Where Are We on Dec 31, 2020?

LOTS going on the last couple months. I have made some emotional decisions that I think are best for our future.

Where do we live?

In 2019 before Tom's official Younger-Onset Alzheimers diagnosis, we bought a condo in downtown Dallas in anticipation of our empty nest. When Tom got the EOAD diagnosis, I decided that moving to a three story condo was insane and to stay in our ranch house of 25 years. Then, life gave us a twist. Our ranch house had roof leak and required us to move out to repair ceilings, floors and roof. We moved into our remodeled condo temporarily. Then came the next twist. Tom adjusted exceedingly well and he wants to stay in condo and the boys like it as well. We will call this Condo #1.

The additional consideration is my Dad (Papa) was going to start staying with us more in ranch house to help out. Condo #1 not conducive to that arrangement for him. Then the next twist comes and Papa's landlord in Stephenville informs him that he needs to be out by end of year. So in December we find Condo #2 blocks from us and purchase it for my Dad and move him in yesterday! What a whirlwind.

So. It is with too much emotion that I have decided to sell the only house Tom and I have ever owned and where we raised our family. In my dysfunctional childhood, I moved 16 times living with 6 different sets of caregivers. As a young adult, I moved 15 times before buying our ranch house with Tom. So I moved 31 times in my first 30 years of life. This blog is therapy! No wonder I am so ridiculously anxious and sad about selling the only stable home I have ever had.

How is Tom?

As mentioned, Tom has exceeded my expectations in his ability to adjust to Condo #1 with very little stress. He loves walking on the Katy Train. However, we did get bad news yesterday. Tom has a macular hole on his left eye. He had been complaining of double vision. There is some research to support the proteins associated with Alzheimer's can impact macular health and might even be predictor. We have an appointment with specialist at UTSW on January 8th. I suspect surgery will be required. Ugh.

Tom's daily mental health remains strong as well as his intellect, self-care and sense of humor. He has bad days mixed in where confusion seems more pronounced. It seems that as long as we keep his life stress free and have no expectations that he manages much better. He is vulnerable to any indication that he did anything wrong. He sleeps allot. On mentally taxing days, he will sleep as much as 15 hours and 12 hours is the norm. He is now on both Aricept and Namenda to help cognitive functioning. It is not clear if these drugs help but we succumb to the "it might help so why not" Alzheimer's community thought paradigm.

How am I?

I have allot on my plate with running my business, Tom's health, my health, moving and organizing our affairs for the EOAD. I am unable to mentally distance myself from the COVID tragedy and the alarming American societal issues. I lost a dear friend that I think of daily and miss. And I try to be a good mother, wife, sister, aunt, daughter, friend and community member but often feel I fall short. I do not manage my anxiety in a consistent way.

All this said ... I am grateful for being able to financially support my family and having beautiful homes. I have endless appreciation for our empathetic sons, Tom being Tom (still), my Dad staying COVID free, my brother loving me unconditionally and always there no matter what, my funny nieces and nephew, supportive friendships, our Alzheimer's support group and long-distance encouragement from Tom's sister and niece.

I am also keenly sensitive to the human condition. I suppose a combination of aging, COVID, political climate and American divisiveness has made the burden on our hearts too heavy. I personally know far too many people whose health is not good, mental health is challenging and loved ones have been lost in 2020. So many of our households are struggling. I am not a great philosopher and have no magical answers. And I am scared for my family and many in my sphere of caring. I suppose love, empathy, acceptance and a little help is what we all want to receive and many of us want to give.

What is my 2021 wishlist?

• All healthy
• We sell our ranch house and are settled in our new home
• Tom remains stable and does not decline significantly
• Secure health insurance for boys and me
• Start my CASA volunteering and bring a foster child into my world
• Manage my business to support us and our consultant families
• I figure out how to eat healthy, exercise and achieve good sleep hygiene
• Stabilize my mental health
• Sam and Noah continue to find their path in positive ways
• Spend more time with people I care about
• Travel some
• Write more
• COVID crisis contained
• Human decency prevails

How do we move on?

When the boys where young, most mornings Tom would throw the football with Sam and Noah in front yard as they waited for carpool. This week Tom asked to throw once more with a symbolically tattered football ... 

Walking away in the sunset ... I could not resist - ha! 

Tom throws long to both boys

Tom running to ball and Sam reaching

Sam tosses to Noah

Sam ready

The Football. Many Memories.

Keep'in The Humor

 

What is this? Our family group text.

Context: Yesterday Tom got somewhat lost for the first time. He was on Kady Trail and could not quite locate his landmark for coming off trail to condo. It is the Kalita Humphreys Theater. Sam was "watching" him from the Life 360 stalker app and figured out there might be an issue. Sam found Tom and helped him find right path. Tom has now put name of theater in his phone so he can pull up next time. Fortunately, Tom was not too stressed out about it.

More Context: We have bought some new Smart TVs for our condo.

Conclusion: Tom's sense of humor and intellect keep us laughing!

Right Now: I am listening to Beatles music waft up from first floor Smart TV where Tom is picking at his guitar and Sam is chatting with him. I am smiling.

The Letter

Not the greatest pic of a video on my computer 😉

The Center for Brain Health made these videos of our family last Summer. These are candid reflections from our family on Younger Onset Alzheimer's.

This one with Sam and Noah is absolutely incredible ... The Letter is how I would title this one. I am so proud of my guys: Noah, Sam and Tom 💙(get your hanky while watching - really)

Sam and Noah Understanding

(4 minutes - click above)

And this is us ... My Courageous Husband is my title for this one ...

Tom and Ronda Acceptance

(3 minutes- click above)

Lost

When Noah was in second grade, his teacher helped us introduce the metaphor of buckets to him. Acts of kindness, giving and sharing fill the buckets of others while doing mean things dips into those buckets. We got the kid's book, the workbook and I even created a "cup of kindness" at home to reinforce the concept. Each day we would talk about the buckets of those around us. And, that by filling the buckets of others, then we also filled our own buckets. The real lesson is how to be happy and the impact of positive behaviors on our emotional health.

It is not a complicated paradigm. And I am wired to fill buckets. It is when I am most happy. It is my calling.

However.

I just cannot seem to consistently maintain a trajectory of filling buckets including my own bucket.  I try really hard. But clearly I am doing something wrong because I get whacked down allot. Is it life or is it me? Or some of both?

I intellectually get that it is a mind frame. I do the self talk and create the narrative in my head. I take action. I get on a roll. I put in the right support systems. I am honest and transparent.

And then I am bulldozed back.

The despair of the up and down, the up and down, the down. The defeated feeling. And the wonderful moments mixed throughout too.

And the minutes are passing me by. The finite time I have with Tom. The finite time before my youngest child leaves home.

And knowing there is this person who just wants to fill buckets. Lost.

                 Despair by Dominique Landau

Looking at a Few Wins

Things to be grateful for ... positive focus ... just a few wins:

Repairs by Noah and my Dad: Noah has stepped up to start helping with a few household repairs. Our Condo door bell went kaput. My Dad helped me pick out replacement doorbell kit at Home Depot. We grabbed Tom's tool bag and headed in with determination. Noah did great job with my Dad's input. And we have a working doorbell for $25! May seem small but every little bit helps!

In my Alzheimer's Support Group: A wise caregiver discussed the marriage paradigm where each of us has spent many, many years building skills to execute the marital roles that each takes on and you get really good at your stuff. This division and balance is what defines household harmony. Now, we have to start doing what our spouses have always done and building that skill set late in life. Gonna be honest, I do not want to learn to use a drill!

Music and Tai Chi by Tom: Tom has pulled out his beautiful acoustic guitar and started playing it. He sometimes does this while watching music videos. He has also been doing on online Tai Chi class set up for those with dementia (it was set for one month so hoping they will extend.)

Yoga, 2020 Election and CASA for Ronda: I have been hosting backyard yoga for about three months and am enjoying it way more than I expected (our fabulous teacher, Phoebe, went to college so in process of getting new COVID safe teacher.) The last two weekends I have gotten myself out of the house to be part of Lit-Stick project that places a large post-it sheets on doors with 2020 Election information and I have gotten to do it with my Dad and my friend Susan which was extra fun. We covered 165 doors over the two weekends! AND, I attended orientation to be a Dalls CASA volunteer advocate for abused children, was interviewed and selected! I start CASA training in a couple of weeks.

CASA: CASA stands for Court-Appointed Special Advocates. CASA volunteers are assigned to a foster child as the child advocate. Yes I understand that taking on something else is counter-intuitive to my overwhelmed status. Noah already expressed legitimate concern. We spent two years getting our Foster Care license and were so fortunate to foster three little boys in one year but Tom's EOAD made fostering little ones impossible. This left a HUGE hole in my heart. So taking care of myself involves listening to that voice calling me into the foster care community. 

Return to College for Sam: While we miss Sam, he is super happy to be back at Trinity University in San Antonio living in his on-campus apartment with two roomies. And he has returned to competitive debate with all being online (crazy what we are doing virtually all across the world now!) In the Season Opener hosted by Northwestern, Sam and his partner finished in the top 8! This is tremendous and I am unabashedly proud of him. The college debate topic this year is: The United States Government should reduce its alliance commitments with Japan, the Republic of Korea, North Atlantic Organization member states and/or the Republic of the Philippines by at least substantially limiting the conditions under which its defense pact can be activated. 

Tom enjoying his guitar. Music has proven to be a really important connection for those with dementia.

Prelims included wins over teams from Dartmouth, Harvard, Michigan, Berkley and Northwestern resulting in #12 seed in a field of 126 teams!

After Prelims, 48 teams out of 126 moved to bracket. Trinity made it to Quarters! The Dartmouth team Trinity beat in Prelims ended up winning the tourney. 

Noah figuring out the ringer that goes outside the door.

And Noah for the install!

My Dad and Noah with tool bag planning the work.

We have been so fortunate to take the yoga to the lake on weekends thanks to generous friends at sail club.

Online, in-home Tai Chi for those with dementia. I am hoping the class continues.