It is certainly not easy being a lone caregiver. On many a day I feel like hope is slipping. But when I say that I am a lone caregiver for my mother, it is not entirely true. There is a large community of people doing what I am doing and they are far more a lone caregiver than me.
When I say that I am a lone caregiver, I am speaking about me and my siblings and the roles each of us play. Because I am the only local family member who is able to consistently “take care of things” I say “I am a lone caregiver”. In other words, I am the only family member that is local and able to do the day-in-and-day-out grunt work. Not that my mother is “grunt work”, but wouldn’t one call medical paperwork (and other such tasks) exactly that?
Basically I manage my mother’s entire life, but I don’t do EVERYTHING. I have called on several professionals to help me with the day-in-and-day-out grunt work. My siblings are simply not able to be a part of this. Yet, my siblings each play an important role, they each bring something very important to the table. No one has “fled the scene”, so to speak.
Yet, most days I feel alone in this. I feel abandoned even though technically I am not. This loneliness is part of this journey. It just is what it is. I’ve talked to other lone caregivers, who also have wonderful siblings who are there not here. They tell me that this loneliness leads to days when hopelessness sets in. I get this. I’ve had my days when I can’t stop crying. So, when the loneliness comes, I give myself permission to feel it but I also order myself to not get sucked into its pit. Instead, I pull myself up by my bootstraps and choose to peer long and hard at each of my siblings, working to identify the gift each of them brings to the table. This is one way I consider Jesus (Hebrews 12:3) so that I do not grow weary and lose heart. Here is what I have discovered.
As I watch more closely, I see that each of my siblings has a foundational gift. This foundational gift is one each has had since childhood, and it is one that shines when Mom is by their side (or on Skype). I decided to name each gift, carrying the names around in my head over the last several months. Thus, in order of age (eldest to youngest), let me introduce you. The three oldest have names beginning with the letter “L”, the youngest with the letter “J”. Thus the initials. Yes, I have five siblings. Thus this post will be a tad longer than most. But I think you will enjoy meeting them. So please keep reading.
L#1 is my eldest sister. She contacted a nasty form of cancer and died by suicide in 2007. If she were here I would call her the Gospel Prayer. Why? I suppose because of her primary concern when our Dad was dying in 2005. I was driving to Oklahoma, trying to get there in time before he died, trying to get there in time so my younger sister didn’t have to be alone with him when he died. I failed. As I drove, I listened to my elder sister’s frantic voice on my cell, “Share the gospel with him Laura! Share the Gospel! Tell him about Jesus!” Again, I failed. Instead I rolled my eyes to the back of my head. I was really ticked off at L#1. But when the Gospel Prayer was dying two years later, somehow this memory ministered to me. L#1 died. But she hasn’t “fled the scene”. I think she is interceding for me now, as I do this gospel work. N.T. Wright taught me this in his book, Surprised By Hope.
Then there is L#2, my older brother. He is the Story Teller. He is the keeper and teller of stories. And my mother loves to listen. After my mother fell and broke her hip, I called the Story Teller and demanded that he come that night (I think I screamed, “Get your ass on the plane!”). He was teaching a university math class that afternoon. “I have to teach class this afternoon too,” I retorted. He kindly cancelled class and got on a plane, while I still taught mine as Mom was wheeled into surgery. As I drove to campus from the hospital, the operating room nurse called me to get one more “permission slip”, this one about her living will. Oy vey! That was hard. I had no “joy” to give Mom. So the Story Teller came and told stories to Mom, stories that delighted her during some very dark days. At one point, as he and I were trying to choose a rehab center, he started telling me a story. I got irritated and asked him not to. I had to concentrate on the administrative details. I had no time for a stupid story. We had decisions to make gosh darn it! The Story Teller obliged me. Just recently he came for mother’s birthday. He brought the present of great stories. I love that guy.
I’m L#3 (Laura). I’m the Manager of Details or the Mean One (see below). Meh. I’d rather be a Gospel Prayer or a Story Teller. I manage my mother’s entire life: her finances, her healthcare, her personal needs, her need for socialization, her _______________. Fill in the blank and I manage it. This might not seem fair. On the surface level, it kind of isn’t fair. Some families divvy up these tasks, but for now, this is what we do and it’s best (at least for now). Do I have days when I’m mad at the world for the certain weight that I carry? Yes. But no one deserves this madness I exude. So I fling it at the Lord and then I go to the garden to plant some seeds. He loves when I finally relent and just do that. He receives it all from me. He is the keeper of my madness. I read the Psalms. It shows me this is true.
Now, onto the J’s in our family.
J #1 is the eldest of the J’s. She is my first little sister and I call her the Optimist. On the day we moved my mother out of her home (oh my WORD what a horrible day) the Optimist saved the day. “Oh look Mom!” “Oh isn’t this lovely?!” My mother understandably sneered. “Let’s go look at that!” “Let’s go here!” “This is so much better than your other apartment.” “They cook your meals?! Wow Mom!” My mother finally relaxed. Actually, I should call J#1 the Bubbling Optimist,
who, by the way, is about to defend her dissertation and earn her doctorate! Now THAT takes optimism. I remember when we were little.
She was always following me around trying to get me to play with her, always laughing and squealing. Gosh that irritated me. Look at the picture to the right. Yep, that’s the Manager of Details (or better yet, the Mean One) and her little sister. Look at J#1’s smile. Look at my sneer. Clearly I am not a Bubbling Optimist.
Then there is J#2. Without a doubt she is the Fun One. Back when Mom was still in her home and J#2 was able to help, my mother would say, “J#2 is the fun one. You are the mean one.” I think she first said this after I took away her car keys. My mother was joking, for the most part anyway. “I say that with all respect Laura. J#2 is so silly and knows how to make me laugh. You know how to put your foot down and get things done for me.” She would say that as I was dispensing her meds and checking her bills and……… Oh whatever Mom. But, she is right, J#2 is the Fun One. She just knows how to play, laugh and have a good time. And I’m so very grateful for this.
Last but not least (and I hope that she knows this) there is J#3, the baby of the family. Dear Lord what a terrible title. What adult wants to be called the baby of the family?!?! Out of all of us, she is the most adult. If L#2 or J#1 or J#2 is reading this, please don’t let this offend you. But J#3 truly is more of an adult that any one of us. I call J#3 the Present Companion, but not because she is able to be physically present, but because she attends to another’s soul whether she is here or whether she is there. She is the daughter who gets our mother to talk deeply about how she really feels. Yes, J#3 is a licensed therapist but that is not WHY she is so good at being the Present Companion. It’s just WHO she is. I love that she uses music and dance to help my mother peer into her own soul. The Present Companion has been known to sing and dance with my mother via Skype. Thank the good Lord for that technology. On days when Mom is depressed and sad, the Present Companion can allow her to feel that but also invite her to find a bit of joy.
So there you have it. The three L’s and the three J’s are my mother’s amazing children.
The Gospel Prayer
The Story Teller
The Mean One or Manager of Details (I can’t decide)
The Bubbling Optimist
The Fun One
The Present Companion
Later, I will tell you about other wonderful family members (spouses, grandchildren, etc). Later, I will tell you about the professionals who also have come alongside my mom, the local heroes who continue to amaze me. But, for now, you’ll have to settle for this introduction.
As I eluded to earlier, I have a keen awareness that there are many who take care of their parent with Alzheimer’s and have no paid help. There is no sibling that can fly in at a moments notice. You have every right to sneer at me and say, “You are NOT a lone caregiver!” When I whine (and I will whine sometimes on this website) you have permission to consider me spoiled. In all honesty, I am a spoiled rotten brat. My mother does have resources. Yes, I have certainly had to learn how to find the resources, assess the resources and utilize the resources. And that has been DAMN HARD. But she still has resources.
I am highly aware of this disparity. And it pains me. I am almost embarrassed by it. But that would be giving into shame, which I try to avoid.
Those you who are doing this Alzheimer’s gig with little help need to be heard and listened to. I think of you every day. Every day I wonder if your hope is slipping. I have a friend who is an only child and has just moved both her parents into her home. BOTH of them are suffering from some dementia. She’s so courageous. I wonder about you, whose only financial resource is the pittance that your parent receives in social security and a medicaid system that is so hard to navigate. How in the hell do you make ends meet? You probably don’t. What about those of you who get up in the middle of the night for the 5th time to attend to your Dad whose memory causes him to wander? Are you trying to go to work the next day? For all of you, this needs to change. You should not be a truly lone caregiver.
Our country is heading towards a crisis when it comes to the care giving of those with Alzheimer’s. There are statistics that tell us some alarming trends. And one of those statistics is the shortened life span of those who are lone caregivers. I wish you could share some of your story here on this site. It might do you well to tell it. And, it deserves to be heard. But you are probably too tired. In fact you are so tired that I’m quite certain you aren’t even reading this. So who am I talking to right now? We need more people who will advocate for those with Alzheimer’s and those who care for those with Alzheimer’s. Neither have the energy to tell their story. It is a miracle that I am finding a way to tell mine and I have resources! A year ago I was in such grief that I could hardly speak.
But here’s the deal. Each caregiver’s story needs to be honored, including mine. Caregivers do better when they don’t judge or compare themselves to other caregivers. I’m stupidly guilty of comparing myself to and judging others. I have judged and compared myself to each of my siblings. THAT is just NOT helpful. THAT is NOT how to nurture hope.
Have I had to make judgments? Yes. This is a good thing to do. And quite honestly THE HARDEST thing I have had to do. And it is one (of several things) I do fairly consistently WITH most of my siblings over phone and Skype. So what is the difference between being judging and making a judgment. Maybe this will help:
Making Judgments Vs. Being Judging
“Mom needs in-home care.” vs. “No one cares about my Mom!”
“Mom needs more than what in-home care can provide.” vs. “In-home care stinks!”
“Mom would do best in assisted living.” vs. “You are throwing her in a nursing home to rot!”
“Due to Mom’s extroversion, she would do best living with a variety of people.” vs “You are putting her in assisted living out of sheer convenience.”
“Mom would do better with a geriatrician.” vs. “This doctor doesn’t know squat about the elderly.”
“My siblings have limitations and they also embody unique and valuable gifts.” vs. “My siblings aren’t giving what they should be giving.”
I have had to work hard to make solid judgments without being too judging. This has singularly been the most important task in this journey of caring for my mother. After she dies, I’d still like to be in relationship with my siblings. So, I have been peering hard at the gift they each bring. I truly believe that every human person is made in the image of God. Even if they choose to put their faith elsewhere, I still think they reflect the kind and benevolent God that I love.
Like me, they reflect God haphazardly, but they still reflect. So as I peer at my siblings, it is one way I can peer at a kind and benevolent God..as a way to consider Jesus, the author and perfecter of my faith (Hebrews 12). This nurtures hope. Thus, the names I’ve given the three L’s and J’s. They remind me of my Father who art in heaven.
So, in sum, being judgmental and engaging in comparison is dumb. And when I have done this to my siblings, they have been kind to me. While they can’t fully understand the weight that I carry, they are aware that the weight I carry is different than theirs. And you know what? The weight they each carry is different than mine. It has to be hard to be so far away. We all have our own version of guilt and shame that we are learning how to manage. I love them. I hope they know this.