An entry I made in the journal I’d kept during my mother’s journey with Alzheimer’s related to an unraveling of relationships in our family. Although I hadn’t recorded the actual issues, the implications were that I was irritated at siblings that I felt could be doing more to help care for our mother. Even though we know we can’t change people, it sometimes still hurts that others don’t or won’t pitch in like we feel they should.
But instead of dwelling on what I felt was unfair, I remembered the advice of my youngest brother Jason that we should not let our mother’s illness cause breaks in our relationships with one another. That’s a little easier said than done when there may already be rifts in the family. Loving other family members doesn’t mean we have to like what they do or don’t do. We love them because we are family, and we mend the rifts for the sake of the person we are caring for. We also do it for our own sakes because it gives us one less burden to carry.
I get totally frustrated when my computer monitor is completely black – indicating that the computer may not be working. The frustration is multiplied when there is something I need to get done immediately. When this happened recently, I went through all the checks: everything was plugged in, the power was on, and I replaced the battery in the wireless mouse. Still nothing. It was time for plan B – go dig out the old monitor that I hadn’t yet disposed of and connect it to the computer. And it worked. So at least I’d traced the problem to the new monitor, not the system itself.
After I finished printing what I needed, I decided to try the monitor again before I took it back to the store to complain that I’d been sold a piece of trash. In moving the monitor, my finger touched a small button beneath the screen. I moved it to realize it was the power button; it dawned on me that I had inadvertently turned the monitor off when I’d rearranged things the day before while dusting. All my previous frustration could have been averted if I had simply checked the power on the monitor, not just the power on the computer.
When you become totally frustrated that things don’t seem to be working the way you want them to as a caregiver, or when you think that no matter what you do things will never change, stop and check your power source. Are you drained because you are pushing yourself too much? Have you stopped getting the rest you need? What about your energy level – are you eating what you need to sustain your health, or surviving on caffeine and sugar? Have you given yourself permission to step away from your load of caregiving and recharge? Do what you can reconnect to your power source so that you don’t lose hope.
Valentine’s Day usually focuses on relationships between couples, so anyone who is not a part of a couple may feel slighted. This year, however, let’s shift our focus to the love that exists within families. More specifically, let’s think about and appreciate the love a caregiver shows to someone in the family who may or may not be a spouse. This short video shows us how a sister loves and cares for her brother. https://videos.aarp.org/detail/video/5312257889001/regina-belle-on-caring-for-her-brother
Don’t you hate it when the scale in the doctor’s office adds 5 or 6 pounds to your weight? I understand the white coat syndrome that makes your blood pressure reading higher at the doctor’s office too, but it can all be discouraging.
I lamented the same to my doctor yesterday, and he only smiled encouragingly. Then he told me that as long as I am seeing progress on my scale, that it’s all good. Warning against fad diets, he told me that slow progress means I am making lifestyle changes that could be lasting rather than doing something drastic for a while, then quitting it and reversing the progress I had made.
When I consider this in the mindset of caregiving, it reminds me to celebrate small successes. I have to look for some small things such as how I may have changed my self-care, how I better managed my care for a loved one, or how I thought about my role and the responsibilities of caregiving. Such small, positive changes have the potential of leading to lasting change. A former pastor and friend used to say most people have a “microwave mentality.” That is, we all want change to happen immediately. And although lasting change is a slow process, it’s worth our time to celebrate the little successes along the way. After all, they will eventually add up to the big changes we want to see.
🙋Your Turn- What small successes will you celebrate?
I used to love smorgasbords until I realized how much they helped me overeat. Of course, I also noticed others who loaded up their plates and couldn’t eat all they had. As the idiom says, perhaps their eyes were bigger than their stomach.
In other words, those with wasted food at the smorgasbord thought they could eat more than their bodies actually could handle. In a similar sense, the role of being a caregiver can become like that second trip to the buffet. It can become something you thought you could easily handle along with the other responsibilities you already have on your plate.
As an active volunteer in the church, I am often asked to assist with committees and events. But when I became a primary caregiver for my mother, I soon realized that I couldn’t take on any leadership roles or volunteer for anything extra at church. Since my job required frequent overnight travel also, I had to try to balance family responsibilities along with caregiving.
As much as it hurt to walk away from some of the things I love to do, I eventually learned to take some stuff off my plate and to not feel guilty for saying no. If you are in the position where caregiving has taken a prominent role in your life – a sort of entrée – then you will need to carefully examine the other courses and sides you are tempted to add on. Make it your goal to be at your best by having a more balanced lifestyle.
🙋Your Turn: How will you begin to take the “extras” off your plate?
By now you may have become a well-oiled machine doing all that caregiving requires: check the meds, make the appointments, change the bed, arrange for meals. On and on it goes. Yet, in all that you are required to do, there may be a small shift that needs to happen.
I had to learn how to “be with” my mother rather than just “do for” her. This was a concept I learned from the book, Caring for Your Aging Parents by Richard Johnson. People like me keep ongoing mental checklists along with the written ones to make sure nothing is forgotten. And that’s helpful; but as Johnson explained, at some point you have to actually be with the person you are caring for.
Put aside all the things that are pressing for a moment, and just be with them. Look at your loved one more closely; consider what they may be feeling, hold their hand and just enjoy the relationship. For people who have Alzheimer’s, you may be meeting a new person each time you visit, but find a way to make the time with them more important than the work that has to be done. As others have said far more eloquently than me, dust will keep.
Your Turn: What’s one thing you will do to “be with” your loved one?
“Here your glasses are, Ms. Perry.” Another student would have located the eyeglasses I had left someplace as I walked around the classroom and stopped to see something written on the blackboard. Constantly having to take my glasses off let me know it was time for a change.
History says that Benjamin Franklin invented bifocals because he got tired of having to keep up with two pairs of glasses. So, he created glasses with two half lenses: the top lenses let him see objects in the distance, and the bottom half helped with reading.
One of the first things a caregiver has to realize is that things are not as they used to be – either for you or for the person in need of your care. Because we naturally appreciate what we know and what is most comfortable, we may spend too much mental time recalling what the loved one used to be. Recalling pleasant memories is needful, but if that’s the only lens we use, it can be detrimental.
What could be more productive is to see what is directly in front of us and tell ourselves the truth about where a loved one is now in terms of their health and abilities. Wishing they were what they used to be will serve no purpose. The good thing about today’s bifocals is that there doesn’t have to be an obvious separating line between the lenses. Progressive lenses may actually be trifocal by helping you see far away, middle distance, or close up. For those who use progressive lenses, the eye can make the change from one distance to another gradually without you even knowing the change is taking place. Your brain just makes the adjustment.
As you continue caring for others, adjust your lenses as needed. Face what is directly in front of you as you treasure the far away memories of the past; then continue to look through lenses of love and reality as you give care to others.
When I first began my role as a caregiver, a dear colleague gave me advice that turned out to be a tremendous help. Marti had been the primary caregiver and guardian of a relative for many years. Her advice was to carry my mother’s medical records with me at all times and to keep them updated.
She was kind enough to email me her form so that I could alter it to meet my needs. Marti was right in saying that during medical emergencies when you may be emotional, the record is a valuable resource for all the questions you would be asked about your loved one’s health history and the meds they are taking. I’ve even had receptionists at the hospital ask if they could keep the form for their records.
You can find free personal medical record forms on AARP.org or through a google search. Adapt one to include whatever information you need to support your loved one. I would also use the form to record any medical incidents that occurred, any changes to my mother’s care, or her general health. (Actually, I’ve started using the form to keep a record of my medical history as well.) As a caregiver, you can lighten your load by finding, using, or accepting and sharing tools that will save you time and lessen your worry.
🙋Your Turn- Feel free to share any helpful tools you use by replying in this space.
When this slang expression was started nearly 20 years ago, it meant that you were moving too fast, and you needed to slow down before you got into trouble. I’d like to use it to mean you need to step back, breathe, and reflect. What better thing to do as we look forward to the start of another year?
What has your year been like as a caregiver? If you were new to this role, you may be feeling as though you’ve been on a treadmill where someone keeps increasing the speed without your knowledge or permission. If you’ve been on this road for a while, you may feel competent at the increased speed because you’ve learned how to handle it. Yet, there may be a secret wish that you could slow down just long enough to catch your breath.
While the actual responsibilities of caregiving may not change, you can slow your roll by reflecting on what has gone well this year. Not everything has been out of your control, and there are some things that went well which you may be able to duplicate for the upcoming year. We sometimes forget when we have been successful because the points of failure seem to loom larger than life and like water rolling downhill, we find ourselves settling in our low points.
I encourage you to not settle there, but to remember what has been good, what has gone well, and what has made you smile. Slow your roll.
🙋Your Turn: What are the good things you will duplicate for the new year?
This morning one of my nieces asked for input on her logo. Businesses use logos to identify their brand or their image. It started me thinking about the need for personal logos, which would be mottos.
A motto is defined as a short sentence or phrase that summarizes the beliefs or ideals that guide you, your family, or an institution. Someone may simply call them, “words to live by.” Businesses call them slogans in that they are meant to be readily recognizable and motivational. Here are a few you likely have heard before:
We try harder
Yes, we can
Like a good neighbor, – is there
You’re in good hands
When you care enough to send the very best
As a caregiver, you are operating out of a belief system that you may not even have put much thought to. You are naturally providing the care and nurturing that is needed for a loved one or a friend without stopping to think why. Your caregiving is a gift that you are giving to someone else as often as they need to receive it. It may be worth your time to consider why you do it. Once you’ve done that, try putting these words you live by into a concise statement that identifies who you are and why you do what you do. You will find that your motto can become a source of encouragement for the times when caregiving becomes hard and you feel like giving up. You can say it to yourself, make it into a sign you see daily, or even shout it out loud when you need to… and it will be just the motivation you need to keep going.
🙋Your Turn- Feel free to share the motto you created by replying in this space.