Caregivers Unite

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 just had my first experience with trying to find a lost person who has dementia.  My neighbor, who lives two blocks away, had fallen asleep on the couch for thirty minutes.  Just enough time for her husband to unlock the back door and disappear.  He has Lewy Body disease.  She provides his care 24/7.   Although he had been at the Adult Day Center today, she was exhausted and dozed off.  He was wearing the Project Lifesaver ankle bracelet that just had the battery replaced last week. She called the Sheriff’s office to alert them.  While she waited at the end of her driveway, she informed a passing bicyclist of her husband’s disappearance.  The rider of the bike is a friend of ours, so he came on to our house with the news.  While my husband got our bikes to join in the hunt, I wrote a quick alert on my Next Door App to tell my neighbors and surrounding neighborhoods of this man’s disappearance. We rode to her house and introduced ourselves.  I waited with her while my friend and husband rode off in several directions, trying to find the missing man.  It was quickly getting dark.  The Sheriff arrived who had the GPS equipment to find the ankle bracelet.  He rode off with the radar tool out his window to try to find him.

Meanwhile, a neighbor who was out shopping saw the Next Door App alert come up on her phone about the missing man.  She and her husband had recently driven out of the neighborhood and saw a man standing at the dark backend of a driveway on their way out.  Putting the alert together with seeing the man, they returned home, checking to see if he was still where they had seen him.  He was. As good fortune would have it, this alerted neighbor just happened to be a police officer.  He was able to bring our missing man home without incident.  He alerted the other officers involved who were searching the neighborhood.

While I was waiting with the wife, we prayed together that her husband would be found without incident.  He was.  The networking of neighbors, technology, and the hand of God, all are safe tonight.

Are you connected with your neighbors with the Next Door App?  It’s free and an excellent tool to communicate quickly. Check it out. And then invite your neighbors.

On a recent visit to Brooklyn, NY to celebrate with my son and his newly pregnant wife, I remembered seeing Cobble Hill Health Center on my last visit in his neighborhood.  It sits on a quaint street just blocks from the Brooklyn Bridge Park.  I had walked past and wondered what lay within the nicely manicured entrance of the red brick building where several folks in wheelchairs sat outside.

Having seen the movie, “Alive Inside”, I thought that name was the place where Henry “came alive” while listening to music on an iPod for the first time. So I reviewed the movie on Netflix and got the name of the Activity Coordinator featured and gave her a call at work.  She was there and we set up an appointment to meet that afternoon.

Taking my film producer/photographer son along (just in case), we waited in the lobby for Yvonne Flunory.  She has been an Activity Coordinator at Cobble Hill Health Center for sixteen years. She loves her work and makes it a family affair. She proudly explained that her daughter comes as a junior volunteer. Under the leadership of Louise Dueno, the Director of Therapeutic Recreation, along with two other Activity Coordinators, Cheryl McNeill and Renée Adamson, they offer the activities for all 364 residents. Forty beds are in the dementia unit.  They were all gracious enough to wait around after a long day to talk with me and my son for an hour. When sharing the bond of dementia care, there is so much to learn, so much to talk about, yet the subjects extended beyond what I expected.

I wanted to know how the release of the movie “Alive Inside” had affected them.  But first, I met Louise Dueno.  She warmly received us in her office and told us of her family connections of caring for her father who had vascular dementia, what it was like for her as she shared the care with her sister, and how he ultimately died.  Then she described the difficulties she had caring for her uncle and how he became a resident at Cobble Hill Health Center. So her professional life blurs into personal enabling her to  understand what families are dealing with. She related an experience she had just that day that gave her some relief that she had made a good decision about placing him in someone else’s care. She understood why I would take the time from a vacation to stop in and talk to her about caring for a loved one with dementia.

Ms. Dueno told me about the The Alzheimer’s Association, New York City Chapter’s Palliative Care for Advanced Dementia: Training and Implementation, called “Comfort First” being developed in their facility with a grant coordinated by Ann Wyatt from the Alzheimer’s Association.  We talked about the Music and Memory Program that became popular after the release of the movie “Alive Inside” which offers certification that Cobble Hill Health Center has.  That means that upon the initial assessment of a new resident, music preferences are examined either from information from family members, popular music from their era, and other background information. She also mentioned how Wisconsin is implementing this program in 250 long-term care facilities, replacing antipsychotic drugs with music for managing behavioral symptoms. She showed me her collection of iPods being charged in her office, her stash of replaceable sponge headset covers, and her two laptops that they use with their residents. We agreed that the direct listening of ones’ favorite music was more effective than a group activity of listening to music as it shuts out all the other noises and distractions.

While we talked, another woman waited patiently to speak to us.  Turns out, she had some information she wanted to share.  For six years, Ammeka Berken has coördinated and initiated volunteer programs with New York Cares, a not-for-profit program that is a clearing house for volunteers in New York.  Since my son lives near Cobble Hill Health Center, she invited him to their recurring programs at the Center:  Friday they take up to ten residents down to the Brooklyn Bridge Park; Saturday is Swing night which is a dance for the residents; then on Thursday evenings they take residents down to hear the live music at the park.  She took the opportunity to spread her mission by including us.

Passion is what drives those who believe in what they are doing.  Whether it is Dan Cohen with his development of the Music and Memory Program, or initiating the “Comfort First” program in residential facilities, or matching volunteers with life changing opportunities, or implementing activities to residents in long-term care facilities, or caring for a loved one, we move by a force beyond our own strength and abilities. The wish to enrich life for another human drives us to do, to pursue, to create, to learn, and encourage others to do the same. It was a delight to meet these passionate people.

Our encounter built a bridge from Mobile, Alabama to Cobble Hill, NY. May we learn from our connection and strengthen the resolve to improve the care for people with dementia.

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.

Enhance your skills and knowledge of caring for a loved one during this FREE One-day course.

caregiver college May 21-2

As I walked down the hall towards my mother’s room in the nursing home, I passed a woman who used to live across the street from us in the old neighborhood.   She is also a resident, due to her failing health and cognitive decline, so I always take a moment to chat with her. Today, as I paused, we held hands as a sign of our close friendship. She asked, “Has your mother found her mind, yet?” Taken back by her question, I replied, “I hope so.” Quickly she answered, “I hope so, too.” I began to walk away, then turned and said, “Thank you for hoping with me.”

Surprisingly, that day was the beginning of my mother’s improved clarity. She has maintained her ability to make eye contact, reach for her favorite soft toy and even nod her head in answer. Over the last two weeks, several of the staff and even my sister have commented on her improvement.

I realized that I haven’t expected my mother to improve, only to decline.

Today, someone reminded me of a scripture that made me think of how I’d accepted my mother’s fate and possibly even my own. It took my little friend to put the idea in my head that I was able to hope for more. Not only hope but expect. 2Timothy 1:7 says “For God has not given us a spirit of fear, but of power and of love and of a sound mind” ( NKJV).

Thank you, sweet friend, for pointing me toward hope for a better day and not just accept the death sentence of an Alzheimer’s diagnosis.

My friend with Early Onset Alzheimer’s disease has this tattooed on her arm. “While there’s life, there is hope.” Agreed. Hope in this life and for the next.

Today I determined to build a bridge. Momma is now in the bed when I visit which makes it difficult to get into her field of vision. Leaning over the rails becomes tiresome and hard on the back. Although I play music for her and give her a drink, we do very little real connecting. We are at the place where Validation Therapist Naomi Fell interacted with Gladys in their viral videoed encounter. Inspired by her teaching, I decided to give it a try.

I let the rail down on her left side and got in bed with her. I began to sing to her. Momma’s eyes are generally half-mast, one open more than the other. I stroked her cheeks as Naomi had done, as a mother would do with an infant. Momma closed both her eyes in response and seemed to be enjoying the moment. I continued to sing until I had exhausted everything that came to mind. Then I said the Lord’s Prayer. By now, both her eyes are completely open and it seemed on occasion she is almost moving her mouth to speak. Since the bookcase is within easy reach of the bed, I got my folder with poems, songs, and sayings. I read everything to her – even some speech therapy familiar sayings. Then I recited Mother Goose rhymes to her. I had her complete attention.

I got the photo album that is her life story and showed her pictures of her growing up and her sisters. We moved to her later life, her children, etc. I showed her a large framed photo of the antebellum gown she skillfully made for me, pictures of my children and recent ones of her. Her eyes followed my movements.

I talked to her about what I was making for dinner. I told her the kind of birthday cake I was making for her as her birthday is in six days. She watched me as I adjusted the bed rail and moved to the other side of the bed to put on my coat and scarf.

Before I left, I said, “I love you, Momma,” and leaned in to kiss her check. She turned her head and made a face of refusal like a child would with an older adoring relative. I laughed and said, “What a face.” She turned back and looked at me as if to say, “you know we don’t do that in our family.” Which is so true. I don’t know what I was thinking. It was so her.

A bridge was built today.

Do you have parents who have Alzheimer’s disease and you’re concerned that you may soon be developing symptoms yourself?  That you want a cure to be found before it’s too late for you or your children?  There is something you can do.  Several prevention trials are going on that you may be interested in.  In particular, the A4 Study is for people with no symptoms but may have several reasons for thinking they may develop Alzheimer’s disease. The researchers need 1000 people to participate. You may be eligible if you:

• Are 65 to 85 years old
• Have normal thinking and memory abilities
• Have an A4 study partner – someone who has at least weekly contact with you who can answer questions once a year
• Are willing and able to receive IV infusions of the investigational treatment or placebo for 36 months (36 monthly infusions); all A4 participants must be willing and able to participate in all required procedures for the duration of the A4 study.
• Are willing to have your health monitored throughout the study using assessments such as:
  • Memory and thinking tests
  • ECGs (a look at your heart)
  • PET scan (a way to look for the plaques thought to be associated with AD)
  • MRI scans (a way to take a picture of your brain)
  • Blood and urine tests

Click here to Find a location where this trial is going on .  Other trial match opportunities may be found at alz.org.

On March 12, 2015 at 10:00am, E.A. Roberts Alzheimer’s Center will host their monthly Educational Dementia Support Group.  CarePatrol will be presenting the topic, “Finding The Right Place For Your Loved One.”  Wendy Harris and Rebecca Dacovich will be speaking about their service of offering free community resources for nursing homes and assist living facilities.

E. A. Roberts Alzheimer’s Center is located on 169 Mobile Infirmary Blvd, Mobile, AL  36607

Complimentary care will be provided during the meeting.  Please call 435-6950 for more information.