Tom is 60 years old. He was officially diagnosed with Early-Onset (Younger Onset) Alzheimer's when he was 59 years old. He was diagnosed with Mild Cognitive Impairment when he was 57 years old. Alzheimer's is a progressive terminal illness so he had showed signs for a long time; I guess we would need to say years.
The undiagnosed and secretive years were particularly hard. Those were the years Tom felt like he was loosing his mind and he was letting everyone around him down: work colleagues, family, friends, himself. Those were the years before diagnosis and I kept trying to make things better on every level and nothing worked. My frustration and anger were real. In Fall of 2018, we went public and Tom received the official diagnosis. Everything changed in that moment.
We are in a good place right now and some of that is due to COVID.
- Wills: Right before COVID hit, we completed all new Wills and various legal documents with a trusted elder care attorney
- Finances: I did some research and decided we had a shot at applying for LTD with Tom's prior employer. With tenacity, I started the process and I was meticulous in managing the qualifications and application. Tom was approved and with a retro payment to effective date! To say we were shocked was an understatement. We now have SSDI payments for both Tom and Noah and an additional LTD benefit for Tom. I also found a little known COBRA extension for certain SSDI recipients so we have healthcare until next Spring.
- Driving: Tom was already heavily restricted with driving and COVID sped up (pun intended) the decision for him to no longer drive. Tom was able to make this decision without stress. With COVID, he does not go anywhere so it has no real impact in our current day-to-day living situation. We traded in both of our Prius cars and I got a new hybrid which made me super happy!
- Medicines: Oh man, the management of meds is NOT fun especially with Tom's sensitive digestive system. We have finally got him down two meds for cardiovascular health and back to a therapeutic dose of his brain med (Donepezil/Aricept.). And he is no longer on anything for mental health.
- Vacation: Tom does best when we are in our home of 25 years where all is familiar which is key coping strategy for loved ones with dementia. SO, when we (boys helped!) planned a Colorado social distancing get-a-way last month, we were very thoughtful about how we would go about it. I am thrilled to say all went very well. We had a great time and Tom was able to enjoy himself without too much confusion and anxiety.
- Support: The Center for Brain Health has been our lifeline to our new community: the community of families whose loved one has dementia. We meet weekly on Zoom. When Tom meets on Thursdays, I can hear him laughing and talking. It is important to have friends who really and truly understand.
- Tom's Current State: Tom's physical health is good other than his eating habits being impacted, some loss of weight and sleeping allot. Tom's executive functioning and short term memory continue to decline. His "in the moment" cognitive level is still great thus daily interactions with him feel mostly normal. Thankfully, his self-care is high functioning. Tom's sense of humor and core essence is still there! It is really about meeting Tom where he is and expecting nothing more. When we do this then all of us function peacefully. It is about a life of worth and respecting that paradigm for everyone.
Since March we have practiced social distancing. Sam and Noah do the grocery shopping for things not delivered. We have very little interaction with extended family or friends and when we do it is done with caution and respect for not exposing ourselves to COVID. Sam and Noah have been incredible - truly. It is not easy to be 18 and 20 and not see your friends at all - for months. We did not ask them to do this; this was a decision they made and they manage. If Tom gets COVID, it would be horrific on every level. If I get COVID, the impact to our family and my business could be crippling.
HOWEVER, COVID has given our family priceless gift of time together. I would have never imagined our family of four would have this kind of time together at this stage of Tom's illness when we can still interact in positive and joyful ways. Both boys have had internships they could do online and remote. Since I work from home 100%, it is much easier for me to be there for Tom in the ways he needs. Right before COVID hit, I was starting to feel quite overwhelmed with the care taking that was surfacing.
The Future
