Care For The Caregiver

Seriously, can good really come out of tragedy? Am I really supposed to look at a serious problem and find some ray of sunshine? The answer to both questions is actually, yes. Trouble is, the vision you need to see the good is called hindsight. It’s not easy to see anything good at the time when you are watching a loved one suffer – or even suffering yourself. Others may guilt you into thinking you ought to be looking on the bright side. But when you are going through illness, caregiving, sorrow, or pain, the bright side may be slow in coming. Don’t beat yourself up about feeling periodic grief or anger. It’s a natural part of life.

I am always impressed with how Jesus handled his grieving friends after His death. He walked with them on the Road to Emmaus and listened to their anger, grief, and bewilderment. He did not tell them to suck it up and get on with life. He allowed them the space to grieve. Then He opened their eyes so they could see who He was, and their joy was restored.  

Time will one day show us life’s beauty again. That crack in the sidewalk does sometimes allow a flower to come peeking through, but it is not an immediate process. Neither is your journey through difficult times. As our family now faces grief and sorrow, I am encouraged to know that in time, we too will see some good in the experience. A flower will eventually appear from a seed planted by sorrow. Watch for it.

Parents proudly record a child’s height as growth takes place. Children themselves become excited about how much taller they are from one year to the next. But what about our mental, spiritual, or emotional health as adults? How have we changed from year to year? How do we know? Where or how have we recorded our growth?

Today I scanned one of my older journals and marveled at what has changed in my life in the last decade and what is nearly the same. Problems I thought would never go away actually did. Positive things that seemed to always be a part of my life have remained.  But there were also some painful things I experienced and had to work my way through.

I have found that it helps to create a record of what you experience, especially as a caregiver. It doesn’t matter if you record your thoughts electronically or on paper. Just take a few minutes whenever you can to note how you are processing your experience. Include both the joys and the challenges. And every now and then, go back and review what you’ve written or recorded. Check to see how much you’ve grown over time, and smile as you reminisce.

My best friend and colleague sat in my office and gave me an animated review of her morning presentation. But I was distracted by her top which looked like it was on backward. When I asked her if it was; she pulled down the neckline and looked inside. Shrugging her shoulders, she said, “Oh well, I guess it is.” It didn’t bother her at all because she was not one to be caught up in her appearance.

At that time in my life, I would have been distraught about what others could be saying if I had walked around all morning with something out of place. However, the years have taught me to be less focused on outward appearances and to be more accepting of who I am inwardly, in my soul. And because the soul has to do with the mind, emotions, will, character, etc., our soul is what is important to God.

When the Psalmist says that he lifts up his soul to God, he is saying that he strips away all the outward pretense. He becomes honest about who he really is or about what he is feeling at the moment. When we are caregivers, there is the pressure to present a perfect persona to others. We may want to give the appearance that everything is in place. But in those days when you are hurrying so much that something doesn’t get done, or you put the kid’s t-shirt on backward, just know that if your soul is well, so are you.  

Thanks to the contacts app on my phone, I know very few phone numbers. But not everyone enjoys the convenience of a contact list with the caller’s photo attached. My husband remembers everyone’s phone number, so he answers calls based on number recognition. Granted, that doesn’t always work, but he refuses to use an app to identify callers. No matter how crazy I think it is, that is his choice.

And everyone has their way of doing things, no matter what the age. It is more prevalent in the elderly because time has turned lifetime practices into rock-solid habits. As a caregiver, we may struggle with trying to get a loved one to do something we think could be done better another way. Yet, if their system is not harmful, we would be better off letting them follow Frank Sinatra’s mantra, “I did it my way.” An Alzheimer’s patient, for example, may only want to do what is familiar, regardless of something new we may want to introduce to them. But for them especially, familiarity is crucial. Loved ones with other illnesses may live by patterns and habits that sustain them.

Energy spent trying to make others follow our way of thinking – usually so that life will be easier for us, actually causes us more frustration. So, I try to smile when my husband picks up his ringing phone, looks at the number, and wonders out loud, “Who is this?” Yes, life could be easier for him with a contact app. But life would also be easier for me if I didn’t let his system bother me. It’s his phone anyway, so I accept that he is just singing along with Sinatra.

Whenever they had a substitute teacher, my students proved that behavior change needs to be intrinsic rather than extrinsic. My practice of hanging onto a checklist of behaviors and attempting to monitor nearly 30 students all day, every weekday, was tiresome. So, I changed tactics. Rather than trying to put a check by little Johnny’s name in the correct box that matched the misbehavior, I began telling a misbehaving student to “Check yourself.”

This new process meant that they were supposed to stop and consider what they were doing that was in conflict with the classroom rules. Having a few chances to self-correct taught the students to monitor themselves. Slowly, changes in behavior became more intrinsic and the classroom became a more peaceful place to be.

As caregivers, we may be waiting for someone else to come tell us what’s wrong when it feels like nothing is going right in our lives.  But those are the time you have to stop and “check yourself.” You have to ask yourself where and how you have gotten off-kilter. When was the last time you were feeling hopeful or peaceful, and what positive things were you doing that caused it? What do you need to do to get back on track? You know your behaviors and patterns better than anyone else. Check yourself.

Caregivers sometimes go it alone, thinking that no one else understands or that no one else cares. No two situations are alike, but there are similarities in caregiving that can bring people together.

Try Googling ‘support groups for caregivers,’ and you will find many options to sort through. Find the group that best meets your needs and explore the options available to you. There is no need to travel this difficult journey alone. It’s time to become part of a group that cares.

Life has a way of ignoring your plans. Your agenda for the day sits there, nicely completed, and maybe even color-coded. At the very least, it’s in your head. You know what time you are picking up whom, what time you need to leave the house, and even when you expect to be back. But then life happens.

There are days that no matter how much you try to get back to your schedule, other things keep intervening. Like the voice on the GPS when the driver goes off course, you seem to repeatedly be saying, “Recalculating!”  You may find yourself waiting in a line you thought would be moving faster – whether it’s in the store, in traffic, or behind a train. Then there is the person you can’t get off the phone. All of these are agenda busters.

There comes a point when we may have to ditch the agenda and go with the flow of what’s happening, as long as to do so is not life-threatening. What we see as an interruption may sometimes allow us to listen to someone who needed to be heard. Or it could be an opportunity to let the agenda go and rest for a moment. After all, you are already going a mile a minute anyway. So, take the opportunity to slow down, “recalculate,” lay the agenda aside, and live in the moment.

A recent conversation with a friend whose husband now has Alzheimer’s reminded me that caring for someone with this disease is like trying to navigate unchartered waters.  

Since June is Alzheimer’s and Brain Awareness Month, I encourage you to visit the Alzheimer’s Association website at https://www.alz.org/alzheimers-dementia/stages (or send a friend there) for information on the stages of Alzheimer’s. This website also helps you search for access to local resources and provides related research. Your level of awareness can help calm fears for both you and your loved one.

When my son was young, I would periodically take him to an ice cream shop whose specialty was its 21 flavors. After he had spent a lengthy amount of time looking at all the options, he would select vanilla. It drove me crazy! But come to think of it, I always selected the one flavor I liked the most too. I wonder now if the selections were just too much to process, so he stuck with what was familiar.

Decades later when my mother was housed at an Alzheimer’s care facility, I watched how the staff helped the clients make food selections when they had an outing at a restaurant.  First, they selected a venue that was elderly-friendly and understood the possible limitations of the group. The facility’s staff had the waitresses offer their clients two meal choices rather than give them an entire menu to select from. They realized that having too many decisions to make can be overwhelming to an Alzheimer’s patient.

Likewise, a caregiver can also become frustrated when their loved one can no longer make a selection quickly.  You can lessen the frustration for both of you by offering a smaller pool of options, whether it’s what to wear or what to eat. Yes, your loved one’s world does become smaller, but providing limited options can give them the dignity of being able to choose for themselves as long as they can.