Something happened recently that has really worn on me. My wife and primary caregiver, Phyllis June, was deathly sick. She has suffered with a disease since she was 17 years old and experiences flare-ups from time to time.
We have dealt with them for years now, but last weekend she was worse than usual. That is what it seemed to me at least. When someone you love is sick or injured, you feel helpless despite trying to do everything you can for them. Family caregivers know this feeling all too well.
However, dementia adds additional challenges and anxiety to a situation like this. I literally felt useless. As a dementia patient, what could I do to help? The experience was very scary for me, and I think I may have slept two hours all weekend. I checked on my wife constantly and spent a great deal of time sitting in our front room just wondering what to do.
Normally, I understand what this is, and I realize that this has happened many times over the years. For whatever reason, this time was particularly difficult for me. I told her Friday evening that if she didn’t improve overnight, we were headed to the emergency room first thing Saturday morning.
She wasn't any better on Saturday. In fact, she was probably worse. But she assured me she would be alright and just needed to stay in bed and sleep. We did what we always do when this happens: make sure she gets the additional medications she needs and let this run its course. Fortunately, Phyllis June was much better Sunday night, but I was still just as scared then as I was when this flare-up began.
Primary Caregivers Become Incapacitated, Too
I thought very long and hard before writing about this. It sounds very inconsiderate of me to be worried about what I was going through when Phyllis June was as sick as she was. I have never put myself before my wife, but my condition has changed that. I wanted to share this experience to point out that, when a family caregiver falls ill, it’s important to pay special attention to the person they care for as well, especially if they have Alzheimer’s disease or another form of dementia.
It is a very, very scary thing for a dementia patient when their primary caregiver is incapacitated. I knew she was very close to needing to be hospitalized, which has happened in the past. The very thought of this scenario had me scared to death. Furthermore, my routine fell by the wayside and my main source of information, direction, and reassurance was unavailable.
I am still pretty self-supportive despite my diagnosis. I don't need someone looking after me around the clock yet, but the mere fact that Phyllis June wasn't able to tell me what day it was, what time it was, or what I was supposed to be doing was horribly disorienting.
As a patient, I can tell you that we do depend on others, even if we still seem self-sufficient or don't communicate our needs or confusion. I talk all the time about routines and how important it is that patients stick to them, even if you don't realize they have one. My daily routine is the most important thing to me—more important than each breath I take. My wife is my routine, and I cannot fathom life without her.
We seldom think of what we’d to do in situations like this, when a primary caregiver gets sick or injured in a car accident or is otherwise prevented from doing what they normally do for their care recipient. What Phyllis June and I just went through was a real eye-opener for both of us.
The Importance of Emergency Respite Care
My wife has recovered, but this will no doubt happen again. In addition to our normal care plan, we have decided to put an emergency plan in place regarding actions I need to take and who will step in to help Phyllis June and me in the future. Of course, we’ll probably need to have another backup plan at the ready as well. There is always a considerable likelihood that Plan B will not work in trying times.
This is something I hope each of you think and talk about and prepare for before something like this happens in your immediate family. Arranging emergency respite care for dementia patients is a crucial part of any care plan. This could consist of another family member stepping in to take over, in-home care or even a respite stay in a senior living facility. The more comfortable they are with this plan ahead of time, the better. Whether a primary caregiver must have a planned surgery or suddenly becomes very ill, nobody needs the added stress of scrambling to ensure their care recipient is looked after in their absence.
Next time Phyllis June has a flare-up, I will not remember the fear I just experienced. Depending on how much my disease has progressed, I may not even remember that things always get better when this happens. I will only know that I cannot do anything to help and have that same powerless feeling again. It is very likely that I will no longer enjoy the same level of awareness and self-reliance that I do now, which only makes contingency planning that much more important.
Life happens. Be sure you have a backup plan (or two or three) in case you are not able to care for your loved one, whether it’s for just a day, a week, or however long. God forbid something happens that renders you incapable of providing care. It’s not uncommon for caregivers to die before their care recipients, especially when dementia is involved. It’s important to prepare for that morbid possibility as well.
As I have said many times, dementia patients are not capable of living in your world anymore. Family members and caregivers must learn to live in ours. As selfish as this may sound, we need to have things kept as normal as possible, even when things are utterly chaotic. Planning for these real life setbacks benefits us and gives our dementia caregivers invaluable peace of mind.
Editor’s Note: Phyllis June Phelps, Rick’s wife of 38 years and primary caregiver, passed away November 9, 2021. She was 64 years old.