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 ...

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.

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