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.
Paula my dear, thank you very much for your thoughtfulness, and action, and not only for your dear Bert, but all… Many of us will need the service of LTC, (for ourself or our loved one), and are very concerned and disappointed about the service available today, but have not taken your stance. Thank you Paula for being an advocate for many, and for encouraging us to speak up. Please take care of yourself, stay safe, and keep that smile. God bless you.
Thank you sisterfriend. There are some good homes out there where there is care, safety and even love. The thing is there are too many that are below par and it is frustrating that this has been such a long time issue. The most vulnerable were not always so vulnerable but contributing members of society. They should be valued and recognized for all they did when they could. Yes, I am out of my comfort zone but I need to leave it as I speak out on behalf of so many who cannot speak for themselves now.
Stay safe.
Paula, I continue to admire how you use your gift of writing to help to cope with the negatives that life has been handing you. May you never lose that ability. Yes, some of the decisions made by governments and institutions are befuddling indeed, for people within and outside of institutions. On a lighter note, your comment about Bert’s stream of words got me thinking that that is not uncommon to us older people. I have a few friends who, like me, are nearer to the exit than the entrance, as Shakespeare said in his Seven Stages of Man. In “conversations,” an hour will go by and I hardly get to say a word. I have concluded that they feel that they have little time left to talk so they are getting in as much talking as possible. Seems that there are a number of reasons for that tendency.
Thanks Erma. The ‘lighter note’ was welcome respite from my frustrations. I do know about those calls. I am guilty of them too. Yesterday I said: “I won’t keep you long. Just saying hello.” 75 minutes later we were saying protracted goodbyes. You may have the explanation. The smile you have put on my face is priceless. Thanks, again.
There still are saints living amongst us, and you, Paula are one of them. You have been teaching us a lot…and forces one to remember that “…whatever you did for one of these least brothers of mine, you did it for me.”
May God’s blessing continue to strengthen you, in your devotion to your Bert.
Words credited to Mother Teresa “Lord, I know you promised not to give me more than l can bear, but l wish You didn’t trust me so much.”
( Even if l said this before, that prayer is still relevant.)
Yes, there are saints living among us. Not sure I am one but I mingle with some every day. The staff at my Bert’s home are simply amazing. There are not enough words to thank for what they do.
I have had many moments to echo Mother Teresa’s words They resonate and are relevant to my life.
Than you, Earle.
Oh my dear. Fight the foolishness of government’s too little too late and ass- covering tactics that are not helpful.
You are so brave and such an inspiration. Hope your nasal passage survives!
Plus sitting on money intended to support LTC. Why? No logical reason available. Being a squeaky wheel is so far out of my comfort zone but I am finding that so many of us have to get into squeaky wheel space or go crazy with frustration. So here I am another resident in squeaky wheel kingdom.
Thanks for the kind words. Not sure how long the nasal passages will hold up. I wonder if I should alternate them or use only one for the now weekly exploration. I know you can live with one kidney, how about one functioning nostril! LOL
You are so faithful, Paula. So many of us feel utterly betrayed by the lack of government commitment to to the well-being all our fellow human beings in congregate settings. Such promises; then such abandonment.
Abandonment is the correct word, Wendy. Government, promises, commitment, well-being should not be in the same sentence. My frustrations at the inaction came through in this post. I am just one of many feeling this way, even though every day we hear ‘it breaks my heart what is happening in LTC homes’. Yet there is no will to begin to fix it.
It does sometimes seem a world gone mad as we struggle to get to grips with how best to manage this pandemic. Let’s hope for a less onerous but still safe way to see loved ones. And I do think the carers in the social care system are unrecognised, often among the lowest paid – in the UK anyway.
There are not enough words to say how grateful we are for the front line workers who carry the load and are amazing at what they do. It is the same here, low pay, unrecognised, expected to work long hours. One major stumbling block here is the culture that exists in privately run homes which are in the majority. It is that profits and shareholder dividends come before people. This pandemic has highlighted how our most vulnerable are undervalued. Unacceptable.
Ah, it is a difficult road! May God bless you and Bert!
Thanks, Sadie. I know you understand.
I can only sympathize with you Paula. But my expressions of sympathy are truly sincere, although, since I have not experienced walking in your shoes, true empathy would not be possible. We share the covid-19 problem, of course, but the experiences with Bert are unique to you, and sad to hear about. I can only just about imagine what life must be like for you right now. Your writing about it helps us, your friends, to have a peep into your present world, and I hope that it is also a healthy and possibly therapeutic outlet for you. Be assured that I, and so many people who know you, are saddened that this is happening to you. Our tears are not far away. We love you dearly. Barry
Thank you, Barry. Yes, writing has always been an outlet and it is my therapy. This that I wrote is about a quarter of the rant in my daily journal! I hesitated about even putting this much out but as you can see I was obviously very frustrated.
Yes, life is difficult but friends like you make it more than just bearable. Love you too.
As my head spun through your thoughts on the empty busyness of our daily lives, I cannot say how much politicians are starting to fray me at the edges. Talk about society needing a reset. When we started this, we were hopeful that we would learn things from the trip and would emerge with a better life for everyone. On any level imaginable, this seems to not have happened. Now it is all the casual thought about whether a person should get vaccinated or not. Heaven help us. Are we dooming ourselves to a life that is going to be eternally about masks, distancing, counting how many people are around us and whether I have washed my hands recently? We are all fatigued and losing our minds in the process.
Covid 19 shone a light on the devastating reality of LTC homes. Every level of those responsible expressed woe. There was weeping and gnashing of teeth and breaking hearts all over including on national T.V. Yet when reports and studies come out with recommendations all that happens is studying of the studies, timelines that are far in the future and talk signifying nothing.
I am so totally frustrated but not losing my mind, at least not yet.