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The NSPA Blog

Experiences in the Age of Dementia

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Posted on February 5th, 2020 by Bettina Carlson, under Alzheimer's and Dementia, Caregiver, Caregiving, Inspiring Stories, Patient Advocacy, Take Charge

I just came across this quote from The Purple Sherpa (https://www.thepurplesherpa.org), and immediately thought of how true this is in my own relationship with my father:

When you think about whether to visit someone who’s living with dementia, whether to throw the party, whether to take on temporary stress for a larger goal, think about this:

As dementia progresses, our loved ones may not be creating memories anymore, but they are experiencing moments. 

The Big Decision

Just recently for Christmas, my family flew across the ocean to spend the holidays with my sister and her family and my father. We arrived late in the afternoon on Christmas Eve and still made it in time for this big Christmas event in the German tradition. While here in the United States, Christmas Day is the big day; in Germany, Christmas Eve is the big evening when the family gets together, enjoys a nice meal and unwraps gifts. But my father wasn’t there. It was a decision we had made. Not an easy one, but in consideration of all the moving parts, the wisest decision we could think of. 

We weren’t sure if our plane would arrive on time. My sister had to drive about 2 hours round trip to pick us up from the airport. Dinner would be later than my father’s usual dinner time, and hence the gift exchange would be even later. We needed to pre-order a transportation service to drive my father in his wheelchair to my sister’s house and pick him up again, so we couldn’t be spontaneous. My father has a regular routine and this late outing would have significantly interfered with his routine and not in a good way; he would have been confused and tired, possibly irritated. Not the experience of Christmas we were intending for him and us to enjoy. So we accepted the reality of the situation and set up a successful Christmas experience for him and us on the following day. My father did not know the difference. But by the look on his face, and his demeanor it was safe to conclude he knew, he was loved and part of the family; and he was experiencing many happy moments on Christmas Day.

Experiencing Moments

I have learned to live in the moment with my father, who lives with dementia. His dementia crept in slowly at first, but after a fall and a hip replacement about 15 months ago, his cognitive ability took a big tumble down, and he hasn’t recovered. While initially, I kept my fingers crossed for a recovery, another health event a few months ago added to his cognitive and physical decline. No recovery has happened and I have accepted the realization that I have to make peace with what the situation is today, at any given day, now! “Now” is the new time! It is quite painful for me to witness the disappearance of the person my father once was; the person I had gotten to know over my life. Yet today, in the now, the moments when we connect over joint immediate experiences, those moments and experiences I embrace and engage in with him with all my being. They nourish my soul, and I believe my father’s too.

Those moments could be missed easily, as they are seemingly insignificant, such as simply enjoying a particular food my dad is eating. He may try to express his gustatory enjoyment himself, saying, “This is tasty.” Or I may see his enjoyment of the food in his eyes and his way of eating, and I will take the opportunity to connect with him and introduce a talk about this food, “This is tasty, do you like it?”, or “I have eaten this years ago on a rainy day and it felt so good,” giving him a possible trigger to respond to, and so on.  Low and behold, many times, he will engage, and the talk can run the gamut from flavors to textures, and to childhood memories. They are not long and elaborate talks anymore, but shorter sentences and lately sometimes just words, as his train of thoughts appears to trail away more frequently as the months go by. I am successfully learning that by being responsive to my father’s cues from talking to trailing off into his world, from words, the meaning behind words, and nonverbal cues,  I am holding a space for him to just be. And I am grateful for experiencing real immediate connections in those little exchanges.

Those moments, when I get a glimpse into his memories, are especially precious to me. And what is more precious in those moments, is the observation, that my dad’s aura is filling with life in those experiences. I can sense how his energy shifts and the look in his eyes becomes “present”. He is present in that moment, no matter how short, experiencing it with all he is! What a precious gift! 

We have had similar success in experiencing such moments by looking at old photo albums. We look at them over and over again, he shares names and relationships and personal stories about the people he sees in the pictures or about the depicted places in more or fewer words, sometimes I have to rely on my memories from previous stories to connect the dots, and what matters is we connect in those moments. It doesn’t matter, that I don’t always understand exactly what he is saying in detail. I focus on him, I hear the tone of his voice, and his energy, and tap into it. Gracefully, connection and experience are not all about words exchanged. 

Music is another area where we create experiences. My dad used to be a singer. But as of just recently, he doesn’t even recognize his own voice on his recordings. This is particularly difficult for me to accept, as singing was his passion and his past-time. He was WL, the Tenor! He was everywhere, at so many weddings, we lost count, singing the Ave Maria so beautifully that he brought the entire wedding group to tears; my own wedding included. He was engaged to sing on birthdays and at concerts, he even traveled abroad to sing. And now he can’t recognize his own voice. But at least he thinks, the man singing is doing a “good job,” – gotta enjoy the humor in that. So, we talk about “that man’s voice” and the lyrics of the songs, and he does enjoy talking about that; while I cry with one eye and laugh with the other, such complex feelings. And we are creating positive experiences. Maybe somewhere inside of the depth of his memories or feelings he remembers?  

Final Thought

I encourage all of us to pay attention to these small opportunities that present themselves daily. Accepting our loved ones as they are now, and not how they used to be, is not easy. I know first hand how hard it is to imagine happy moments and experiences when we are struggling with the challenges of caretaking. But, and this is realistic, if we accept and embrace our loved ones for who they are now, these little opportunities can be opportunities to connect and share moments of experiences. 

Dementia and Alzheimer’s Resources 

Here are some highly referenced books that may support you in your journey with your loved one.

Jolene Brackey. Creating Moments of Joy.

Howard Gruetzner. Alzheimer’s: A Caregiver’s Guide and Sourcebook.

Virgina Bell & Alex Droxel. The Best Friends Approach to Alzheimer’s Care,

Paula Spencer Scott. Surviving Alzheimer’s: Practical  Tips and Soul-Saving Wisdom for Caregivers  

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