The Unexpecte​d Gift

Dementia Compass, Personal Story of Dementia

When I was 10 years old, I learned that traditions will change, come to an end, or begin. They would change not because I was getting older or living in different cities, but because of events in life that can change our family. The Christmas of 1999 was the first Christmas after my grandfather’s stroke, and the first Christmas my grandma would be spending without Poppa’s help to prepare for the holidays. That year we started a tradition that would take place on the third weekend of Advent. I would go over to her house and help her decorate the Christmas tree. It started simple. We would decorate together, listen to Christmas music, and I would frequently spend the night. Through this, I experienced the changing of traditions and realized that the childhood Christmas I lived for would not always be recreated year after year, just as I knew and loved. That because of my grandfather’s stroke, things changed. Change we didn’t necessarily want, but where required to accept because of events that took place in our lives. We kept up this tree decorating tradition until my grandma’s last Christmas in her house in 2007.

 
As time passed I had to admit that my grandmother was getting older, but not just older, that she had Vascular Dementia. That first Christmas after her diagnosis in 2005, was when I started to help her with additional preparations. I began helping her wrap presents for family and friends, seal Christmas card envelopes, put up other decorations around the house, I took a larger role in baking cookies, and, once I had my driver’s license, I would take her Christmas shopping. Eventually, my grandma no longer actively placed ornaments on the tree but would watch, and we would talk as I hung each ornament on the tree, sometimes where she dictated one to go. Despite the sadness of my grandmother’s decline, the new traditions didn’t feel like a burden, but a gift. They became a way for me to first admit that she was getting older, had dementia, and was declining. This allowed me to cherish each moment with her, as well learning to see moments I spent with others in my life who I suddenly realized, would not always be around. It was a gift to learn that at the end of the day, it is not the exact placement of the decorations and the type of wrapping paper used or even the exact Mass time and place we attended (one I still struggle with) that make Christmas. It was recognizing at I am spending time with people who mean the world to me. I learned to see in the moment that these individuals, these family members, and friends are what enrich my life and this season. I have always been a thoughtful child, or shall I say aware child, but it was her diagnosis with dementia that deepened what I was seeing, causing me to fully admit what I didn’t want to be true and in doing so, allowed me to enjoy each moment instead of fearing its end.
The Christmas of 2008, after my grandma moved into a nursing home, was the first Christmas I didn’t decorate her tree, but as I had learned 9 years ago, it was the time spent with her that was the tradition, not the tree itself. So, every third weekend of Advent, I would go visit her bringing with me a plate of cookies. We would talk or sit in silence together and look at the decorations around the nursing home. She has now passed away and what was our tradition is now a memory. I am grateful for the gift to have recognized the role she played in my life in helping me to see the important role all of my grandparents, parents, my brother, and my great aunts and uncles play in my life.

 

As the preparations are made for our loved ones with dementia, remember the gifts of the moment, that despite the presence of dementia, we don’t have to allow traditions to fold and crumble, we simply need to alter. That the time you spend with these individuals this day, and all days, is treasured gold. No one knows if it would be a good day or a bad day, if they are well or ill, what they will remember or forget. Leave those worries of the day with God, and allow the gift of still being able to hug them, “Merry Christmas” be what you remember, what you look forward too, and what you cherish. Take pictures,  journal about the time together and stories shared, set aside your differences with family and friends, and know that this time together is their gift to you.

What Dementia Can Not Destroy

Personal Story of Dementia

Every Sunday I scroll through the obituary pages. I hold my breath as I follow the list and pray I don’t recognize a name. I breathe a sigh of relief when I get to the bottom and I didn’t recognize a name, or, like what has happened a few Sundays in a row, my heart sinks when I see the name of someone I have worked with in the past or present. “It is strange that a 28-year-old looks at that page of the newspaper,” some have told me. This weekly ritual is an outcome of my job. Some call it an occupational hazard, and if so one I will gladly take on. I don’t think of it that way. It is part of living, of coming to care about another individual. Every day I am asked to become relational with those whom I work for in the memory care, assisted living, and nursing home communities. In becoming relational we teeter on that balance between professional and personal relationships. I come to care about them, and they come to care about me. I become a sort of niece, granddaughter, even sister to them, and they become additional grandparents, uncles, and aunts.

The individuals whose names I saw in recent weeks were especially impactful on my life. They made me smile and were sources of great learning. The first person caused me to ask questions, to think about how I care for someone. My eyes were opened wider because of the stories she shared with anyone who would listen. I gained insight into what it was like to grow up in Nazi Germany and live through the horror of that time, to move to the United States post-WWII as a German. I learned what it was like to be a university professor and a great scholar in the 20th century. The second individual was someone whom I did not spend as much time with, yet taught me to laugh a little more freely again. We connected through a similar faith, and love of family. He reminded me what it was like to leap, and the freedom that came from doing so. Many of the stories and moments shared will remain between the two of us.

Reflecting upon these stories and moments shared, I am again aware of what dementia can not destroy. I am reminded of the lessons these individuals still could teach, and hope they could still inspire. All too often I see people brush off our elders, not bothering to take time to hear their stories that help make the listener a better person, our society a better place to live. We have so much to learn from our elders regardless of the journey their life has taken, regardless of the diagnosis in their charts, and how they appear to be sitting in the chair across the room. A better future comes from learning what our elders lived, what they learned, and what they wish to pass on. Take a moment, sit, listen, and long after they are gone, still hold in your heart their spirit. It will make you a better individual, a better care partner. I can guarantee you that much.

A Starting List-What To Do?

Artful Approach, Dementia Compass, Personal Story of Dementia

Each time someone learns that I am a Dementia and Creative Engagement Specialist, someone will tell me their personal story of dementia. I will learn their grandma had Lewy Body Dementia, or of their mom having early-onset Alzheimer’s, or their grandfather has Vascular Dementia. Not once have I shared my work without someone sharing with me that they too live/lived with dementia. More and more of us will be impacted by this terminal disease yet our knowledge and the way we care for those with the diagnosis and their care partners are sometimes limiting. As many people there are with dementia, that is how many paths will be experienced. My personal experience with dementia, the bullet point version? My grandma was diagnosed with Vascular Dementia in July of 2005. She lived with the diagnosis of dementia for 6 and a half years. Those years were graced with an excellent doctor, and good care at the nursing home she lived starting in 2008 until her death in 2012. She had a handful of family members that visited her regularly and had a care plan that helped her sustain the best quality of life possible.  This is not always the case.

After sharing with each other our experiences of living with dementia I am often asked what steps should they have taken, what steps should they take now to help improve their lives and the lives of their loved one with dementia? It is next to impossible to come up with a universal list, but regardless of what type of dementia your loved one has, and where they are in the progression of the disease, this list might be a good starting point.

1. Love them as you always have. Caring for them as another human being. Visit them, maybe even with a cup of ice cream!

2. Have patience with them, and yourself, as the disease progresses knowing that the person they are today may not have been the person they were yesterday, or 10 years ago, the person they will be tomorrow. It can be difficult but live in the moment, finding a balance between who they are now, and who they were. Cherish the moments when they are having good days. If they are struggling to find a word, or cannot remember something, don’t rush the conversation, redirecting if needed.  And understand that everything they do, from trying to help someone, to the words they speak, to the yelling is a form of communication.

3. Find a really good doctor if you can! (If you want to become a doctor, or are in school now to become a doctor PLEASE consider going into Geriatrics! Or at a minimum study and work to understand dementia.)

4. Find a support group! These can be in-person groups or an online community.

5. If they are a person a faith, work to make sure that their faith is still being practiced. Pray with them! Take them to Mass/service.

6. Learn what makes each form of dementia unique, learn about what medications, care plans, and support work best for the specific type of dementia your loved one has, and then keep learning.

7. Encourage the places of business you visit to become Purple Angels.

8. Know that dementia does take away, but it also gives. It gives you time to spend with the one you care about in a new way. It allows you to engage with them creativity, to record their story. Don’t allow what they might no longer be able to do, to prevent you from spending time with them, engaging with them in ways that are creative, educational, social, and new.

9. Take care of yourself. Self-care is a trendy thing right now, that doesn’t mean you should fluff it off as you roll your eyes. Take time to mourn the person they once were, and find ways to breathe, find joy in your life, and work through the difficult times. Seeking support when needed, and know that dementia is an improv show. We are all taking what each moment is giving us, and then moving it forward the best we can.

10. Respect them. Don’t yell at them, Don’t ignore them. Even when it is difficult, still visit them, treating them as you would like to be treated.

 

 

My Personal Story with Dementia

Personal Story of Dementia

On this day 12 years ago, my Grandma Marie was diagnosed with Vascular Dementia. This launched part of my career path, motivating (and inspiring) me to take a campus ministry focus and turn it into a vocation. Living with dementia is difficult and sometimes dark, but never without a flicker of light as long as there is joy, compassion, love, and we strive for better care, a better way of life, and work towards a cure.

Her Signature

Personal Story of Dementia

My Grandma Marie’s signature is on everything I do. Well, you can argue that all of my grandparents and parents have their signature on my life as well, but when looking specifically at dementia, it is my Grandma Marie. My grandma had Vascular Dementia and lived with the disease for 6 1/2 years (a diagnosed 6 1/2 years). I always ask myself whenever I am about to develop a program, lead a training,  or sit with someone with dementia, “How would Grandma Marie need me at this moment?” For as many people there are with dementia there are as many forms the disease takes, but with my grandma in mind I am always reminded that this person is not dementia, they have lived a life I do not know and have stories that far exceed what I see before me. With Grandma Marie’s guidance and in remembering her, I have set forth into this work. These “pages” will be filled with stories of my personal experience with dementia, but primarily filled with information that may become a resource for us, to better communicate, care for, and sit with those living with one form of the disease or another. I seek to make sure the voices of those diagnosed with dementia are present, and that this may be your guide through the often difficult journey of dementia.

In April I went to visit an assisted living where I once worked and the phrase Bonae Memoriae fit with all that I was thinking about regarding dementia. It is the working title, and one that I hope becomes a reminder for myself, and you the reader about what I believe to be the current running through dementia work. Of Happy Memory. A person with dementia may not remember what they ate for breakfast, or what they did an hour ago, but they will remember how they felt, and the impressions the individuals around them left. So let’s help them make it a happy one.

Thank you for coming here, reading, and hopefully sharing with me and others your own experiences, thoughts, and questions. As my knowledge of dementia grows, and as we as a society and field learn more about dementia I will make updates to any information that becomes out of date, or no longer best practice. I will share with you resources I use and have come across.  I hope to balance information learned from the lens of the artist, the creative arts therapist, the medical professional, and most importantly the person with dementia.

All of us are living with dementia, and a cure is not certain (at least not in our lifetime), but we can care, we can give, and we can learn from the millions of individuals with the diagnosis of dementia and their caregivers.