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.

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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!