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I just lived for the past six months in “stay-at-home” conditions because of the COVID pandemic. I also am living with dementia and my residence is a health-care living complex regulated by the State of North Carolina.

As usual, I developed a mind map over the past few weeks to summarize what the issues were (are) in dealing with both of these “problems” at the same time.

Most of the information is best explained by the mind map below because it shows, in a summary fashion, what it meant to deal with the pandemic. Here are some bullets to cover things.

  1. The condominium building I live within has 18 units with either or two occupants. There is a trash pickup a few times per day. The units each have one or two bedrooms and several bathrooms, a small kitchen, a living room, and a very large number of windows in units.
  2. During the last six months, everyone was in a quasi-lockdown condition with residents asked to not leave the large campus with lots of green space and several dozen buildings and about 50 single or duplex homes. No visitors were allowed inside buildings and the social interactions I had were with family members sitting on chairs I would bring downstairs to the grass where we would sit 12-20 feet apart, eat bag lunches together, talk.
  3. Most weeks residents were encouraged to stay in their units and to only go out to get the mail or exercise in a socially distanced way. One meal per day per resident usually served in a communal dining room was delivered to each of the homes. Most of the time residents used grocery delivery services and online stores like Amazon. Most prescriptions were delivered by mail or picked up at a local pharmacy where you could call and pay and they would set your prescriptions outside when you arrived for you to pick up.
  4. The complex of about 400 persons has had no cases of coronavirus among residents and five cases among staff members. A related small residential intensive medical building has had two positive cases of coronavirus.
  5. Within my building, I am the youngest resident (at 69) and most of the other residents are in their late 70s or 80s with all still fairly mobile. I have not talked for more than 5 minutes to other residents in a day. One thing that I have observed is that most of my fellow residents cannot maintain social distancing because of cognitive difficulties or lifestyle issues like their cultural norms, poor hearing, and loneliness.
  6. I have also observed that I am probably the only resident of my building taking advantage of bringing chairs out to the lawn and sitting far apart from 1-2 visitors at a time.
  7. I often (more than half of the time) do not formally see other people in a day; our interactions are limited to my identifying them from the door peephole and conversations through an unopened door.
  8. I love Facetime. My whole family uses it and I log many hours each week on it with family. My goal is to increase my use of it or another video call app with friends.
  9. I have canceled several medical appointments that were not urgent. I am waiting until the virus is under more control before getting cataract surgery in both eyes. I had one online (voice only) appointment with a neurologist I see for cognitive issues. I recently had a video appointment with another neurologist I see for movement symptoms and overall management of neurological issues.
  10. The two online appointments (one each with two different neurologists I consult with every six months that I had worked well The video format was much more effective than the audio-only one I had early in the pandemic before video equipment had been installed in the offices of the Neurology Department.
  11. When I had my appointment with the movement disorders expert, I found that we could accomplish much of what we did in an in-person visit. For instance, I adjusted my video camera a little and then walked up and down the hall for her to observe in the same way she had done for 10 years at her office. I help my hands up to the camera so that she could look at tremors and movement acuity. Surprisingly, I also found the interactions with a doctor I have worked with for years to be as relaxed and thorough as those I experience in person.
  12. As someone who had early-onset dementia and neurodegeneration diagnosed before I was 60, I have watched myself decline in functioning level for a decade. Over that decade, the level of the decline from year to year was fairly constant although getting a little faster as I got older as would be expected. During the pandemic, my rate of cognitive decline as been dramatically greater.

Click the mind map to expand it.

 

Sections of the mind map. Same map as above.