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.

Alzheimer's and COVID

Tom is 60 years old. He was officially diagnosed with Early-Onset (Younger Onset) Alzheimer's when he was 59 years old. He was diagnosed with Mild Cognitive Impairment when he was 57 years old. Alzheimer's is a progressive terminal illness so he had showed signs for a long time; I guess we would need to say years.

The undiagnosed and secretive years were particularly hard. Those were the years Tom felt like he was loosing his mind and he was letting everyone around him down: work colleagues, family, friends, himself. Those were the years before diagnosis and I kept trying to make things better on every level and nothing worked. My frustration and anger were real. In Fall of 2018, we went public and Tom received the official diagnosis. Everything changed in that moment.

We are in a good place right now and some of that is due to COVID.

• Wills: Right before COVID hit, we completed all new Wills and various legal documents with a trusted elder care attorney
• Finances: I did some research and decided we had a shot at applying for LTD with Tom's prior employer. With tenacity, I started the process and I was meticulous in managing the qualifications and application. Tom was approved and with a retro payment to effective date! To say we were shocked was an understatement. We now have SSDI payments for both Tom and Noah and an additional LTD benefit for Tom. I also found a little known COBRA extension for certain SSDI recipients so we have healthcare until next Spring.
• Driving: Tom was already heavily restricted with driving and COVID sped up (pun intended) the decision for him to no longer drive. Tom was able to make this decision without stress. With COVID, he does not go anywhere so it has no real impact in our current day-to-day living situation. We traded in both of our Prius cars and I got a new hybrid which made me super happy!
• Medicines: Oh man, the management of meds is NOT fun especially with Tom's sensitive digestive system. We have finally got him down two meds for cardiovascular health and back to a therapeutic dose of his brain med (Donepezil/Aricept.). And he is no longer on anything for mental health.
• Vacation: Tom does best when we are in our home of 25 years where all is familiar which is key coping strategy for loved ones with dementia. SO, when we (boys helped!) planned a Colorado social distancing get-a-way last month, we were very thoughtful about how we would go about it. I am thrilled to say all went very well. We had a great time and Tom was able to enjoy himself without too much confusion and anxiety.
• Support: The Center for Brain Health has been our lifeline to our new community: the community of families whose loved one has dementia. We meet weekly on Zoom. When Tom meets on Thursdays, I can hear him laughing and talking. It is important to have friends who really and truly understand.
• Tom's Current State: Tom's physical health is good other than his eating habits being impacted, some loss of weight and sleeping allot. Tom's executive functioning and short term memory continue to decline. His "in the moment" cognitive level is still great thus daily interactions with him feel mostly normal. Thankfully, his self-care is high functioning. Tom's sense of humor and core essence is still there! It is really about meeting Tom where he is and expecting nothing more. When we do this then all of us function peacefully. It is about a life of worth and respecting that paradigm for everyone.

Since March we have practiced social distancing. Sam and Noah do the grocery shopping for things not delivered. We have very little interaction with extended family or friends and when we do it is done with caution and respect for not exposing ourselves to COVID. Sam and Noah have been incredible - truly. It is not easy to be 18 and 20 and not see your friends at all - for months. We did not ask them to do this; this was a decision they made and they manage. If Tom gets COVID, it would be horrific on every level. If I get COVID, the impact to our family and my business could be crippling.

HOWEVER, COVID has given our family priceless gift of time together. I would have never imagined our family of four would have this kind of time together at this stage of Tom's illness when we can still interact in positive and joyful ways.  Both boys have had internships they could do online and remote. Since I work from home 100%, it is much easier for me to be there for Tom in the ways he needs. Right before COVID hit, I was starting to feel quite overwhelmed with the care taking that was surfacing.

The Future

Our simplified approach to staying COVID safe is going to change in near future. Sam will go back to college which will make Tom incredibly sad and we will not see Sam until November. We will worry for Sam's health. Noah will go back to high school for his Senior year - maybe, probably, who knows?!? Noah's private school will be able to execute in a safe way but Noah will still be "out there." Noah also wants to get a job so we will see where that lands. While Tom and I will continue to social distance and Noah will practice safe measures (masks, sanitizer, etc.), we will have to figure out how to manage inside our home as Noah comes in and out. I do not know what our protocol decisions are yet. We will consciously do the best we can to stay safe and healthy knowing the stakes are not only life and death but a potentially tragic acceleration to the ravages of Alzheimer's.

Tom manages his phone very well so likes to watch old favorites, visit museum sites and listen to music.

Making Smores indoors on vacation!

Lots of nice hiking in Colorado!

Voting!

HeartbreakS

I had a loss this this week. And I am so sad and maybe even too much so ... we use the word trigger allot and I am thinking I have all kinds of complicated triggers pounding through my soul.

I have to go back to college on this story. I had a pretty funky and messed up childhood so I was one of those teens who was SO ready to go to college and define life on my own terms. I loved my college years that were full of best friends, dancing, parties, baseball, pizza and Greek adventures. It was not without challenges but when you are young, figuring it all out was just part of coping and moving to the next thing.

I married one of those best friends with our best friends standing around us in the on-campus chapel. The two of us went on to graduate school and had a pretty wonderful few years but ultimately our individual brokenness could not survive as a couple. We went our separate ways 28 years ago and our paths did not cross.

Last summer, this college sweetheart and my first husband with the most beautiful smile reached out to me. He had cancer. It sounds like a cliche but he wanted to say some things to me to bridge some of the pain we experienced all those years ago when we divorced. And a few of those best friends from our magical college years rallied to be there for him. We got to spend a few afternoons with him in his home with his hilarious parents, we shared meals at local restaurants, rolled with laughter at old photos, I spent a couple hours at the park and shared some ice cream and I even spent an evening at Big Baylor.

And of course all of this coincided with my Husband being diagnosed with Younger Onset Alzheimer's.

Life can really throw some doozies at you. And I get triggered into feeling like I just can not ever do all I want to do, that I should do more, that I did not do enough. I am an idea person and a dreamer so I come up with all kinds of ways I want to experience life. I have always been a caregiver and there never seems to be enough time to care for those I love in the ways I want. I get overwhelmed with empathy across an entire spectrum: for those close to me all the way to every human injustice around the world.

And in the midst of COVID-19, my first husband dies Friday night surrounded by his family in the home he grew up. I did have a brief phone call with him Thursday morning where all that is left is "I love you." Those are only words.

And then THIS happens. I tell my Husband about the death. And my Husband whose brain just does not work the same and where our connections are different now says "I am so sorry Ronda. I know how much you loved him" and He Hugs Me. And my heart breaks in a million additional ways in that moment.

A Summer of Change and Meaning

This disjointed post is about transitions, change, growing up, helping others and how they are connected in my brain today ...

Our Summer Ends with D (Kinda)

D moved from our home to his new foster family on August 2nd thus he has officially been gone for two weeks. We are comforted that D is with his toddler brother and a truly wonderful foster family. We are also fortunate that we have seen him most days. D is still attending summer camp and I have been picking him up in the afternoons until his foster dad finishes his work day. I also took D to his Family Visit last Friday at CPS thus seeing D's Bio Family too.

D will start 1st grade next Monday at his new school and he is signed up for a soccer team which he will love. His 7th birthday is soon. We hope to be a part of his birthday celebration and watch a few soccer games!

D has done well with the transition and seems happier this week than last week. He is skipping around and chatting away and just super cute. Our family and the other foster family have also been transitioning. We have been helping each other.

Youngest Son's Summer Wraps Up

Youngest Son has completed an interesting summer. For eight weeks, he has worked full-time at the Jewish Community Center in their camps (10.5 hours a day for last two weeks!) Every Saturday, he has volunteered at Children's Medical Center as an ambassador and in the play room. This week he let us know "Oh, I have been recommended and approved for Children's Medical Center Fall Volunteer program and will volunteer two Saturdays a month."

We started our teens managing their own budgets and expenses at age 14.  Each August, I sit down with them to go over last year's cash flow in their Excel spreadsheet and they propose the next twelve month budget. Youngest Son was taking me through his spend for July. He had a charge for 70 cents at a retail store - what? Youngest Son "Oh, the person in front of me did not have enough money so I just helped them." Then there was a cash withdrawal and he was accounting for where it went "Oh, I gave some to a homeless man."

Youngest Son asked me "When are we getting our next foster child?" And when I countered questioned Youngest Son about his thoughts on fostering D, Youngest Son said "I liked having a younger brother."  (Interesting that he did not say foster brother - I love that.)

These seemingly disconnected accounts about Youngest Son are tied together in a meaningful way. I see he is helping others under his own initiative in different areas of his teen life.

Oldest Son's Summer of Change

Oldest Son spent seven weeks on the road in Washington DC and Michigan working debate camp including a teaching assistant role. On social media, I was able to view a simple and funny thank you sign obviously given to Oldest Son by his students. Oldest Son posted a picture of it captioned as "7 weeks of debate camp was long, but my labbies made it worth it" so I will interpret this as a good sign (pun intended) that Oldest Son also focused on making it a priority to be helpful to others.

I follow Oldest Son's twitter and he sends me articles and stuff. I am beyond proud of Oldest Son's priorities. Every belief system decision and every progressive position demonstrates a deep and sure understanding of human rights. Helping others is the very foundation each stand Oldest Son takes; that is the way I see it.

And the ultimate transition of the Summer: Oldest Son drove off to college last week.

And A Future Foster Child ...
We are closed to accepting a foster child at the moment but expect to open up again soon. It appears to be a good way for us to help others and truth be told, ourselves too.

#notsilent #fostercare #fosterparent #fosterson #helpingothers #raisingteens

7 Things I Have Learned Doing a 3 Day Juice Cleanse

At some point last week, I decided that doing a three day juice cleanse would be a good thing for me. I am working toward eating clean, exercising and trying to clear the clutter in all parts of my life.

I am on day three and here are my conclusions so far:

1. The Gem Organic Juice Bar Is Great

The positive part of this experience is that The Gem in Dallas is a delightful place. The people are helpful and knowledgeable. If you want to do a juice cleanse then I would definitely endorse The Gem. I am drinking six drinks throughout the day along with water. Three of them are green vegetable juice, one is beet based, one is a lemonade type and the final one is a cashew milk.

The Six Pack I started with on Thursday morning from The Gem at Preston and Forest.

2. Drinking Vegetables Is Not For Me

I have discovered that drinking my vegetables is simply not for me. If the mixture is green because of a green vegetable then it does not matter what you put with it, I do not want to drink it. On the other hand, Commuter Husband and Youngest Son think the green vegetable drinks taste wonderful. 

3. Cashew Milk Is Fabulous
After drinking vegetables and fruit all day, the cashew milk is heavenly. I seriously think about that white concoction all day. When Youngest Son asked for a taste, I wanted to say "No way" so that I selfishly got every drop. Alas, my motherly guilt surfaced and I did allow him to take one SMALL sip.

4. My Digestive Tract Is Clearing Out
Supposedly, one of the side effects of a juice cleanse is that it causes constipation. Are you kidding me?!?? I must have an abundance of toxins to release because I have the complete opposite of constipation.

5. Caffeine Headaches Are Not Fun
I love my coffee and the caffeine headache I had for days one and two are proof positive. I finally had to drink green tea yesterday which IS allowed on the cleanse. Commuter Husband looked at me with disappointment this morning when I said no to a cup of coffee and he responded to me in an oddly romantic way "That is something we share." Ahhhh ...

6. Overall I feel Okay And Will Finish Today
These three days without solid food have been manageable. I have been able to function and my energy level is fairly normal. I seriously considered skipping day three and giving my juices to Commuter Husband and Youngest Son. When I mentioned this to Youngest Son this morning, he told me in no uncertain terms that I should finish. Why? Because I should complete what I started. I had a parent happy moment that he instinctively went to a value we have tried to teach the boys. And it had the intended impact. I WILL finish. I WILL FINISH.

7. The Experience Is Worth It
I love new experiences so in some weirdo way I am glad I am doing the three day cleanse. It will help reinforce eating in a clean and healthy paradigm. I look forward to eating the solid food at The Gem and drinking the non-veggie smoothies! Heck, I may even take a class or two at the The Gem.

But I seriously doubt I will EVER do a juice cleanse of any kind again. Dang ... time for my 10am Green Glow ...