By Alzheimer's Daughter
These writings are my personal memoirs of our care journey.
History – Up Close and Personal
As I surround myself with books and resources from the library on Alzheimer’s Disease, I think back over the last several years, recounting how I have gotten here. The journey has taken several years so far, starting in 2007 as the year I saw the signs of dementia but we still had a window of opportunity to get Momma’s legal and financial life in order. I was witnessing a consistent confusion in her life that required regular assistance.
It could have been the car accident that instilled her fear of driving but after that event, she welcomed any offer of transportation. She no longer wanted to drive to the hair dresser, as there were too many left turns involved. Momma had been attending exercise classes with a neighbor and they would often stop by the grocery store on their way home. Eventually, that dropped off as the neighbor was noting too great a responsibility to have her along. There was that time momma lost a handful of money, as she had begun to clutch her change in her hand and leave the store without securing it into her wallet.
She continued this behavior when I took over the weekly driving to the grocery store. I had to stop her and insist she put her money away before proceeding away from the register. Those days are long gone, now. We have moved from weekly visits to the store, to my taking on most of her food preparation, to moving her into assisted living where the food is prepared for her, to taking her on outings to the store for exercise and fulfilling my list, to presently, going to the store first and storing it in an ice chest with hopes of bringing her home with me so I can prepare a meal that she will consume, before taking her back for the night.
I wish I could say that I am at peace with all the decisions that have been made so far. Thankfully, we did accomplish the legal requirements of power of attorney, advanced directive, and situated her assets so that all will transfer on death to her heirs. We don’t have long term care insurance even though we seriously considered it at age 80, but the premiums were so high, and she was so frugal, we withdrew the first year premium that we had put down. Hence, she will pay out of pocket for her care until all her money runs out, hopefully qualifying her for Medicaid.
I cannot speak for what Momma is feeling and experiencing as she has long stopped having conversations or expressing her thoughts during our daily activities together. That mystery began when she was spending her days with a fellow resident, Ruby, who could not hear anything she said. So Momma listened while Ruby talked. Ruby moved to another facility, leaving Momma silent. Every now and then she comes out with a sentence of observation or physically gestures to communicate but mostly I read the look in her eyes.
I could not have anticipated finding myself in the position of her primary guardian or daily caregiver. Growing up, I was particularly attached to my father, being his helper and trying to be more of a boy for him than a girl. My mother was the rock of the family, working hard for all of us. She prepared good meals, she lead a girl scout troop, taught preschool, Sunday school, and later, became proficient in needlework, and taught others her craft in local stitchery shops. However, things were not all they appeared for this family, as many nights, when my father stumbled home, intoxicated from an evening at the club, my mother met him at the door to argue and send him on his way, barring him from coming in to safety. I always disliked that about my mother and felt she would do better to let him come home and go to sleep. It only meant there would be another confrontation later that night and I dreaded hearing it from my bed.
Always a caregiver by design, it wasn’t until I saw my mother’s need for help that I softened toward her. Compassion for a fellow human being took over my childish behavior learned so long ago. I recognized that as a Christian and a daughter, I could love her unconditionally and serve where I saw the need.
After my father died in 1996, I was in position to assume my father’s financial dealings as he had employed my help in his declining health. I was familiar with his investments and began to keep up with the mail, looking at and filing the statements, and marking in his record book how things were growing or losing. I tried to educate myself on matters of the stock market but most of my awakening was prompted by turbulent economic trends, putting the fear of my inability to handle these affairs to my mother, who listened quietly, but continued to put her faith in what Daddy had set up and trusting I would keep things going, status quo.
Balancing the checkbook became too great a challenge for Momma, and I would enjoy doing the deed for her, deaf to her promises of doing better next month She just lost track of how long I had actually been keeping up with it, unwittingly giving me the truth of what was to come.
Other behaviors led me to the conclusion of pending dementia. One Christmas morning she brought over a loaf of homemade banana bread, proceeded to slice it all up, looked at it and blame my son for having done it. The taste revealed a missing key ingredient, perhaps the sugar.
Another red flag was at the grocery check out, when, trying to be helpful, began loading up the groceries back into the cart before being bagged. I gently put my hand on hers and suggested we wait until everything was in the bags before we took them. She became quiet and stood still before I gave the cue for proceeding.
One time, we were in the kitchen, attempting the job of putting our fall stock of Vidalia onions into old panty hose to protect them from rotting against each other. She had practiced this method for years, and they would hang from the laundry room cabinets until she’d cut the bottom one off as needed. We were each dropping in an onion, tying a knot, then drop another one in, tie a knot, until the length of stocking ran out. Hers became all jumbled into a large knot and I questioned how hers were progressing. She began to laugh at herself, so much so, that she had to run to the bathroom.
These situations began to increase and we both knew we couldn’t just leave things as they were.
We’ve come a long way but the story I want to tell is how I, as a daughter, the sister, the responsible party, the power of attorney, and the caregiver, have observed and what I have experienced from my vantage point.
There are nights that I wrestle all night long with what needs to be done next, how safe she is, and what changes need to be made to accommodate her. The one thing that I can count on is that each day is different and I cannot expect for things to stay the same. Change is coming so I best not get too comfortable.
All the ideas I have come up with to overcome the squeaky wheel of the day, become just a memory as we continue to travel along the journey of Alzheimer’s disease. I’m learning to join Momma’s world each day, and offer my presence, stay patient and attentive, to help her tolerate the day well, if not enjoy it. Her eyes tell me how things are going. I have begun to wear my name printed on a sign hung around my neck, so that now she says my name or at least knows it if I ask. I’ve become a name, a presence and a comfort. As soon as I’m out of sight, I’m out of mind. I don’t expect anything else. However, I am not able to forget when she is out of my sight. She is ever more present in my thoughts. So much so, that it is difficult to focus on anything else.
Last Chance Hall
I’ve begun to realize that the assisted living facility where Momma is living is for many people, the location of the last chance. The last chance for a family member to visit, the last chance to make amends with self, family, friends and God. The last chance to learn what you're made of, what your life has meant and what your family thinks of you. In the year and a half that we’ve been in room 113, many residents have died. Some have sat or laid alone in their room until their name is called up yonder while others have family members keeping vigil round the clock, watching, waiting and caring. I was privileged just last week to be part of the vigil by a daughter, who had cared for her mom while only arguments and discord came from the other siblings. She was there when her mom took her last breath. I was also there to hug the daughter and congratulate her on being a “good daughter” and to thank God for the blessing of allowing the daughter to witness her mother’s departure. I knew the tears in her eyes wouldn’t be the last shed for her mother but I’ll bet they were the sweetest. This caring daughter had given me direction, as she was ahead of us on this journey and I learned much from her. She was my role model for the few weeks I knew her. She helped us see the way to go. And most of all, I observed the awareness that there is peace in being there. Much to the ignorance of the missing family members, there is peace and blessing in being there.
I didn’t know the woman on the phone was going to become my lifeline. I had signed up for additional information to be mailed to me while researching the drug ARICEPT on the internet. I later received a packet containing two small booklets that contained advice from nurses for caregivers of Alzheimer’s patients. She called the day my mother and I were in the yard, picking up pine cones. We’d had a bumper crop and there were plenty to keep us busy. I left my mother to it and answered the ringing phone. The voice introduced herself and asked if this was a good time to talk. Somewhat reluctant at first, I asked a few questions and decided now would be fine. So she gave me a list of topics to choose from that we would discuss over the next few months. I made my selections, chatted a bit more about my mother’s current condition and our recent struggles and said good-bye, almost stunned that someone wanted to talk to me about what we were facing. Now I had wisdom to voice my ideas to, gleen information from, to be encouraged by. Not that I didn’t have others who might come along side me in friendship but this was different. Her next call came two weeks later.
She stayed on script, yet this time I learned her mother had Alzheimer’s disease before she became a nurse. She encouraged me to tell others how we are handling momma with activities, i.e., puzzles, journal reading, videos and photos of the family, the outings to my house with hands on activities, encouraging independence as much as possible – laundry, etc. We talked about behavioral changes – how not to take personally any resistance or difficulty, go along, don’t force – agree, then change the subject, she advised. She told me about the book, "Still Alice", that she highly recommends.
Her book recommendation prompted me to check out other books, while I waited for hers to come in. Reading the tomes of "The Last Childhood", "Dancing with Rose", then" Learning to speak Alzheimer’s" sparked a renewed resolve for seizing the moments I shared with my mother on my daily visits. This wealth of information stoked the coals of my imagination, stirring up my creative powers for a fresh approach. I began to deal with the present, not so much on waiting for the end.
I identified all the contents of every drawer and cabinet in her small assisted living apartment with note cards placed on the outside of each. I took photographs of all the staff and made a poster sized collection of all her helpers with their names and job printed underneath. This was a great reminder to not only her but to us as family members, as well. We hung it just inside her door, visible from the hallway as you pass by so it drew people in for viewing and laughter. We put the extra photos in an album in her room, including the one of momma with a rooster sitting on her head taken when the petting zoo visited the facility. I also included photos of her with her doctors, hair dresser, etc. to remind us of who they are and is especially handy when it is time to see them again.
Pam called a third time to talk about our preselected topic. I don’t know now what it was because I had so much to tell her about and our conversation flowed freely from our experiences. I told her about the books I read and gave her the titles as she was interested in knowing them. I ended up telling her how much I looked forward to her calls, that I was been sorry that I had missed her when she left a message on my answering machine. She in turn said it made her day to be appreciated and when we ended our conversation, our hearts were full from the kindred spirit we shared.
Today I write, thinking of her because I had another good day with my mother yesterday and I can’t wait to tell Pam about it.
May 26, 2009
Will the Circle Be Unbroken
The dulcimer group set up their chairs in a crescent shape in the back activity room. The residents were seated around the periphery of the room so that by the time we came in, the seats in front were the only ones available. The band’s family members were marked by their cameras and unfamiliar faces. They too sat along the outer wall. I showed Momma a hard back chair with arms to sit in and I took a seat on the sofa. I could see past the musicians through to the women who were seated behind them. They were looking our way and whispering to one another. I got the feeling they were talking about our seating arrangement, so I got up and moved momma’s rollator behind her chair for me to sit on. The group announced that they would be playing gospel music. I didn’t know I knew so much gospel music but many of the tunes I knew well as I had grown up listening to the Staple Singers and Willie Nelson. I tapped my foot and sang along.
I remembered the first time we had attended a concert of this nature, I could not hold back the tears as they sang of Jesus and heaven. We were new to the assisted living scene and were still adjusting to the change. I tried my best not to let Momma see my tears as I was having as hard a time adjusting to her diagnosis of Alzheimer's disease as she was being moved out of her home. Some months later, I recalled seeing a new resident in a wheelchair who drug herself with her one good foot into the activity room to listen to the gospel music. She too, began to cry and eventually pulled herself out of sight. I was glad that there were no tears today. But then, they began to sing an old familiar tune that I knew well. The third verse began to hit close to home and my voice weakened with emotion. “Undertaker please drive slow. For that lady that you’re holding, Lord I hate to see her go.” I looked around at the other residents, mouthing those words. I wondered if they were thinking of anyone in particular, perhaps their own loved one, or considering their pending ride to the grave. I was once again reminded of living in the moment and enjoying what time we had left together. The concert over, we moved to the front porch to read from her diary, as was our daily practice, into the waning afternoon.
My Steady Friend
My rollator is not a crutch. Instead it allows me freedom. With it’s smooth wheels and ready handles, it offers balance, mobility, security, and a place to rest. I like to bring it along just to walk nearby or it can fold up easily to store in the car to accompany me wherever I go. The basket attached offers storage, freeing up my hands to push and steer. The brakes are within easy reach and I can lock them in place when I want the rollator to sit still. It’s parked by my door, ready to go when I am.
My walk with Christ is like having Him as my rollator. He’s not a crutch but gives me freedom through His love. He offers balance to my misguided thoughts, and with His help, directs me when I get up to move, offering security through His love. I go to Him for rest and enjoy just sitting with Him for refreshment. Wherever He goes, I follow along behind yet He allows me to steer. I can rely on Him to carry my load so I can get on with living. Yet when I need to sit still, He quietly waits until I am ready to go again.
May 21, 2010
I am still thinking about our date to the Senior Prom. Tiffany, the assisted living activities director, thought of every detail to make the evening enjoyable. I particularly liked the Mary Kay makeup consultant who was truly inspirational. The colors she chose for you really had you looking your best.
The dining room was gaily decorated with helium filled balloons and candy mints on each table. I thought the lasagna, green beans, and garlic bread were good and hot, just the way you like your food. I just wish I hadn’t eaten that large piece of cake as it kept me up all night. However, it gave me a chance to think of writing you this letter.
Since you, your sisters and mother always wrote letters to each other while we children were growing up, I was prompted to begin my own letter writing to you for several reasons. One, so there will be an envelope frequently waiting for you in the mailbox and two, so you will have an account of our time spent together the previous day.
We will then be able to read the details and with the help of photos, remember all the many days we’ve spent together. This is not a new idea for you as your room is lined with boxes of your journals, trip photo albums and family videos. All of those things well represent the past but now we have this season of life to remember.
Since each day fades from mind quickly, I want to capture the happy times we share and make them accessible to our fingertips. We can store the letters in a notebook, along with photos and review them on a rainy day.
I have included some photos from our prom night together. I hope it will prompt us to participate in more group activities. There are delightful people to interact with in your new home and I hope we can make them our friends, too.
See you tomorrow.
A Day in the Life of Assisted Living
Today is Monday, the day Momma gets her hair washed and styled by Linda, the on site beautician. I generally arrive after lunch, drop $15.00 cash into Linda’s lunchbox that sits on the end of the counter in her salon and then go on to find Momma.
Today, I entered her open apartment door without Momma’s notice. She was seated on her loveseat nearest the lamp, intently reading a letter. I stood quietly as I watched her until she finished. I saw that she had received both letters today.
I had hoped she would have gotten one on Saturday but there were the empty envelopes and photographs next to her. She looked up with a start when she discovered me standing in her kitchen.
I took out my camera and snapped a picture of the scene I had been observing moments before. I sat down next to her and picked up the pictures of her taken the night of the senior prom.
“These are really nice, don’t you think?” I asked.
She murmured an agreement, then turned her attention to the paper in her hand.
“I thought it would be good to keep a record of our activities,” I explained, adding, “We need to get a notebook to store them in.”
I picked up her photo album to include the new photos and reviewed the ones already contained inside. We briefly looked at the history that was depicted so far, then added the new memories.
I stored the letters in the drawer of the side table next to the couch then turned my attention to the stack of newspapers next to her chair. This is the day we look through the Sunday paper coupons and cut out the good ones, a habit she practiced throughout her marriage.
While I got out scissors and gathered up the weekend papers to throw away, she got up several times to visit the bathroom. I’ve noticed that after lunch, usually her first meal of the day, she needs to stay close to the facilities to take care of unpredictable bowel activity.
I find this somewhat distressing as I wonder if we might be out in public when the urge hits. Consequently, I’m never in a hurry to leave on an outing until I feel enough time has passed to safeguard against accidents.
I haven’t always been successful, but so far we’ve been able to handle the unexpected.
Ready to clip coupons, we sat across from each other and turned the pages of our Sunday’s offerings, as I had brought mine from home to mirror hers. At first, she resisted participating, claiming she didn’t want any but I offered that it would be helpful to me, so she complied.
We paused from our work for her to hurry to the bathroom. While she was indisposed, a familiar face popped in from the hall to request the coupons when we were finished.
This lady is a caregiver to a couple up the hall who moved into Ruby’s vacated room at the first of the year. She told me she had gotten coupons from Momma before and I explained that we cut them out on Monday’s as an activity, followed by a trip to the store.
We made plans for me to leave the remaining coupons outside the door on the shelf and she would pick them up later. I asked her name to which she answered, “Hazel”. She further informed me of her job with the couple and was willing to help out wherever needed in the facility.
She admitted that she was a Christian and for ten years was in charge of handing this couple’s finances and grocery shopping. She had hoped they would stay in a house as she felt this was easier to handle and cheaper.
She offered the names of trustworthy caregivers that she has worked with in the past if we were interested. I asked her to make a list with phone numbers when she could.
I have noticed her industrious presence and wondered at her position. I saw her as a new friend and comrade. I left the coupons on the shelf as we left for our outing to Walmart.
May 24, 2010
Catfish Junction Outing
As the designated time approached, the residents began to gather at the side door. The bus was pulled up, with both doors open, ready to be loaded. The ambulatory residents were already on board, choosing the best seats. Others were eagerly waiting outside, vying for first dibs on being lifted aboard by the back platform.
Momma was waiting patiently inside, behind the line of rollators and wheelchairs before her. I could see that the space was quickly filling up and there was a chance I wouldn’t be on the bus.
Jessie and Tiffany were in charge, both wearing their Knollwood Pointe uniform consisting of a pale green polo shirt and khaki pants. Tiffany is a tall 40ish black woman with an infectious smile. A white middle-aged male, Jessie is compact and strong, hired to work in many capacities. His job title was maintenance man when we first moved in but now he is called the environmental director. He is stingy with his smiles yet under his unpredictable personality lay a big heart.
Together, they quickly escorted each person onto the lift, secured the safety belt, instructed the rider to hang on tight and up they’d go on the mini elevator. Personal caregivers were on hand to encourage and keep the line going.
Tiffany kept reassuring me that we would be on that bus, while busily pairing up riders on the two person benches, then fastening the seatbelts. Momma’s turn came and she stepped right up onto the lift with Jessie and Tiffany giving extra care for both our benefit. I stepped on by the front steps of the bus and met her in the aisle.
She selected the seat next to Catherine, the woman that had volunteered to help Momma find her remote not long ago. This lady always looks very neat and trim and I asked her if she did her own ironing. She proceeded to tell me how she cared for these particular blouses which didn’t involve ironing at all. Showing me the label in the collar, she claimed “just wash and hang to dry.”
After all was loaded, it was announced that there was a seat for me, in the front no less. I sat next to a lady named Agnes Horton, a stout white woman who reminds me of a friend of my mother’s when I was a girl. She asked me if I sold real estate. I told her no and in a few minutes, she repeated the question. I said no again and then she remembered, “Oh, I asked you that already.” Her reason came out next. “I sold real estate for forty years,” she remarked.
We began to chat and she pointed out a street where she used to live saying, “We built a house there in 1957.” I said, “That’s the year I was born.” Continuing she said, “While I was in the hospital several months ago, my son sold my house without me having anything to do with it.” I could see the pain in her eyes as she felt the loss all over again.
We sat looking forward for a while. I took out my camera and snapped shots of everyone around me, then showed my seatmate how they looked on the back of the camera. Across the aisle and back one row sat Roy, the man whose vocabulary is limited to several words that he uses in a variety of ways. A woman sat squeezed in next to him. I noticed they were holding hands.
Roy usually rides in an electric wheelchair and wears oxygen tubes in his nose. He is a round fellow with tattoos on his arms, military in nature. He must have had a stroke some time ago, and makes remarkable use of the few words he repeats over and over. He can say, “ how r you, awright and good” with sounds that convey his response to what he sees and experiences. His body language and eyes complete the message loud and clear.
Roy’s hands were moving down her leg, then across her shoulder, then back to her hand, confident and smooth. I couldn’t help but notice and wondered how the woman was taking all this attention. She had volunteered to sit by him, after all. She kept a smile on her face and was relaxed under his touch.
While still holding her hand, Roy moved on to me. All I would have to do was catch his eye and he would began to make comments with his, “good, good, good,” give me a big, slow wink of his eye, and look at my legs. I was rather embarrassed at his bravado and looked ahead so not to give him the satisfaction of communicating in such a lewd way.
I regretted wearing the lightweight dress I had chosen for the summer temperature. Agnes muttered under her breath, “We have to listen to that all day long.” I commented back, “It’s amazing that he can say so much with so few words.” He kept this up all the way to Saraland, so I busied myself with watching the road and taking pictures.
Before long, we were turning off the interstate toward our destination. The restaurant had a pond to the side of it. A man was throwing bits of food into the water so by the time we got off the bus, there were many turtles of various sizes at the surface. At one time, folks would fish here for catfish as well as order food. We noticed the green pool as we filed into the restaurant, eager to get out of the hot sun.
The place was almost empty of patrons. The waitresses got busy pulling tables together to accommodate our crowd of 19. Everyone was finally seated. I sat against the wall at the end, close to the bathroom. My earlier fears proved to be unfounded as there were no close calls or accidents, even though I had packed spare clothes for my mother just in case.
Catherine sat across the table and began to complain of a stuffy nose. She sat right under an air vent coughing and sniffing the entire time. Tiffany and Jessie were next to her. Momma sat next to me, then Mrs. Purvis. Edna Purvis was one of the first residents I met at Knollwood Pointe as Momma originally was placed at her dining table. She converses easily and I gravitated to her right away. Her sweet face compliments her character. My husband says she looks like the cat in Dr. Suess’ Cat in the Hat.
Our drink orders were taken, while we considered the menu. Momma and I selected what we had chosen after looking at the menu back at the apartment. Everyone ordered quickly. Suddenly Tiffany stood up and asked for everyone’s attention. She thanked everyone for coming along on the trip. I was not prepared for what came next. She announced that this would be her last day. Just like that. Just writing this account gives me that same sinking feeling I felt at her news all over again.
Not only did I feel a tremendous loss for the group who benefitted from her daily enthusiasm, but I had felt we had broached a new friendship that I now saw quickly waning. She explained that she had some issues to work out that needed her full attention.
I could tell I wouldn’t know the intimate details of her “issues” but knew that even though she promised she would come back, she was ending it. She’d been the Activity Director eleven months and we were just now learning to enjoy her contributions.
And just like so many other losses before this one, we could only wish her well and accept her decision. The rest of the outing was bittersweet, knowing we had gotten in on our first but her last outing. However, I have learned to trust change and expect it’s all God’s plan.
Once everyone had eaten and paid their bill, the slow process of moving everyone from inside the restaurant, onto the bus and back home ensued. Roy was back at his antics on the way home. Once he saw that I wasn’t interested in responding to his pursed lips asking for a kiss, I looked back and saw he was holding my mother’s willing hand. I just shook my head in disbelief and commented that he was taking full advantage of the busload of women. Even though there were two other men on the bus, one was the driver and the other I never heard a word from.
We finally arrived home and the well fed residents retreated to their rooms to recover from the mornings events.
I dumped the photos onto my laptop, then Momma and I went looking for someone who had gone on the fieldtrip with us. One slightly built and neatly attired woman, who has a private caregiver named Ann, came into the activity room. She answered my question as to her name as Connie Windom and became very friendly and talkative. When I recognized the name she admitted that her son had been the Lt. Governor of our state at one time. After viewing the picture slideshow, we got up to move to the back activity room where her friend was waiting for her to play Rummicube. She hugged my neck as we said good-bye.
We found one other interested lady who had gone to Catfish Junction but had ridden in a car with her daughter. She was sitting in her room. She’s a pretty, petite, white haired lady who gets around in a wheelchair. Her name, Betty Mafousky is printed by the door. When I asked if she’d like to see the pictures, we were invited in. Momma sat down in a low, upholstered chair while I showed Betty the pictures on my laptop screen which prompted her to ask how much I would charge for a copy of the pictures. I showed her the one that she was in again and said I would make a copy for her. She seemed genuinely thankful for the visit yet concerned that Momma wouldn’t be able to rise from the low seat. With the help of the rollator in front of her, Momma got right up, impressing Betty with her strength.
I commented to Momma as we walked back to her room that we had made some new friends today. “Oh?” she queried. I named the two women and felt that the trip had been worth spending the day and the $22.51.
Even though each day is unpredictable, we just keep going, taking it as it comes, accepting the losses and embracing the additions. The journey keeps on going. I thank God for this time with my Mother as we seem to need each other. I can nurture and care for her filling that motherly void I’m experiencing with an empty nest while she needs me to watch out for her well being.
A Pleasant Day
Today, I arrived at Momma’s room mid morning during a rainshower. She is always surprised when I walk through the door and today was no different. I announced that I had come to take her to my house for the day. She seemed interested yet reluctantly got up from her chair to walk out to my car. The rain had stopped by the time we got outside but I still left her in the drive through to fetch my car from the parking lot.
I had been to the produce market and my car was filled with fresh fruit and vegetables. After she was seated, I showed her the luscious basket of peaches stored in the back of my van where I stowed her rollator. She ooed appropriately and I was encouraged that this might be a pleasant day for us both.
As we drove up in the driveway of my home, we could hear Jeff playing the piano. He had gotten rained out from his intention of mowing her yard so now we had the treat of listening to the sounds of the grand piano that we were storing for friends who had sold their house, leaving no where to place their prized possession. Jeff assisted her into the music room while I unloaded the van. As Jeff played, I worked in the kitchen, moved by the rich intonations of all the instrumentals as one piece flowed into the next, going through all his repertoire. I stood at the sink, cleaning green beans, shucking corn and cutting it off the cob, and preparing lunch and getting things ready for dinner later for my two guests. I usually have a sparse meal at lunchtime, but I knew Momma hadn’t eaten anything yet and she likes her hot meal in the middle of the day.
They moved into the kitchen for a hodge podge of leftovers, Momma having some Cajun cabbage and potato, small serving of chicken enchilada and a few slices of Conecuh sausage. Jeff had chicken enchiladas with a side of green beans and I had cottage cheese with tomato, cucumber and Vidalia onion. We all had some semblance of dessert, Momma with vanilla ice cream smothered with caramel sauce, Jeff had a plum and a cookie and I had two choc chip cookies left from last night.
After clearing all the dishes and pots from the island, I got out the cutting board and sewing machine. The music room windows had been wanting for window treatments and I had finally decided to remake something I already had and mount them with tension rods, top and bottom, inside the window. One at a time, I took the sheer curtain, measured and cut and pinned where I would stitch. This is an activity I sure would engage Momma, but as I began to run the sewing machine, just across the table from her, she got up and walked over to the day bed for a rest.
By the time I had completed all three curtains and hung them in the window, she was ready to get up. Jeff had gone on an errand while I sewed, so as I was showing the end result to Momma, he came home. Since the rain was passed, and it seemed a tad cooler outside, I called my neighbor to see if we could borrow the golf cart to tour the neighborhood. He is most accommodating, and brought it right over to my back door. We poured some cups of ice water, got our sunglasses and walked outside. Jeff had decided to join us so we all took our places, me at the wheel, Momma beside me and Jeff facing the back in the rumble seat.
The ride was most pleasant as we drove to our friend’s house on the river. We are able to ride up the river’s edge and enjoy the cool breeze from the water, and alternately ride along the single lane road surrounded by rich wet woods, evoking a feeling of riding along a back road in the foothills of Georgia or North Carolina. We drove from one end of our neighborhood to the other and around the block. As we approached our driveway to turn in, I asked her if she were ready to turn in. “No,“she replied. I took that to mean that she had enjoyed the ride. We ended the ride anyway, and after getting her back into the house, I returned the cart.
They were both sitting in the kitchen when I returned, Jeff in his rocker, searching the internet with his laptop and Momma at the table, moving the puzzle pieces around that I had put in front of her earlier. Time for another meal. I got back out the vegetables that I had prepared earlier along with okra. After some consideration, I decided upon salmon patties for the meat selection. I had a can of sockeye salmon on the shelf. This was a favorite of Momma’s mother, Coramae. I thought it would be a special treat for everyone. I cut up some of the home grown tomatoes, cucumber and onion to go along with the steamed okra, green beans, corn, and crispy salmon patties. I didn’t put alot on Momma’s plate but expected her to enjoy the food. While Jeff and I wolfed down our meal, moaning with pleasure, she slowly whittled away at hers, glancing at my plate as I kept replenishing the disappearing vegetables. We all passed on dessert and got the kithen cleared in short order. Next comes the walk around the block for the dogs sake, so we turned on the tv in the kitchen for Momma to watch while we were gone. When we returned, we found that Momma had moved from her chair, back onto the day bed, where she sat at an awkward angle.
Jeff joined her on the daybed and showed her some photos we had taken earlier that day, two of us in the golf cart and some of the dogs. I got our things together and pulled out the car for easy access. Jeff helped her get in the car. As we drove the 15 minute ride back to her place, I hoped the day had been pleasant and I thought maybe she had enjoyed it as much as I did. The music, the bountiful meals, the golf cart ride, the finished curtains game me satisfaction that the day was spent at a leisurely pace and could not have been better given the circumstances.
We made our way back to her apartment in silence, the familiar route lulling us toward a good nights sleep. She was able to walk all the way from the car to her room without stopping. She went straight for her window blinds, and closed them for privacy. Then she visited the bathroom, turning on and off the light as needed. When she came out, she went over to her bed and took off the throw pillows, placing them carefully on the dresser, and the sham against the wall. Next, she carefully and meticulously turned down her bedspread, folding it once, and again, so that is was neatly draped across the end of the bed. As I watched, she came over to her recliner to sit. I got up to leave. I faced her and asked if she had had a good day. With a grim look on her face, she shook her head to say no. Surprised, I reminded her of the day’s activities and asked again, “Would you rather I leave you here to sit all day?” To this she nodded affirmatively and them seemed to just not have an answer.
“I hope you have a good night sleep,” I said, and left her door open for the nurse to come in to replace her Exelon patch.
I had been sure she had enjoyed the change of location, the attentions of Jeff, the food, the ride but by the end of the day, it was all forgotten and colored by returning to the room where she lived with little to do but live in the moment without thought of what has been or is to come.
How different our perspectives were as we had both walked through the day together but ended so differently.
After praying the Lord’s Prayer with Momma, I shut off her lights and went on down the hall to see if Faye was with her Mom. Sure enough, she was in the recliner, with a pile of reading materials in her lap. About then, the hospice nurse dropped in to assist with repositioning Mrs. Everhart in her bed. I took a look at what she was reading: John Piper’s 90 minutes in Heaven, a book by Chuck Swindoll and one pamphlet about the signs of dying and another on funeral planning. This gave me an open door to address what was going on in the room - a loving daughter, keeping vigil with her suffocating mother. Her tenderness with her mother was so precious, I felt I was intruding on holy ground. The blue tinge around her mother’s mouth spoke of the struggle she was having yet she was peaceful under the morphine calm that hospice had administered only an hour ago. When she struggled to breath and began to cough up flem, Faye was at her bedside to offer a tissue to spit into. “Good job, I think I’m gonna keep you” she lovingly chided her mom.
We talked for almost two hours about the materials she was attempting to read, and the obituary ideas she was contemplating. She had clippings of other obituaries that she liked, one in particular that stated that the deceased was a devoted mother. “That’s all she ever wanted to be”, she explained with conviction. She further confided that she was grateful that through the experience of sharing this phase of life with her mother was that they had become friends. I referred her to the book that I had so enjoyed entitled “The Designated Daughter, the bonus years with mom.” She wrote down the title. We shared our histories with our mother so far, talked of other siblings and the current relationships we had with them. Seeing it was getting late, I offered a prayer before I left. She readily accepted and I hugged her in close. With our heads together, we went to the Lord. Time stood still as we shared a kindred need for understanding of the brevity of what our roles were now. We thanked the Father for trusting us with the privilege of tending to our mothers while they were so close to His kingdom. We asked for direction and wisdom in all decisions, in our communication with the caregivers and family members, for inspiration in writing the obit and planning the funeral. I prayed for a peaceful night as she would sleep on a canvas cot brought from home, set up next to her mom, even though the thermostat was set at 62 and there was a fan blowing to help her mom breathe. The night before, Faye had complained of the cold, but tonight, she would be wrapped in the warmth of blanket in the closet and surrounded by the arms of her Father’s care.
The Special Care Unit
It was the day before Christmas Eve and I expected to be winding down the holiday activities on the unit, then have a few days off to enjoy Christmas with my family. We’d been back in Mobile for a year, my new husband and I and now we were six months pregnant with our first child.
Having worked nine months on the Special Care Unit, life there was very routine. The residents passed their time in the dayroom, the place where meals were eaten and the 14 residents gathered daily. I was the recreation director for this locked Alzheimer ward. Although I was the youngest there, I felt a strong sense of protectiveness and responsibility toward these unfortunate people whose minds had seemingly wandered off, thereby landing them in a nursing home that provided this safe and secure haven for them to live out their days. Each resident was unique, yet few could speak a full sentence, let alone understandable words. I wore a large printed sign suspended around my neck that spelled my name. Somehow they knew me by that sign as I always wore it. One of my favorite residents, a woman named Ruth, who was usually in an agitated state and shuffling her feet along the hallway in her slippers, would call out to me with a heart wrenching wail while reaching through the locked iron gate toward me as I passed from the elevator to my office before coming onto the unit. Many times she would try to say something to me, the usual stuttering syllables coming out, then grab onto my nametag, give it a little pull and be satisfied that she had communicated her message. We had mostly ambulatory patients, only one bed ridden, a few unsteady on their feet but mostly there was a good deal of wandering from room to room, looking for the way out.
What started out as a routine day in December turned into anything but normal. We got word on the unit that the nursing home was under a bomb threat and all residents would have to be evacuated. The nursing home had three floors, filled to capacity. Since we were careful to keep our wandering residents “locked in”, to get them all out seemed like a momentous task. However, with no time to waste, an alternate location was secured at a nearby nursing home and the transporting began. All vehicles available were put to use. Since the elevators were being used for the bed-ridden residents, I helped some of our people down the three flights of stairs and out the front door into an awaiting station wagon. Even to our confused Alzheimer folks, this was highly unusual activity and surprisingly, everyone was cooperating. This must have seemed like the great escape they had all been hoping for. We loaded five residents into the station wagon and I got into the drivers seat. As we pulled up to the exit onto the main street, I paused to wait for a break in the traffic. Next to me on the front seat was my dear Ruth who was very attentive to all that was happening. She watched the oncoming traffic, then spoke. “You can go,” she said. These were the first intelligible words I had ever heard her speak and she was right. I looked at her with surprise and saw a smug satisfied smile on her face. I hugged her and said, “thank you”, knowing I had just witnessed something extraordinary. Off we went on our great adventure to move to the safe location. Thankfully, everyone was successfully moved and housed for the night. As the threat turned out to be a false alarm, everyone was moved back the next day. I was off from work that Christmas Eve but could not enjoy the evening service without first checking on “my people”. Dressed in my red velvet maternity shift, I insisted we drop by the unit on our way to church. My husband and I crept down the hall and snuck a peek into the activity room to be sure all was well. If I’d been seen, there would have been a disturbance but as it was, all were seated at the table, peacefully having their dinner. Satisfied that they were all safe, I was then able to exhale and enjoy the evening and Christmas with my other loved ones.
A Phone Conversation
While out of town, I called to check on how Momma was doing. The first attempt when she answered was brief as she heard my voice and hung up. I called back and immediately instructed, “don’t hang up” only to be told to “wait a minute”.
I realized that it was 8pm and was time for her nightly visit from the nurse to change her Exelon patch. This time, she did come back to the phone. I asked if the nurse was gone and she replied, “yes.” “Is Carolyn gone?” I asked. “Carolyn?” she feigned. “Yes, was Carolyn with you tonight for a while?” I had scheduled the sitter to be there so I was expecting a positive response, knowing that she most probably had just left. “Yes”, she admitted.
I told her I was calling to see how she was and to let her know that I was in Washington on a business trip with Jeff. “Where are…” she attempted and then began to laugh that laugh she uses when she can’t complete her words. I waited while she said the two words several times before helping her complete her query.
“I’m in a hotel in Washington DC”, I guessed. “Oh?” responding with the idea that she wasn’t aware of my out of town status. I’d been gone since Sunday and this was my first call. It was Wednesday night.
I suggested she check her mail and look for a postcard from me as I had been sending them since we got here. “OK”, she responded, but I knew that thought would be long gone by the time she passes her mailbox tomorrow.
I made a few more remarks and hoped she was eating well. All my statements elicited another short laugh. She made another attempt at speaking and just couldn’t make it happen. She just laughed some more. I told her, “It’s alright. I’ll be back soon and show you all the pictures.”
“Okay”, she replied and I said I’d call another time. “Talk to you later,” I finished and she answered with “Okay” again. We hung up and I sat thinking of how pitiful it was.
I realized that this must be what it is like for family members who live far from their loved one and this kind of interaction is all they have. It leaves you suspended with thoughts and disconnect. I’m so grateful that I have the close proximity to visit her everyday and don’t rely on a phone call to be in touch. Instead, I can call on our daily interaction, knowing the details of her life without her having to say a thing.
I’m grateful that we made the decision to live here. Even though that decision was made 25 years ago, I knew this day would come. God has provided for us all these years, making the way possible. He called us here before we even got married and I made it part of the negotiations of our marriage agreement.
He knows all things and I can see that all we need do is trust and obey.
Lessons Learned from a Memory Bridge Retreat at a Tibetan Mongolian Buddhist Cultural Center
We began our earliest connections at the airport. My first encounter was with Mary. We recognized each other as Memory Bridge travelers, and began to connect. When the elusive shuttle bus arrived, others trickled out of the airport building and got on board. In all, we had five expectant sojourners making our way to the next check point – The Holiday Inn in Bloomington, Indiana. Some dozed and some looked out the window, while I listened in on a joint phone conversation with 1300 other listeners hosted by USAgainstAlzheimers. For forty-five minutes, the guest research doctor on the phone described a study she was gathering participants for that could produce a medication that could help prevent the onslaught of AD. I may have dozed off several times but it helped pass the time and was an interesting topic.
Upon arrival, as more people gathered, we were shown our accommodations. Twelve of us were taken upstairs and given our assigned rooms. It was up to us to choose which bed to sleep on. My two roommates and I stood looking at the possibilities. Kathleen took the twin bed in the left corner immediately, leaving Bethany and me standing between a twin and full sized bed. With some hesitation followed by each giving the other the option to choose first, I decided on the other twin. We began our unpacking and exploration of how to share this intimate space.
Soon it was time to join the “circle” downstairs, which would be our place of learning, a place of being heard and hopefully, a place of being seen. Labeled “a place of deepening awareness,” Michael Verde’s Memory Bridge structure unfolded over the next four days. We kept to our schedule, which allowed enough space for all to participate. However, between the travel weariness, anticipation and overwhelming feeling of “how did I manage to get here with all these great people”, we must have looked somewhat haggard, since our sensitive leader took notice and began to work in more breaks in the schedule for rest and assignments.
We were given the opportunity to begin each morning with a walk down to the temple to practice morning meditation. I likened this to Matthew 6:6. The Message version of the Bible says, “Here’s what I want you to do: Find a quiet, secluded place so you won’t be tempted to role-play before God. Just be there as simply and honestly as you can manage. The focus will shift from you to God, and you will begin to sense his grace.” I confess that I am a Christian and although well aware of that teaching, I more often than not, choose to “hit the ground running” on many days, and leave my talk with God to be on the go. However, as to receive all this retreat offered and to follow the schedule provided, and even risk offending God, I made my way to the temple. Led by a Tibetan Monk who spoke broken English, aside from listening to the opening prayer that we followed along in a prayer book, and a few breathing exercises, we sat in the lotus position, eyes closed, in silence for forty-five minutes. Once I got over the realization that he said 45 minutes and not four to five, there was nothing else to do but sit quietly, and pray to God. Each day got easier and on the last day, I got the revelation that I was willing to do this ritual to please man but not willing at home to do it to please God. - Lesson number one – take time to meditate in the morning, be still, and know God.
The time spent in our Memory Bridge circle produced many ah ha moments. You could see the light bulbs going off as we related our own struggles and experiences. Michael reminded us to“know less and become aware of more” several times. Interacting with our buddies at Autumn Hills Alzheimer Special Care Center provided opportunity to unpack that challenge and we would return to the circle to investigate our findings. Our charge of “letting go, letting in, and letting be” became apparent in the many stories shared as we built bridges with our buddies and amongst ourselves.
Within the circle, the underlying theme amongst our most intimate confessions was the feeling of not belonging. So here we were, in the land of misfit toys, sharing our journeys in spite of that longing. We found kinship and acceptance, followed by smiles, tears, and hugs. However, I most related to Michael’s “Listening Deeply in a Flat World” - a thought-provoking hypothesis of restructuring our social framework. Several quotes used resonated with my lot. Particularly, William James’ “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.” His pointing out that we live in a vertical (pyramidal) social order of “who we are is where we are” caused us to realize we’d probably sized our status up already within our circle and then measured what it would be like without that structure. We considered what it must be like to have AD and the exile that ensues. My self-imposed status of nursing home resident with Alzheimer disease has been like joining a leper colony. We have our own community, removed and distinct from where we once lived. Michael referred to this status as “the living dead.” I found that my personal challenge is to stop grasping to convince myself that I am here and that I matter. I wondered if needing to matter is what motivates most of what I write about. Lesson number two –Empathetic listening helps us realize how much alike we really are.
My first night with my roommates was very quiet as I managed to get in there after they were asleep and the lights were out. I was grateful for my phone light and for the headlamp I had brought along. I was able to change for bed and once in bed, write in my journal in the dark, wearing the light strapped to my forehead. Thankfully, I didn’t wake anyone. The next night, I was in the light, interacting with my roomies. It didn’t take long to discover that the woman in the next bed had the knack of listening to me in such a way that all the stories I shared about “living in a nursing home” drew peals of uncontrollable infectious laughter. That just fueled the fire, and I found great healing by having this delightful nymph not only listening, relating, and validating but seeing me in a humorous way. The dry desert of my exile into the “land of living dead” began to flow with living water. Up to this point, my source of living water has been the Holy Spirit, who fills and renews me as I pour out to others. However, Jesus knew what he was talking about when he said, “This is my commandment, that you love one another, that your joy may be full”. I remembered as I grew up with my father, mother, and older sister, I was the one who made everyone laugh. I’d forgotten about her and wondered where she is. We stayed up late at the expense of our sleeping roommate who later assured me that she enjoyed going to sleep to sounds of giggling and waking to the sounds of giggling.
Word got around, and with the mention of chocolate, that double bed became the after hours communal circle. What didn’t get said during the day was given the opportunity to be said that night. More confessions were spoken, surprising even us at our ready transparency. Equated with a college dorm experience, we held on to the magic moments until the wee hours of the night.
By the fourth night, the licorice supply was almost depleted, the chocolate was long gone, but we added music, and the pictures came out of our families, pets and hairstyles. We knew our time was fleeting and this was too precious to pass up - an opportunity to have girlfriends to confide in. The big bed lent itself to comfort, closeness and coziness. However, I remained upon my solitary bed looking over at this cuddly group. Since there was limited floor space in our room, during the day, I kept my suitcase upon my bed. Maybe it stood as a barrier to invitation. My sweet, welcoming roommate was having the same effect on our visitors that she had on me. She later remarked that they were “piled up like puppies,” as the women enjoyed the closeness.
I noticed as the pictures began to post in Facebook, that Bethany had this effect with others. In fact, she was the one who brought our awareness that vulnerability is the birthplace of love. I was aware of her inclusive ways and intentional interaction with me and appreciated her awareness to my somewhat guarded singular persona. I remember hearing myself quote Maya Angelou’s truth that “people don’t remember what you said or what you did, but they remember how you made them feel”. I appreciate the people who took me aside and gave me encouraging, validating words. My surprise at their kindness made me feel like that funny little girl who just wanted to help people feel better. Lesson number three – be more aware of how I make people feel. Lesson number four – vulnerability is the birthplace of love.
These two strong lessons are important for all our relationships. I considered my husband and how I must make him feel. I considered the faces of people I interact with in the nursing home, especially the staff. Do I still come across as someone who doesn’t need help? Oh contraire. I remembered that my sister has stepped up to help when I became vulnerable, rather than the person in charge. The goal of Memory Bridge is “the ability to attend more profoundly”. I believe I am moving toward that. I realize that I embrace care giving as a spiritual practice as Cathleen had proposed. At the retreat, I had made the trip into the darkness of my past and the loneliness of not being seen with my fellow seekers, but I don’t live there much of the time. Not only do my visits to the nursing home bring others pleasure, but I thrive on the friendships and interactions I have. I have learned to “stand in a place that we would rather not” as Jane quoted. Pauline quietly shared profound, meaningful thoughts that enforced my belief that “each person is an expert at any given time on what they need” and “that I was attempting to empower the person who is living their life.” My most meaningful revelation is in Matthew 25:40 which says “And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me” ESV. In my service to the “land of the living dead” I am serving Christ. For me, it doesn’t get any better than that.
When it was time to go, we took the reverse order of travel, making our way home, as different people. We chatted continuously with our friends on the bus, took photos and promised to remain connected. One by one, we parted until there were four of us “girls” going through security. We became playful after the security officer offered to call my friend over the loud speaker while I waited for her to get through. That brought more shrieks of laughter and photo opportunities, as we were all awarded junior officer status with sticker badges. We raced in the hallways of the airport against the moving sidewalk and had a final meal together. Our time was almost up and we lingered as long as we could. My final farewell was to my roommate, Kathleen, as the doors to the concourse closed behind me and I watched her move out of sight. Now we are left with our memories and introspection. What we do with an increased awareness of empathy in listening is wide open. I remembered that our last activity together to close our circle was led by Kathleen, our therapeutic clown. She had us shake our bodies all over and move in close, reach across, until we could touch fingers, then lift our hands and throw our energy up into the air with a loud shout. All that we had learned was released and made available into the universe.
How have these lessons changed me? On my way out of the Walmart parking lot today, I approached an intersection where a man was sitting in the grass, holding a handwritten sign. I noticed his ruddy face and tobacco stained moustache. I thought, in my usual way, that he might do better by working than sitting in the sun all day looking for a handout. Then I noticed the Vietnam hat he wore. I immediately thought of my buddy back in Bloomington who proudly wore his WWII hat whenever he left his room. I realized that this man held his identity in that hat and hoped to be seen as somebody who once belonged. I fished out a five-dollar bill and rolled down the window. I confess this is the first time I have responded in this manner to someone on the side of the road holding a sign. He thanked me for whatever I was about to give him. Then he said, “Do you have a family member in the service?” I said, “Yes, my father served in WWII.” “Is he still living?” he asked. “No” I said. He confided the latest statistic that every 90 seconds a WWII vet dies in this country. He looked at the bill in his hand and said it would help a lot. I held his gaze and saw him. And for a moment, he saw me.
Beth Reinert, June 2014
My TED Talk
I’m a caregiver, care partner, care seeker, care stakeholder, representative, responsible party, sponsor, advocate, peacemaker, and problem solver.
What have I done for people with dementia?
It all started back in 1985, when I took a job as the Activity Director for a Special Care Unit. My two years there allowed me to love and care for dear people lost to AD. As part of my work, I wrote a monthly newsletter to inform the families of our activities, educate and validate. That experience ended with the birth of my first child. I wrestled long and hard with the decision, but ultimately, I chose my son to raise full time.
It wasn’t until the death of my father in 1996, that I saw my mother would need my assistance. I began to see the red flags of dementia. I was already involved in her finances, as my dad had trusted me as his secretary. We lived about 25 minutes apart but we kept in touch almost daily by phone. As time went by, my husband and I helped renovate her home, sort and pay bills that would pile up all over the house, take care of the yard and helped with the care of her cat. I eventually took over the driving, assisting with grocery shopping and ultimately the cooking. In 2007, after much research, we prepared her affairs: updated her POA, will, Advanced Directive, TOD her investments, took over her tax preparation, put her home in a life estate, and by late 2008 we had a diagnosis, late first stage AD.
As I look over the 500 photos that I’ve taken since we moved her out of her home into assisted living, I see many of her, smiling, and of her many residential neighbors we have met along the way. Yes, I have taught some exercise classes, transported Momma on many outings and offered friendship to all in our path. What the photos don’t show are the many special moments I’ve shared with my new friends. Adjusting clothing, fetching a sweater or perhaps a set of teeth needed at mealtime. Redirecting and soothing an inflammatory situation or answering a call for help when the staff is otherwise engaged. Including troublesome residents in our activity or just helping everyone in a group accomplish their tasks.
When my mother’s life began to change, mine did too. I am invested in every decision, health condition, and emotion. At times, I feel as if we are one. I have never thought I could read her mind, but I can read her behavior to try to make life pleasant and healthy as possible. My checklist falls under three questions: Is she safe, is she well, does she know she is loved? I have protected Momma from as much ignorance as possible although we have tolerated more than I would have liked. In an effort to combat the obvious mishandling, misjudgments and misunderstandings, I have tried to educate myself on every front – communication skills, dementia progression, care giving skills, and then educated her private sitters and anyone else who would listen or read handouts on the subject. Often it would be other resident’s family members who were obviously struggling and needed guidance or the phone number of the local project lifesaver service.
I have watched my mother suffer from unimaginable loss as she has trembled, whimpered and despaired from her lot. I have wrestled under the weight of responsibility to solve her every challenge, suffered the sale of her car and the loss of familiar doctors who retired or moved away. Yet, when we have overcome a major hurdle, I have felt empowered. Diagnosing and removing an impaction without any help made me feel like superwoman. Finding a lost one toothed partial in the outside dumpster was miraculous. Locating a new doctor who was sensitive to her needs took several tries. I began to realize that we were not alone on this journey after all. On many occasions we have experienced miraculous moments, help and solutions at just the right time which has strengthened my faith in a loving and caring God.
When I finally contacted the Area Agency on Aging, looking for help and voicing my concerns about the lack of help for families with dementia, I ended up being recruited as a volunteer. I went through training to become a Wellness instructor, recruited participants and taught the six week course, then went through their weeklong Legacy Leadership Training, all in hopes of finding a way to speak up on behalf of people with Alzheimer’s disease.
My breakthrough came when the director of SARPC and others at the AAA answered my pleas by calling a meeting to establish the Alzheimer and Dementia Coalition of South AL. Whoo hoo! Several other dementia service leaders attended and we went about to plan a project – my requirement as a Legacy Leadership graduate. I initially wanted a memory walk but that is only a one-day event and I wanted to leave a lasting difference. We came up with another idea. A telephone helpline: One that would offer local dementia resources in our area. So it came to be that the help line was set up through the AAA, and was announced at the annual caregiver conference. I got to speak at this conference with the Director of the South AL Planning Commission at my side. This event followed an article I wrote (my first published piece) that was featured on the front page of the opinion page of our Sunday paper. A picture of momma and me was included with the article so I was a celebrity that day. My 5 minutes of fame.
The good director of SARPC also gave me some of her space in their annual Senior Resource directory. I had the second page story, with our signature photo included. This only gave me a greater desire to have a voice, so I started a blog. It was a learning process since I had very little computer skills. However, with time, each mystery has been solved – only took me a year to figure out how to create a link. I follow other online resources, including Memory Bridge, Teepa Snow, and Lori La Bey’s Alzheimer Speaks and recently, USAgainstAlz. I joined the Facebook group, Memory People, and have found immediate responses to my successes and failures. As a representative from the AAA, I was interviewed on a local Christian television show about Alzheimer’s disease and my blog.
While I’ve been joining the dementia community, I’ve been withdrawing from my other associations. I gave up teaching my restorative yoga class but kept the STRETCH class I’d been leading for 20 years, as I needed support even if it was designed for breast cancer survivors. I dropped out of the Ladies bible study and joined several support groups that I visit when schedule allows. I attend other senior coalitions in town to connect with anyone who might have something I’d like to feature on the blog which has turned into a website that links to a blog and Facebook.
I even recently got to attend the Alz Assoc. Forum in Washington, DC as an advocate. Connecting in person with so many people who are passionate about AD was overwhelming. Then, to tell my story to the AL Congressmen and Representative was an exceptional experience. Sitting in the office along with our local Alz Assoc. Director, a doctor of Alz research from the UWF and the FL congressman while his staffer took photos for his newsletter was surreal. Now, we’re planning our first Walk to End Alzheimer’s in September in our area.
Although it sounds like I’ve forgotten my mother in all this, you would be wrong. She is my first priority. In addition, almost two years ago, I took on my uncle and aunt’s care, too. He was dying of lung cancer, managing his wife’s care in a SCALF and his own hospice care at home. Once he had my husband’s approval of my involvement, I handled the paperwork allowing him to move into the SCALF in August and I moved my mother into the SCALF in September. Once we were all one location, I was instructed at his bedside with all the details I would need to take over his wife’s care once he was gone. He introduced me to submitting weekly claims to long term care insurance, all his financial dealings, and his Lawyer and POA. He died November 6. We had two months to get it all in place. Now I had his end of life affairs to manage including his burial and contact with the VA for his benefits, my auntie, and my mother. Our time at the 16 bed SCALF was community oriented, everyone sat in a large room with recliners, the dining tables in the same room. I enjoyed my daily afternoon visits with all the residents, playing catch with a soft rubber ball, singing endless songs, planning and carrying out the Christmas program, comforting family members, loving residents. But most of all, I was there.
Soon, my ladies no longer qualified to live in a SCALF, each unable to ambulate independently, so we moved both within several months of each other. The transition was hard on all of us. Each move has been a tearful experience for me as I have grown to love so many people that we would leave behind. New surroundings, people, and daily habits were foreign for momma and auntie. But in time, we have adjusted.
Currently they both reside in a skilled care facility, living in semiprivate rooms across the hall from each other. I continue to care for them on weekdays; my sister visits on the weekends. My aunt has a long time companion who started out as her housekeeper. I pay for her weekly services, provide an annual W2 form, pay AL dept of labor dues and do her annual taxes for her. I balance multiple bank accounts; keep spreadsheets for accountability to the POA and for the 5 year look back period if we ever qualify for Medicaid. Along with compiling everyone’s taxes.
They both have hospice care. My daily mission is to see they are hydrated and make sure they get and eat their afternoon snack. I clean my mother’s teeth and nails almost daily and my aunt’s less frequently. We also soak and trim toenails, provide music, magazines, stuffed animals, painting, lap harp, flowers, etc. Attend group activities, and interact with our nearby neighbors. Sometimes we go outside. Most of all, I am there. I love them both without any hesitation, regret, or misgivings. That’s what it has all come down to. Pure love.
Since I am a planner and a caregiver, I am making provisions for my immediate family to be able to care for me. I have compiled an estate book that has every needed document to carry out my care and burial. I am writing a care guide for my caregivers in the event that I develop dementia.
My son and I recently collaborated on a video project that I am going to show you. A very short summary of our journey but I believe it sums our story up well.
My message is one of hope, courage and unexpected blessing. The lesson is this: don’t run from life’s interruptions – therein my lie your greatest moments.
“As you did it unto the least of these, you did it to me.” Matthew 25:34.
June 14, 2014