One friend’s book about his faith struggle with a terminal illness and his initial refusal to seek medical care reminded me that not everyone needing a caregiver is a willing patient. Even those who seek medical treatment sometimes refuse to follow the medical directions given. Then there is the small cluster of Alzheimer’s patients who unknowingly become aggressive or resistant to receiving help.
Where does that leave you when you are longing to provide the needed care? We have all seen cartoons or fantastical shows with the hero slipping into a closet and reappearing in a colorful costume. At this point, the hero shows his magical powers and saves the day, right? You may be wondering if you can purchase such a costume or its superpowers online.
I think of the many times I looked into the eyes of what some would call a “hard-headed” student and inwardly prayed for them – and myself! Prayer became my secret weapon for changing the situation for the better. I also used it a lot when I was a caregiver. Consequently, even when a person in need of care from you refuses, consider using this secret weapon. They won’t know you are praying; you won’t have to argue with them, and you will have peace no matter how the situation works out. Dust off that secret weapon and put it to good use.
Illnesses, weddings, and funerals have a way of bringing out the craziness in people, wouldn’t you say? Yet some people are wise enough to use occasions such as these to bring hope and healing into families.
One son whose mother is in the final stages of cancer and now receives Hospice care recently said, “I’m her caregiver 24-7.” His father, who has been remarried for decades, periodically drives several hours to relieve his son. He sits at the bedside of someone who was once a significant part of his life and is willing to also be a comforting caregiver. What resonates with me most about this is that the son has become the bridge to reconnect a relationship that had at one time been broken. He could easily have turned his back on his father’s offer of help even though he needed it.
Caregivers will have opportunities to build bridges by allowing estranged loved ones to reconnect and provide support in instances where those offering to help are trustworthy and genuine. When such opportunities arise, remember that the bridge goes both ways and will benefit you as well.
One credit card commercial challenges us to think about our finances and ends with the question, “What’s in your wallet?” Similar to that, metacognition is simply thinking about your thinking; and life will teach you that what’s in your head has a way of determining how you feel and what you do.
When you are a caregiver, there is always a lot of stuff in your head. And it is mostly about what the future will hold for your loved one or how you will ever manage it and your life at the same time. But stop for a moment and try a little metacognition. Think about the things you are saying to yourself, the things that plague you night and day.
Now put them to the test found in the book of Philippians. Is what you are thinking true? Is it pure? Is it worth praising? Is it lovely or admirable? If it passes tests like these, then it’s worth thinking about. If not, get it out of your head and think about something else worth your mental time. What’s in your head?
Decades ago, we smiled, danced, and sang along with the popular song, “Don’t Worry, Be Happy.” It was a nice idea. But is it really possible to be happy all the time? What about when the nursing home you had trusted gets slack in caring for your loved one? Or the home health care nurse isn’t as pleasant with your mother as you once thought she would be? The list goes on and on for caregivers. At any given point things can fall apart.
The good news is that we don’t have to be happy about that or about any similar circumstances . Things go awry sometimes, so we don’t have to beat up on ourselves because we are not happy about it. There are times we just have to cry. Yet, it is possible to be joyful all the time.
You see, happiness is based on circumstances – on what is or is not happening. But joy is based on the realization that despite all that is going on, God is still in control. And in His own time and in His own way, He will put things back as they should be. Your sense of joy and peace can be restored. Think of what it looks like when a mother or father quietly goes around the house straightening a mess that has been made. That is what joy is – envisioning what it will look like when things are made right again. It will happen; so that is what will help you smile. And because of that, don’t try to be happy – be joyful!
You never signed up for this, did you? The day may come when you feel stuck with all that being a caregiver requires of you. Surely you had other plans – like your own life, right? But some things just seem to fall into our laps. We may even check the mirror periodically to see whether there is a blinking light on our forehead that says, “I’ll do everything!”
Telling someone else honestly that it’s tough, or that you don’t understand why things are happening the way they are, or even that you don’t know why you have to be the caregiver are all ways of admitting the anger you may feel. Actually, it’s healthy to acknowledge your anger and frustration – as long as you are not directing it toward the person(s) in your care. Also make sure that it’s not destructive to anyone else, yourself included.
I often tell friends or acquaintances who are grieving to call me and scream into the phone if they need to. Admitting pain and anger rather than pretending everything is okay allows you to move on. After you’ve found a healthy way to admit the anger and release it, (notice I’m not including my phone number on the internet), take a deep breath and pray for the strength to go on. You are still very much needed.
During a brief period of lucidity in my mother’s journey through Alzheimer’s, she told my sister, “I think my brain is shrinking.” She had also once asked me if I could tell that her mind was going fast. Interestingly enough, our mother had battled depression and mood swings a great portion of her life, so we were accustomed to wondering what frame of mind she would be in at any given point. After the Alzheimer’s set in, however, we couldn’t believe that we would wish for the earlier days.
An excerpt from the book I wrote about the experience says: “My friend Beverly has been referring to Mom as ‘the new Blanche’ for some time now. When people ask me how Mom is, I say that she lives in another country and speaks another language. I find that when I talk to her and she responds, the answers I give her are like those given to a small child who alone knows what they are talking about. So, I respond with comments such as, ‘Oh, okay. For real? Uh-huh, I see. Was that today?’ This encourages the speaker to continue, but the listener has no clue of the speaker’s train of thought.”
Rather than being condescending, responses such as these are simply a way to take the pressure off a loved one to carry on meaningful conversations when they no longer can. And it takes the pressure off the caregiver to expect them to communicate as they did before, or to even understand what they are talking about. Just travel with them and appreciate who they are today; it will help you both enjoy your time together.
Some caregivers may be keeping promises to parents or spouses that they would never “put them away.” That’s a noble intent, and it’s a blessing when you can fulfill such a promise. However, in spite of our best efforts to stop by my Mom’s more often, stay longer, do more of what was needed, etc., the day came when our family accepted that we could no longer care for our mother on our own. It was unsafe to leave her alone, and no one was in a position to leave their jobs or move her in with them. We would have to partner with some type of nursing facility for her care.
We relied on help from Mom’s doctor to tell her that we had to find a placement for her right away so that she was safe. We did our research, met with directors, and had tearful tours of several facilities that had an Alzheimer’s unit. The one we selected arranged for Mom to come in for lunch; she thought it was social, but it was actually an assessment. We let her see another facility the same day so that she was a part of the decision-making process. Thankfully, she also selected the first one.
When the time came to move her in, we felt pretty much felt like parents on the first day of school. We were reluctant to walk away and leave her with strangers. Yet, we chose to not feel guilty for having to place her. We were not turning our backs on her, but became regular visitors who got involved in the center’s activities as well. Everyone’s situation is different; so not everyone will need to or be able to partner with an assisted living facility for the care of a loved one. But if that day comes for you, think about my mother’s words, “I’m not happy about it, but I accept it.” In time I learned to let go of the emotion and accept it as well.
I found that simple statement at the end of a journal entry in the book about my mother’s journey with Alzheimer’s – You learn as you go. Yet we sometimes wish we knew it all upfront, right? And how can we? There are some things that only life’s experience can teach us.
Even after mulling over research or implementing best practices, we find that being a caregiver can be trial and error. (And that’s okay as long as we are not talking about life-threatening errors.) For example, we may learn a better way to talk to those we care for because as they change, we find that we must change also. What worked yesterday may not be working today. We find out how to better care for our loved ones as we peer into their faces and understand that they are more frustrated with the illness than we are.
Learning as you go can be beneficial. It takes off the pressure to get everything right all the time. This teaches us to be patient with ourselves and more patient with our loved ones. Keep learning, keep going – there are more lessons ahead to strengthen you and guide you.
Here in Illinois, we are enjoying temperatures nearing the 60’s. This came after a nearly two-week period last month of freezing weather and repetitive snowstorms. Looking outside now, it’s hard to believe how miserably cold we were or how much snow and ice had recently covered our rooftops, streets, and driveways.
However, one caveat to the sunshine these past few days has been the strong winds that bring with them their own damage and challenges. You can either hide from the wind and miss the sunshine or enjoy a walk in the sunshine and embrace the wind.
When I sat at my mother’s bedside the last day she spent on earth, there actually was a winter storm going on. The greater storm, though, was my internal one as I faced the reality that she would not live to see the next day. Rather than spending that time only crying, I began to minister to her. I cleaned and trimmed her nails, moisturized her skin and face, and cleaned and combed her hair. I also prayed over her, sang hymns, and read scripture to her. I reminded her that I loved her and told her that the family would be okay. It was a conscious decision on my part to ignore the wind and see the sunshine. I knew that she would soon be completely healed from Alzheimer’s, that her “winter” here would be done, and that she would soon know her name again. Losing a loved one is never easy, but we all know that one day our role as caregivers will change. My hope for you is that you will see the sunshine in spite of the wind.
My family was just discussing how scary the world is becoming. Day after day we hear news of senseless crimes that leave a trail of death or disability in their wake. The mother of an acquaintance I met recently through a friend is now grieving the loss of her son to highway gun violence. Needless to say, we are all also traumatized by the pandemic in some form or another.
Caregiving now takes on a new meaning and responsibility for each of us. A friend, acquaintance, or loved one doesn’t have to be terminally ill for you to become a caregiver. Today’s trauma is teaching us that we need to check on others more often. And this may not be as serious as the police welfare check in which people involve the police to ensure another person’s safety.
This is simply caring enough to reach out to others yourself. Think of the many people who have limited contact with others because of the pandemic – especially those in nursing homes. Think of those you know who have lost loved ones to COVID-19 or to street or highway violence. How can you care for some of them? A card in the mail, a message via social media, or even an old-fashioned phone call to let someone know you care or that you are praying for them can really help others get back on their feet. This world has made all of us caregivers. We just have to find it in our hearts to take the time to make a small difference to a few people at a time.
🙋Your Turn- Are there 2 people you can care for this week?