It is hard to live in two worlds. Yet that is what you do when you are a caregiver to a loved one with dementia. Your two worlds are the real one and Alzheimer’s world. Add in a third which is the Covid 19 virus world pandemic and that existence becomes even harder.
I believe that the next world pandemic will be a mental health crisis that will be a marker of the new normal, whatever that is.
Now that I am about to get my 17th Covid test I am convinced that my mental stress will come from having that elongated Q-Tip being swirled around somewhere north of my eye socket and approaching my brain via a nostril. I mean, really! Yet I go trotting off again because I need to have that negative test result to be able to visit my Bert.
To add insult to injury, another edict has come down from the Ministry of Long Term Care (LTC) that the tests are now required to be done every seven not 14 days. This might mean a test every four days as there is no guarantee that results will be available in the touted 24 hour turnaround window.
I call this Covid busyness of an insane Government. The LTC Covid-19 Commission released an interim report recommending that hours spent by staff on personal human contact in direct care be increased. The Ministry’s response was that it would aim to achieve this in FIVE YEARS and then it announced that testing for all staff, essential and designated caregivers would be required every seven days. Essential caregivers would have to show the negative test result to be able to visit their loved ones. No negative test result, no positive visit.
In one devastating swoop incompetence met up with insanity; privacy issues went out the window as you must show your medical record which will be kept on file; already stressed staff will be going for testing instead of caring for residents; the amount of time now spent on care will be reduced going counter to the recommendation of the need for more time for residents; critical social contact necessary for resident’s well being may be curtailed if test results are not timely; any help given by family essential caregivers will most likely decrease if test results are late, lost or testing appointments missed for any reason.
I surmise that if your loved one is in a large or medium sized home, testing every seven days of every staff member and others would take away a good percentage of the little time already being spent with residents. After all, the everyday workload would not be reduced but nowhere did I read that staff would be increased to allow for this weekly testing..
There is talk of a new fast test protocol where results would be available in twenty minutes but until that happens, it is just palaver. There is always talk and more talk but no action. If this is action then five years could become ten or perhaps never.
Am I opposed to testing? Certainly not, hence 17 and counting. However, it seems this is just another patchwork idea to say: “We are doing something.” without looking at the efficacy of the ‘something.’
My Bert too has some Covid busyness going on. He is so chatty my head spins trying to keep up with his forays into all subjects within one sentence stream. This is good, but it is as if he was so devoid of conversation that now I am available he has an audience of one to verbalize all the pent up thoughts in his head. Like the politicians he is suffering from verbal diarrhea of a different ilk.
Most of my Bert’s conversations are born in hallucinations veering into delusions and confabulation. Interestingly enough I can follow these strains of errant thoughts as in the telling there is usually some hint of reality of past shared experiences. If there isn’t I just agree. I mentioned this to a friend, a professor of Ophthalmology, who suggested they may also be complicated by his having advanced macular degeneration and thus experiencing Charles Bonnet syndrome.
Being aware of my penchant to hear disjointed streams of words, as example, hearing Baker’s yeast instead of Baker’s cyst and emotional liability instead of emotional lability, I asked her to spell it. Good thing she did as the Bonnet is pronounced Bonay. I might have still been looking for Charles Bunny. Briefly:
“Charles Bonnet syndrome refers to the visual hallucinations caused by the brain’s adjustment to significant vision loss. It occurs most often among the elderly who are more likely than any other age group to have eye conditions that affect sight, such as age-related macular degeneration.”
No wonder my Bert is busy. Not only does his brain have to deal with Alzheimer disease hallucinations he also has hallucinations caused by macular degeneration and living in Covid-19 world too. Crazy world and crazy life.
I too have Covid busyness. Besides trying to figure out the intricate permutations of my Bert’s brain, I find that I am becoming more of an advocate for those living and working in LTC hence this somewhat political slant in my thinking. If only politicians would recognize that their role is to advocate on behalf of their constituents and enact legislation that benefits them.
My friends are also Covid 19 busy. Ask what keeps us all so busy and we are stumped to come up with a definitive answer. My answer is I have found an infinite capacity to be busy doing nothing. That is not all true. I believe that Covid 19 has shown us a different kind of busy where the simplest task stretches out to fill an inordinate amount of time disproportionate to its difficulty. This is also coupled with an inertia that goes right down to the bone. Everything is slowed, takes more effort than it should, more thought, and care.
We seem to have our fingers hovering over the pause button. It is a long frustrating pause but it is also a time to dream and breathe and wonder. It is a pause to create, to be creative, to care and to act.
The Meander: If we care enough perhaps our tomorrows will be brighter than our todays and we may just be able to avoid the next pandemic.