A Look Into the Future
Ever wonder what the future holds? I just did. It had nothing to do with my health and well-being, not even that of my mother or older brother. It had to do with my daughter.
Caregiver Quicksand
We've all seen those movies in which someone falls into quicksand, gets sucked down and drowns. Reality isn't quite like that, but quicksand—even the metaphorical variety—sure can make life a struggle before you can get on with things.
The Lifeguard
What is it about we caregivers that makes us do what we do? Is it an innate sense of obligation? A perceived inability to escape or avoid the situation? Guilt over possibly placing the responsibility on another or not being there for a person in need? A highly developed sense of empathy? An acceptance of just having to do what has to be done in this life? A deeper understanding of what love is?
The Happy (Alzheimer's) Wanderer
I had my first "Happy Wanderer" moment this past weekend. I went to visit my mother at her apartment, where she lives with a 24/7 aide. I brought the week's groceries, set up the week's meds, paid the week's bills and entertained my mom with our weekly games of Scrabble.
Things I Know (but wish I didn't)
Ever wake up in the morning, think of some of the things on your caregiver to-do list...and wish you didn't even know some of those tasks existed? I have. I do. I wish I didn't.
The Great Escape
There are reasons we caregivers so seldom take vacations.
You might think it's the cost of the trip, which you've likely already spent on necessities for your loved one.
You might think it's the unavailability of time, since who's got time to go away when so much that takes so much of your time has to be done for your loved one.
The Money Trail
When you're caring for a loved one, you have to keep track of a lot of things. There is, of course, the making of and getting one to appointments with doctors. There's also the dispensing of meds, bathing and toileting, grocery shopping and home maintenance. But the one that gets me is handling the finances.
Handle with Care
You would think—and we often tell you—that your pharmacist is the primary gatekeeper when it comes to making sure the person you are caring for receives the right meds in the right dosages. So what happens when the pharmacist doesn't carefully watch the gate, so to speak, and you unwittingly receive the wrong drug or the wrong dosage of the right drug?
The Last Goodbye?
I'm driving my daughter to college tomorrow, so yesterday I took her with me to see my mother. It was a chance to talk, to catch up, to share photos of Gillian's prom, graduation and graduation parties. It was an opportunity for Gillian to say goodbye to my mom, and for Mom to say goodbye to her only grandchild. And I couldn't help but wonder about the potential finality of these good-byes.
It is not that I expect my mother to pass away between now and when Gillian returns at Thanksgiving. It's more that I wonder how alive her memory will be, and what remembrance she will have of my now-adult child.
Will she remember only the redheaded toddler who would romp around the yard at her house more than a decade ago, or will she still have a complete image of the mature teenager she saw yesterday? Will she remember the little girl in the hundred or so photos displayed around her apartment, or the skilled photographer who is off to take university-level art courses? Will she remember only the tot she'd push in our stroller, or the woman who strolled with her and helped her with her walker?
I could tell from the tears welling up in my memory-challenged mother's eyes that even she was cognizant of these questions—and somewhat scared of the potential answers. She so wants to participate in Gillian's future, yet finds it so hard to remember anything but the faraway past. The recent events, the information about what is about to be—where Gillian will be attending college, what she wants to study—is so difficult for Mom to remember. And it made for a moment I will never forget.
Something My Father Said
One thing I vividly remember from my childhood was watching my father on the kitchen phone every night, between the moment when he came home from work and when dinner was served, talking to his mother. Sometimes—many times—I could hear the frustration in his voice, as he would repeat stories he'd told earlier in the week or would try to deal with problems my grandmother was bringing to his attention, or problems of her creation that he was bringing to her attention.
And almost every night, after the phone call and with drink in hand, my father would look me in the eye and say: "It's not easy raising parents."
I thought at the time that he was being funny and that I fully understood what he was saying. What I didn't realize is that I didn't know the half of it.
I got a hint of it when my father was ailing with coronary disease prior to his death. Every so often he wouldn't eat—"I'm not hungry!" he'd insist—and he'd eventually suffer from what we later learned was malnutrition-induced dementia. This would manifest itself in confusion, hallucination, anger and more—and would disappear once he got a decent amount of food in him for a few days straight.
But in his last few days, he really didn't want to eat. And as if he were a child, my mother and brother would stand in front of him in his hospital room and politely badger him about how he needs to eat. They were going to the cafeteria, they'd say, and wanted to know what could they bring back for him. He would again insist he wanted nothing and that he didn't feel like eating.
And I got it. It might not be easy raising parents, but no matter how childlike their behavior might seem, they are not children. They do understand what they need and what they want and the importance of their having what we might deem a necessity. They usually understand the consequences of their actions. So when my mother and brother left the room to go eat, I said to my dad: "Can I ask you a question?"
"I don't want anything to eat," he said gruffly.
"I know," I replied. "Would you like a back rub?"
"That," he said, leaning forward in his chair so I could provide a massage, "would be great!" And he enjoyed the next 10 minutes more than you can imagine.
And now, five years later, as my mother descends into the world of diabetes-induced dementia, ever more rapidly losing her memory and the joie de vivre that made her an incredible social butterfly for over 80 years, I tend to her ever more childlike thought patterns and needs. Her ability to do for herself is disappearing. Her independence is vanishing. And once again I am faced with the reality that raising a parent is no easy task. It is, however, one you can't neglect. Just as you would not abandon one starting life, you can't abandon one ending life. And if it's not easy, remember that that which is worthwhile is rarely easy—it's just the right thing to do.
A Lesson in Patience
Ask my daughter or any of my friends—even some of my co-workers here at Caring Today—and they will tell you that patience isn't a virtue I easily display. Traffic jams, delays that affect our meeting deadlines, the inability of someone to quickly understand a point in a discussion...all of these and more are buttons you might not want to push if you want to continue to see the sweet and friendly side of yours truly.
So, you can only imagine how I might react as my mother's dementia has continued to increasingly affect her ability to remember things we've just discussed. And although I initially found it amazingly annoying to continually repeat myself, I've started to find the humor in it. Fact is, I sometimes find it a relaxing diversion.
I call my mother almost every day and travel the 40 miles to see her once or twice a week. Since her social life now is quite limited, her contribution to the discussion is usually in the form of asking me what's new in my life. And even though I can draw from work, a relationship, and getting my daughter readied for college, when you talk to someone every day, you sometimes run out of things that are new.
Until recently, being asked what's new on a daily basis would have been one of those buttons on the patience-tester ("What could possibly be new? I just spoke with you 20 hours ago!"). But now, knowing Mom's memory isn't what it once was, I don't let it bother me. I know I can tell the same tale I told her the day before, and it will seem like a fresh story to her.
More important, however, is I have had to step back. I have had to come to accept that her asking me "What's new?" or to ask me for the umpteenth time what college my daughter will be attending come fall, is not something she does to perturb me. It is not her fault she cannot remember. There is no blame to be placed here. It simply is what it is, and I must learn to adjust to it.
And so I have. When Mom asks (for the next in what seems an uncountable number of times) what school Gillian will be attending, I simply interrupt my story, give her the answer, hear her say "Oh, that's right", and continue the tale I was telling with relaxed anticipation of the next Q&A break in the action. It's not that she's not paying attention. It's not that she is preoccupied with something else. It simply is that the blood flow to her brain is not what it once was, likely as a bad side effect from her having diabetes, and there is nothing we can do about it except participate lovingly in the experience so that she can get the most out of it. And if that means I tell the same story or answer the same question over and over again, so what? It does me no harm, and in one way makes my life easier, in that I needn't constantly come up with a fresh story. If I tell the same one, odds are she doesn't recall it. And if she does, she's polite enough not to lose patience with me for repeating myself.
Thanks, Mom!
All's Well That . . .
One of the things—maybe the most important thing—my wife always stressed was that she needed to be assured I could raise our daughter in the event my wife wasn't around. She started on this crusade long before she passed away, even before she was diagnosed with the disease that would kill her. Fact is, it was on her mind from the time she got pregnant.
Only a Word in the Dictionary
I was talking to a friend and fellow caregiver recently about a caregiving project on which she is working. I reminded her of something I often forget: "Don't strive to make it perfect. Strive to make something that can be perfected."
Too many of us too often create a problem for ourselves by trying to get things just right. Well, it doesn't always work that way. Sometimes you get it close. The next time, you'll get it closer. But to frustrate yourself by trying to get what needs to be done done perfectly often can prove counter-productive. You spend so much time trying to get it done mistake-free that you have trouble getting it done at all.
I used to have a boss who prided himself on being a perfectionist. It's not that it's bad to try to accomplish something to perfection, it's just that it is an unrealistic and stifling goal. After many years, my boss finally got this into his head. We worked on a magazine together, and although perfect was the goal, it wasn't the reality. And with deadlines constantly approaching, perfect can be hard to achieve. What finally became the company mantra was: "Perfect is only a word in the dictionary."
When it comes to caregiving, you never know what obstacle you'll face on the road to perfection. A fever can pop up, a person can unexpectedly fall down, an assistant can unwillingly drop out, a new ailment can unfortunately drop in. Treatments that were working might work no longer. Appointments that were scheduled might have to be canceled—by you or by the doctor.
What you have to accept is this: You are doing what you can when you can as best you can. And when you make that your mantra, you will understand the essence of good caregiving—perfectly!
Just Ask the Experts
I was doing a little research, thinking about things that add stress to our lives, and I found out something interesting—becoming a caregiver doesn't seem to make the cut.
There are the usual suspects on the variety of lists I found, everything from death of a family member to marital difficulties to financial problems and changes at work. Making major purchases, such as computers and cars, seemed to get people uptight. And going to jail seemed to make people tense. Moving and major holidays got some buzz, too. But, as I said, becoming a caregiver didn't get serious consideration.
So, the only thing I can imagine is that whoever is making up these lists and stressor questionnaires has never been a caregiver and must not know anyone who is or has been. Somehow, these "experts" don't recognize the fact that being a caregiver makes you face the concept of death or serious health issues of a loved one, that it can dramatically impact a marriage, that it affects the way one can handle his or her job, that it can be detrimental to one's health, and that it might just keep you up at night—to name just a few of the factors caregivers face.
Why, then, do these experts not add caregiving to the lists of stressful life events? It can't be that there aren't enough of us out there. Right now the caregiver count hovers around 50,000,000 (yes, 50 million!) and it's expected to grow by about 50 percent (that would be more than 70 million) over the next 10 years.
Just know this: You know like I know that being a caregiver is a stressful situation. You have to make sure another's well-being is secured without neglecting your own, both on a psychological and physical level. And the most important thing you can do as a caregiver is to care for yourself as much, if not more, than you care for your loved one.
The statisticians may not recognize you, but we do. Check out this site's Just for You section to find ways to de-stress. Read the Caregiver Profiles and Lessons Learned to see how others handled caregiver scenarios. Find the humor (often hidden) in caregiving in Debbie Newsham's blog, My So-Called (Caregiver) Life. Share your experiences with the other caregivers who come to this site in the Forums section, taking advantage of both the opportunity to vent and to teach others what you've learned.
And, of course, you have no problem doing all these things since you are not facing a major stressor. Just ask the "experts."
