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.