The Depth of a Life

Have we become complacent in care? In Life Enrichment? Have we thrown around term “Person-Centered Care” so much that it has lost meaning? Have we felt a lingering burnout and forget to become relational with the person we are caring for? Far too often when a new employee comes on board, they are giving a 2-minute briefing about a resident, then told to look at the board outside their door or at the possessions in their room in order to get to know a resident. This small segment of information does not show the life each individual has lived, yet it is relied on by care professionals and seen as enough knowledge to proved proper care. They believe that in taking in only this information they now know the person, have become relational with this person and can do their job successfully. It is time to reconsider this belief. We frequently feel that there are not enough hours in a day to learn more than what this picture shares, but how can we provide care without learning more?

When looking in a person’s room or the objects outside of their door, more often than not we see only what the family has selected, what they feel is important to share. It is another person’s narrative of the life of the individual sitting in front of us. The comments made by fellow co-workers is again, another person’s narrative. It can be cold, short, and sometimes inaccurate. Dementia or not, the person’s narrative of their own life is far more impactful and informative. When we look beyond this layer, we understand the deep, dynamic, beautiful life this person has lived and wishes to continue to live. Only when we use this information as a launching point towards becoming relational can we provide the best care and support possible. There is a major hurdle to becoming relational with a person with dementia, and it is not what you might think. It is not their memory or loss of language that makes it difficult. The biggest challenge is that frequently fellow staff warn their co-workers and volunteers about the residents, instead of inviting them to get to know each individual they will encounter. They become a care machine that erases the freedom of time to sit and talk or sit in silence with a resident. A life is more than a collection of things in a room. They are more than the chart at the nurse’s station. They are more than the warnings from fellow staff.  Can we really enter into a relationship when we have warnings and judgments about who this person might be? I was once told to watch out for a resident, for they will surely make me cry. That this person is nasty and cold. I have been warned about a resident who was labeled as a challenge and a disruptor, not worthy of engaging in conversation with under any circumstance. Do you want to know something? They become two of my favorite residents, and they impacted my life as much as I hope I impacted their lives. I frequently was the only person to speak with them other than for medical purposes. Their belongings and chart became human only at the moment when I was willing to enter into a relationship with these residents, allowing me to provide the programming and support they were seeking.

Life does not end, the individual’s interests, stories, and joys do not disappear when they move into a care community. Care communities in general lean too heavily on the chart, and a second “chart,” the possessions in the resident’s room. If that was our only knowledge, one would never know the struggles and triumphs in a person’s life that made them into the person we see before us. These individuals would remain a 2-dimensional task item on a list of to-dos.

The work of a care team, from the CNAs to the Life Enrichment team, to the doctors, is fast-paced. Many are often overworked, having limited time available to spend with each resident. They fear HIPPA and the Ethics boards and use it as an excuse to avoid becoming relational with a resident. (If you are working within your scope of practice, and are not sharing the information with others, you are okay.) It is the sad nature of health care. I must ask the question though, if you don’t take the time to become relational with the individual, to really get to know them, beyond a medical chart, beyond examining their belongings, can you really care for an individual properly? Do you simply prescribe medications and complete tasks that you masquerade as care? Do you see them as a burden because they will not play bingo, and then force coloring books on them so that you may fulfill your team’s engagement quota? Or, do you care for the person at this moment, in this moment, and work to improve their life? How can we make the time to SEE the person, to become relational, to provide care that is directed by their interests, needs, and desires? How can we change the way healthcare operates, transforming this “machine” into a community, one that is constantly willing the good of the other? Isn’t that what we are all seeking anyway? Isn’t that what pulled us into the work we do in the first place?

Each person we care for has lived a dynamic, complex life, one that is still evolving, growing, seeking. The chart, the words of our co-workers, and the objects in a room can help us crack open the book, but it hardly tells us the story. Find the time. Make the time. Engage. Seek to know the depth of a life.

A Bluetiful Life

A few weeks ago I was introduced to the founder of Top-Notch Teams, Allison Lazicky, by Mindy Bolton of Playscriptions. During my conversation with Allison, she asked me if I would write a blog post for her site on the topic of, “Life is Bluetiful,” that would join a series she started back in September. When thinking about the topic of “Bluetiful” a play on “Beautiful” my mind spun in a thousand different directions. Life is Bluetiful in so many ways, in the funny, in the serious, in the sad, in the joyful. I was eventually able to slow down the spinning mind, put pen to paper (or rather hands to keys), and wrote the following. I hope you enjoy. I hope it causes you to ask when your life is Bluetiful. Head over to Top-Notch Teams’ website to read the other posts in this series.

My Life is Bluetiful when my crazy, frizzy, curly, auburn hair behaves. My Life is Bluetiful when I have skies of my feet or a racquet in my hand. My Life is Bluetiful both when I have the house to myself and when I am in a home filled with people. My Life is Bluetiful when above 2,000 feet or in the middle of a lake. My Life is Bluetiful when cheese fills my fridge. My Life is Bluetiful when hiding in the garden. My Life if Bluetiful when sitting in front of a fire on a cold winter’s night with family and pup by my side. My Life is Bluetiful when a book is in hand that I refuse to put down. My Life is Bluetiful when I survived a summer’s day without getting burnt. My Life is Bluetiful when I remember the password for my account. My Life is Bluetiful when sleeping with the windows open for the first time in the spring.

I have spent my life seeking the Good, the True, and the Beautiful… um, I mean Bluetiful, and I seek is still.  As I reflect now, all of life is Bluetiful. The messy and the organized. The imperfect moments and the near perfect joys. The anticipation and the arrival.

Life is Bluetiful when a wave of peace washes over us in the middle of a storm. Life is Bluetiful when a wall of sound hits us while at a choir concert, better yet, when we realize we are that wall of sound. Life is Bluetiful when we are allowed to have recess as an adult, to play and laugh so hard our stomach and face hurt for moments long after the silence has returned. Life is Bluetiful when we recognize the gift of a moment while still in the moment. Life is Bluetiful when we are seen and heard for who we are and striving to become. Life is Bluetiful always when we are seeking it, when we are ignoring it, and when we despise it.

A Bluetiful life is one well lived, filled with family, friends, purpose. When sounds of music, laughter, and the voices of those we care for fill our hears and our hearts with joy. When looking at the sky, or the ocean, or in our loved one’s eyes, life is Bluetiful.


You can follow Allison’s work by visiting:

Top-Notch Teams’ Website is

Top-Notch Teams’ Facebook is


As well as Mindy’s work:

Playscriptions’ Website is

Playscriptions’ Facebook is

To Live a Dynamic Life

You cannot speak wishes of a Happy New Year without resolutions coming to mind. They are linked and inspire a sense of a better life each person is seeking to create for themselves and their family. These resolutions frequently are about appearance. They are made with hopes of having a house that is organized like that of a magazine shoot (or would it be more relatable to say Pinterest board), and they are made so that we, our bodies, might look a specific way, from the way our hair is done, to the percentage of body fat we carry. It is about beauty, and all too often outer beauty, social status beauty. While there is nothing wrong with wanting an organized home or a healthy mind and body, in fact, they are quite necessary, our resolutions fall short and put back up on that pedestal, youth and the young. These resolutions come with the impression that we will live a full year, and that life is still young and many decades are in front of us. This is not always true. As I have shared my thoughts on resolutions with others, their responses only dig the anchor deeper, as I am told I am, “acting a bit like a crotchety old lady trying to beat up the world we live in today.” We see resolutions, growth, and health only for those who are still living within the first 2/3rds of life. Never have I heard anyone ask someone who is older if they have made their New Year’s resolutions yet. Or, ask them how the resolutions are going at the end of January when most of us have long given up or moved on from our own. Some of this could be that with the wisdom only gained through age, they are beyond resolutions and don’t need them. What I think has greater accuracy is that this is yet another way our society has put a negative image on aging, a word that is moving closer and closer to the “Words That Are Inappropriate To Use” list. There are thoughts that because someone is old, they cannot make resolutions for themselves, they could not possibly think it is realistic to grow and improve their lives all because they could not keep up with the latest fitness and diet trends. We have too many negative images of aging for me to believe our society thinks otherwise.
While I am in fact young, and on paper, I do have decades to live, I work with many who are not young or don’t know how many more breaths they will take, and don’t know if they will make it to tomorrow. Some of these individuals have given up on life, others are trying their best to get up each day with a smile. When I have asked the question, “Do you make New Year’s resolutions?” I find they don’t make resolutions about having the perfect home or the perfect body. They make resolutions about trying to improve their outlook on life, or staying active, social, and staying connected with family, or finding ways they can continue to learn. In listening to their resolutions we learn how to find joy in the imperfection of life, and how to have hope through fear and the unknowns. So, as loved ones, as caregivers, as medical and non-medical professionals, as therapists, as creative arts therapists, artists, and community members, our resolutions this year, and all the years to come should be this:

This year my resolution is to live a joyful, dynamic, peaceful, creative, and giving life. To help others do the same regardless of their specific challenges, dreams, age, or time left on this earth. Regardless of the presence of dementia, or the struggles of caregiving. We can do this. To live a life seeking the beauty and the good in one another, and in ourselves. Our resolution is to love, to be hopeful, to seek the Truth. To judge less and dream more.

This resolution is ageless and looks more at the beauty of our world, our inner self, our society, of life itself, and less at the appearance of our home and our bodies. Here is to another year! Another Breath! Another moment to live our dynamic lives.


As always, we are a community of diverse individuals, each one of us has our own experiences with aging, health, community, and dementia. This is my experience and just one experience. If you would like to share your story of dementia with us by writing a blog post, commenting, or sharing directly with me your experience please feel free to do so. The more people that speak up and share, the greater our knowledge can expand.


The Unexpecte​d Gift

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.

Thanksgiving With Your Loved Ones

Happy Thanksgiving! As we prepare our tables, our turkeys, and our homes for our Thanksgiving celebrations, might we take a moment to prepare our day for those who have dementia. Holidays, especially the kind with lots of movement, people, and conversations, can be more of a nightmare more than a celebration for those living with dementia. I have adopted a list from Purple Table Reservations as a guide for the season to come.

1. Have your meal at noon, or earlier in the day instead of a late meal that might happen around sundown or after dark.

2. Create a place in your home where your loved one (and even yourself!) can escape to during the gathering. Keep it as a quiet place, one for sitting and resting or having a conversation between two people without the surrounding noise.

3. Make sure that all attending are aware of the individuals dementia and that their loved one may not act as they have known them to act. Be careful to still make sure the individual’s dignity remains.

4. If you like to have games and activities going, included your loved one in selecting and participating. Encourage all generations to interact with each other, and make sure that there is a way for all to participate.

5. When selecting your playlist, play songs that are orchestral or instrumental instead of those with lyrics. This will decrease the background noise that can cause confusion and make it difficult to participate in conversations.

6. Think about how you are setting the table and serving food. Buffett or server style is best, and try to only put out what you need at that moment when it comes to plates and silverware. This helps direct them to what they will need to use for each course/dish as well as help them select the food they enjoy instead of being overwhelmed by the choices.

7. If you are traveling, allow extra time for travel in addition to accounting for traffic.

8. Remain calm and patient. Your loved ones will pick up on your emotions and reflect them back to you.

9. Make sure there is enough walking room for your loved ones to get around the table and other areas where you will be in the house.

10. Know that if you ever need help the Alzheimer’s Association has a 24-hour helpline that can help you. 1.800.272.3900

This is a list of suggestions. Only you will know the details of how to best celebrate this holiday season with your loved ones. Take pictures, write down stories, and enjoy the moments you have.


Happy Thanksgiving!

World Alzheimer’s Month Recap

Over on the Facebook page, I have posted resources and things to consider when it comes to living well with dementia. Below is the recap of this past month.

Day One: “When you have met one person with dementia, you have met one person.” This is frequently said by those working in dementia care and is the key and first step to erasing the stigma surrounding dementia. A dementia diagnosis does not override the person, who they were, their life, their stories, their joys, their love, their being, and especially their worth. Each individual you meet will have a different journey, each care partner, theirs.  Everyone will have their own struggles, needs, and losses. They carry with them the life they lived and their desires for the remainder of their life. When you have met one person, you have met one person. They are more than a diagnosis, a chart, or a tag on a wheelchair or nursing room door. They are not people you can clump together the way you might items in your home. They are human, still needing love and respect, still giving love and joy. Let’s include them in on their care.

Day Two: Memory Cafés are a wonderful program that both the individual with dementia and the care partner can do together. Use this directory to find a café in your area and more about the experience.

Day Three: Remember that dementia is not just for those over 65. There are individuals who are diagnosed in their 20s, 30s, 40s, and 50s. They are often underserved as a result of being too young to move into many care communities, yet can no longer live in their home. Or, they are brushed off by doctors, medical care partners, and social care partners, for the reason of, “Dementia is only for the old.” This statement, however, is false. What can we do? Open our hearts and time to be there for these individuals, encourage programs and care communities in our cities to welcome and care for those with dementia regardless of their age.

Day Four: Ice cream! As we close out this summer season, how could I not mention ice cream? The power a dish of ice cream has is remarkable. It is simple. It is enjoyable. When going to visit a loved one with dementia we are often nervous about our visit, worried what type of day they are having, wondering if we will we sit with great conversation or in great agony? By arriving with their favorite flavor of ice cream, you instantly have a joy-filled moment. (It also can aid in sundowning, but more on that at a later date.) I encourage you to try it sometime. Arrive on a Sunday afternoon for a visit, with ice cream in hand and suddenly you have something to share, something that doesn’t require great conversation or effort, and one that doesn’t require them to be having a good day or a bad day. Sitting together with your dish of ice cream will become that emotional memory of, “I had a good day today” and that is one of the best gifts we can give someone with dementia.

Day Five: The Purple Angel campaign. If you look at this page’s profile photo, that is the Purple Angel. The Purple Angel is a global program with the goal of building dementia-friendly communities by going to local places of business, providing a short dementia training, and in doing so helping those with dementia and their care partners continue to live fully, with decreased stigma in their community. It, of course, is so much more than this, so click on the link and learn more about the great work of the Purple Angel campaign. Discern becoming a Purple Angel Ambassador yourself.

Day Six: A new resource I discovered yesterday, AlzAuthors. They are a connection to the books written about dementia as well as authors themselves. Linked is their website. They also have a Facebook page under Alzheimer’s and Dementia Resources, and a Twitter page under AlzAuthors. And, they were the guests of Alzheimer’s Speaks Radio this week,…/the-alz-authors-share-their-stor… hosted by Lori La Bey, another wonderful resource in dementia.

Day Seven: Bingo! Did anyone shut down when I said that word? I often do. Bingo is a popular program for care communities and is seen as a heavy hitter, bringing lots of people out. But, do they come out because they love the game or the company? I don’t believe we should throw the bingo cards in the trash, however, we cannot call it Life Enrichment. It is an activity, that can become a launching point for other programs. If you work in a care community, before you put bingo on the schedule for next week, find out why people come out for it? Do they love the game? Or do they love the company? Look for a longer post about this controversial programming subject on the website later this fall.

Day Eight: Teepa Snow’s GEMS. Teepa Snow is a name you will hear me bring up often. Teepa is one of the leading dementia educators in the United States and has developed a training program that breaks down the stages of dementia into 6 segments. It is a training you can take time and time again and learn something new each time. While she is not the only voice in dementia education, she has created the best overview training programs. Check it out and you will be amazed at how much easier it will help you relate and become relational to those with dementia.

Day Nine: I sometimes get asked what questions to ask when touring care communities. I came across this list today that I believe is a good start. Just like when you are touring college campuses, you cannot trust the pictures and brochures to be 100% accurate to the reality of life in the assisted living. So ask questions, both of the administration, and of yourself and loved one. In the case of dementia look at what the big picture care plan is, and how they might transition within the community. The fewer the moves the better.

Day Ten: Museum Programs. Across this country, from the Frye Museum in Seattle, to SPARK! in the Wisconsin/Minnesota, to the Connect2Culture arts affiliate programs in New York City, there are ways to see the Great Masters of art, music, theatre, and dance. I encourage you to see what is available in your area and encourage programs to form if there is a void.

Day Eleven: Language. Caregiver or Care Partner? Care Community or Care Facility? Elderly or Older Adult? Suffering from or Living With? The language we use when talking about dementia and dementia care does matter but doesn’t always align with what is perceived to be politically correct, or what we as those without dementia often use. I have over the past year asked those with dementia (as well as those over 70) what they prefer. Here is what I heard: Caregiver or Care Partner, it doesn’t matter but family and friends are what they seek. Care Community and Home to describe Assisted Living and Nursing/Skilled Care Homes. Elder or Elderly is often preferred. For some the reason was that it indicated that they are wise, respected, filled with stories of life. Finally, Living with dementia. This phrase won with everyone. This is what I have been told, I encourage you to seek and use the language that those you care for prefer, not necessarily what the industry tells us to use.

Day Twelve: A phrase often spoken, and frequently forgotten, “We work in their home. They don’t live in our workplace.” For those of us who work in care communities or as in-home care partners, our job takes place in their home, and so while we still have a job to do, we are also guests. As guests in their home, there comes a need for a level of respect, dignity, and care for the individual’s life and home.

Day Thirteen: Visiting someone with dementia. This link will lead you to what I find to be a great list of tips for visiting someone with dementia. It is not easy, but it is crucial that we continue to visit, support, and love those with dementia.

Day Fourteen: Dementia Raw! Some of my favorite people to collaborate with in dementia care are theatre people, those who have an understanding of improvisation. I have already spoken about the need to be able to say, “Yes, and…” and Dementia Raw is a direct resource that can help you better understand and fine-tune this crucial skill.

Day Fifteen: Inspired by Mindy Bolton of Shay’s Way, Intergenerational Relationships, and Programs. The post I wrote earlier this week touched on the importance of becoming relational with those older than us regardless of if they have dementia or not. There are programs and research, and very academic articles published regarding this idea out there. As always, these are needed, but it does not need to be complex. Start by visiting older relatives, join church ministries that might serve the older adults in your faith community, volunteer at assisted living or nursing home communities, or take time to have short conversations with your neighbors who might be a generation or two older than you. You will change both of your lives by doing so.

Day Sixteen: CaringKind. For those of you in the New York area, this is a direct resource, providing support groups and other forms of assistance. For those of you who are not in the New York area, it can be a place of education and guidance. As a member of the Junior Committee, I can speak to the importance of this organization and the great impact they have on the community in terms of research, support, and education.

Day Seventeen: Fox Valley Memory Project. If you are in the North East Wisconsin area, the Memory Project is a fantastic resource that hosts multiple Memory Cafés, outings, as well as being a place for support and education.

Day Eighteen: Building a Care Team. When living with dementia it is important to build a care team that can help you with specific aspects of life. Here is a list of people that others have informed me are helpful. Take a moment to think about what you would find helpful and who you might need on your care team. Know that this will be different for everyone. Members of this care team can be for the individual with the diagnosis and/or the family.

1. Family, Friends, Community members that you can count on for being there for you and your loved ones socially, emotionally, spiritually.

2. Neurologist

3. Geriatrician

4. Palliative Care Doctor

5. Elder Law Lawyer

6. Nurse Practitioners

7. Physician Assistant

8. Local Organizations

9. Artists/Teaching Artists

10. Counselors/Creative Arts Therapists

11. Spiritual Director

Day Nineteen: Artists, Creative Arts Therapists, and the Arts. The thread woven through all of dementia care is the arts and the artists at work. These artists may be teaching artists, art education students, professional or amateur artists, creative arts therapists. All of them play a role individually and collectively in offering a quality of life and life enrichment to those with dementia and their care partners. Then there is the art itself, making the art, viewing the art. Research exists proving the importance and impact of art and health, art and dementia. As always this is good and needed, and must continue, but not everything in dementia care should be medicalized, researched, and analyzed. Sometimes you need to be an academic, and sometimes you just need to create, experience, feel. That is the arts.

Day Twenty: TimeSlips. My favorite type of story prompt when using TimeSlips happens to be impressionistic art. There is movement, a story to be told by following the brush strokes. It opens the world. We are no longer limited to creating a story but allowed to have an art history lesson as well, leading further to the creation of the individual’s own art. There are endless ways to use the TimeSlips method. Every time I facilitate a story with a different group or individual I test the waters, see what interests them and pursue that spark. If you have not looked into this process, or have gone through the training yourself, I highly encourage you to do so.

Day Twenty-One: World Alzheimer’s Day.

Day Twenty-Two: Alzheimer’s Poetry Project.

Day Twenty-Three: Individuals with Dementia. People like Kate Swaffer, Norm McNamara, Wendy Mitchell, and anyone else that has dementia and are sharing their story, helping those of us without the diagnosis better understand, improving our understanding how and where they need us. These individuals are the best resource we have. And it is not just those in the spotlight, but anyone and everyone we encounter with dementia.

Day Twenty-Four: This page, Bonae Memoriae. I hope that I may be a resource for you as well, be it through coming into your home or community to facilitate programs, lead a training session, lead a memory café, help you develop programs that you can lead, or simply act as a sounding board. I am here.

Day Twenty-Five: Recognizing the difference between curing dementia, and improving the quality of life. Frequently when I share the work that I do I get a response of, “Does that prevent the decline of dementia?” There is the desire to make everything we do/the only thing we do in working with dementia a cure, cause a change in their decline, in their brain. This happens with everything from the therapies, to activity and life enrichment programs, and even the meals served in care communities. I am fascinated by neurology and the work that does impact the brain, BUT, we are leaving a large hole in helping those with dementia when we look purely at the medical and ignore the spirit and life of the individual. Find freedom to do something simply because there is joy in the time together, in the activity.

Day Twenty-Six: BrightStar Care. Companies such as BrightStar Care can help with care when your loved one is still living at home and go above and beyond basic medical care. In my experience with BrightStar, I have come to find they care deeply about becoming relational with those they care for and the individual’s family. When selecting care providers, it is important that you find one that you are comfortable with and trust.

Day Twenty-Seven: The Caregiver Prep. I came across this page today and what stood out to me first was that it is not a doom and gloom only list of tips. It is clear, a little hopeful, and I believe to be very helpful. Take a look.

Day Twenty-Eight: Selecting a Care Community. When it comes to selecting an Assisted Living or Nursing Home once living at home is no longer the best place there are many things to consider, from cost to type of care. This list and guide have been compiled by the Alzheimer’s Association.

Day Twenty-Nine: Telling children about a dementia diagnosis. Out of the UK comes this guide for how to tell your children about a loved one’s diagnosis of dementia.

Day Thirty: Aging in Place/Universal Design. When staying in your home, deciding that in-home care is the best decision for you or your loved one with dementia, modifications to your home may be a good idea or even needed. This is a process you may start at any time regardless of age or diagnosis and is something you might want to talk to your contractor, remodeler about if you are in the process of building a home or remodeling your existing home about it. I highly recommend having a Certified Aging in Place Specialist (CAPS) or Universal Design Certified Professional (UDCP) work with you as your designer and/or remodeler. Hiring a CAPS/UDCP to help you with your remodel will ensure you that they will have up to date information on the appliances, door widths, tub and shower options, grab bar information, color and lighting ideas, and so much more, to make maneuvering around the home easier and safer. If you are in the Appleton area, Distinctive Renovations might be a company to consider. They are members of NARI (National Association of the Remodeling Industry), between the two owners Gary and Susan you have talented designers who are, between the two of them, both CAPS (Gary) and UDCP (Susan). Distinctive Renovations is also the only Purple Angel Design and Remodel firm in North East Wisconsin.

What Dementia Can Not Destroy

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?

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.



Continuing the Conversation

In continuing our conversation about Lewy Body Dementia (Dementia with Lewy Bodies) I would like to share this article I recently read about this form of dementia.

My Personal Story with 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.