Our Love on Sunday Mornings

Couples who have been together for many years fall into patterns that show their love for each other. Tom and I have ours. Ours are the same and they are changing. As I type that sentence, I tear up.

On this beautiful Sunday morning, Tom brings me coffee in bed in a favorite coffee mug. He has brought me coffee for years. For those of you familiar with love languages, mine is overwhelmingly Acts of Service.

This mug means the world to me. It was a gift by my youngest niece in a difficult year.

And a new act of love has entered our world. On Sunday mornings, Tom fills his pill box independently with perhaps a few questions. Once he finishes, he brings to me to check since we are at the stage where I do monitor to make sure he stays safe. During the week, he remembers to take medications without prompting. I will check with him just to make sure but typically he does well.

Last Sunday, Tom told me he "loved this pill box" and thanked me for getting for him.  I got this new version of the pill organizer for him last Fall when I could see that his medications were not being taken correctly using the one he had. Simple things like this help keep independence longer which is incredibly important on so many levels.

This is an effective organizer for loved ones with dementia. The colors, symbols and dividers with separate lids make it easy to use.

Most of us start with romantic love and I suppose some couples maintain it for a lifetime. Many of us evolve to an enduring love that is shows abundantly in both the everyday things and the inimitable moments.

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 ...

April with Tom and COVID

Enjoying the outdoors. 

Early-Onset Alzheimer's Disease (EOAD) is a disease of progressive decline. Like others, COVID-19 has interrupted our normal. We seek worth in the day and in the moments.

Tom's state of mind is positive.

• Tom says "I am really happy right now."
• And this "I love watching those movies with the boys."
• And an excerpt from his heartfelt birthday letter to me "I also appreciate you keeping me busy around the house. It greatly enhances my sense or worth knowing that I can still add some value that helps the family."

We have accomplished some practical steps to getting our affairs in order.

• Tom has been approved for Social Security Disability Insurance (SSDI) thus both Tom and Noah are receiving monthly benefits. There is an UNBELIEVABLE two year Medicare waiting period from SSDI effective date (tell Congress that this is not okay!) However, I stumbled across a little known legislative provision that when you have SSDI then you can extend COBRA benefits for eleven months (so many conditions to be eligible - clearly no intent from Congress to make widely available.) So while COBRA is crazy expensive, our family now has healthcare through April 2021. Thank goodness!!!! This is truly a point of great worry and anxiety for me.
• We have signed our wills and associated documents updated for Tom's EOAD right before Stay in Place took hold ... huge relief!
• I am now working on Long-term Disability application with Tom's former employer ... crossing my fingers.

We are also staying connected with our Alzheimer's support group via Zoom. We have a group of eight couples we met in our Center for Brain Health Discovery class last Fall. In this group, the men all have some form of dementia (3 with EOAD, 2 with Alzheimer's, 1 with Parkinson's, 1 with Lewy Body, 1 with Primary Progressive Aphasia.) We meet every Monday morning as couples. On Thursdays, the men meet with a facilitator. Tom is incredibly comforted by this group. It is important that he has a place where honest and safe expression can exist.

Tom's executive functioning and short-term memory are in decline. Imagine .... not being able to hold new information in your brain ... not being able to remember a sequence of two steps just told to you ... not being able to follow a group conversation ... not knowing what to say in group conversation ... losing periods of time ... foods tasting differently ... not being able to process written directions ... brain connectors not processing how objects seen ... fatigue ever present requiring at least 12 hours of sleep per night and naps too ... inability to track a Calendar or anything scheduled ... every action taking SO much longer than normal ...

Also imagine this INCREDIBLE gift before us. We have 7 days a week and 24 hours a day with our young adult children! Tom has this time with Noah and Sam and they with him. They are working their way through super-hero, Marvel and action movies on the Disney channel. Tom is able to relive these theater experiences he has shared with our sons throughout their life. This brings GREAT joy to Tom.

Warning - Frank Convictions Below This Line

We believe Tom is at COVID-19 high risk at age 60 and with diminished physical well-being due to EOAD. We are compliant with all Stay in Place provisions and sanitize everything. Noah and Sam have been so thoughtful and mature. They understand completely that they cannot be out and about which puts us all at risk. I am incredibly proud of them. Honesty, I feel resentful of the Americans including many in my own community who think COVID-19 is overblown, who think a loss of lives is okay and who support leaders without courage. I am fearful my husband will end up on a ventilator and we will be faced with decisions via paperwork we JUST signed with life saving measure directives. Our country is depressingly divided ... I just cannot nor will I ever nor do I want to accept what I read, hear and see daily ... what so many people think is tolerable is incomprehensible to me and fills me with hopelessness. It comes down to loving our neighbor ... that is everything. We are approaching 40,000 deaths in USA since February 29th (!) which is on average over 800 per day which is over 34 per hour. I AM thankful for the brave leaders who have boldly put our safety and truthfulness first ... we would be in much worse shape without their leadership.

Thursday Zoom with Dementia Men's Support Group ... important connection for Tom with an amazing group of loving men.

Tom is cold all the time these days.

Letter to Youngest Son

Dear Noah,

You turn 18 today. For many of your teen years, you have been talking about this day. The day you are an adult. The day you can legally do many things. The day you are in control. You have had a vision for this day. I think your expectations are probably more accurate than either of us would have imagined and certainly for reasons we did not want.

I want to reflect on this past year leading to this milestone birthday. Your teen world has been thrown a tremendous curve ball. Your Dad has Younger Onset Alzheimer's. And you and I have changed as a result. Or maybe we have just evolved to the many levels of complex acceptance.

You probably do not notice how often you shake my norms these days. There are so many moments you caretake not only your Dad but me too. This is way more than actions; it is an instinct to think of us and our well-being.  You help smooth through the rough spots which are increasing as the disease progresses.

This care taking quality has shown strong during COVID-19. Your maturity is remarkable as you have diligently ensured we have the right supplies to sanitize, created a process for keeping the virus out of our home and maintained strict social distancing. You have lightened my worry and have taken on a household responsibility. I am grateful.

Sharing family meals is a value in our home. You have stepped up to fill this gap that surfaced with the changes in our family roles. You provide more than nourishment for our bodies. You feed our souls with your joyful and creative cooking ... and again with the care taking.

Our home is calmer in some ways. My interactions with your Dad are more gentle as we focus on what IS versus what could be. And you and I are in a different place for sure. We are kinder to each other. We have always had a complicated relationship probably rooted in being so much alike. We seem to have arrived at a place of mutual understanding and perhaps an implied commitment to reach under the surface to how we feel. We are a team as you find your way through your last couple years of high school and reach towards your dreams.

You make our home a happier place. I thank you with all my heart.

As we are celebrating in a pandemic, I sent a quick text to friends and family asking for one word for this Youngest Son. This was the result.

It is telling how many DIFFERENT words were chosen for you. You have always sought to command the world around you which has created extreme highs and lows. You definitely learn through experiences and guessing that will always be part of your being.

I am proud to be your Mom. I love you and hope that you know the world is a brighter place in these last 18 years with your light shining bright on all of us!

The Face with MASK is so appropriate!

Birthday Breakfast in Bed! 

Thanks Susan!