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.