everyone in their lives. This can leave us upset, afraid and uncertain. And when faced with uncertainty, it is tempting to try and control, rather than embrace, the situation. Believe me, I am not saying this critically. When I was with my mom – who has since passed away – while she was living with late-stage dementia, I could feel the need to control in every bone in my body. But fortunately for her, and everyone else around us, I could also appreciate and even enjoy the weirdness of the situation.
For example, I was genuinely shaken when I realized that, despite hearing over and over again throughout my life that a person with dementia is “no longer there,” my mom really was there, and I had to figure out how to be with the her she was becoming. Well-meaning friends would often ask, “Does she know you?” and my honest response was, “I have no idea and I really don’t care. What matters to me is that I know her and I want to be as giving as possible.”
But in order to be closer to dementia, we have to do weird things – we have to babble, we have to play and pretend, we have to embrace the fantastical, all of which most adults are really ill-equipped to do. And I understand – it’s hard being weird. Which is why I believe something new is needed in the dementia arena and, I would argue, in the incredibly uncertain world in which we are living, and I think I have something to offer. I understand why people can be afraid of or put off by being weird, but I have a “solution” – rather than being weird, try performing weird.
Without going into a lot of detail, performance is the word that is given to the socially sanctioned activity of being who you are and who you are not after early childhood (where babies and young children grow precisely because they are supported to play, pretend and imitate the older kids and adults around them. Whether we like it or not, dementia demands a new performance from all of us because “what we know how to do” doesn’t work, and more often than not leaves us lonely and isolated from even those closest to us. What I love about performing is that we never perform alone, we perform with others, we create—to use the theatrical term—an ensemble. And it is in this ensemble that we are supported to try new things in our lives and, I would argue, to grow with, rather than be paralyzed by, the emotional journey (roller coaster) that is the dementia experience.
Which is why I feel passionate about helping everyone who experiences the weirdness of dementia (or anything else in their lives) as shameful to learn how to embrace our “otherness,” our difference, our limitations in ways that allow us to move closer to, and create more intimacy with, the people in our lives. Because none of us – no matter our life circumstance – have to be locked into the roles and expectations with which we are all saddled. We can endlessly create and develop community, and ourselves, simultaneously.
I recently read a wonderful article, “Out of Time: Un-knowing the self”, written by Sallie Tisdale for Harpers Magazine, a brief section of which I’d like to share with you:
‘Time changes when the brain fails, becoming strange and plastic…Dementia gives us an opportunity to question how time and language and perception work. It strikes me that both artistic and religious practice have these qualities: new ways to use words, repetition, pauses and silences, gestures and images – expressions of the expansive interior longing to be heard…An opportunity to question how time and language and perception work.”
What a remarkable gift, and one I was given while with my mom in her last months. I was mesmerized by the graceful movement her hands would make – seemingly with a life of their own – and touched by this woman, who rarely spoke unless spoken to, babbling with exquisite animation to whoever
was around.
When I thanked Carolyn Halpin-Healy for sending me this article, she responded by saying “There really is so much poetry in dementia, if we could only think less in terms of loss.” And, I would add, tragedy. Does this mean we won’t feel a myriad of emotions as we go through this journey? No. But if we can embrace the weirdness, the poetry, the creativity, the journey can be far richer and infinitely more human.
Hello, I am an Aging 320 student at the Erickson School of Aging. I found your post really interesting. Just as we have different stages in life, dementia is also a stage of life which everyone is not privileged to experience. People with dementia live in their minds. They might or might not include others in their world. I feel this is also a stage where one is not shackled by the norms of society or religion. One can truly live one’s life as desired. It is another thing that people suffering from dementia do not realize this. It makes it pleasant to think that people with dementia might actually be enjoying their state. The real problem lies with the caregivers of people who are in any stage of dementia. The caregivers need to have a lot of patience and empathy with them. With proper training of the caregivers, this can be achieved. And, as pointed out in the article, the caregivers might also set out on a journey to rediscover themselves and life as a whole. It might become a life-transforming experience for them too. So, we take such patients as individuals with a difference, who need special care just as babies do, the world’s perspective towards people with dementia might change and people will learn to live with people living with dementia and enjoy the weirdness of it all.
I am currently a student in AGNG 320 at the Erickson School of Aging. I learn how to deal with elders problems, ups and downs and overall their whole life. I enjoyed reading this post on “The Weirdness of Dementia” because I can relate to everything that Mary Fridley said. She had a family member with dementia and had to learn not to do everything for their loved one with dementia but also learn how to embrace it because this is who their loved one was now. Having loved ones with dementia means you will do whatever it takes to make them the most comfortable in their situation. They may not know what is going on half the time or who they are talking to, but as long as they are having fun and able to live their life the best way they can until the end, I am going to make sure that happens for my loved one, no matter what the cost. There will always be a journey in anything you do, but with dementia it is on a whole other level that will bring you out of your comfort zone, but make you realize the beauty of life and how precious it is. The weirdness of dementia is a special gift and it is what you make it, so might as well make the best of it and make it the best living for your loved one.
hello,
understood that she was always there, never gone, no goodbye, no empty shell, but: a persisting human spirit deserving of love and witnessing and all and every kind of engagement possible.
I am a student in AGNG 320 class at UMBC Erickson School of Aging. I found your post very touching. I learned about dementia in this class. I found people with dementia has problems with memory, communication and language, ability to focus and pay attention, reasoning and judgement and visual perception. Some cases, they couldn’t recognize their name, their family or their daily activities. Therefore, it is a painful situation for every family member whose loved one is going this condition. Reading your story in this blog was very inspiring and touching. I think your blog gives some hope for many. As you said in blog, “in order to be closer to dementia, we have to do weird things- we have to babble, we have to play and pretend, we have to embrace the fantastical, all of which most adults are really ill-equipped to do”. It is very true indeed. There are many people who doesn’t know about dementia and how people with dementia treated. It could be because of lack of education or training. Every patient has different story and knowing their story can help build a better person to person relation with them which could be helpful while treating or communicating with people with dementia. In our class, we learned how about experimental model which sees dementia as a shift in the person’s perception of his or her world. It views people with dementia through their own eyes as far as possible. I believe people with dementia need love, care and personal relationship.
Dear Ms. Fridley,
I am currently a student in Aging 320 class at Erickson School of Aging. I had a chance to do a research paper on dementia and your post touched me deeply. I learned that dementia is the condition in which one loses their memories over a period of time. It is sad when people assume that people who battle dementia are not themselves anymore. I think that it is important to educate people that, like you said, living with dementia is like doing a performance where we learn how to approach or see the things we are familiar with differently. It is also crucial to point out that as a performer cannot perform alone, person with dementia cannot get through life without the help and support of those who surround them. I do not think that dementia patients lose themselves over the disease, they might have been more like themselves than they had ever been their entire life because of all the social expectations and norms that they tried to conform to before. If we look at the disease from a more positive way, it would not be as bad as it seemed.
I’m studying management of aging services through the Erickson School at UMBC, and I’m taking aging 320 this semester. Your post really spoke to me due to my experience with my great aunt, who suffered from Alzheimer’s. She went to live in a home with three other dementia patients. She was always a huge Elvis fan, so for one of her birthdays we had an Elvis impersonator come out and perform. It was incredible to see her face lit up with so much joy and excitement; to her, that was the real Elvis. It’s important not to ruin something like this by telling her that the real Elvis had long been deceased, just like her parents. This falls in with your entire idea that dementia is “weird.” It must have been weird for my dad to be “Burt Reynolds,” or for my grandmother to tell her sister that their parents were at the grocery store. It’s too common for caregivers to attempt to break their fantasies or thoughts into reality; this form of care only results in upset and “combative patients.” They will often use psychotropic drugs to sedate the residents, which also worsens their overall well being. In our course, we’ve discussed a lot about the inadequate training that these staff members receive when working with older adults, and especially those with dementia. It’s important that everyone, staff and caregivers alike, is aware that when dealing with this disease, it’s best to just act “weird.”
This is a fascinating conversation, although I have to admit that I struggle to even imagine being able to do this with a loved one. The thought of it is very frightening to me–and I’m sure that everyone is different, based on previous experiences, temperament, etc. I’ve been very fortunate that my husband’s vascular dementia has never caused him to have hallucinations, etc. He’s always been firmly situated in the “real world,” but cognitively diminished and apathetic. — Just another thought: A caregiver’s comfort in entering the world of dementia might also vary depending on the familial relationship (e.g. mother, sister, husband, etc.) with the loved one and their previous personal relationship dynamics.
After caring for a husband with dementia for four years, whose frustration frequently manifested as anger or sullen silence, I think it’s misleading top talk about the “joy” of dementia. There are moments of joy which can be seized, yes, but I did not experience anything joyful about the disease itself. That’s like talking about the joy of cancer. It seems disrespectful to the reality of the suffering involved for both the person with the disease and those who love them.
Hi Carolyn, thank you for saying this. I am so sorry for your experience with your husband and understand from personal experience how difficult it is to be in the situation you were in. I just wanted to share that, in talking about the “joy” of dementia, we are not denying the pain, frustration, despair, confusion and so many other difficult emotions that are part of the experience. If anything, we’re working to help people more creatively build with all of that. It’s what we call “building with crap” because in all of our lives, there is a lot of “crap” – the not so positive things that we rarely think are useable in creating something new or more intimate in one’s entire life because in my experience with dementia, it is the strength of our support that makes it possible to do anything even remotely different. So thanks again for your very important response.
Mary, I greatly appreciated your article. Thank you! Thought you might appreciate reading some of my thoughts and insights on this topic – especially the new view of dementia that I was given a few years ago and wrote about in my mini-guide on dementia and memory this past year. Here’s the link: https://beacon.by/age-thrive/rethink-aging-dementia-memory
Together we can all help to change people’s minds about minds that have changed. Thanks and keep up your great work!
Why should non-demented caregivers be expected to become infantile, “babble” and pretend to be something they are not? You are recommending dementia by contagion. Some of us would like to hold onto who we actually are, including our sanity and mental capacity. I guess this is some kind of outdated view — all the readers here seem eager to get into the sandbox. Pas moi.
Hi, I very much appreciate you responding, and think you are raising an important question. I very much support you not getting “into the sandbox” if that is not something you want to do. However your concern about it infantilizing you or other adults is interesting to me, since we do babble in our lives – take our relationship to babies for example. I’m guessing you “babble” with them all the time and are rarely concerned that those around you won’t continue to relate to you as an adult. And, I don’t view babbling as infantilizing the baby either, since it is our ability as adults to pretend and play with babies and young children that helps to create an environment for those babies to become the adults who, ironically, begin to have judgements about babbling (and believe me, you are not alone). I happen to think the ways we know how to connect through language can be very limiting and constraining, so I like helping people break free of that, with or without sounding nonsensical, but I absolutely respect your concerns, so thanks for sharing.
Wonderful article, Mary. Thanks for bringing the weirdness factor into the discussion. It made me think about how much “weird” is used as an insult throughout our culture. For example “weird” is one of the worst names a kid who is the tiniest bit different can be called by other kids, and used as a reason to ostracize. So I love your proposal that we embrace the weirdness of dementia and hope we can find ways to perform it at all stages of our lives.
Mental illness has been stigmatized throughout history and IQ has been celebrated as the epic goal in our social path of life. This is madness and the weirdness we all have had to rally around as conformity within this worldly experience attest. However physicality in my opinion is the weirdness and the difference of one form of being to another is but a framework to the ultimate of any experience in if of itself. Between each bodily form is the truth of the utlimate experience that of just being in the unknow the bliss of the experience itself.
Nice read! Truly dementia is one of the most common diseases among seniors who reach the golden years. Thank you for this article and joy’ of Dementia.
Thank you for sharing.
We need to tell more dementia stories like this, as they are so common, not the exception! I will share your article far and wide. Thanks for sharing your perspective and work. This reminds me so much of Cathie Borrie’s beautiful memoir “The Long Hello: Memory, My Mother and Me.” When we take the time to truly listen and be in the moment with individuals experiencing cognitive change, it is joyful.
Thank you for this great story, Mary. (And thank you, Keri Pollock for the mention.)
There was so much beauty and magic and imagination in the conversations I taped with my mother – and yes, I too understood that she was always there, never gone, no goodbye, no empty shell, but: a persisting human spirit deserving of love and witnessing and all and every kind of engagement possible.
Thanks for sharing and inviting comment. Two things have struck me hard as a caregiver for someone with dementia. 1) is how the “tragedy” of this condition is so tightly connected to knowing and cognition and the brain — all which have an elevated stature in society. They are “gods” in our upside down world. To know is everything. Insights are commodities. So when one’s capacity to know changes, diminishes, etc…one is seen as having nothing, being of no value, being lost or empty. Caregivers are subject to the flotsam off this societal attitude and can experienced everything from contempt and derision to pity for “wasting” their time on people who “aren’t there.” And 2) in the study of this condition, how little attention is paid to alienation as a causative factor. As though this powerful and widespread phenomenon – alienation – could exist so comfortably in our society and yet have NO side effects on the human mind! Not only are the elderly impacted on by living in a culture that worships youth and devalues them, but we are all impacted on by alienation and efforts–which take many forms–to disconnect us from our history, our experiences and our lives. No wonder there is an epidemic now in forgetting and disconnect that we have quickly medicalized and call dementia. IMO there is not so much difference between the “madness” produced by being ostracized, cast out or marginalized by a society and that which is exhibited in dementia.
Mary, I wonder if the people with dementia experience it as “joy”? And “weird”? I do think the participation of those around the people with dementia will have a big influence on the people who have it and live it. And what about others whose reality is “off” and weird? Those with autism/aspergers? Mental illnesses? It might not be so dissimilar , how to relate to daily experiences and realities of other people without assuming we are all the same.
Incredibly beautiful article. My whole career I have said there is so much poetry in my journey of working with those with dementia. I have come away with so many teachings of just pure raw vulnerability, love, and my own ability to stay mindful and listen. Thank you for sharing Mary!
Thanks so much!
Thank you for this article. It is refreshing to read something like this which is so insightful.
You are very welcome, and thanks for taking the time to respond.
Mary this is beautiful. I say this after looking everywhere for scissors I keep in the kitchen drawer only to find them days later in the drawer just to the left. Little things like this leave me wondering if I, like my mom, will develop dementia. I think I will send this to Margaret for her to read. . . just in case. I am so glad you were able to be with your mom. One of the most selfless acts of kindness I have ever done is being with mom for about two weeks and finally as she drew her last breath. I truely believe it made me a better person.
I discovered, when my mother experienced Dementia, prior to her death five years ago, that I had to learn new ways of communicating with her. After an initial period of anger and confusion, she became childlike and her interactions with me became simple, and I must admit, more direct. She lost her inhibitions, and her behavior became—weird. I soon realized that I could never have a loving relationship with her until I accepted, fully, how she was changing. Slowly, I gave up my feelings of loss, and loved her for who she was, in that moment. Thank you for this article, and a view into the ‘joy’ of Dementia.
Thank you for this refreshing insight. It’s an encouraging approach for me, as a poet! I used to celebrate the odd language used by my Japanese students in the poems they wrote in English. Now I see I can do the same if language and life goes weird for me or any of my family.