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 This Day

 A typical occurrence for families facing dementia.

When Younger-Onset Alzheimer's hits families, we are typically still in an active phase of life with kids and jobs and robust social lives. One of the impacted areas that is quite time consuming is changing how bills, utilities, online accounts, memberships, subscriptions, etc. are set up. Most of these things require a User ID, passwords and/or PIN numbers. For our family, ALLOT of these things were and are set up in Tom's name on his computer with his multiple email accounts and endless variations of access information. Sam, Noah and I are still changing and shifting various accounts after one and half years! I know it seems crazy.

I am going to use today's frustration to illustrate how we as a society must do better.

SITUATION

Our AT&T security monitoring automated billing did not go through last couple months. Tom had set up this particular service on a new system in 2017.  I am guessing the credit card entered online had expired. Notices went to Tom's email which we did not pick up until today. We were behind two months: July and August.

I tried to pay online but could not because they suspended our account - fair enough. So I started the process of calling customer service. I explained Tom's Younger-Onset Alzheimer's situation thus I needed to make the catch up payment AND to change account to my name. 

AT&T's response was to charge $5 for the phone help, $35 for reactivation and $100 to change to my name. I could accept the $5 and the $35 but the $100 threw me over the edge.  I reiterated the situation of why we needed the name change and the response was "so sorry but we cannot do anything." 

And I am doing all this while listening to a work conference call because these kinds of things usually have to be done 8-5 Monday to Friday with long periods of time on hold. I was flustered and frustrated and in tears. Overreacting? Probably. But this happens so much and this is when caregivers feel VERY alone. Sam, Noah and I are doing the best we can to get these things changed ... we are doing the best we can ... we are trying.

ANOTHER WAY

There is an alternative. This conversation could have been something like this "Mrs. Grimsley, we understand your circumstances are difficult right now. We want to do what we can to help. We will absolutely waive those fees. We appreciate you calling to share what is going on in your life that impacted the delay in payment. Can you spend a few more moments with me making sure we turn your service back on and get your account details changed?"

COMPASSIONATE SOCIETY

When asked what can you do, I would say help us form a society that prioritizes empathy and seeks understanding of the human condition. If you are in a position of influence, create flexible policies that are considerate and kind which may mean reducing profits. Let us all be curious about what others are experiencing; I find that much goes on that is not obvious. So much in conducting daily life seems so much harder than it has to be ... imagine if our first priority was creating a compassionate society.

CONCLUSION

I canceled the AT&T security monitoring service. Now I will figure out if there is another option. 

Huge Sigh.

Clear or Vague?

It is uncomfortable to know what to say when people you care about are going through a hard time. There are those lovely souls who have a gift for comforting others. But many of us are just fumbling through with good intentions.

And it is not always obvious what is going on with people. And even when you do know then you do not really know. Why is this so hard?

How do we show the depth and breadth of our pain and not jeopardize our ability to achieve basic needs?

How can we be vulnerable when that very vulnerability alienates us?

The cumulative effect of trauma is real and it changes you. Sometimes you get so damaged that full recovery seems impossible. Seems is another word for hope.

We are there for others in a way that becomes serial. Person after person until you stop. And then you realize it was really just a lifelong search disguised.

The act of healing can feel like a never ending process in a finite life.

All We Need Is Love ... Or At Least It Helps

All of this.

I belong to a Closed/Private Facebook Group "Early-onset/Young Alzheimers Female Spouses Caregiver Support Group." It is is a virtual, online Support Group. There are so many personal emotions and thoughts shared in a safe place: devastating heartbreak, joyous celebrations, comedic relief, survival techniques, complete hopelessness, utter desperation, timeless love, intense anger and and profound empathy. Our hashtag is #WeWalkThisTogether

The graphic above was posted in that Group today. Sometimes I am kinda embarrassed that Alzheimer's has brought out an approach to relationships that I could have and should have practiced without a brain disease as the driver. I do recognize that "should have" is dicey emotional ground and can lead to shame which is a spiral to negativity. I am well on my way to accomplishing most of the above with Tom. And some of those behaviors are slowly making their way into my other relationships.

This post is really about love. It is about meeting those we love where they are. It is about the brokenness that many of us harbor and figuring out how to get past it. It is about finding peace. I think #WeWalkThisTogether is what we all really need - right?

We share our very personal story because honesty pulls us together. It binds us. It shows that the human condition is there in all of us.

My sweet solace today is that Tom can write (he composed without any help!) me a love letter for my birthday:

And my love for Tom ... today I set him up outside with his laptop, pillows and covers to watch Temple-Emanu El's morning Shabbat service because I KNOW the rhythms, the sounds, the words and the prayers will ring familiar and make him happy.

I helped Tom set aside his broom and take a moment.

Listening to prayers as they are chanted in Hebrew in Live Facebook connection ...

Velocity

I am a problem solver. I always have been. It it my survival mechanism. It got me through a nutty childhood. It was the driver behind becoming a mathematician. I built my professional life around this quality.

Well, there are not enough brain cells for me to solve the magnitude of problems coming at me. I am sure there is a platitude for this exact situation; perhaps it is "let it go" or "day at a time" or "one foot in front of the other." So the problem I need to solve is how solve the problems coming at me with this unnerving velocity. I figure out three things and there are twice that many that pop up next.

And it is definitely not going to get better. It is not. So. Here I am.

I feel ... that what we are supposed to focus on ... how we feel. I pulled up the feelings wheel. The Gold is all the feels for me: fearful, anxious, helpless, frightened, overwhelmed, worried, excluded, exposed. Then I will go to Blue: sad, lonely, vulnerable, despair, powerless, isolated. The Greys are  how I feel about the current state of humanity: disappointed, appalled, horrified.

But I also hit a few Yellows: happy, interested, proud, thankful, sensitive, loving, courageous, successful.

No clever wrap up on this post.

Some People Feel More Than Others. Me.

Me. Green Eyes. No make-up. Naturally greying hair. Age spots. Emerging wrinkles. T-shirt.

Some people feel more than others.

I did a selective cut-n-paste from this Psychology Today article. These resonate with me. Perhaps are Me.

People who feel more deeply and intensely than others are more aware of subtleties; their brain processes information and reflects on it more deeply. People with emotional intensity are sometimes described as sensitive, caring, and attentive. At their best, they can be exceptionally perceptive, intuitive, and keenly observant of the subtleties of the environment. Yet they are also overwhelmed by the constant waves of social nuances and others’ emotional and psychic energies. 

• You experience emotions to an unusual level of depth, complexity, and intensity. This makes you feel incredibly alive, sometimes painfully so.
• You have a constant stream of both positive and negative feelings, sometimes together, sometimes from one to another in a short period.
• You are passionate, even if you do not show it on the outside. 
• You tend to form strong emotional connections with people, places, and things, and sometimes that makes separation difficult.
• However, being naturally open and sensitive also means you are vulnerable to relational injuries from a young age. Your natural tendency to be open and loving may get stunted due to early rejections and trauma.
• Being perceptively gifted means you can sense and perceive things that others miss. With acute awareness, you can see beyond superficiality, grasp patterns and make linkages.
• Insights, intuition, and the ability to read several layers of reality allow you to assess people and situations rapidly. You can sense incongruence and their intentions, thoughts, and feelings that are underneath the facades.
• However, your abilities do not necessarily make life easy. You are bothered by hypocrisies and unfairness and struggle with inauthentic people and situations. You cannot help but be the one who points out the ‘elephant in the room’, but your perceptiveness may seem intimidating to those who felt ‘seen through’.
• You have an innate urge to push the boundaries of conformity, to question or to challenge traditions, particularly those that seem meaningless or unfair. Paired with a strong sense of justice, you are often frustrated with corruptions and inequality in the world. 
• Although this may indicate a challenging life path for you, you also have the potential to thrive as a visionary leader.
• Intellectually, you are inquisitive and reflective. You have a strong need to seek to understand, to expand your horizons, to gain knowledge and to analyze your mental content.
• With an ability to process information with speed and depth, you absorb and surge through information very quickly.  You are likely to be an avid reader and a keen observer.  You may appear critical and impatient with others who cannot keep up with you.
• You also can integrate intellectual concepts with your deep feelings for original conceptions. You may have a constant stream of ideas, sometimes so many that you feel you cannot keep up with it.   
• You tend to experience zealous enthusiasm about certain topics and endeavors. When you get excited about an idea, your mind runs faster than your words can keep up, or you find yourself talking rapidly, perhaps even interrupting others. 
• You are highly capable of contemplative thinking and self-reflection. The flip side is that you may be occupied with obsessive thoughts, and scrupulous self- examination. You may also suffer from perfectionism and self-criticism.
• You are extremely open-minded.
• You might have felt frustrated that those around you were not prepared to discuss and consider weighty concerns.
• Your existential angst may manifest as an unnamed sense of urgency, a constant impulse to move forward.  You get a constant ‘niggling’ feeling that there is something important that you should be doing, even when your vision is not clear yet.   You live with a feeling that somehow time is running out, and you are not doing what you should be doing. 
• For some unnamed reason, you feel a weight of responsibility on your shoulder - even for things you are not responsible for. 
• Your angst propels you to learn, to expand, and to advance in your life path, but it can also paralyze you.   You may be prone to creative blockages such as ‘artist’s block,’ ‘writer’s block,’ procrastination, the fear of exposure or the Imposter Syndrome (the feeling that you are a fraud).
• Nevertheless, you have always known deep down that you are dissatisfied with a life that is meaningless and task-driven.
• You may be a polymath, or a ’multipotentialite’ - someone with multiple interests and creative pursuits, and not just one calling. 
• When you have a strong vision or innovative idea, you can feel the split between belongingness and authentic expression— you want to express with your full, authentic self but you are worried that it means being rejected, or leaving people behind.

“Real isn't how you are made,' said the Skin Horse. 'It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.'often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.” —Margery Williams Bianco, The Velveteen Rabbit

My Mother's Day Poem 2018: HARD

The teen mother had a baby girl
It must have been hard
The young family welcomed a son
They were complete until they were not

The dead mother leaves a little girl
It was so hard
There was no more family
They are all left with lives unfulfilled

The little girl becomes woman
It was hard without a mother's love
She begot a family
The two sons encompass her heart

The woman knows loss
The hard part never really goes away
A family torn apart is familiar
She is compelled to help

This woman will mother others
It is hard
The need to is too great to evade
Too many families broken

Flawed mothers have children
They try hard to be different
But it does not always work
Children are abandoned 

The mother will foster other hearts
Hard will be defined in unimaginable ways
But the call is too loud
Maybe a heart will be less empty ...

Friend Therapy

I am 51 years old. I am self-aware.

I first engaged with a therapist around age thirty and saw her off and on for a couple of years. It was life changing as I worked my way through my childhood and then young adulthood to deal with the many bags I was carrying around. Since that time, I have sought out mental health counsel three additional times when my circumstances felt too heavy to carry alone.

While not an overly frequent reader of self-help books, I have read all or parts of many books to gain understanding of myself and awareness of dynamics in my surrounding world. Some of these books have made a tremendous impact in how I think and approach relationships.

As a parent, I have a similar situation with parenting books. There are a few I have used that have been invaluable. I have also attended various talks and facilitated parent discussions through the years that added to my knowledge bank.

Professionally and personally, I have explored many of the personality tests and associated paradigms. I place a high value in the dialogue these explorations create with myself and others in my life. It is beneficial to gain insight into the complexities of how we are wired and how that impacts all our interactions.

Most of my friends could write the same four paragraphs (above) with adjustments to their particulars. We have made self-education a priority. We have all walked life's path with constant twists and turns. We have first hand experience with tough topics.

I am 51 years old. My emotional intelligence quotient is high.

I suffer bouts of moderate depression mostly characterized by too much time in bed and difficulty motivating myself to complete tasks. I have minor OCD where clutter makes me feel anxious. Clutter is defined in many spaces including physical, electronic, mental and relational. While these labels are accurate, I am highly functioning. The outside does not reflect the inside and there is absolutely no one that knows everything spinning in my head. I am one of those people. I am accepting with this essence of my being. I know me and I know to be vigilant to stay mentally healthy.

I have decided that Friend Therapy is what I want in this last half of my life. There is not anyone who does not need a true friend. A friend that listens and does not pass judgment. But mostly a friend that loves you unconditionally. I want to be that friend and I want to have those friends. Thus, I am being real with my friends. I am saying "help me." We will support each other and remind each other that we all have value. We will make time to be together where talking to each other is the only agenda.

It is my opinion that our society places far too much emphasis on achieving perfection. We are flawed. We make mistakes. We show emotion. We say the wrong things. We fail. We experiment. It happens ... all the time ... to all of us. It is part of the beautiful, crazy, exciting motion of life. It fuels change and creativity and when things go well then it is all the sweeter.

I want to share it all with my friends in Friend Therapy. In my amazingly imperfect world there is a mirror for us to share.