It all started with a prayer. I had been worrying about what I would have to sacrifice in my busy schedule. What being a care partner to my mom was going to take.  I feared my church life, my YMCA life, and my home life would be rearranged, diminished, or removed in order to keep my mom safe, fed, and satisfied. The endless phone calls to solve the problem of the moment, to find the missing item, to review what had already been said were not enough. Making the 30-minute drive multiple times a week in addition to my vigorous schedule was wearing me out. Something was going to have to change. And I feared that it would be my schedule and me (in fact, I knew it would be my schedule and me). I just wasn’t willing to let it all go. Yet. To get my head and heart around those changes required some level of motivation, inspiration and commitment. Some move of God. Faith.

So I went forward in the Sunday service to the altar to pray, where prayer partners were waiting to join our petitions. I chose Melissa, a friend, a woman of faith to trust and hear my concerns. I whispered in her ear that I was conflicted about the growing needs of my mom, that in order to truly be helpful to her, I would have to back off my other activities that I held dear. I asked for divine guidance, a willing heart, and a path to follow. 

As Melissa lifted my struggle to the Lord, a peace began to settle over me. The conflict and chaos that I had been living began to ease and I had a vision that seemed to make everything all right.  In my mind’s eye, I saw myself sitting on the couch in my mother’s den. The dark paneled wall behind me was lit by light streaming in from the window over my left shoulder. All was quiet. I was calm. And I was writing.  

One of the things I was currently doing was writing – just little vignettes about people I knew, spiritual lessons from my dog, everyday life seen through the lens of faith – things like that. Seeing this vision gave me a fresh perspective on what might be a blessing – an alternate plan – perhaps God’s plan, instead of an inconvenience and a diversion from my life.  It began to dawn on me that sacrificing the plans I had and attending to the need right in front of me was the right thing to do. Tearfully, I told Melissa what I had seen in my vision. I felt like the decision was made. So I walked away from the altar feeling empowered to trim down my schedule and turn my heart toward my mom. Trusting that everything would work out. 

That was 2008. Today is June 21^, 2019.  The Longest Day. The day people are doing something to commemorate or honor a person with dementia. The day the book, Dementia-Friendly Worship – A Multifaith Handbook for Chaplains, Clergy, and Faith Communities goes on sale, on amazon.com. The day I am a published author.

Because I chose the path of caring for my mom, the desires of my heart are realized.  

The years we spent together after that day at the altar were full of trials, unbelievable challenges, sorrow, uncertainty, and grief. However, the further we went, the responsibility I felt for my mom began to turn into devotion and love. The stories I now have to cherish and share came from that fork in the road that led us down a path of hope, faith, and trust.  And have ended up in a book. Amazing. 

Jeremiah 29:11 (NIV)

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Days 2 and 3 of recovery are getting better as I pursue healthy choices to mend this broken metatarsal bone. My new best friend is Caroline Jordan who has a youtube channel devoted to helping people with a “boot”  to exercise safely and eat proactively. So far, I have followed 3 of her videos and find them to be challenging without involving my foot. I’ve also adopted some of her nutritional ideas like adding bone broth to my diet along with an Apple Cider Vinegar Detox drink that I just happened to have the ingredients for.

To enjoy this beautiful day, I exercised outside on the deck, followed by an aerobic bike ride around the neighborhood.

I decided to stop and spend a few minutes in the quiet under a sprawling oak tree by Dog River. Lying down on a wooden bench, the steady breeze kept me company as I looked up through the tree branches. Hanging Spanish moss swayed in the wind like long grey beards while occasional waterfowl passed overhead against the backdrop of puffy white clouds. I took this time to do my Examen Prayer. I am not Catholic but I enjoy this daily practice. The APP instructs me to bring to mind my favorite way to be with God. Today, it’s lying still in this beautiful spot. I think about all that I am thankful for and consider what I hope to achieve today. Leaving this place takes willpower, but it’s time to get on with the day.

On the ride home, evidence that God’s creation shouts His praises. The blanket of winter is thrown off. Praise the Lord, Spring has come to South Alabama!

 

After a vitamin-rich green protein smoothie for lunch, I go to work sowing caladium bulbs along the sidewalk, an annual practice that always provides beautiful results. Satisfied that I have achieved the goal for the day, I go back inside to my handy laptop, where I spend the rest of the afternoon.

I heard from my friend, Brian LeBlanc today who had some exciting news. We had a good time talking about how the unexpected bad things in life can turn out to be a good thing in many ways. Here’s the good news. You can read a copy here.

I got so involved on the computer and talking that dinner time arrived too soon. I like to have dinner ready when my husband, Jeff comes home from work. So instead of cooking, I made a cold salad heaped with lots of healthy toppings, including yeast flakes. Thursday’s dinner was pretty good, too. I heated a little bone broth before dinner to help build my bones.

 

Today the mailman brought a thoughtful note from my friends, Don Wendorf and Lynda Everman. Lynda is responsible for seeing that the Alzheimer’s USPS semipostal stamp was issued and available for purchase. Proceeds from this stamp will go to the NIH for research. I hope to receive more letters with this stamp paying the way. It’s the only stamp I plan on using from now on.

It’s a comfort to have you along on my journey to wholeness. I’m making the best of a detour and discovering a better way from here. Keeping a grateful heart and positive attitude is essential to the healing process. Thanks for reading and being a part of my prescription for wellness.

 

 

 

 

 

On Thursday, a friend handed me this slip of paper saying, “This is for you.” I was standing in front of the mirror with wet hair in the YMCA locker room and asked if she could read it to me.  She said no. That wasn’t really a surprise as she attends the YMCA Special Pops day camp and may very well not read. So once I had my glasses, I read these words. If we don’t come apart and rest awhile, we may just plain come apart. I thought to myself this really could be a message directly for me, but I didn’t expect how true and quickly my coming apart would occur.

The next morning, first thing, I was unloading the back of my car to make room for luggage and conference supplies that I would be delivering later that morning. On my third trip to the storage room, I slipped on the cement stoop and fell into the room, hands full with no way to catch myself. I landed on my bicycle with all my weight on the edge of my left foot which was only protected by a soft slipper. That foot landed on the sharp cement edge of the stoop.

Once I realized that my morning plans had been apprehended, I consulted with my husband, who was preparing to go to work. We decided that he would take a sick day and help me carry out my plans as I was organizing a conference, picking up a guest at the airport, cooking dinner for 7 people and would have 3 overnight guests. The next morning, I was to arrive ready to emcee a day-long conference that had been in the making for months. Miraculously we were able to see a foot specialist in short order, get an x-ray, a broken metatarsal diagnosis and fitted for a boot. We picked up the original plans for the day and carried out everything without missing a beat.

Now that the dust has cleared, I am faced with the reality that my usual routine of working out every day at the Y will endure some adjustments. For many weeks. Or months. What is almost an obsession of going to spinning, body pump, pilates, swimming and teaching my class will have to be evaluated and modified. My daily visits to the Y not only provide exercise for my body but social interactions for my spirit. I want to avoid isolation and will be intentional about human contact.  I have a week before my exercise class starts that I teach so I decided today to view this period of healing through a lens of expectation and enjoyment.

I began my day with the Daily Examen App. This practice of contemplation helps me tune into God’s love for me, to offer gratitude, ask for discernment, seek forgiveness, and set a resolution for the day. Following this, I fed my impatient dog and walked out on the deck. The birds are flying, the sun is shining, the grass is turning green, and the flowers are beginning to bloom. I had my breakfast outside and made a list of all I wanted to accomplish today or maybe this week.

I started with a commitment to continue to exercise at home. Laying a towel on the carpet in a sunny spot, turning on some uplifting music, getting my weights and bands, I spent the next 45 minutes doing a variety of stretching to remove the aching muscles developing from my new hobbling gait. Next, I got ready for being outdoors and got out my trusty bicycle. I put a few items in the basket, my water, spare shoe for walking around (I am wearing a boot on the broken foot and a tennis shoe on the other which is fine for bike riding but if walking, I want to have an even shoe height so I need my Dansko sandal) and my little bag holding my phone, glasses, and keys. I decided to wear my helmet for extra safety since I am somewhat disabled and alone. I head down the driveway with the resolve to take my time and enjoy being out in the neighborhood on this sunny, warm morning. I determine to “smell the roses” on the ride. This required stopping every now and then to take a picture to share with you. These camellias are blooming in our yard today.

I rode down the street to a dead end area near the river. In the deep grass, I spot a strange object. Upon further inspection, I find this snapping turtle snuggled into the grass. Another photo op.

As I continue enjoying my morning ride, I heard a dog barking in the backyard of a neighbor friend. I rode by his driveway and found the garage door open. Obeying my morning resolve, I got off my bike and knocked on the back door. He came out and we had a short chat. I’d been meaning to drop by for months since his dear wife died, leaving many of us heartbroken. He had to be on his way so I took a photo and my leave.

I continued along the way, keeping my eyes open for simple pleasures like what I think is a quince bush in full bloom.

I continued to ride the neighborhood for a full hour. I returned home to consult the list I made during breakfast. I prepared to go to the post office to mail a book to a friend,(discovered this branch needed to be urged to advertise their new semipostal Alzheimer’s Research stamp), drop off a borrowed music stand at the church, return library books, drop off conference evaluation forms at another church, and stop by a new friend’s house that I met at the conference to give her some books. Which I did in short order. I’m glad I saved the visit with the friend for last because what I expected to be a few minute visit turned into a 3-hour visit. I hope it will not be our last. We had so much to share. Our caregiving stories which she is actively living, our food choices – she gave me fresh, organically grown turmeric and some of the same, dried and ground and shared recipes and healthy eating philosophies. We both missed lunch because surely I would be leaving any minute. I hope I didn’t wear out my welcome. I do know what it is like to be at home with a loved one, feeling isolated and alone. So I think it may have been as good for her as it was for me.

On the way home, I decided to stop at Costco for strawberries and maybe that cookbook that was just recommended. Wearing the cumbersome boot on my foot, I  tried out one of those electric carts to make my shopping easier. The greeter membership card checker guy showed me how to use the handy vehicle and took a photo before I entered the store.

I decide to make this as fun as possible so off I go. It doesn’t take long to master the controls and soon I am navigating the large warehouse with ease. With my bag in hand, I am able to get my few groceries to the car without any problem. Next stop, the Costco gas station. Then home. I grab a protein bar to quench my appetite and go outside onto the swing in the gazebo for a phone call with a friend who is dog sitting at her son’s house in Huntsville. We chat until suppertime.

This is an account of the first real day of changes due to the broken bone in my foot. I’m treating it like a vacation. Although I have speaking commitments ahead and the start of a new session for teaching my Strength Through Recreation Exercise Togetherness Caring and Health (STRETCH) for breast cancer survivors class, I have a new perspective and determination to learn what I can from this bump in the road. Apparently, I got the message loud and clear by being forced to slow down. I need to rest awhile and come apart since I have just plain come apart. Today was an easy day. I look forward to tomorrow.

” ‘Trust in the Lord with all your heart and lean not on your own understanding. In all your ways submit to Him and He will make your paths straight.'(NIV Proverbs 3:5,6).”

 

 

Supervising a building project was not on my to-do list. But I did want to see that dream of a pergola with a comfortable swing materialize in my backyard. The deck was rotting and I had stepped through decaying boards more than once. So the project began and I stayed home to be on hand in case any problems arose. Watching the progress through the window, I took the time to work on my online dementia advocacy activities.

An email came explaining several mini-grants were available from the Central Alabama Aging Consortium in Montgomery to expand dementia friendly communities. The idea was to foster increased awareness in Alabama of the growing dementia incidence and initiate and conduct sustainable programs that offer information to assist caregivers and people living with dementia. The Dementia Friendly concept is slowly growing in the United States and I was excited that the movement had reached our state. I forwarded the information to my friend, AL Cares Coordinator, Della Sanchez at the Area Agency on Aging. I knew she was busy already but this was another dream that wouldn’t leave me alone. I thought, “If I could just find someone who wanted it as bad as I did, maybe we could work together.” She sent back the message suggesting, “You do it.” I thought, “Okay, maybe I should try.” But I’ve never written a grant. Where do I go for help? I began researching the Internet for ideas and talking to people who had successfully written and won grants.

With the construction work happening outside, I began my own construction on the computer. In my seat at the kitchen table, I built a plan to promote dementia friendly practices in faith communities. After all, the church seemed the ideal place to start. What better place could a person go to find support, encouragement, and understanding when facing life with dementia? My proposal was to educate church staff on how to recognize dementia, caregiver stress, be able to create an environment that was welcoming and inclusive and have helpful resources on hand. Culminating these efforts would be to offer a Memory Café, providing a safe and understanding social event for people with dementia and their care partner.

Two days before the grant submission deadline, I sent the draft to Mrs. Sanchez at the Area Agency on Aging. She forwarded it to the director of the AAA, Julie McGee who responded back with her own proposal. She advised that I would not be able to qualify for the grant as an individual. She had encouraged and enabled my efforts in the past so I wasn’t completely shocked at what came next. In her gracious, supportive way, this powerful woman offered to submit the grant application, by making a few small changes, thereby adding the weight of her position and the structure of her office. I began to think we had a real chance at qualifying for this grant.

One might wonder why would I go to so much effort to talk about dementia. The answer is simple. Because dementia has a way of changing the lives of everyone it touches. As a caregiver for my mom and later my aunt, who both lived the last years of their lives with dementia, a passion for helping others navigate that journey grew into advocacy and action. The valuable lessons I learned along the way were too precious to keep to myself. Although caregiving requires strength, courage, and perseverance, we found a way to keep hope alive. We discovered that our journey was one of faith and love. This took time to develop but the further along we went, the experience taught us to anticipate change and face each challenge with confidence. We found joy in helping others, giving us purpose for our journey. We walked together to the very end of both my mom’s and my aunt’s life and parted at heaven’s gates. I determined to take what we had learned and continue to advocate for those who were following behind.

The submission deadline was met. We waited. The results were two weeks away. While shopping in Costco the phone call came that we’d been waiting for. Moving over to a quiet corner of the store, I listened to the results. The voice said she wanted me to be the first to know. We had gotten the grant. In the time it took to hear the good news and wipe away my tears, my life changed.

Reality set in. Now I was responsible for following through with this homespun plan. The agreement was clear from the beginning. The Area Agency on Aging would submit the grant, but I would do the work. Based on the Dementia Friendly America model, this was a grassroots operation and I would need help. Fellow advocate, Jerry Horn had already lent his graphic art talents to the cause so we began to talk about creating a brochure. I consulted with Mrs. McGee’s wise administrative assistant, Nancy Bledsoe. This was an unexpected relationship that became my lifeline. She helped me with everything. She advised how I should keep track of my activity and shared her organizational methods. We worked together on spending the budget – what to buy and the channels that it would take to make purchases. She coached me on how to find presentation opportunities. This took several months to carry out. Meanwhile, I began writing a PowerPoint Presentation (PPX) to convey our message and compiling folders to handout that would not only inspire and educate our faith communities but also offer local resources.

Finally, I was ready to start finding churches that would be interested. With brochure in hand and in PDF ready to share, I made phone calls. I sent out Facebook invitations to alert the dementia community of this opportunity. Nothing was forthcoming. This became a little worrisome, as we had proposed that 10 churches would invite me to talk about becoming dementia friendly by the end of September. And August was almost here. I began to look for any opportunity. My first approach was to ask for help and consultation with a church administrator. We met and after spending two hours talking, he asked for a copy of my folder (at this point it was a rough draft). He made his own copy and I left. I documented the meeting and counted it as number 1.

My next opportunity came by way of the Alzheimer’s Association to speak to our local National Association of Retired Federal Employees (NARFE) group that wanted to know more about the association. As the Alzheimer’s Association Ambassador for District 01, I was happy to oblige. After all, NARFE collectively donates millions of dollars to the Alzheimer’s Association each year and I had a projector, screen, and a rolling bag to carry supplies. So I created a new PPX to talk about what they wanted to hear and wove in what else I was doing. I handed out grant-funded materials and gave out several books.

The next event took place at Westminster Village, a retirement community that offers all levels of care. Upon my arrival posters lined the halls with my photo announcing the event. A tech team helped set up, as people filed in, 41 in all. Several friends from the next county showed up. My ambassador team arrived and helped wherever needed. The smiles and interest on the audience’s faces were encouraging.

By now, my calendar had several commitments secured – two being at my Alma Mata, the University of South Alabama. Going from being a voiceless caregiver to speaking at an OT/PT Conference is a surreal experience. Then I spoke to a Therapeutic Recreation class where, as a student years ago, the inspiration to help the aging population began. And best of all, my mentor, Cathy O’Keefe was present to teach the first part of the class. The students seemed engaged and interested when shown the PPX about activities and life in skilled care that came from my personal experiences.

The next events took place in lovely church facilities: one after a luncheon and another on a Sunday afternoon. Refreshments were set out by the church helpers and my husband was available to run the PPX from the sound booth. My friend, Elisabeth Greene directed the people as they arrived, making sure they signed in and got the proper handouts. For 1 1/2 hours, I talked about dementia, how to prepare, and how to continue an emotional connection with loved ones when living with dementia. We had a drawing for books and some activity ideas on display to share.

Occasionally, I have looked at my ambitious calendar and wonder if I am able to do what I’ve committed to. Then I remember the sight of my back bedroom, which is laden with books, handouts, a printer, ink refills, paper, etc. Folders are stacked up in boxes, along with one box devoted to supplies for the Memory Cafe, which we successfully carried out near the end of the grant period. The happy occasion was held at the Mobile Museum of Art. We had music therapy led by Sonya Atwood followed by art instruction from Elizabet Elliot and Angela King. Refreshments were provided by the AARP. There were 23 people in attendance. Many are ready to return to our next Memory Cafe in November.

By the end of the six-month grant period, we reached and exceeded our goals and managed to speak in front of 173 people altogether. More commitments are on the calendar and I continue to say yes to every opportunity.

The dementia friendly movement in Mobile is driven by the same faith and resolve that sustained us while care partnering. If you have a passion to help create a culture where people with dementia can feel respected, supported and included in everyday community life, now is the time to act. The Central Alabama Aging Consortium is now offering Dementia Friendly Communities Expansion Mini-Grants to people who are ready to change lives: their own and those of people living with or caring for people with dementia. Contact Stephanie Holmes for further information at Stephanie.Holmes@adss.alabama.gmail.com or visit http://centralalabamaaging.org/category/calendar/and learn how to apply.

With our grant completed and more being offered, let’s continue to build dementia friendly communities, offering hope to the thousands who are impacted daily in Alabama.  Catch the vision. We all have a part to play in order to reach all areas of the community. Won’t you join us?

 

Beth Reinert, October 2017Dementia Friendly Project Manager

Dementia Friendly Project Manager

DementiaFriendlyMobile

 

 

 

 

Life in a nursing home can become mundane after many hours of sitting still, day in and day out, while parked in a wheelchair in front of or within earshot of television after the basics of dressing and eating are accomplished, often empty-handed, left to one’s imagination.

As I joined my mother on a daily basis to help pass the long afternoons, we often found ourselves in the dayroom of the wing where her room was located, along with other residents who were also passing the time. Although I was a family member – a visitor – I was such a regular presence, that I felt as if I lived there, too. After all, I was subject to the ebb and flow of activity, while attempting to accommodate where my mother should be in order to receive the care she was scheduled for. If I took her away from her area at the wrong time, she might miss being checked for wet pants or something important like that, so we often stayed around and visited with whoever might be present. Usually, our neighbors from the hall were also in limbo until something might come along to create a diversion – like the ice cream cart or an arrival of a new resident that we were all alerted to over the loudspeaker by the announcement, “Let us all welcome the new admit to, say, the East Wing, let us all welcome the new admit to the East Wing.” This revelation was always met among the residents with head shaking and looking at each other incredulously as we all wondered about the new admit. Once again we were reminded that we were viewed as “admits” without a name. Not people or neighbors, or friends but “admits.” I’m sure there was some privacy policy being followed here but eventually, we would get to know the person’s name. Why not just go ahead and say it.  Just once. But it was never to be.

It didn’t take long to realize that the initial loss of identity would remain. However visible you really were didn’t hinder how routinely you were overlooked. Even though this day room was within sight of the nurse’s station and was adjacent to the hall with staff going to and from, we rarely received eye contact from any of the passerby’s.

So, one day, I decided to test my theory that we existed in what has been referred to as “the land of the living dead”.  I viewed my self-imposed status of nursing home resident with Alzheimer’s disease much like joining a leper colony. We had our own community, removed and distinct from where we once lived. We had suffered the grief of our loss of recognition and position in society, but in this safe harbor, where the promise of care and understanding by the marketer on our original tour of the nursing home was assured, would we have to endure being invisible here as well?

William James’ said, “No more fiendish punishment could be devised, were such a thing physically possible, than that one should be turned loose in society and remain absolutely unnoticed by all of the members thereof.”

We were all in a back hall being given the basics of care but were we seen? Did anyone really care who we were or what we wanted or needed?

I had in my big bag of goodies a package of stick-on mustaches. I often brought in an assortment of potential activities in case the time was right for a game of cards, magazines, watercolors, brushes, a pad of paper and a blue-tooth speaker to connect with my smartphone for endless choices of music that we would use for our own entertainment and for anyone else who might be interested.   So on this particular day, I decided to see if anyone would notice if everyone in the dayroom was wearing a mustache. I was tired of feeling overlooked and rejected and I just wanted to see what would happen. After getting permission from my fellow conspirators, we each picked out the preferred style of mustache and stuck them under our noses – and waited. We giggled and amused ourselves with how we looked and I snapped photos (another breach of privacy but since no one was looking…) Yet, as the staff went to and fro, no one looked in to see us.

After a while, we grew tired of our little joke. The excitement waned as we realized no one was taking the bait. Seeing that one mustache had become something to chew on like a piece of candy, I retrieved them. Our experience supported my theory, confirming that we did exist in our own little world, unnoticed and ignored. As much as we were making the most of our interactions among ourselves, society around us was so busy and focused, that they missed out on our mischief that day and so many more. “Fiendish punishment,” indeed.  The regular feeling of isolation and rejection wears on a person, slowly dimming the light of hope and expectations until the lights finally go out.

I recently heard a speaker tell about “the 90-second rule.” Where staff in a residential care facility were required to spend 90 seconds with every resident they encountered, speaking positively and warmly before they went on with their duties. I needed that kind of encouragement as a family member who was responsible for the welfare of my mother whom I had given over to their care. Not only did I want my mother to feel included, recognized, and valued, but as a caregiver, I needed validation and acceptance as well.

To be fair, I always tried to empathize with the staff, especially the CNA’s.  They were the least educated, the least paid, yet held the most influential position for setting the mood and quality of life for each resident.  No one was more intimately involved with the residents. They did the dressing, bathing, providing all acts of hygiene, feeding, and helping. It was no wonder that they didn’t want to look over at a resident they had already tended to.  Maybe they wanted to avoid the endless requests for something or general confusion about what was happening and “where am I” and “when am I going home” questions. Yet, I was keenly aware of their understanding or lack thereof of how to interact with someone with dementia.  Correcting, disregarding, and speaking about them as if they couldn’t hear was upsetting to watch and I often hoped that by demonstration, things would change.  Perhaps they would see that I could brush my mother’s teeth without any resistance from her and thoroughly clean out her mouth of all lingering food. Didn’t they realize that it took some time and effort to warm up to my mother rather than expect her to perform on command?  Maybe they would see the positive reaction to music instead of promoting the noise from the afternoon programs on television that may have been perceived as reality. I often wrestled at night, trying to come up with a new approach that might build a bridge to improved communications and care for my mother.  Several times I brought in baked goods, provided meals of pizza and fixings for two shifts of care, shared citrus fruit from my tree to show my appreciation and for a time, kept a supply of granola bars and candy in my mother’s side table drawer as a treat for the CNA’s unsung efforts. There were some very nice exceptions that I always hoped would appear at the beginning of the next shift, but the steady stream of staff changes made each day unpredictable.

Despite my efforts, sometimes I was treated as a bother, in the way, or just not visible. Just like the residents, I often hungered for someone to smile at me and treat me like they were happy to see me. So my closest allies became the other residents, those who were lining the halls as I passed to enter and exit the long pathway to my mother’s room. In time, I found ways to connect to residents and staff that would make my life better.  But what about the residents? Would life improve for them, too?

The mustache test validated what I already knew. It is possible to be alone in a crowded place. The greatest punishment is to go unnoticed by society yet with a little intentional effort that can be changed.  You don’t have to have all the solutions to someone’s trials to make a difference.  Sometimes all it takes is a smile, a kind heart, and a listening ear.

My time with our neighbors in skilled care over that 4 year period were some of the richest personal interactions I’ve ever experienced. My hope and purpose in writing this are that in all circumstances, especially for the many who are living with Alzheimer’s disease, we take the time to see one another for who we have been and who we really are now, enjoy one another through those encounters, and embrace the present as the gift it is.

 

 

 

 

My Prayer by Alzheimer’s Daughter

If I enter the darkness that enveloped the women in my family

before me, I ask that you would provide a good caregiver. I want

someone to care for me as a friend, and is empathetic to my plight.

I want someone who will get to know my life history and cherish

the time we spend together.

If I am lost to whom I am, I want my “friend” to tell me a story

about a little girl fondly called Buffer by her daddy, who always

cared deeply for the needs of her family. I’d like to hear about my favorite dog,

Pittman, and how devoted he was to me.

On some days, we may just live in the moment, and spend a happy

day accomplishing the menial chores that we must perform.

Grocery shopping could be an exercise in stimulating the senses,

starting by looking at the pretty pastries in the bakery, then feel the

firm tomatoes in the produce section and take in the lovely sights

of all the other garden varieties colorfully displayed. I’d want to

grind some coffee beans just for the rich scent that emanates from

the machine even though I don’t drink coffee. She’d let me push

my own buggy and be patient with me when something of interest

catches my eye. I could hold on to the buggy while bending down

to peer into the big glass doors covering the freezer sections allowing me

to exercise my limbs without the fear of falling.

When it was time to check out, I would help lift the items from the

buggy onto the conveyer belt, using my bent fingers in hopes of

relief from their constant ache.

My companion would protect me from the questioning eyes of

those who didn’t know what a special person I am. She would

lovingly put her arm around me and tell me how much she loved

me when I tried to go where I shouldn’t. She’d draw my attention

to something I couldn’t resist and I would follow her lead. We’d

move on toward the unknown together and I‘d be happy to be with

someone I could trust and who knew what to do.

The women who cared for my mother came and went. Some

would know just how to enter her world and go along with her as

they reached their daily goals of care. Others just did the

minimum of effort and sat quietly, lost in the crossword puzzle or

handheld device brought along to help pass the hours of sitting,

taking the term private duty sitter literally, as they added up their

weekly paycheck.

My dear grandmother never forgot who I was, even when she was

confined to her bed under the watchful eyes of three shifts of

women, round the clock for several years. We had spent so much

time together in her later years that the sound of my voice and the

touch of my hand on her arm brought back my name to her lips

that she was still able to say aloud. That’s the kind of care I want

to receive. From someone who will see me as I looked in the

photograph taken when I was a young, beautiful woman, full of

promise, fresh and unblemished. Not like the wrinkled, worn,

volatile creature that I now may appear to be.

I want someone who wants to be with me and thinks of things we

can do together that will cause us to laugh and smile. She will

show me, tell me, and sing with me. She will pray for me, include

me and hold my hand. She’ll read aloud short stories and bible

verses that may still be hidden in the depths of my brain. I want to

recognize something and sing that song buried beneath the noise

and confusion that predominates my consciousness.

She’ll look into my eyes and see what I see. Even if my words are

few or gone altogether, I’ll still be there, hoping for a friendly

voice, one that is full of love and compassion. She’ll give me time

to respond to her efforts and I’ll try to find my way to the surface.

She knows that I might be getting lost along the way, and it may

take me a while to begin to understand what is happening. She’ll

know that I do best when things are done consistently; her

sentences are short so I can comprehend and she’ll give me one

instruction at a time. I’ll want her to stay with me. She won’t

leave because I’m here and I’m often in a fog and can’t find my

way.

Please Lord, hear my prayer. If I begin to wander away from who

I was, please seek me out; rescue me back into the flock as you

have done before. Send a faithful servant in the form of a

caregiver to keep me safe until I am in your arms forever.

AMEN

The reminders come at the most unexpected time. Today, it was in the greeting card aisle. Looking for a birthday card for my mother-in-law drew my eye to several cards that were for “Mama”. The perfect card for my own, now deceased, Mama.

I’d never seen a card just for “Mama” before. I would have bought that for her. Along with the liquid soap, lotion, and pudding snacks. Another reminder of how my life has changed since she’s been gone. I didn’t expect to miss her so much. Caring for her brought purpose, a mission to pursue, and love to give. Now, I think fondly of when we would go for a drive together, easy listening music playing, seeing the multicolored leaves on a sunny, fall day – just the two of us, safe and at peace, in the moment. The daily tasks that we accomplished together, navigating life in assisted living, memory care, and ultimately, skilled care instilled a partnership and bond I never anticipated. We met so many new people and made  situational friends because of Alzheimer’s disease. I would not have missed those days for anything. And now that they are gone, I miss the sense of meaning in my life that I felt, at her side.

So much learned, accomplished, endured, and required. It’s like that feeling you have after you have finished a really good book.  You hate to close the book, knowing that it’s over. You may even read everything on the cover, inspect the author’s bio, and hope there is a photo.  But you know it’s finished. So you savor the moment you spent with the characters and the feelings you shared and are thankful for the author’s inspiration.  Reluctantly, you have to move on.  And then, you hope for another really good book to come along.

The following is the talk I gave at my mother’s funeral today, August 13, 2015.  Many thanks to all who attended.

A Holiday, Edward Henry Potthast

You might wonder what is the meaning of a Beach Scene picture in your program and why do I have it up here on an easel. Rather unusual for a funeral. But life experience can teach some unusual lessons when you pay close attention. This painting was involved in a paradigm shift in my imagination that I want to share with you.

This painting hung in my parent’s bedroom for as long as I can remember. It never really meant a lot to me other than the colors dictated the fabric choices and set a beach theme. Not a surprising choice as our family has always enjoyed going to the beach. At age 18, Momma started visiting the seaside when her family moved down here from the north. She and Daddy spent many outings to the gulf when they were courting. Our young family enjoyed the beach as seen in old home videos and photos in our many scrapbooks. Later, we camped in our travel trailer at Gulf Shores and then happily accepted the generous invitations to stay at her sister’s condo in Destin.

So, when Momma moved to assisted living, I chose that picture to come with us to make her room feel like home. It followed us to the next two locations, as our needs increased.

Many of you know how crucial music is when living with Alzheimer’s disease. As Momma’s speech declined, we used music to bring out long-held memories. We often sang old familiar hymns, which became one way I could still hear my mother’s voice. One of those songs is one you probably know that goes like this.

” There’s a land that is fairer than day

And by faith we can see it afar

For the Father waits over the way

To prepare us a dwelling place there.”

 This is in reference to John 14:2 -4 when Jesus Comforts His Disciples by saying

14 “Do not let your hearts be troubled. You believe in God[a]; believe also in me. 2 My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? 3 And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. 4 You know the way to the place where I am going.”

 The song continues:

“In the sweet by and by

We shall meet on that beautiful shore

In the sweet by and by

We shall meet on that beautiful shore.”

 

As I sang that song to Momma last week, I looked up at that picture hanging over her bed. For the first time, my eyes opened to meaning I hadn’t seen before. The sweet children interacting on that sandy spot represented my family at a favorite place on a windswept shore. This was our promise. It had been with us as a silent reminder of things to come. That we would all gather there, renewed and whole, in a land that is fairer than day. I realized that this promise was with us every step of the last six years, even when things looked hopeless as we watched the ravages of Alzheimer’s disease take hold. But by faith we kept moving, expecting God to guide us and He did – right into His loving arms.

Now, I hold on to that promise and eagerly await our reunion with the family. We all love going to the beach.

I hope we will see you there.

I got up from bed last night because I was tired of lying awake. I had things on my mind I wanted to write down. Feeling my way in the dark, I reached the kitchen where my notebook lay open on the counter. I found a pen and took the pad over to a comfortable chair, where I sat in the darkness, trying to see if there were words already written on the page. I didn’t want to write over anything but I also didn’t want to disturb the two sleeping dogs that were quiet in their crates so I went over to a nearby drawer and got out a small flashlight. I sat back down and turned on the light to illuminate the page, and wrote down my thoughts.

 

I sat in that chair a while, deciding what to do next. Having spent the previous day at the bedside of my mother and making decisions with hospice that would guide her final hours, I wondered if I should get dressed and go back to the nursing home now. Maybe that is why I was awake. After all, since she stopped speaking, I have depended on any clues about momma’s care in my own thoughts, feelings, and bodily sensations. Maybe she was trying to tell me something.

 

Instead, my thoughts went to our newly arranged bedroom, where many of my mother’s needle arts grace the walls and bed. Using the flashlight to direct my path, I went to the other end of the house and lay down on the bed. Pointing the flashlight around the room, I could see the photographs of Momma arranged upon her antique dresser, the various framed needle art still on the floor waiting for placement, and the other needlework on the walls. I could feel the needle worked pillows on the bed against my arm and leg. I turned off the flashlight and tried to go back to sleep, hoping to find comfort in these beloved surroundings.

 

Instead of sleeping, it occurred to me that I had been like a flashlight in the dark, guiding my mother for the last eight years. Probably longer than that if you get down to it. The night Daddy died in 1996, I promised God I would take care of her. Probably not wise to make promises to God, but I felt compelled to do it, having watched Momma care for her own mother.  I began slowly by offering a helping hand as needed. I guess it was the decision to move to assisted living after the Alzheimer’s disease diagnosis that sealed our partnership. Since then, many times we have not known which way to go. The unfamiliar challenges and daily activities required planning, research, and inspiration. Careful attention to Momma’s needs kept me alert and engaged in every detail to keep her safe and loved. Although I was making my best effort to guide her, I often became weak, needing to find ways to charge my own batteries. My wonderful online friends and connections have encouraged me in countless ways. Advocating for other families has given me a sense of purpose and courage in our situation and allowed new and understanding relationships. Camaraderie shared with the many families and their loved ones and staff we’ve met in assisted living, memory care, and the nursing home have made them feel like my second family. But above all, knowing that God has been the guiding light has made this a blessed journey.

Psalm 119:105 has been our roadmap – ““Your word is a lamp to my feet and a light to my path.” We’ve taken it one day at a time, moment to moment. By searching the scriptures, not only have I found reassurance, promise, direction, and the ability to forgive, but the proof of provision has followed.  Like the time her missing tooth partial was found with the help of a raccoon, or when  someone whispered in my ear that we might qualify for hospice, and when needed information came by watching an old VCR family video recording.

Momma has taught me so much in life.  By her side, I have learned how to cook with ease, sew creatively, budget wisely, give unconditionally, and most importantly, how to love. Now we wait together at the gate between here and there. She has run her race well and the finish is in sight. I am confident that someone will be by soon to take her from here. Then I’ll have to find my way without my mother’s company. However difficult it seems now, I believe more lay ahead. I don’t plan on going back to where we started, but I’ll forge ahead on a new path, equipped with all the lessons learned on our journey together. James 1:27 says that “Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.” Living in the world of dementia has been a holy experience and a privilege that will not be forgotten.

Farewell, Momma. It’s time to part ways. Our long walk together has been the most life changing time of my life. I can’t go any further with you but I expect to see you again one day. And on that day, I will eagerly run to you on that beautiful shore with open arms.

 

I recently read a book that was recommended by dementia blogger, Kate Swaffer, entitled, “Flourish, A Visionary New Understanding of Happiness and Well-Being” by Martin E. P. Seligman. It contains a chart of Active and Constructive Responding compared with other ways of responding that I took into consideration.

 There have been times that I have felt like a ghost, alone and disconnected from the other people that are present at the nursing home where my mother lives. I realized as I left the nursing home today that I had used “Active Listening and Responding” with the various people I had encountered. As a result, right now I feel more alive and present than usual after making my daily visit to the nursing home. Nothing out of the ordinary today, except I had engaging conversations with most everyone I met.

First, the receptionist commented on my outfit that I was wearing. I responded back by telling her where I had bought it. She then told me about her recent vacation and all the shopping she had done at some outlet stores. We continued with a few more details, I mailed my letter at her desk and thanked her for the compliment, signed in and went on my way.

I found Momma in her wheelchair in the empty day room, seemingly asleep. I had brought in some lemon meringue pudding for Momma to try. Although she had her eyes closed and was not responding, as soon as the spoon full of sweet pudding was by her lips, she opened her mouth and invited the sweet softness in. I got some ice water from the nearby kitchen to help wash down the sticky goodness and proceeded to feed her the entire portion.

Her CNA came by and announced she was going to lay Momma down so I told I would bring Momma to the room as soon as she had finished eating. When we arrived there, the CNA was selecting a gown from the chest of drawers. I noticed she looked at several, unfolding and inspecting, then folding and replacing. Finally, she chose one. I asked her if she had found one she liked. She laughed and said she couldn’t find the one she was looking for. I asked her if it was the peach colored one and she laughed with a “yes.” I said it was my favorite one, too. She commented it must be in the laundry. I agreed and hoped it would find it’s way back to the room.

While she got busy with Momma, I went across the hall to check on my Aunt Jamie.

Jamie had her eyes open and watched me approach her bed. I stroked her cheek and drew my face close to hers with a big smile. She smiled back. I told her she was beautiful and that I loved her. I nestled her soft stuffed twiddlecat against her check. She snuggled back. I asked if she would like something good to drink. With a promise of being right back, I left the room in search of an empty cup, spoon, cranberry juice and a packet of thickener. I stirred my concoction upon my quick return. Pressing the controls for the bed, I raised her head up and adjusted her pillow for the best position to receive the drink. I went back to Momma’s room and got a soft hand towel, then placed it under Jamie’s neck and on her chest to catch any drips and spills.

I lowered the rail on the side of the bed and pulled my chair up close by her head while she watched with interest. I turned on my Spotify music of cello and piano, turned on my Flip speaker to set the mood and gazed lovingly into my dear aunt’s eyes. She retuned the gaze and opened her mouth. She enjoyed one spoonful at a time, swallowing without hurry, looking out the window, over at the tv, then back to my smiling face. I studied her eyes, her widows peak, and wondered about the two hairline scars near her nose. We went on like that until she closed her eyes, signaling she’d had enough, so I took the towel into the bathroom and rinsed it with hot water. I returned to wipe all residue from her face and neck, before raising the side rail to it’s original position.

Just then the CNA arriving for the next shift came in. I commented on her hairstyle and she announced she had just had her picture taken with two other CNA’s who had won the annual contest for Favorite CNA for their shift. She was smiling and animated so I asked her what would happen next and she explained that there would be a banquet next week for all the CNA’s and that she would attend a larger gathering at a sister nursing home. I congratulated her on her achievement and joined in the happiness that she was feeling. She moved on and I decided to do so as well.

I took the speaker, my purse and wet towel with me to Momma’s room to see if she was still awake. Her roommate was not in, so I turned down the tv and set up a chair next to Momma’s bed. I placed the speaker into the hand that I fished out from under the covers. I gathered up our favorite bed companions – the stuffed lion pillow, the purple twiddle classic, and her doll baby – and arranged them within reach of her functional hand. In the past, she has enjoyed feeling the vibrations coming from the speaker. I laid my hand upon hers. Eventually, she pulled her hand from under mine. She began to feel my fingers and press on my fingernails with hers. This was incredibly intimate and sweet as it felt like my Mother was interacting with me. She moved her hand onto the leg of her baby doll. So I slipped my hand and the speaker out and offered her some water, which she took a sip of through the straw. I moved to the other side of the bed to see if I could make eye contact. She was staring ahead, without even blinking.  I moved my head in the line of her vision and then I came into view.  She looked at me as I began to sing familiar hymns, starting with “Blessed Assurance”, “Amazing Grace”, “Shall We Gather at the River”, and was working on “In the Garden” when the roommate hurridly entered the room, announcing that she had to pee! Since the toilet is located directly across from Momma’s bed and the door cannot be closed with her wheelchair in there, I moved past her to give her some privacy and to divert the lady who was following close behind.

“Happy birthday to you,” I said to the wandering lady, seeing the balloons attached to her chair. I extended my hand, smiling and she looked at me while taking my hand and smiled back. “I haven’t been able to find a thing,” she declared backing up. Her blue eyes expressive, her purse hanging around her neck, her feet directing her movement. “Let’s see if there is anything down this way”, I suggested and she moved on down the hall in her usual way.

By now, Momma’s attention was on the twiddle classic, drawing the purple muff to her mouth. I adjusted the tv volume back up for the roommate and gathered up my things. I stopped by Jamie’s room to set her tv for the night and tuck her in. She smiled at me, crinkling her eyes in the late afternoon darkness.

As I walked down the hall, I said farewell to the staff at the nurses station.  I saw a lady who had just come from the beauty shop so I commented on how nice her hair looked. She said she had done it herself. I suggested she might be able to give me some helpful tips on how to take care of my own hair. She chuckled and tried to say some things about her son. When she admitted she was somewhat confused, I asked her if her son had long hair. No, it’s curly. I told her my son’s hair was curly too but that I also had a son with very long hair. She asked what I had to say about that. I told her nothing. I’d already said all there was to say about that. She smiled and I went on my way, saying hello to another one of the sweet residents, while approaching a new lady who was seated at the corner that I would be turning. She began to sing “we shall meet on that beautiful shore,” her eyes on mine, uncertain.   I exclaimed, “I was just singing that!” and joined her in the next refrain, then reached out for her hand which she took and we sang some more. Our eyes and spirits locked in our discovery. Feeling uplifted and connected to my new friend, I walked on down to the lobby where I met with more interaction and constructive responding. As I walked out to the car, I wondered, where else could I have such rich experiences all in one place?  “Active and Constructive Responding” is truly effective and makes a big difference. I happily drove home, with a sense of well being, buoyed by the hope that one day we will meet on that beautiful shore.