Dementia doesn’t shelter-in-place. There is no pause. There is no waiting. It rolls relentlessly on, continuing its forward movement. It continues to take away Mom’s ability to communicate. Words are fewer and farther between. It continues to take away her mobility. Steps are slower and slower. Its newest take away is her ability to swallow. It has started with pills and occasionally bites of food. Eating a meal takes forever, because she has to be reminded to take bites and then reminded to swallow them. Now, sometimes, she cannot seem to swallow, even when reminded. She is frightened to take her medicine for fear of choking, so it has all been switched to chewables or liquids.
Dementia doesn’t recognize pandemics. Thank goodness for Mom, she is mostly unaware of the danger. The facility where they live started with asking us questions before we could go for a visit. Then they restricted us from going in at all, but since Dad can still drive, he could still meet us in a parking lot across the street to pick up groceries and such. Now, he can no longer leave the property, unless he is willing to undergo a 14-day quarantine upon his reentry. Even if we could get onto campus through the security gate, they live on a high floor, where it is impossible to get to a window to see in. We are completely cut off.
It is hard for us, but it is more difficult for Dad. We are his support system. Thank goodness the care givers can still go in to help him with mom, but his emotional support has been ripped away. Knowing one of us is coming for lunch, or to bring him supplies, or just for a visit has been removed. The rug is pulled out from under him. We are talking, texting and soon to be, zooming with him daily, but Mom’s swallowing issue has come up quickly. Melinda, his medical go-to, cannot come in to observe. She has consulted with the on-site nurse practitioner and they have adjusted what is needed, but it is wearing Dad out. The mental fatigue of knowing he is the ‘lone’ caregiver is wearing him down.
For us, it is excruciating to ‘watch’ and not be able to do more. The mental and physical exhaustion for Dad is tangible. We see her decline is taking a toll for both of them, and we have recognized that however long this shelter-in-place order holds, and whatever comes after it, will keep us from them for a while yet. Mom barely knew us before it started and then only by recognition, not by name. We know it is likely she will not know us after.
It has also crossed our minds that there is a chance we will not ever see her again. It could happen. But the pain of that idea is too great a burden to bear. In the night, I have to forbid my imagination to paint worse case scenarios of Dad handling her death alone, or her ending up in a hospital alone with no one there to be with her. Banishing thoughts is stressful business because they only move to the back of the mind, not out of it.
To be honest, the fact that we are caregivers for my parents and Bill’s dad creates quite a bit of worry. In addition to the uncertainty of our own job losses and financial concerns, it is a lot. I am a woman of faith, and I know God is with us all during this time of hardship, but I am not going to lie, I worry quite a bit these days. There is a lot of time to do it when you are locked in your home. I write in the night often, because putting my thoughts, whatever they are, onto a page gets them out of my mind long enough I can get in a few more hours of sleep.
I have used the word unprecedented until I am sick of it and hope to never hear it again, even though it still applies. These times in which we are living have pulled the rug out from under us all. So many of us are caring for our elderly parents. Our concern for their welfare is real. The cost of their loneliness is a high price. The facilities they are in are holding their collective breath that Corona will not sneak into their doors and wreak havoc. We are praying it doesn’t, because it is a terrible way to die. No one would wish it on their worst enemy. The thought of it keeps me in my house. It keeps me begging others to stay home. Dementia doesn’t shelter in place well, so please stay home so we can all be released to get back to loving on and caring for our parents.
For all those in our same situation, God bless you. We see you. We know. It is tough. The hardest thing ever. Apart. Alone. Separated is not what any of us want. Our hearts are breaking for you and your parents.
For those caring for their parents in homes, bless you has you guard the doors. Together. Watching for any sign. Waiting for the unseen enemy to show up. Saying no to everyone is a heavy responsibility.
Our prayer is for all of us to make it through this sooner rather than later. And in the meantime, for our parents to feel our love whether it is from a distance or in the next room, as we all shelter-in-place for their survival.