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In my work world, I work with families who are caring for loved ones suffering from Alzheimer’s and similar dementias. Also in my work world and in my personal life, I am connected with persons with intellectual disabilities including my twin sister and a Sunday School class I teach for adults with special needs. In my charity life, I am on the executive board of a local non-profit that serves children and adults with special needs, including managing multiple group homes for the adults and providing life skills and therapies at our facility for the adults and children we serve. Finally, I have a grandmother, Memaw, that is 89 and lives in an independent retirement community. Let me relay some of the results of the COVID lockdown:
- I sat with a client yesterday who was in tears that she has not been able to see her mom with dementia for 10 weeks who lives in a secured dementia care unit. The staff has helped her Facetime, but mom doesn’t understand or recognize her daughter on the iPad. The facility is required to keep masks on the residents if they are out of their room for any reason. The masks are distressing for the residents and the staff is on edge that a health inspector could walk in and find a dementia resident having pulled off their mask and be cited for a violation. Other clients have reported that, once they have been able to visit their loved one in-person, Mom or Dad no longer knows who they are. These families feel like the remaining precious moments they may have had with their family members have been stolen. Other clients have reported that their more cogent family members beg them to come to see them, but they don’t understand the restrictions and what is going on in the outside world with the virus and the facility residents are crying on the phone asking why the family has abandoned them.
- My twin sister lives at a group home. The adults have not been allowed to leave their homes since the second week of March. No life skills classes at the center, no trips to the park, no outside entertainment brought in. We have done our best to bring in arts and crafts, games, send care packages, etc, but the residents are bored and also have limited capacity to understand the situation. I had planned a trip in March (prior to COVID) for my sister to come to visit with me for a few days – on the day she was supposed to come, the state went on lockdown. My sister was prohibited from coming because the trip would cross state lines and she would lose her spot in her home if she left. When the trip was canceled, she cried herself hoarse and didn’t understand. Now, we talk on the phone about “when this mess is over” she will come and visit again. But she loves her calendar and I can’t even give her a date to look forward to because the state has not lifted the quarantine for group homes.
- My non-profit has not been able to deliver PT, OT or Speech Therapy in person to our children. We can now do teletherapy with iPads, but it is not the same. Also, the state Medicaid program wants us to do welfare-checks on our child clients at their homes (the whole potential increase in abuse because everyone is at home fear), but our employees were citing the county stay-at-home order as a basis to not come to work and further, didn’t want to enter other people’s homes due to virus fears. We were recently allowed to re-open our campus on a limited basis, but only 1/3 of our clients indicate an intent to return in the short term and several employees are flush with stimulus checks and hefty unemployment compensation from our closure and have indicated that they will not be returning to work in the short term either. This means hiring new employees and absorbing the cost of “on-boarding” them with CPR training, behavior training for our clients, drug testing, etc. We have intense regulations on staff ratios and training, that, if we can’t meet, we can’t re-open. Also, to re-open, we have to have additional cleaning teams that are constantly on the move in our campus facility throughout the day. We anticipate that this requirement will necessitate the hiring of 6 additional staff, but, there is no increase in funding from the State to pay for the additional staff to meet the state requirements. Most of our programs lose money as we already deliver higher quality services than what the State will pay for. The few programs that eke out a profit help us plug the funding gap for our other programs. COVID, and the inability for us to deliver services and therefore charge for them, has blown a huge hole in our funding, even taking into account the PPP program. Just like businesses, I anticipate the closure of a number of non-profits. The closure of such programs just creates another deficiency in the quality of life for populations in our communities in need of services.
- My Sunday School class of four people has not met since March. Two of my students live in a group home which is locked down anyway and of course, the church has been closed for services. This removes another community “touch” that these adults have to be engaged with others.
- My grandmother has been quarantined in her suite at independent living since March. She used to walk the halls and in the gardens, but that has been prohibited during the quarantine. She is frailer and certainly weaker than she was at the start of this. She is terribly lonesome without the activities she was able to participate in (bean bag baseball slugger!) and on-site visitors.
I recognize that many of these populations described here are likely truly high-risk, even if the virus is less virulent than first thought. My heart breaks for all the missed interactions as well as the degeneration in capacities and abilities that have occurred in these last weeks, some of which may never be recovered. Some of it can’t be helped I guess, but I wonder at what cost?