Moments of My World

Me to a stranger helping me today "Being able to live in each moment really is a gift. Not a gift we asked for but a gift all the same."

Living in the moment is an overused expression. In the mainstream rhetoric, it is a form of utopia. It is a state of being that we are in search of but very few ever really get there. When you must truly live in the moment because there is not an alternative then it is a more complicated version of releasing expectations. And it can feel truly liberating; so there are moments in the moments that feel quite freeing. If I could wave my magic wand then I would focus on living in the finite and continuously decreasing salient moments that we have before the early/younger onset Alzheimers winds its way through the stages. I think I could be quite good at it. But real life does not work that way for most of us so my moments are distinct and separate. This is an important characterization of my life.

The good moments, the bad moments, the precious moments, the meaningful moments, the anxious moments, the creative moments, the angry moments, the fearful moments, the grateful moments, the work moments ... all the moments are separate. EACH is compartmentalized and worthy. A sense of being overwhelmed is always there ... hovering and omnipresent as each moment struggles to overtake the next in line. And the moments are defined within each day. My life is no longer an integrated life model; it just is not. Moments are a coping mechanism. It keeps us from wallowing in the traumatic moments and allows us to enjoy the uplifting moments.

The people I encounter can unwittingly get ambushed with the impact of my moment. At least four times in the past week, a person in my path has encountered me when a tearful, raw moment has swooped into our shared space. It is okay. It has to be okay. It is going to happen. The human condition begets authenticity. It does for me anyway.

And there are the special, joyful moments. The moment can be an unexpected gift sitting beside my plate or a sincere sentiment of "thanks Mom" or sharing an emotional experience or seeing positive change in the world or a quiet evening. It can be as simple as my Husband telling me with tears of joy in his eyes that his best gift on our first night of light was cooking with our Oldest Son.

Some moments are still and silent in a calming way. And there are often those dark moments of nothingness; when absolutely nothing is left in that day. But always, the next day arrives and it is filled with whatever is next on life's list.

Oldest Son and Husband lighting candles on our 2nd night of Chanukah: a treasured moment.

This clock is sold as a Dementia Clock ... it helps our household know the day, time and date of our moments at a glance ... and the proverb has been sitting on our counter for a very long time ...

Two Weeks Past Dx

Today is a good day. Today looks like a Sunday that many can relate to ...

• Youngest Son went to religious school and did his Madrichim stuff and he spent the afternoon at the JCC playing in the BBYO Flag Football championship. And this evening is all about watching football!
• Husband went to the grocery store to get a brisket and cooked it for us in the crock pot. He also spent the afternoon at the JCC at the fitness center doing his daily work out. Then Husband spent some time cleaning the never ending cascade of acorns off our back porch.
• I worked some getting ready for Monday meetings and then took a long walk down Northaven Trail with a friend who generously gave her time and more importantly gave me motivation.
• We had a family sit down lunch with TJ's shrimp that Youngest Son and I picked up along with a veggie stir fry that Husband cooked. And then we got to sit down again with Youngest Son at dinner.
• Right now, Husband and Youngest Son are making a Braum's run for dessert!

A typical day in Northwest Dallas ... well maybe only typical if you are Jewish but the important part is it is a "normal" day. I appreciate each one of these days. Every single one. 

And the last week has felt slightly less scary. I am trying figure out why and think there are several things going on  ...

• Husband was invited to a museum, an art exhibit and movie by three different friends this week. This is the MOST helpful gift we can receive right now. Tom's intellect and curiosity is intact and he is terrific company. Getting Husband out of the house, socializing and staying mind-active is a high priority which I simply cannot do alone.
• A friend came over and sat with Husband for several hours to get his SSDI application submitted. HUGE relief to get that submitted as it impacts our financial health and Husband's eventual Medicare eligibility (more on this further down.)
• I interacted with lots of caring friends and family in all kinds of ways: phone, texts, social media, dinner date, in person, walking, meetings. I did not always hold it together but that was okay. I was fortunate as some patiently listened to me; I needed to talk - allot obviously - lol! Others shared information with me to help me establish our new normal. And many just sent kind words of support.
• I joined Early-onset/Young Alzheimers Female Spouses Caregiver Support Group on Facebook. This courageous group of women has already provided me a place of understanding, humor, love and support in a safe closed community. In full honesty, some of the posts are heartbreaking and tremendously scary. But it is more of a place where I can gather practical information about things I just would not think about yet that are the realities of Husband's diagnosis.

I will end with a PSA on SSDI and Medicare ...

Representative Colin Allred called me today to ask for 2020 campaign support. I am a big Colin Allred fan so I am honored to have the opportunity to talk with him directly. This timely phone call gave me a chance to share with him my latest issue of the heart and human rights.

We have learned that the over 8.5 million Americans qualifying for SSDI (Social Security Disability Insurance) must WAIT TWO YEARS to qualify for Medicare. This is beyond ludicrous and cruel. The SSDI approval process is rigorous, difficult and stressful and can take years. Once a family finally gets the SSDI qualification then their DISABLED loved one who cannot work must wait two years from SSDI effective date for Medicare. How is this okay? All I have found in my research is that the Congress has put in this two year waiting period policy in place only to save money. What the heck are disabled people supposed to do for affordable healthcare? And what about the disabled people with no family to help or care for them?

Representative Colin Allred listened to me with compassion as I shared the information on this issue. He too has experienced the tragedy of Alzheimer's in his family so knows the path of this terminal illness. He did not know about the two year wait for Medicare after SSDI granted. His first reaction was this must be a mistake; sadly, I doubt it. He gathered the information and we discussed how I can also submit to his office through the established process for collecting issue input from constituents. We will do that for sure. One would hope there would be bipartisan support to make SSDI and Medicare eligibility effective at the same date. SO, political activists, add this your list of issues! 

Family Dinner: Husband's tasty brisket, avocado/cucumber/citrus salad, oven baked potatoes and fresh sliced strawberries. 

So Much Has Changed

I have not posted since last March. Last March, we were fostering our third little boy. Last March, we had to make the heartbreaking decision to move our foster son to a different foster home. Last March, I gave up my dream of fostering. Last March, we were still in a purgatory of hope and denial.

It is now November, we have transitioned to the purgatory of the known and the unknown. Husband has been diagnosed with younger-onset (early onset) Alzheimer's. It has been ten days since the neurologist confirmed the diagnosis. In those ten days, I have felt completely and thoroughly scared. I have gone through allot of trauma in my 54 years of life and I have been supremely successful at keeping fear at bay. This repressive coping mechanism has served me well. Thus feeling gut-wrenching, all encompassing fear is a new emotion for me. I would like to say it is unwelcome but perhaps allowing this feeling to surface is the authentic emotion. But this fear drains me and throws every other emotion off balance. On this tenth day, I am in search of equilibrium.

The "younger-onset" descriptor for Alzheimer's creates another layer of circumstances. We are now on a completely different path than our same life-stage peers. Husband and I are part of a different community where only 5% of those diagnosed with Alzheimer's belong. I have known for awhile that my narrative is isolating. And the fear is fed.

And there is some irony that my strongest coping mechanism is pushing aside my own emotional pain by care-taking others. It started when I was very young by protecting my brother and myself. This caretaker role has shown bright throughout so many of my relationships. It has created some of my proudest moments. Thus (another thus), I have been ambushed by how scared I am. Again the fear is fed.

Here is where I shift to a more hopeful perspective. This journey has already started reinforcing my intuition about non-normative acceptance. Our society places far too much emphasis on what is normal and if not considered normal then giving it a label. The labels we have come up with are endless and are growing daily. The labels frequently serve to normalize the non-normative. And too many labels substantiate bias, rejection and intolerance. It is foolishness.

My Husband's brain is going to move into another place. My Husband's role and contribution to his family and his community is one of worth and respect. We (family, friends, community, society) need to move to into his world not the other way around.