More notes from a Covid-19 Caregiver’s journey… 

Something pretty crucial, a turning point of sorts, has been dawning on me lately. But I’m not going to make the same mistake I made with my mother-in-law, the now deceased beloved partner of 60 odd years. Let me explain…

Her way out of this world, once congestive heart failure and Alzheimer’s had taken their toll, was to become repelled at the thought of food and even some drinks. I had reached a breaking point by the time I realized that the only way to keep her going was to feed her every meal to make sure enough got into her to maintain her frail strength. I could only get outside support for 1/3 of those meals leaving me on for the rest. She was so slow and resistant to eating, literally gagging when trying, that it easily took 90 minutes to get enough into her to make any kind of impact. I was nearing a break-down loving her so much and wanting to do the impossible, reverse the tides of time, when our family doctor decided with us that her care should switch to palliative. This meant that we would no longer being trying to prolong life but simply keep her as comfortable and happy as possible. From that point onwards she declined quickly, lasting only a few more months.

I realized recently that I am now at a similar point with my father-in-law, though the “symptoms” are different. Time to let go of trying to do heroic measures and simply accept. He is weakening steadily as his dementia triggers an obsessive focus on ridding himself of the mucous caused by his post-nasal drip. He has literally become intolerant of any sensation of mucous in the back of his throat and will hack and splutter and spit until he is satisfied… for the next few minutes. Of course, this will continue for the rest of his life and the constant attempts to rid himself of it is likely increasing the flow since mucous has an autoimmune purpose and his throat needs to stay moist. So now he is stuck in this irrational battle that is lowering his quality of life and draining him of vital energy.

So despite my frustration, I have chosen to give up on trying to reset his program. The only relief he gets is when he is absorbed in something else like his reading or watching TV. Outside of that it is a battle all day and evening long. He is still enjoying his food, his excursions outside when I can get him there and the sociability he gets from his daughter, Claire and I, as well as the phone and skype calls I am arranging for him more and more.

The hardest thing for a caregiver to do, a caregiver who is wired as a helper that is, is to give up and let someone slide away when irrational behaviour is the cause of their decline. Doctors face this all the time too. It is so wearing as due to this pandemic, most days you are the only person caring for your loved one, being exposed to the unfortunate obsession and having him hawking and spitting in front of you, at the table, wherever he happens to be. Of course it could be much worse, he could be doing things with his bodily excretions that are not so tidy. This is one of the reasons that caregivers are saints, they are willing to go where no one else wants to go in taking care of their loved one.

However, I have been given the grace to love and accept my father-in-law as he is and to accept the path he is now on. Since he is still happily eating and staying active, despite his dementia he will be with us for a while. Sadly in my mind and heart, he is already palliative, simply being kept in his little bubble while he graciously (except for the hawking and spitting) declines.

There is peace in knowing you have done your best and that he has had the best possible outcome he can have.

Originally written May 8















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