It is about 11:40pm local time as I start this post. It is not unusual for me to be writing until 1am or 1:30am. Why on earth don’t I start doing this earlier? Beyond lack of organization of time and self-discipline, there are some reasons built into the task of Caregiving.
First of all, when someone for whom you are caring cannot take care of personal needs or walk very far without falling, every waking moment is bound to the care and protection of your Carereceiver. As a Caregiver, you are doubling the number of basic tasks associated with a human’s daily needs. You are living two lives at the same time.
One of the lives you are living is, of course, your own. You know what you want and when you want it. When living someone else’s life also, just discovering what the wants and needs are takes a great deal of attention and mental energy, especially, if that someone has difficulty vocalizing those wants and need.
When nature calls the one for whom you are caring, he/she may not hear the call until it is too late to make it to the necessary destination. Mary Ann can be up and off walking to one place or another in seconds. Often I discover that she has gotten up and headed off by the sound of the thump when she lands on the floor. It is exhausting to keep attention so tuned as not to miss those moments of need. I have heard and believe that mental exercise is far more tiring than physical exertion. The stamina needed to pay attention to someone else’s every move, every need, every want, uses up endless amounts of the Caretaker’s reserves.
One of the consequences of the constancy of the needs is the inability to find time to concentrate on a task that needs more than a few minutes to do. Writing a post for this Blog cannot happen while Mary Ann is up and moving about. My time belongs to her all the time she is awake and some of the time she is sleeping. I suspect that the same is so for most Caregivers.
In a sense, my day starts when Mary Ann settles in bed. There are periodic needs during the night, but the general pattern is that the time I can call my own comes between about 9pm and 1am. Now that I am retired, I am able to sleep longer in the morning, assuming Mary Ann is willing and able to sleep later also.
Before I retired, the pattern was about the same, except that sleeping later in the morning was not as often an option. Those of you who are working full time and caregiving full time are likely to be exhausted most of the time, especially if you also claim that late night time as your own. Here is the logic of staying up. The moment the Caregiver gets up in the morning, assuming the Carereceiver gets up then also, it all starts over again. Waking up in the morning is waking to intense demands. To go to bed at the same time the one for whom you are caring does leaves no time just for yourself — just to be one person only.
Of course this is an unhealthy pattern. Sleep deprivation has very destructive consequences. It affects negatively our ability to perform daily tasks effectively and efficiently. We are hardly at our best. Coping with little stresses becomes more difficult. Mole hills actually do become mountans in our mind. We can become forgetful, irritable, our thought processes can slow. I need no scientific studies to demonstrate the truth of those conclusions about the impact of too little rest.
Now comes the time to share wonderful solutions to the problem of Caregiver exhaustion. If I had this one solved, I would not be writing this post at what now is about 12:20am. I will offer some of the feeble attempts I have made over the years of dealing with this particular dimension of the Caregiver’s challenge. For one thing, I structured the week so that I had some long days and some days to sleep in. It seemed to work better for me to work many hours in one day than normal hours two days. By the way, I realize that doing so breaks the rules for sleeping well, the ones that say, get up at the same time every day, go to bed at the same time. Another rule I regularly break is the one that says, no caffeine later in the day. Caffeine is my drug of choice. Evening meetings, if I hoped to actually be awake during them, demanded a heavy dose of caffeine through my chosen delivery system, PT’s Coffee (by the way, the best in the nation as far as I am concerned — sorry, Starbuck’s fans).
On occasion (too rarely), a Volunteer or my daughter would come over and sleep upstairs to care for Mary Ann during the night, while I got a full night’s sleep in the downstairs. Especially when I was working, those occasional two night retreats would include nights in which I slept ten or twelve hours.
Had I continued to work much longer, circumstances would have demanded using the local resources I mentioned in last night’s post to provide paid time covered by others so that I could get rest on occasion.
Since it is now heading for 12:40am, it is apparent that I need counsel from any who happen to read this post and have ideas for how to minimize Caregiver exhaustion. One possible solution would be to simply stop trying to write posts for this blog any longer. Two reasons speak against that solution. One is that I would be likely to just sit in front of the tube flipping between inanities there. The second is that I find doing this writing very satisfying and energizing. Anticipating writing adds interest to my days and makes be a better (and more sane) Caregiver. The processing I do here has had a very positive effect on my ability to reframe sometimes frustrating tasks in ways that allow me to discover meaning in those tasks, at the same time giving my life meaning. Why so tired? It is heading for 1:00am now. All in all, I am willing to endure being tired if it allows me to live meaningfully.
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April 7, 2009 at 5:22 am
Peter,
I find many caregivers seem to write at night. As you indicated, instead of going to bed this time gives me a chance to unwind and possibly find communication. Other than bath aids and nurses, I rarely see someone other than family that I can carry on a conversation with. I miss being able to discuss current issues or friends and their lives. I love to work outdoors, but I feel guilty being outside when he is stuck in a bed, even though he has no desire to go anyplace and is usually asleep when I slip out. The constant worry of another human depending on you for all their needs is indeed tiring. I am just thankful God gives me the strength to face each day and find the ability to persevere.
April 8, 2009 at 2:00 am
Sharon,
The need for ordinary adult conversation is tough to satisfy on this front also. I find myself starting conversations in with strangers in line at the store, or making conversation with the person at the register. Anyone who dares cross our threshold is likely to be fully engaged in conversation by the time their second foot has landed inside.
Working outdoors is pretty tough to accomplish. Beyond my laziness, Mary Ann is mobile enough that it is risky for her to be out of sight. Sometimes I use the baby monitor, but she can get up and fall in seconds, so there is no chance to get inside in time. She is not big on being outside, but with the right weather, that can work for a short time on occasion.
I think the key to survival as a caregiver comes from a rich internal life. As a retired pastor, I have walked with folks through some seemingly impossible situations that should have broken them or driven them over the edge. The internal strength we found together from a powerful source is the only thing that allowed survival. In fact sometimes people seemed to thrive in the face of what should have destroyed them.
Thanks for your comment. It is reassuring to hear from others who understand the unique challenges of being the primary caregiver for someone who needs you.