Recommended by Ricochet Members Created with Sketch. COVID Symposium: At What Cost? A Quality of Life Discussion

 

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?

-DP

Published in Healthcare
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  1. Kay of MT Member

    This has made me cry, as I am so in sympathy with you. Similar with me. I am disabled and cannot afford a care taker. I may be getting an in home helper from a homeless shelter. I know the girl, and love her, as I helped her at least 7 or 8 years ago. Paid her rent at a project in Big Fork for almost a year. She has a social worker who will bring her next week so we can talk about arrangements.

    • #1
    • June 3, 2020, at 11:29 AM PDT
    • 15 likes
  2. Aaron Miller Member
    Aaron Miller Joined in the first year of Ricochet Ricochet Charter Member

    One elder care facility I know allows residents to chat with family outside. The resident can sit on the porch while visiting family stand or sit several feet away. I’m sure that’s not feasible everywhere with all people. 

    • #2
    • June 3, 2020, at 11:32 AM PDT
    • 5 likes
  3. Dominique Prynne Member
    Dominique Prynne

    Kay of MT (View Comment):

    This has made me cry, as I am so in sympathy with you. Similar with me. I am disabled and cannot afford a care taker. I may be getting an in home helper from a homeless shelter. I know the girl, and love her, as I helped her at least 7 or 8 years ago. Paid her rent at a project in Big Fork for almost a year. She has a social worker who will bring her next week so we can talk about arrangements.

    Best of luck on reaching workable arrangements. The special interest group with the softest voice in our system are the disabled. Unless you live it, you just don’t understand. Many do not have the ability or stamina to advocate or do not have vocal advocates for them. 

    • #3
    • June 3, 2020, at 11:46 AM PDT
    • 10 likes
  4. Dominique Prynne Member
    Dominique Prynne

    Aaron Miller (View Comment):

    One elder care facility I know allows residents to chat with family outside. The resident can sit on the porch while visiting family stand or sit several feet away. I’m sure that’s not feasible everywhere with all people.

    It all depends on the state regs and the individual facility’s interpretation of those regs. Care homes in my area have allowed NO VISITORS inside at all. You can talk through the window, but you can’t open it. :(

    • #4
    • June 3, 2020, at 11:47 AM PDT
    • 6 likes
  5. EODmom Coolidge

    It seems to have been a really awful time for you @dominiqueprynne. I’ll fantasize that you went to bed every night trying to think of something you could do to make it different, even a little for any of those you obviously love.
    This is inhuman and inconceivable that anyone with a soul could devise this as a suitable protocol for health care. What may be almost as bad is that patients and their advocates were given no choices. Aside from the patients and their families, I’ll bet that few “civilians” are even aware of the awful set up for these people. We are certain that we’re she living, EODDad’s mother would have said “I want to see Chris and Jasmine – I don’t care about a stinking virus.” And she would have been one of the vocal non-compliant and would have wanted her DNR left in place. No one asked your family and friends. 
    There’s been so much focus and noise about the numbers of dying, and obfuscation of the circumstances in order to camouflage the errors that were being made in overall patient care and population lockdown, that these important details are way in the background for most. I think the cost will be incalculable- and I think the protocols will be the models for other treatments of other populations and they will not be given any choice in the matter. I’m looking to the protocols under discussion for public schools for fall classes – I fully expect them to be command and control oriented and have little to do with the well being of school age children. 

    • #5
    • June 3, 2020, at 12:26 PM PDT
    • 12 likes
  6. Dominique Prynne Member
    Dominique Prynne

    EODmom (View Comment):
    What may be almost as bad is that patients and their advocates were given no choices.

    True statement. Furthermore, families weren’t even given time to prepare for the forced separation. It happened so quickly, with so little forethought, that there was no nuance built into the “safety measures.” I wish one of my clients had the burning desire to sue for access to their loved one in the facilities, but families are afraid of being kicked out of a situation that is working for them if they make waves. It is not a simple matter of just taking your loved one with Alzheimer’s home to care for them. Many ALZ patients reach a point where home care is exhausting, unsafe and the family is simply not equipped to do perform the care. Also, the facilities are sympathetic to the families, but just cite the state regulations as the last word on the subject. 

    EODmom (View Comment):
    and I think the protocols will be the models for other treatments of other populations and they will not be given any choice in the matter.

    Yes, another true statement. My guess in public schools will institute a “take-it-or-leave-it” approach to whatever schemes they come up with. You don’t like it…stay home. That could also be interesting under the federal mandate that districts provide a “free and appropriate education” to each student. 

    • #6
    • June 3, 2020, at 12:47 PM PDT
    • 8 likes
  7. DrewInWisconsin Doesn't C… Coolidge

    Dominique Prynne: 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 more frail 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.

    My aunt is in a similar situation. She has been very healthy and vigorous at age 90, but being strict isolation — basically a prisoner in her own apartment — has started to cause her health issues. Her children worry about her but can only visit by phone.

    My mom is in an independent senior living building a few miles from where I live, and has much more freedom. Though all group activities at her building have been halted, she goes out all the time, gets together with neighbors, I can go in and see her, and she’s come to visit us a few times. I can’t imagine how nuts I’d be if we were kept from her.

    Aaron Miller (View Comment):
    One elder care facility I know allows residents to chat with family outside. The resident can sit on the porch while visiting family stand or sit several feet away. I’m sure that’s not feasible everywhere with all people.

    Our local health department Kommissar Karen has forbidden things like window visits because “people might be tempted to open a window.” She may have backed off that in recent weeks, but that was her original order.

    • #7
    • June 3, 2020, at 1:17 PM PDT
    • 7 likes
    • This comment has been edited.
  8. Aaron Miller Member
    Aaron Miller Joined in the first year of Ricochet Ricochet Charter Member

    EODmom (View Comment):
    I’m looking to the protocols under discussion for public schools for fall classes – I fully expect them to be command and control oriented and have little to do with the well being of school age children. 

    Since so many have been forced to homeschool, some parents will probably decide they prefer it. Fewer students returning to public schools would mean less money for those schools. If that happens, Democrats and maybe even Republicans will likely push to restrict homeschooling and force kids back into government control. 

    • #8
    • June 3, 2020, at 6:47 PM PDT
    • 3 likes
  9. RushBabe49 Thatcher

    My heart breaks for you, and your family, and your clients. The “no choices” regime leads to the “learned helplessness” syndrome, which is just awful. People lose all hope of changing their situation, and the consequences are often fatal.

    • #9
    • June 3, 2020, at 7:26 PM PDT
    • 6 likes
  10. Isaiah's Job Member

    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.

    The pandemic has been a clarifying moment for me. My daughter with Down syndrome will *never* go into a group home – and I will probably not move forward with my long-standing plan to have her attend UNR for their two year special needs college degree. Why would I want her to live in a city after everything we’ve seen? I would have to be insane. 

    • #10
    • June 3, 2020, at 11:47 PM PDT
    • 8 likes
  11. CarolJoy, Above Top Secret Coolidge

    Dominique Prynne (View Comment):

    EODmom (View Comment):
    What may be almost as bad is that patients and their advocates were given no choices.

    True statement. Furthermore, families weren’t even given time to prepare for the forced separation. It happened so quickly, with so little forethought, that there was no nuance built into the “safety measures.” I wish one of my clients had the burning desire to sue for access to their loved one in the facilities, but families are afraid of being kicked out of a situation that is working for them if they make waves. It is not a simple matter of just taking your loved one with Alzheimer’s home to care for them. Many ALZ patients reach a point where home care is exhausting, unsafe and the family is simply not equipped to do perform the care. Also, the facilities are sympathetic to the families, but just cite the state regulations as the last word on the subject.

    EODmom (View Comment):
    and I think the protocols will be the models for other treatments of other populations and they will not be given any choice in the matter.

    Yes, another true statement. My guess in public schools will institute a “take-it-or-leave-it” approach to whatever schemes they come up with. You don’t like it…stay home. That could also be interesting under the federal mandate that districts provide a “free and appropriate education” to each student.

    Supposedly the CDC has issued regulations for children as far as schools, the normal children that is, as to how they will need to be wearing masks at all times, need to be six feet away from each other at all times, will not have hot lunches served at lunchtime, but only items from vending machines or perhaps some lunches brought from home. Extreme measures as far as toys needing to be in closed in cubicles and not be out and about. How do children play with one another if they need to be six feet apart? These measures are going to be difficult to impose on children without special needs.

    Add in the special needs factors and the whole concept is out of bounds.

    The virus has been so over hyped, while bureaucrats have gained more power, the economy went in the toilet and childhood’s precious and often exuberant and fun times now have been mostly outlawed.

    When children and adults with special needs have a schedule that they can rely on and that schedule offers up interesting things to capture their attention, the chances of emotional melt downs are lessened. This whole set up seems likely to cause so many people to suffer. And for what? The virus’s mortality rate stands at 0.002% against the population. It has a simple inexpensive cure, and most people who get it have mild versions and/or are asymptomatic. Yet we have to answer to the power hungry and greedy and not our very human needs.

     

    • #11
    • June 4, 2020, at 1:03 AM PDT
    • 4 likes
  12. Stina Member

    So far, most of the criticism of our response to the virus has revolved around economics, but I felt like the mundane in terms of everyday human interaction needed some attention.

    This has been hard on me personally from this perspective. It felt like such a little thing compared to other concerns, but quality of life is kind of a huge deal. There’s no point to be alive if you aren’t living. And digital interaction has serious limits for organic people. We need physical, multi-dimensional interactions with each other.

    • #12
    • June 4, 2020, at 4:35 AM PDT
    • 5 likes
  13. Brian Clendinen Member
    Brian Clendinen Joined in the first year of Ricochet Ricochet Charter Member

    Your writeup shows we no longer care about people. Fear is the biggest tyrant of them all.

    • #13
    • June 4, 2020, at 6:31 AM PDT
    • 2 likes
  14. Dominique Prynne Member
    Dominique Prynne

    Isaiah's Job (View Comment):
    The pandemic has been a clarifying moment for me. My daughter with Down syndrome will *never* go into a group home – and I will probably not move forward with my long-standing plan to have her attend UNR for their two year special needs college degree.

    Certainly, as a parent, you know your daughter best. However, I will say that, while I was not the decision-maker in my sister’s placement as a young adult in the group home (our parents were), the placement has been wonderful for her. She has her own social life, as well as work and educational outlets geared toward her abilities. Further, she thrives on the regularity of her routine. Truly, COVID has resulted in unprecedented times for her and her provider. My father has died and my mother is in poor health. While my sister certainly will always have a place in my home if needed, she gets bored on her visits after a couple of days and tells me she is ready to go back to “her college” and be with her friends. This is truly a blessing. Also, in my professional life, I have helped the courts seek arrangements for a special needs adult after the unexpected death or illness of a parent (i.e. stroke). The transition is terribly difficult. Many special needs adult outlive their parents now, which was not the case in the recent past. In his last days in his battle with cancer, my dad wept over the fact that he was going to leave this earth before my sister. Being a parent of a special needs child brings so many challenges. Blessings to you and your precious, perfect daughter!

    • #14
    • June 5, 2020, at 10:44 AM PDT
    • 2 likes
  15. notmarx Member

    I keep having this bitter thought: solitary confinement is the next to worst punishment a civilized society will inflict on its worst. And it’s being meted out wholesale to fragile innocents.

    My brother, at 85 my elder by a dozen years, and victim of dementia, is in a long-term facility. I lived with him for some years of his decline. The pair of his children who live near the home would see him every day—a real aid in his keeping his bearings. John and I would go out for dinner with friends Wednesday evenings, a habit better than a half-century old.

    I worry he may not recover from the isolation, somewhat moderated now. John was becoming less manageable, not eating, refusing his meds, alternately sleeping all day or wandering. For a week or so management has allowed daughter and son to visit, to urge food and meds on him. Daughter Maureen (my goddaughter) face-timed me from his rooms, and we had some laughs. So there’s hope there. Say a prayer.

    But what is the exit strategy from this lockdown for the vulnerable old? How many have already been driven irretrievably mad?

     

     

    • #15
    • June 6, 2020, at 11:48 AM PDT
    • 4 likes