Monday, January 6, 2025

Monday, January 6, 2025

Tonight's picture was taken in January of 2009. Mattie was home between hospital visits and that day he transformed a Styrofoam box into a bicycle helmet. Truthfully sometimes Mattie would just make me laugh. His creativity had no bounds. I can't tell you how many cardboard boxes he transformed during the year he had cancer. Mattie was remarkable ! He never lost his appreciation for life and trusted and loved us implicitly. 

Quote of the day: The purpose of life is not to be happy. The purpose of life is to matter, to be productive, to have it make some difference that you lived at all. ~ Leo Rosten

Last night my parents wanted to watch something on Netflix. Typically that isn't a problem, as I click through the app on TV and it works without a hitch. Last night, I was locked out of the account. Every technology issue in the house is a crisis, and the only one dealing with any crisis that arises is ME! I went to my computer to log onto the Netflix account and what I was seeing made no sense! So that led me to get on a Netflix chat at 9pm. I am SO SO grateful to anyone who helps me. I can't tell you how many chat people write and tell me that I am the nicest person they have worked with in a long time. One person said, having customers like me, reminds him why he does what he does! 

I was chatting with the Netflix person for an hour! We got down to the bottom of the problem and now my credit card and account are matched up with each other. Literally once we did this match up, my Netflix account magically started working again! I thought I caught all change overs like this in the divorce, but I on occasion find outliers like this, and thankfully I have perfected the art of persistence and asking questions!  

Last night I had trouble sleeping. Why? I was getting worked up about the snow storm! That may sound silly, but being quarantined at home is hard on me and then I worried.... would I be able to shovel all the snow? That kept me up for a while, but I eventually fell asleep! What woke me up was the sound of neighbors shoveling their driveways. When I looked out the window, I saw this.... a total white out! It may look beautiful, but to me snow equals isolation! 

I jumped out of bed, fed Indie, and immediately went outside to see if I could manage this snow. I started shoveling our side steps and front walkway. Literally after that, I said.... NO WAY! I couldn't do any more. The snow was wet and very heavy. I also can't injure myself, because if I do, my whole household would be crippled. 

I am SO SO LUCKY! I had neighbors come over today and they shoveled and used their snow blower! That may not sound like a big deal, but it was to me. No one is required to help me, so when I have people looking out for my well-being, it lightens my spirit. It makes me feel less alone in this storm. 

If you read last night's blog, then you know I was dealing with my own existential crisis. The crisis of being alone, not having Mattie, not having my husband, and my inability to leave a lasting legacy. This morning, while jumping from one task to another, I received a text message for one of my support angels. Part of the message is going on tonight's blog and the second half will be applied to tomorrow's blog, as I continue to reflect on my discussion of memories. So part one of the text message said...........

I've been thinking about your blog last night. Your memory keeper is your blog and your writings. The blog is absolutely a poor substitute for Mattie, but your words have so much value! You have a legacy in the work that Mattie Miracle has accomplished and how it continues to impact families and lives. The written words you have written to all of us --- your very real pain, feelings, and joys. These words will last longer than some memories will with people. Mattie and you will not be forgotten. 

When I think about memories, I typically associate them as something carried on by PEOPLE! I admit I am biased, as I viewed Peter and Mattie as my main memory keepers. But as my support angel reminded me, memories can be carried in many forms and by many people. Not only by who we are related to! Very true! I have had friends and even my therapist try to get me to think beyond my narrow lens of my immediate family. Naturally if I account for all the special and amazing people in my life, my network is large, interwoven, and strong. I do not discount this at all, and I am grateful for it, but when facing catastrophic losses, my natural reaction is to close down, and isolate. Which is why when I read today's text message, I realized.... yes of course! My memories are captured in this blog. Mattie's life is captured in this blog! My perspectives, thoughts, feelings, hardships, and successes are captured here too. Why is that important to me? It is because for each person who reads this blog, you become part of my memories, you may share a story or two with people you know, and in essence that is how Mattie's legacy and my journey of being his mom will live on forever. Words are powerful, words express meaning, and words don't die. Words written in this blog serve as my institutional memory. I am grateful for today's reminder, as these reminders help me when I am in despair.  

Sunday, January 5, 2025

Sunday, January 5, 2025

Tonight's picture was taken in January 2009. We took Mattie to New York City to start his experimental treatment. In between hospital visits, we toured the city with Mattie. Getting around any city in a wheelchair, provides its challenges, but we made it work. It was on that trip that Mattie fell in love with the NYC yellow taxis! This photo captured our adventure up to the top floor of the Empire State Building. An experience that Mattie talked about for months. 

Quote of the day: Forgetting past memories doesn’t mean that you were not a part of it. You build those memories and your loved ones know it well. ~ Caroline Lee

A good friend and I were writing back and forth to each other today. In the process, we chatted about living with Alzheimer's Disease. When caring for a parent with this disease, I can assure you each day has its own challenges. My dad can ask me the same question 10 to 12 times in less than thirty minutes. Most days I answer the repetitive questions, or have him work toward the answers. On a rare occasion, I get frustrated. Not at him, more frustrated with my existence, as I do not live a normal life. 

I try to always remember that my dad, the man I always knew, is in there somewhere! Though he is a shell of his former self, who he is, hasn't been forgotten by me. I am his short and long term memory. He is very dependent on me for everything. Everything from showering, dressing, toileting, eating, medication management, keeping his schedule, managing finances, and shuttling him to appointments. It is a large responsibility and it is hard to go from being my parent's child, to the adult on duty at all times. When I think about what I survive in any given day, alone, it is amazing I am still standing. 

In 2017, the Alzheimer’s Association completed an extensive survey on the effects of Alzheimer’s on the family caregiver. The study confirmed what many who provide family care might have guessed, which is that the effects of dementia on caregivers aren’t just physical. Caring for a loved one with dementia or Alzheimer’s impacts nearly all areas of life, from our time spent with friends to the family finances. An estimated 5.8 million people in the U.S. live with Alzheimer's disease and related dementias. By 2060, that number is predicted to rise to 14 million.

Did you know:

• More than 90% of community-living adults 65 and older with Alzheimer’s disease rely on the help of family and other unpaid caregivers.
• In 2021, caregivers of people with Alzheimer’s disease or other dementias provided an estimated 16 billion hours of informal (i.e., unpaid) assistance, a contribution valued at $271.6 billion.
• The median caregiving time frame is about five years and may span an extended period, reflecting the long course of illness.
• Relationships between spouses/partners were strengthened the most from the experience, with 81% believing that “being emotionally there for each other” was a source of strength they drew upon for caregiving (Alzheimer's Association Survey, 2017). 
• Unpaid caregivers experience their own emotional, physical, and financial impacts.

I am my family's member keeper. I manage and hold my parent's memories, my memories with them, my own memories, my memories of Mattie and his incredible life, and the memories of my marriage. Truthfully it is a lot of memories to manage on my own. The beauty of memories is to share them with someone. After all, memories unite and bond us with our loved ones. 

Having lost Mattie, the memories of me, my life, my parents, and my marriage die with me. This is a very profound and disturbing reality! Truthfully there are times I can't even go there because it makes me feel so disillusioned, that I ask, what on earth is the point to all of this? We like to think that our lives are important, that we serve a vital purpose, and that our contributions on earth will always be remembered! This is definitely true for my parents, because even if they don't remember, I do! I am there to remind them, I am there to carry on their legacy. But the same is not true for me, and I would say as challenging as managing dementia care is, what is most profound and will always be is the loss of Mattie. This loss changes shape and evolves with every developmental stage in my life. Without Mattie, I have no legacy keepers and that is an earth shattering and depressing notion. I continue to grapple with Mattie's loss, but with the decline of my parents, the purpose and meaning of my life weighs heavily on my mind.