Three Weeks, Many Miles, and Lots of Great Lessons!

As I write this on a Sunday morning from Lancaster, PA at one of my favorite campgrounds, I am very aware that I’ve not written a post in quite a while. There were many days that I felt I need to write, but didn’t or couldn’t because there simply wasn’t time before the next major event.

My three-week whirlwind officially started on Sunday October 21st as I worked one of my Verger assignments at church. Usually after church I grab and bite and head home. But that day, I took a drive to the picturesque city of Hershey, PA and spent the afternoon with 28 caregivers from a company called Specialty Home Care. That event came about after several of their caregivers attended another event I did in Hershey earlier this year. Specialty Home Care management wanted all of their caregivers to be Uplifted so after sharing “Lifting of the Spirit of the Caregiver” with half the staff, I returned after work on October 25th and gave an evening presentation to the remaining 26 caregivers. Both sessions were powerful and there were tears and laughter and plenty of love too. The owners of Specialty Home Care were so moved by my presentations that they purchased 70 copies of Refreshments for the Caregiver’s Spirit as gifts for all of their caregivers. Watching them receiving personalized copies of my book with a hug from the owner was amazing!!

On October 22nd I took Mom to an appointment with a new neurologist who specializes in patients with dementia. He was a fairly young doctor but we connected immediately. I was primarily there to ask about getting a drug for Mom to help her sleep as her wandering through the night at Lifesprings Eldercare was keeping other residents awake and the staff very busy. Though I’m very opposed to drugs that in my mind knock dementia patients out, Dr Starr made me feel very comfortable about the very small dose of a drug that would help Mom sleep through the night without making her zombie-like. He restored my faith that there are doctors who actually care about their patients and have great bedside manners too!

On October 24th, the new term began at Webster University where I’ve taught for 20 years now. This semester I was not only teaching the security management class I helped to develop many years at the Joint Base Andrews campus, I was also teaching it online with a total of 18 students. Though I was very worried I had bitten off too much, both classes are a Joy, with students very interested and engaged!

Next up was the Halloween Dance at church on October 26th where I went as Prince’s Purple Rain complete with purple hair, hat and rain boots, all of which I already owned due to the fact that purple is the color for Alzheimer’s awareness. While I had a good time for the most part at the dance, I actually danced very little… aware that I am a single person and VERY aware that night of all of the happy couples in attendance. I was tired after my busy week so I left the dance fairly early, but I admit I was as sad as I was tired.

I was uplifted on October 28th when Lifesprings Eldercare hosted their 2nd annual tea party for residents and family members with beautiful hats and all. To say that Mom and I enjoyed ourselves would be an understatement! When she saw herself in the mirror in her hat and suit, she immediately smiled a smile I hadn’t seen in years and said “I look pretty”, which she definitely did!! I was proud to be her guest that day as she sipped her tea and ate the sandwiches and desserts! I also realized that it was the first “official” tea Mom and I had been to together, which is odd because Mom has loved tea for her entire life.

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We went back to my favorite internist Dr. Idoko, for Mom’s follow-up visit on October 30th primarily so we could order pullups for Mom instead of adult diapers because Mom loves to tear them off by pulling off the tape. With the pullups she won’t be able to do that. It’s a good thing we had an appointment that day, because the group home had notified me that while rummaging through her closet the night before Mom must have hit her head and a huge knot appeared there the next day. But Dr. Idoko assured us that all was well and the bruise and knot would go away in a couple of weeks.

On Friday November 2nd, Mom moved to another group home within the Lifesprings Eldercare system of three homes. The owner, Fay Hutchinson, was gracious enough to take Mom on July 1st even though she didn’t have a “waiver bed” (a subsidy program) available at that time. She let me know that Mom would have to move to a double room when one became available. The new home is even more beautiful than the first one, and I didn’t have to lift one finger to assist with the move because the caregivers did it all, including transporting Mom to the new place. I went over to the new place immediately after work and Mom seemed to be having the time of her life! She barely said hello as she was engaging with the other residents. I was so relieved that all was well and laughed all the way home after leaving her.

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The next day on November 3rd, I gave a presentation for the Alzheimer’s Association at New Psalmist Baptist Church in Baltimore, MD. To say that it went well wouldn’t quite do it justice. There was so much energy and excitement from the moment the conference began and the energy continued to build as I began my keynote presentation! The crowd just roared their approval, jumping from their seats before the last word was even out of my mouth. They showed their appreciation even further by purchasing every book I had with me, and I took orders for others and mailed them the next Monday. It was the largest one day of sales I’ve had since my books were published! It was an event I won’t forget for a long time.

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I gave another presentation on the evening of November 8th at The Jefferson, A Sunrise Community in Arlington, VA to an intimate audience of family members and staff. There were great refreshments and great questions which led to folks hanging around to chat at the end of the event. I also had the pleasure of taking one of my young co-workers with me that night, who wanted to “see me in action”. She was thrilled and said I did a great job!

I managed to spend family time too during this three-week whirlwind, first with my daughter Kim on November 4th as we took a step towards forgiveness after an estrangement this past summer, and then with my cousin JoAnne on November 5th to celebrate her birthday. I was also with my bestie Kris on November 6th as her Dad passed away at Calvert Hospital. I had the honor of saying a prayer and grieving with my family before heading home again.

Some may ask why my schedule is always so packed, and how I manage to keep it all going. The easy answer is that I always have a goal, a reward for myself, that ends the long hours and running here and there with a chance to recharge. That time is now, at this campground, with a group of women, RVing Women to be exact, that I’ve come to love. Spending this Pre-Thanksgiving Rally Celebration with them was what I had been building up to… a time I knew that for four days in a row I could rest, relax, laugh, cry, walk, and reflect. Being with these women always reminds me that I can do anything. That I can drive my JOY here alone, and can now complete small repairs JOY may need, and that JOY and the woods around us this weekend give me the peace and solitude I need. JOY has become my refuge.

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In spite of the fact that this is the last camping event of the season, I have HUGE plans for 2019. My calendar in 2019 will be filled with less events and more “me time”. When I give my last presentation of the year on November 16th in Chicago, I’ll spend the rest of this year planning more fun for 2019! There will be more Miles for me to cover and Many More Lessons for me to learn and I can’t wait!! I hope you have great plans too!!

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The Best of Days, The Worst of Days!

Today was incredible! It started with a great group of folk coming together with me to fellowship, to reflect, and to recharge before returning to their caregiving responsibilities. We shared, we sang, we met in small groups. We found our own spaces to reflect among the many acres of a Maryland campground right off the busy Washington beltway. Who knew there could be such solitude and peace in such a congested area of the world? When the mini-retreat ended I was totally fulfilled! All of our sharing and our time of fellowship and prayer before departing totally energized me. I waved as the participants drove away, ready to spend the rest of the day and night in nature and in my beautiful sanctuary I’ve named JOY!

But out of nowhere today suddenly turned into the worst of days – because Tim isn’t here with me. It struck me almost right away as the group departed that today was Sunday. Sunday was OUR DAY… Tim and I were either watching football all day after church or packing up to come home from our beloved camping trips. But today I wasn’t packing. I’ll be here until tomorrow because it’s a holiday and that’s a great thing! BUT I’m now alone in a beautiful campground surrounded by families and friends fellowshipping together. They’re laughing and playing games, riding bikes and tailgating while watching their favorite teams on their outdoor tv on their RV. All the things Tim and I did together. I’m happy for all of them, thrilled actually… and I hope that they have many more years together of love, laughter and being together before they experience the pain I’ve felt over these past two years, including today.

Since Tim’s death Sundays have always been my worst day of the week. I don’t think I’ve ever talked or written about that fact until now. To help with my sadness I walked 6 miles today around this really awesome campground, experiencing trails and benches and water I’d not seen on previous visits here. As the sun began to set, I headed back to JOY for dinner, along the way smelling all the great food that families were cooking and sharing together. Cooking on the grill and our outdoor kitchen in our RV named Memory Maker was Tim’s favorite camping activity. Tears ran down my cheeks as I prepared and ate my salad (and no I still don’t cook).

I didn’t see this sadness coming and certainly hadn’t planned for it. A friend visited me yesterday at the campground but if I had been thinking I would have suggested they come today instead so I wouldn’t be alone. It’s amazing how emotions can go from one extreme to another in the space of a few hours, but I’ve come to realize that it’s more than ok to cry and that it’s ok to have afternoons like this.

So as this day winds down, I’m still grateful that even though I was sad for parts of today, that it was a day filled with such beauty. I’m grateful that this weekend has been amazing for me, with new friends and new discoveries that allows me to continue to grow into the person I’m still becoming without Tim. I’ll go to bed tonight proud of everything I accomplished this weekend and I’ll wake up tomorrow happy that it’s Monday!

The Perfect Place at the Right Time!

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Prior to last Monday, I’d never heard of the First Mount Zion Baptist Church in Dumfries, VA or its Small Groups Ministry Director Stephanie Craddock. We met at the Faith United Against Alzheimer’s Coalition Round Table, part of the UsAgainstAlzheimer’s National Alzheimer’s Summit in Washington, D.C. The purpose of the Round Table was to mobilize faith communities around brain health and Alzheimer’s awareness. From the moment Stephanie and I met, we “connected”.

After the round table ended, Stephanie and I chatted briefly and she invited me to First Mount Zion yesterday to see the play Forget Me Not. I was excited because the play that’s been touring the country focuses on Alzheimer’s and its impact on the African-American family. By the end our next conversation I was added to the panel discussion that was to occur between the two acts of the play. I sent my bio and photo to Stephanie Craddock and to Stephanie Monroe, the Executive Director of  AfricanAmericansAgainstAlzheimer’s, UsAgainstAlzhimer’s. I was told that more than 1,700 people had already registered to see the play.

When I arrived at First Mount Zion yesterday at 9am to help set up the African-AmericansAgainstAlzheimer’s table, I was just excited to see the play, and to participate in the panel. Then I met Deacon Michell Clark (the MC for the day and one of the Founding Members of African-Americans Against Alzheimer’s), who offered to give me a tour of the multi-level church. The tour can only be described as mind-blowing! The church has incredible facilities and more services and programs than I’d ever seen. I’ve been in churches that had a small gym and even a basketball court, but certainly not a gym called Fit By God with a room filled with extraordinary equipment, as well as a sauna, steam room AND a trainer who designs fitness programs for church members. The huge basketball court has a full scoreboard and a full track in the balcony over the court. There is also a Kid’s Kingdom, that has themed classrooms and areas designed with kids in mind. There is a full service cafeteria with a commercial kitchen that provides meals for the dozens of First Mount Zion group meetings. There is a child care center, a barber shop, a beauty salon, a bookstore, a clothing store that serves the community, a computer lab, a huge crying room with glass windows that overlooks the sanctuary for parents with fidgety kids. They have more meeting rooms (several with capabilities for streaming the services) than some actual conference centers I’ve been in. And these are just SOME of the highlights!!

During and after the tour I met church ushers, members of the parking ministry and leaders of many groups. I had great fellowship with the wonderful people who lead the church’s Alzheimer’s Support Group. By the time we finished setup for the resource table with information on Alzheimer’s I was totally spirit-filled and ready to meet the many people who would enter the church doors to receive information, to laugh and to cry. The sanctuary doors opened at 11, but many people were already gathering by 10:30. People rushed over to the table to talk to me and Stephanie Monroe and to take home all of the information we had to offer. Some had been dealing with Alzheimer’s for a long time, while others had just recently been impacted by the disease. We talked and shared information right up until the play started at noon. It’s been a long time since I’d hugged that many people! I spoke with one eleven year old boy who was brought to the event by his grandmother because he wanted to learn everything he could to help his grandfather whom he said was his best friend.

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The play, which is offered to the community for free, was excellent and much more emotional than I thought it would be. It was certainly funny in parts, but deadly serious in others. During the panel discussion led by Stephanie Monroe, it was amazing to actually sit on the set of the play as we told our stories and answered questions. As I looked out over the audience I was stunned by the rapt attention everyone was paying to the panelists, as they seemed to hang on every word that was said during the short discussion! I was tremendously proud to be in a room where almost 2,000 mostly African-American souls were listening and talking about Alzheimer’s disease. During the intermission and after the play, people rushed out to purchase a DVD of the play which I helped to sell and copies of my books. I sold almost every book I had with me.

After the play ended and the last person had left, I helped to get all of the remaining Alzheimer’s informational material repacked into boxes ready to be shipped to the play’s next location. With each box I packed, I felt like I was playing a part and doing God’s work in continuing to spread awareness about this disease across this country. Many of you know that I’m a cradle Episcopalian, but I don’t believe our chosen denomination matters at all in this work. I believe its a matter of being like Jesus and reaching out to those who need and want information and supporting each other with unconditional love, patience and understanding. I’m more energized than ever about this work and I’m especially focused on learning more about providing dementia-friendly services to those suffering with this disease and their caregivers. The best thing by far that happened to me this week was meeting Stephanie Craddock and having the opportunity to spend the day at First Mount Zion Baptist Church. I’m thankful that last Monday I was in the Perfect Place at the Right Time!

The Weekend That Was Meant to Be!

I was supposed to spend Labor Day Weekend in Orlando at a huge African-American event participating in a panel on Alzheimer’s disease and signing my books. But more than a month ago, I was bumped from the event by a famous actor (there are worse things in life). I was told I could still attend the event but would have to pay my own way, but I declined. Then I tried to make camping reservations for me and JOY, but by then all the campgrounds within a comfortable driving distance were booked. Turns out, it was Meant to Be for me to stay home this weekend.

On Friday afternoon, instead of driving to a campground and being out in nature which I love, I was sitting in a room in an upscale assisted living facility visiting our beloved friend Mrs. Adams. She and Mom have been best friends since forever! I was terrified a few months ago when I called to set up our next get together, and learned that her phone had been disconnected. She had to be removed by protective services from her home of 65 years for her own safety. Then in June she suffered a traumatic brain injury. The woman who had been my rock since my Mom was diagnosed in 2006, is now in virtually the same condition as my Mom. Struggling for words, getting frustrated when she can’t find them, and YET still having a smile that could light up a room. This visit was simply Meant to Be!! It meant that I wasn’t going to let not knowing where she was stop me from upholding a decades long tradition of celebrating our birthdays together. After I found her, though she couldn’t remember my name, when I asked why she was removed from my home she told me the story of her conflict with her son, a story she had yet to share with anyone else according to the staff at the facility and the two other friends who were in her room when I arrived. I thank God that she’s in a great place and is safe!

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Then on Sunday, I took my Mom to church for the first time since last year. Earlier in the week, a friend who will soon become an Episcopal priest shared the research she’d done on the “best spiritual care interventions across the stages of dementia”. I loved her findings and because I know my Mom Spirituality is still very strong, I decided to take her to church in spite of her habit of constant humming which began about 9 months ago. As soon as we got out of the car at church, people rushed up to her. Some of them only know my Mom from Facebook, but they greeted her as if they’d known her all of her life. She hugged them, they hugged her! During the service Mom did well. She couldn’t follow the service, but passed the Peace and took communion. When her humming got too loud, I took her into our amazing chapel where she could hum and I could still hear the service. It was the absolute BEST of both worlds. Of course I now wish I had taken her to church more in the past. One of the things Mom says more than any other is “Lord and Savior Jesus Christ”… in between the humming, she must have said it 40 times as we sat in that chapel. I’m so grateful for our Rector Michele, who stopped what she was doing and hugged and welcomed Mom, and for all of the parishioners, some who are friends and some who are not, who rushed up to greet us. For a while there was even a line to say hello to Mom. Truly an incredible morning for me…. I thank God for sending us to church and allowing Mom to be surrounded by love, which I believe she felt. The trip to church was simply Meant to Be!

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Having Mom with me all day yesterday was beautiful. As we sat in my RV named JOY we had lunch, we colored in what I hope will be my next published work, and we flipped through several magazines. We even went for a ride in JOY!! She’s still so aware at times, because as I buckled her into JOY for our ride she said “you can’t drive away in your house!” I was hysterical!! Being with her over the Labor Day Weekend was fitting… She labored so hard during her life to keep clothes on our backs and food on our table! I think she understands somewhere in her mind that I now LABOR for her in any and everything that I do.

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If this weekend had unfolded the way it was originally planned, I’d be writing this from Orlando. BUT, I would have been busy, rushed, chatting with people and signing books. I wouldn’t have spent time with my Mom’s best friend whom I’ve known my entire life, or watched my Rector and my fellow parishioners gush over my Mom before and after service or had a simple lunch with Mom that we giggled through for no reason at all. I didn’t know what was coming this weekend, but I knew it would be something special because I wasn’t even upset when my gig was cancelled. Turns out this weekend brought me peace, and it was simply Meant to Be!! Happy Labor Day from Mom and me!

Ten Hours of Life-Changing Joy!

When was the last time you spent quality time in a relatively small community and got to know some of the people? On Monday July 23rd I was Blessed to spend a good portion of the evening with Caregivers from Phoenixville, PA. Have you ever heard of Phoenixville? I certainly hadn’t heard of this Borough of 20,000 people before making the trek there after work in the intermittent rain and traffic followed by steep hills and windy roads. The drive there was amazing, with miles and miles of fields of nothing but grass, corn and cows, and then suddenly I was in a quaint town of row houses, churches and schools and a pretty cool town (Borough) hall. As I drove up the final steep hill to attend the 2018 Caregiver Awards sponsored by Miss Kitty’s Care, LLC, Bethel Baptist Church appeared on my left. Looking out over the church parking lot, you could see forever down into the valley. It was breathtaking.

When I entered the fellowship hall, I was greeted by a beautifully decorated room filled with purple and white balloons, table settings and gift bags for award recipients. This did not feel like a small town event. It was big time, attended by a representative from the State Senator’s office and the Mayor of Phoenixville with whom I shared a table! Peter Urscheler is an incredible individual who was a caregiver to both of his parents before their deaths and is the youngest mayor elected in the Borough of Phoenixville, and the second youngest mayor ever elected in Pennsylvania.

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Miss Kitty’s Care was started by Theresa Thornton who was her Mom’s caregiver for many years until her death in November of last year. Theresa is a force of nature, focused totally on supporting caregivers and even makes greeting cards specifically to help inspire caregivers. She works tirelessly to put on this event each year, calling on her friends and sponsors to help make the event a night everyone will remember. The nominees for the Caregiver Awards were nominated by family, friends or co-workers and were all so deserving. The winners included a father and son duo who are caring for their mother / wife who has a variety of health challenges. The son then took over caring for his mother while his dad battled cancer. They accepted their award together and were a dynamic duo! A mother who was nominated by her daughter won for continuing to love and care for her mother who was verbally abusive all the way until her death. The woman had remained joyful being the caregiver for her mom even though the verbal abuse and actions included being cut out of her mom’s will. The winner who inspired me the most was a mother who was her daughter’s caregiver from the time her daughter was diagnosed with cancer until her death. She had understandably lost her joy when her daughter died, but told me that she was starting to get her joy back. After my speech, she and I had an amazing moment! We hugged for what seemed like forever and she told me that my inspiring words had confirmed for her that she’s going in the right direction in reclaiming her joy. She plans to continue helping others as she believes that this is the work that God has intended for her to do. I shared with her that feel exactly the same. I don’t believe that my calling is to be a minister which I’ve been told many times including that night, instead I believe my calling is to help caregivers as we all encounter different challenges along our journeys.

Throughout the awards there were amazing musical selections that brought tears to everyone’s eyes. The songs included Hero, You are My Friend, and Rise Up all that inspire caregivers to keep going!! There was also a dance to Rise Up by a young girl that was simply captivating!! Theresa Thornton is one of the best Event Planners I’ve ever met. The production of the Caregiver Awards was amazing, from the sponsors, to the prayers, to the nominees and their supporters and of course to the winners and the gifts baskets and awards they received.

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As the night ended, I was so sad even though I had to drive three hours back home and was going to get very little sleep. I was sad because I had spent an evening in a church fellowship hall with a group of people who genuinely love and care for each other and all that they contribute to caregiving in their community. The audience was diverse in ALL ways, YET all that was felt in that room was JOY. People cheered for each other as portions of the nominations were read, they held each other when they cried, and they swayed and hummed along during each song. I may have been the speaker, and I received a rousing standing ovation at the end of my presentation, BUT I came away from that night with a level of joy that I didn’t know was possible! The mayor invited me to come back to the city to hang out. People invited me to their homes and churches and exchanged business cards with me. It was authentic love and joy that you don’t often see and feel. I hate the fact that my Mom has dementia, YET because of it I’ve been privileged to travel to so many amazing small towns and big cities and met people I never would have come in contact with otherwise. My journeys to Pennsylvania this month to Waynesboro on July 11th and Phoenixville have been life-changing. The ten hours that it took me to travel to and from Phoenixville and participate in Miss Kitty’s Care 2018 Caregiver Awards allowed me to feel and really embrace the joy that was in my soul without rushing off to the next thing. I allowed it to really sink in and I pray that I’ll be basking in this joy for a long time.

730 Days of My New Life!

On July 17th 2017 I wrote a blog post entitled “365 Days Without Tim, My Grief in LEGO Bricks!” It was such an emotional and freeing time for me because I often express myself with my hands and build what I’m feeling. It helps me to actually “see” what I’m feeling. I loved looking at the large LEGO structure that represented my Grief (blue), Growth (green), Memories (yellow) and Love (red).
July 17th is an emotional nightmare of a day, as not only did Tim die on that date in 2016, but my sister died on the same day in 2011. Maybe God’s plan for me was for all of my sadness to occur on one day.
I said last year that I’d continue my “grief build” into 2018 because another widow who has become a friend had warned me that the second year without Tim would be much worse than the first. She was absolutely right and it was brutal at times! This year I added an entirely new large plate to my build, and since my life has changed dramatically I decided to call this year’s memorial post “730 days of my new life”.
I added a piece, or two or three over the last 12 months as events and emotion led me. AND I added part of the white Temple I built after seeing the Burning Man exhibit at the Renwick Gallery in D.C. because it absolutely reflects how my Faith and Spirituality has evolved over the past two years. Here are how the four colors are represented in LEGO bricks and the stories behind them.
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Grief (blue)
Being alone at night continue to be the worst time for me! I still hear noises at times but I’m not nearly as afraid to be alone as I was last year. The biggest surprise of this year is how easily and how much I cry now. I cry about everything that reminds me of Tim, and I never see it coming, it just happens!! I cry about the happy and fun stuff too wishing Tim was experiencing it with me! But I wipe my tears and embrace the moments just as Tim would want! Prior to two years ago I rarely cried….and now the tears just flow, but I’ve embraced them!! So the many new pieces I’ve added to last year’s section are indicative of my tears!
Growth (green)
My how I’ve grown!!! I traveled to new places on the book tour including Louisville, KY,  Waynesboro, PA and Boca Raton, Fl, places Tim would have absolutely loved. I spoke to my largest audience to date (800 AKA sorority members in D.C.) last month at a Sunday afternoon tea.
Work continues to be a great place for me! I love the team I work with and they love me and the job I’m doing. I’m amazed that they continue to be so supportive as I spread the word about Alzheimer’s across this country.
The thing I still haven’t grown in at all in my new life is cooking! I’ve mostly avoided it though I enjoyed cooking with Tim. As of now I love the healthy frozen meals with veggies that I’ve been living off of and I think my awesome health this year loves them too! I just pop them in the microwave and I’m all set! My goal is still to use my Instant Pot that I purchased in 2016 a lot more over this next year.
I made a big decision about my house and signed a maintenance contract through Michael and Sons so I don’t have to worry about huge bills for home repair! I also continued to purge and downsize. I’m sure my trash collectors are happy I’m done with the cleaning as I had dozens of huge bags of trash over this past year.
The many green pieces I added to the build this year reflect all of the growth I’ve made in my business and my personal life, especially around the house.
Memories (yellow)
I cherish all of the memories Tim and I made together and even though I may cry a little when I see them, the Facebook memories are always a huge boost for me whenever they pop up!!
I’m making some incredible new memories too! I took Kim and Kendal to LEGOLAND and did all the things Tim wanted to do with Kendal including staying in the LEGOLAND Hotel.
I began offering my LEGO Art class for those with dementia who live in the Collington Episcopal Life Care Community. I’ve been surprised at how fulfilling a ministry it’s been for me!
I met my friends Larry and Barbara in Pigeon Forge, TN for a great four day camping adventure. We’d tried on several occasions to go when Tim was still here, but something unfortunately always came up! I was thrilled we finally were able to do it, and Tim was with me all the way as I drove the 9 hours there and back all by myself!! As we caught up on our busy lives, we laughed, hiked, ate amazing food and drank some wine too!! What a confidence builder that trip was for me!!
I went back to St Croix to deliver two presentations to the Virgin Island caregivers!! I was thrilled to see them all again and how they were thriving after the devastation of Hurricane Harvey in 2017. I’ll never forget how this group ministered to me in 2016 when I went there to speak to their group 10 weeks after Tim’s death.
My memories new and old sustain me!! Seeing all of the yellow pieces stacked on top of each other reminds me of how intertwined my memories are from throughout my life. One memory, runs into and builds off of the next memory! Recalling the memories brings me so much joy and reminds me that I’ve had a wonderful life thus far!
Love (red)
There’s no way to adequately express my sincere gratitude for all of the LOVE and support I’ve received from my family, friends, Facebook friends (especially those in the Alzheimer’s Support groups), friends who are family including Loretta’s Angels Support Group and especially my work family with whom I spend a lot of time!!
As you can see from the number of red pieces I’ve added since last year, the love I’ve shared and the love that’s been given to me has been overflowing! Though it may not be visible or evident from the photo there are more than 150 red pieces and that’s a lot of love!! I’m so Blessed and grateful!!! You have hugged me, held my hand, wiped my tears, laughed with me, texted me and called me!! Where would I be without all of that love?? I don’t know but I’m glad I didn’t have to find out!!
Final Comments of my Grief Build
I’m so happy with how this build turned out. On the second plate that I added this year the focus was on how I walked the path between all four of the pillars over these 24 months. Each of the paths led to the next one. All of the paths go up and down like a staircase and basically go in a big circle like life!! Each color has its own small structure, but there is a red piece in each of the four corners because I was always surrounded by love. There are also four pillars with alternating colors because I could change from one mode to another in seconds depending on what was happening. In a nutshell, when I look at these pictures I can see and feel some of what I’ve been through these past 24 months.
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I’m likely going to take my Grief Build apart at some point in the coming months…. kind of like all of the pieces to the Burning Man exhibit being burned at the close of the exhibit!! I’m certainly not trying to burn away Tim’s memory or love. Quite the contrary actually, because everything about Tim and our life together is burned into my heart and soul. Tim would love this Grief Build because it’s sitting on an orange plate and because it really does capture our love and our love of LEGO bricks!! It’s tall and wide like the ground we covered together, and our faith that carried us through sickness, in health and in death is at the center of everything!! He’d surely be smiling!! In the coming year, I look forward to continuing to embrace my Grief, to Growing and Loving and making new Memories and Tim will be with me on the journey as always. Love and miss you Tim!

There’s Always Hope!!

Right after Mom’s 81st birthday in February 2010 I put her name on the Waiver Registry List in Prince George’s County, Maryland for services to help with the financial cost of her care. I’d hoped that her stay on the waiting list would be relatively short because at the end of 2010 Mom would run out of her savings that I was using to pay for the balance of the monthly cost of her care that her retirement check didn’t cover.

Imagine my shock when I learned that this was absolutely NOT going to be a short stay on the list because there were more than 23,700 people on the list ahead of us! I began paying for the balance of Mom’s rent in Jan of 2010 and then added the additional cost of her incontinence supplies in mid-2016. Like most children of elderly parents I had not budgeted for contributing for the cost of Mom’s Care! But thankfully in addition to having an amazing job, I have my book sales and speaking engagements to offset the cost of Mom’s care. I know how lucky we are because so many people aren’t in this position!

Over the years while we were on the waiting list, the Department of Aging would check in to see if we still wanted to be considered for services. Of course I said YES! Fast forward 8 years to Jan of 2018. I received a call requesting an initial assessment of Mom for services!! Holy Cow!! Could we be getting near the top of the list??? No one would confirm, BUT in April of this year I finally received the letter I’d been waiting for!! It was now time for us to be considered for eligibility for services!

But the process was no cakewalk by any means!! There were many forms, appointments, assessments and reviews that had to be completed over a 60 day period. As we got closer to final approval I then had the task of visiting group homes that participated in the waiver program where I would move Mom to. Ms. Mamie was no longer a participant in the waiver program which brought me to the stunning and heartbreaking realization that I’d have to move Mom after 9 awesome years there!

Visiting the group homes was daunting without Tim!! When we were looking for a new home for Mom in 2009, Tim and I visited places together! When we didn’t like one of the homes we’d laugh and say “Next” or “Moving On”! I felt lost doing that without Tim but I trudged on, hopeful I’d find a place that I felt good about! I found a new place and then received the formal letter from Baltimore that Mom was eligible for services!! I was so relieved that I cried!! My hope had come through!! I did know that others weren’t as lucky as we were with some dying while still on the waiting list. I said a prayer for them!

Though Mom is not aware of her surroundings at all, I was terrified about moving her!! When I told Ms. Mamie and Mom’s caregiver Angelina that I had to move Mom, both so supportive! Because of the way the state program works you have to move the person as soon the state approves, so I wasn’t able to give 30 days notice. I offered to pay the full monthly amount but Ms. Mamie refused. I sent her $500 and gave Angelina $500 as a gift for her incredible care of Mom. Angelina will use the money for the orphanage she runs in her home of Tanzania.

The night before the move I didn’t sleep a wink and I cried a lot!! Was I being selfish in accepting the financial help and moving Mom to a place I knew nothing about?? I was having so many second thoughts but I knew I had to go through with it to save the current $800 per month I’m paying for Mom.

Angelina had helped me pack and load the car in several trips earlier in the week so that on Sunday morning July 1st all I had to do was take a few clothes and Mom to the new place. Mom was never a big hugger but one of my favorite pics was she and Angelina saying goodbye!

Sunday morning I arrived early to pick up Mom with renewed hope!! We were able to take our time to get ready and Mom really enjoyed her leisurely breakfast. Finally it was time to leave Ms. Mamie’s for the last time I was really about to cry but I promised Angelina that I’d bring Mom back to visit!!

We drove the 12 minutes to Mom’s new place called Lifesprings Eldercare, LLC. It’s a beautiful home, one of three group homes owned by Fay Hutchinson and her husband!

Ms. Hutchinson is very nice but isn’t quite as friendly as Ms. Mamie, yet she and the two caregivers greeted us warmly as we arrived. I started to breathe a little easier. They laughed and joked with Mom and she was surprisingly very talkative. I had shared with Ms. Hutchinson that Mom isn’t talking a lot these days! I hung out with the two caregivers for quite a while after Ms. Hutchinson left and we carried all Mom’s stuff up to her room, which just feels like home!

But I had forgotten to bring hangers to hang Mom’s clothes so I ran home to get enough hangers for the job. When I returned, the caregivers were engaging Mom was a set of dominoes which I am not even sure Mom ever played. Yet Mom was hard at work matching up all of the dots on the dominoes.

I figured that was as good a time as easy to leave so the caregivers could get Mom settled without me. Not to mention that Mom was so engaged with the other resident at the table and the caregivers she hadn’t even noticed I had returned!! After watching the fun for about 10 minutes I said to Mom, “I’m leaving now can I get a hug?” to which she replied “I’m playing a game right now”!! Me and the caregivers all burst into laughter!! I laughed all the way to my car filled with new hope!!! I’m so thankful for all the love and prayers I have received as we prepared for this new transition!! I will miss Ms. Mamie and Angelina but I’m so hopeful about our financial future thanks to the blessing of the waiver registry! The message I take away from this last six months of work to achieve this for Mom is that you always have to have hope!! Love you Mom!