Is it better to be tied to a tree than squashed on the freeway? Caregiver angst

boytree

Baby Walter — that’s what everyone called him since his dad was also named Walter and no one much liked the sound of “junior” — spent most of his single-digit years tethered to one heavy object or another.

His older sister Tina was one of my closest friends. We grew up in the 1970s and 1980s at different ends of the same rural road in Ohio, an unlined swath of blacktop connecting old farmhouses to the fields of green soybeans and sweet corn planted in between.

Baby Walter and Tina lived in the last house on the right before our road crossed over Interstate 71, the busy freeway connecting Cleveland to Columbus to Cincinnati.

And Tina’s mom — not overly protective of Tina or her older brother — worried constantly that Baby Walter would run down the slope of their side yard and onto I-71 where he would almost certainly be smashed by a semi-truck hauling automobiles or steel or some other heavy thing manufactured in Cleveland and destined for points south unknown.

Today, a doctor would likely diagnose Baby Walter with ADD and scribble out a prescription for a medication to calm him. But at that time, our patch of Ohio was stuck somewhere between “Hee Haw” and “Jesus Christ Superstar.”

We rarely questioned our fate and, if we did, we asked God via Jesus to help us, not some stranger in a lab coat. On rare occasions — like those Sundays when our preacher wrapped up his sermon in time to catch Browns kickoff — we knew God kicked in. But mostly, we fended for ourselves and worked with what we had.

That meant it was Tina’s job — and my job, too, when I was at her house — to keep Baby Walter safe by following instructions from Tina’s mom:

Tie Baby Walter to his bed for his nap.

Tie Baby Walter to the barn ladder while you’re in the loft so he doesn’t fall.

Tie Baby Walter to the tree so you all can play outside.

I know it sounds wretched now and certainly there were many what-ifs — like what if the house caught fire and Baby Walter was trapped, unable to leave his bed. But nothing bad ever happened.

Baby Walter would inevitably wrap himself around the tree like a tether ball to a pole, but it was fun — for him and for us — to unwind him until he wrapped himself around again.

He was happy, well-loved and well-fed and seemed to grow accustomed to the ritual, often waiting for someone to tie him, as if he, too, didn’t trust himself not to run into I-71’s siren song.

I’ve been thinking about Baby Walter — who must be 40 by now — all day.

This morning, before sunrise, before anyone else in our house was awake, when the temperature hovered at -16 degrees, my 83-year-old mother crept outside with her walker — wearing only a t-shirt, tennis shoes and a coat — and smoked a cigarette.

She made it back to the couch safely and we only discovered her crime when my father, who has cancer, went out for his first cigarette of the day and found an overturned coffee cup and a half pack of red Pall Malls scattered on the snow.

It frightened me, but it enraged me just as much.

How long does it take a 104-pound woman to freeze to death if she falls in the snow when its 16-below? Or how about our dog or two cats that always hover around the front door?

My mother has a combination of Alzheimer’s and vascular dementia (caused by smoking). She also has spinal stenosis and scoliosis that leaves her bent at a 50-degree angle, unable to straighten, unsteady on her feet and challenged to hobble on a walker more than a dozen feet without sitting down.

Her physical frailty has in some ways made her mental frailty easier to deal with. I can almost always catch her before she runs amok. But it’s done nothing to temper her bullheadedness or nicotine craving (yes, I’ve tried and failed to convert her to patches and gum and e-cigarettes).

From the first week mom and dad moved in, there has been a single rule that has dominated our lives: Mom must never go outside — or even open the door — unless someone is at her side.

Her dementia has stolen much of her left brain, always her weakest side. She doesn’t know $5,000 from $5. But even now she knows the door rule and knowingly broke it for a cigarette.

Nursing home was my first thought. I’m nearing the end of my caregiver rope.

Standing by my dad as he negotiates cancer — an oncologist today decided to end his radiation a week early so he can go on chemo because the tumors in his lungs are leaving him short of breath — is exhausting. And it’s sad.

Lassoing my mother’s wants and needs at the same time is nearly impossible.

But here’s the thing: My dad’s final chapter is closing.

And even though my mom isn’t the woman she was — and both OG mom and dementia mom make dad bats — I know he’d rather have her close as he fades away.

So I’ve got myself a Baby Walter dilemma: How do you prevent someone you love from running into traffic and getting killed?

I have a tree, but I’m unwilling to use a tether.

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122 thoughts on “Is it better to be tied to a tree than squashed on the freeway? Caregiver angst

  1. Ah, Amanda, again I see similarities. Within the past nine months my mom has developed severe scoliosis. She never had a problem with it, but she seems to be spiraling into the ground. My brother, a sister and little old me also have scoliosis. My mom spent countless hours driving us to Milwaukee for appointments (we lived in Illinois at the time) and getting fitted for back braces. That it happened to her, and at this point in her life, just seems mean spirited. She leans to the left, and it causes pain. It helps for her to use the walker (no pain), but luckily for us she does not try to get away. I can tell you that is not unusual given her situation. I also completely understand why you want/need her around for your dad. I’m thinking you guys need a trip to Florida.

    Liked by 2 people

    • Heck, we need a MOVE to Florida 😉
      I should probably be checked for scoliosis. My grandma (mom’s mom) had it, but it curved her forward. My mom, her poor back, it looks more like a misshapen “S”, the the spine has collapsed on itself like an accordion. Her only surviving sibling, a brother, who is about 89, has it, too. I’ve read about adult onset. Totally unfair. But hey, I guess it’s good to see up close and personal. Climb that mountain today while you feel healthy. At least that’s what I’m telling myself. Once you have scoliosis — like you and your siblings — do you always have it or can it be fixed permanently?

      Liked by 2 people

  2. You always have it. I wore a brace all during high school. I have two curves and got them down to 18 and 19 percent. If my spine was straight I’d be a 7 footer. Not. They can also put rods in your spin to stop it, but that’s usually that’s for youngsters.

    Liked by 1 person

  3. When my great grandmother’s Alzheimer’s got really bad they had to put locks on the very top of doors leading to the outside so she couldn’t reach them and let herself out. She was an early riser by nature, 4 am, and would get up in the middle of winter when it was freezing cold and snow on the ground, put on her rubber garden shoes and walk to their neighbors house. While it did limit her independence it was the only way to ensure that she didn’t go outside and freeze to death, while still being able to keep her in her home as long as possible. My great grandfather took care of her as long as he possibly could in their own home, but they definitely had to make some adjustments to how much freedom she had.

    Liked by 6 people

  4. You can put alarms in doorways that helps, then if they go out someone will hear it. You can sedate her at night since it seems the worst of dementia symptoms usually occur at night. You’re handling it well, keep on laughing.

    Liked by 2 people

      • You can use restraints, if it comes down to a matter of keeping her safe at night. She won’t like it much though. There are medically approved versions like they use in hospitals. It would be a last choice but, sometimes there is no choice.

        Liked by 2 people

      • Everything is fluid (part of what is maddening), I’ve learned in this…so we keep adjusting and re-adjusting depending on situation. What works one day, fails the next. Best plan is to have many options available at any one time…

        Liked by 1 person

  5. Alzheimers is particularly troubling because the disease makes it impossible for you to recognize the person your mother is becoming. With the added complexity of your dad’s cancer … My heart goes out to you. I just try to remind myself that sometimes there is more courage in giving up and letting go than there is in fighting. A controversial view, I know … but being kind to yourself as the caregiver and recognizing your own limits is really vital to one’s own well being. Just my two cents !

    Liked by 2 people

    • Hi jmpod. That’s a lesson I’m trying to learn — surrender. It’s OK to surrender. My husband has been nudging me toward this on the little things. When mom refuses to eat anything but cheesecake, it’s OK (but I did sneak protein powder in it). When dad won’t wear a heavy winter coat, recognize he’s a grown up who can make his own choices. Sounds easier than it is…but it’s a lesson, and if I can learn it, that will likely serve me the rest of my life.

      Liked by 2 people

    • This only lasted until the kid was old enough to figure out how to untie himself..so a couple of years. Was it the right thing, the smart thing? I don’t know. I can only view it through my eyes as a child…Baby Walter, I’m told, grew up to be a successful man with a family of his own…unclear if he ties any of his babies to anything…

      Liked by 3 people

  6. I have no solution, but I would just like to say (as this is the first time I’ve come across your blog) that I think what you’re doing – taking in your parents and caring for them – is amazing!!! I hope that whatever you decide you don’t feel guilty, because you’re doing a good thing and you have more people to consider than just you and her!

    Liked by 2 people

  7. Within the last 6 months, there have been several different seniors with Alzheimer’s who each wandered off into the winter snow within the city. Then they died.

    This is in Vancouver BC and Calgary, Alberta.

    Liked by 1 person

    • This happened in Cleveland this winter, too — one from a care facility in the eastern suburbs and at least one other from an apartment complex. But there could be so many more. Hardly a week passes, it seems, without police alerting the public to a missing older person with dementia.

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  8. You are brave. Expand your patience a little bit more and withdraw some time from some hidden corner. You will always be proud of yourself for taking care of your parents when they needed you.

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    • Not so brave. Just doing what most others would — trying to do the right thing. Goal, of course, is to have no regrets. But that’s impossible. I have tiny regrets every day. I lick my wounds of sadness, anger, frustration, fear in this blog and that, I’ve found, helps…mostly just to clear my own mind.

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  9. Thank you for your writing, but i am having a hard time reading it. First, my youngest sister is dealing with caring for our mother who is starting to show small signs of dementia and is in denial for multiple medical conditions (kidney failure, congestive heart failure, hypertension). Secondly (and more frightening) is the potential for my following down a similar path…
    Please continue to share your (our…) journey. Some of us (at least) are listening, and waving encouragement as you pass by.
    Phred

    Liked by 2 people

    • Hi Phred, Know that my mom’s earliest signs of dementia were amplified by medication she shouldn’t have been taking. Once we peeled those away…she improved before slowly sinking again. So make sure you feel confident in your family’s doctor. So important. Best to you and yours. Amanda

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  10. I’m in California. I work for In Home Support Services (IHSS). It’s a County program that allows the Aged, Disabled, and over 65 get in home help. Maybe your County has this? It could give you a break and also bring in extra cash if you enroll as a provider. I have advised families caring for people with Dementia to change the locks. It stops them from going out for a while. On a good day they might figure it out, but if you put the lock up high or down low, it works great.

    Liked by 1 person

    • Thanks rockerta1. We don’t have a program like that available…however, I am seeking help from the VA since my father was active duty during Korean War. For now, we’re relying on alarms on the door. We are still Medicare quickly approaching Medicaid..and then there may be some help. Wish lawmakers would tackle this important…

      Liked by 1 person

  11. It is terrible when you know that it is coming yet you hope that you will never be forced to make that kind of a decision. Your parents becoming your children is a nightmare. Not even totem pole would help to keep them safe, because there is no safety in their old body. This is probably the biggest difference from the baby Walter. I wish you good luck with them, despite the outcome. You are exceptionally strong.

    Liked by 1 person

    • I didn’t even know they made these…I wonder if they would work on our doors…tx for the idea. I think there are hundreds of useful items out there that aren’t well marketed–or that haven’t been invented…that could help caregivers in all sorts of ways. Tx.

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  12. Amanda your blog certainly provokes thought. I agree with the previous commenter that stuff designed for child safety like that harness (which I apparently wore for years) wold be the best way to go. Funny how we start as children and go back there when we grow old. Good luck with your caregiving. x

    Liked by 1 person

  13. What a well written post – You raise some really interesting and difficult points – dementia is so hard because the person that’s left isn’t always the person that used to be there, and the worry of your mum putting herself in danger can’t be easy. I guess there’s the old ‘freedom from, freedom to’ debate going on here. I hope you find the answer.

    Liked by 1 person

    • Thanks, Ruth. I don’t know if there is a perfect answer…it’s a balance, I guess. That’s one of the hardest parts about caregiving for your parents — learning flexibility. One day’s perfect strategy is a big fail the next…

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  14. Thank you for these true stories. We have our own Baby Walter, but have never tied her. She’s an adult now and in danger from police, sheriff, traffic, etc. In California, it takes a mountain to prove someone needs care and protection. This is why our jails and prisons keep being jammed with “Baby Walters.”

    Liked by 1 person

    • I’m so sorry to hear that. As a newspaper reporter, I saw what you’re talking about too often. And even if the person was judged to need protection, there were so few places, always a waiting list. Very difficult. I can’t imagine.

      Liked by 1 person

      • California laws for the mental ill do not allow for children or adults to be locked in (except in under a 5150 protection lasting 24 to 48 hours or jail or prison. We must send loved ones out of state for schooling or care, any protective circle seems to cruel for the legal experts, but jail seems just fine!

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  15. Care taking a senior takes a lot of strength and patience. I had my mother stay with me recently as she recovers from a stroke. She needs constant care and attention so I cleared my schedule. I just barely survived with my sanity intake and it was just 1 week! You’re amazing (the writing probably helps)!

    Liked by 1 person

    • The writing helps! Here’s the thing: If your mom would stay longer, you’d eventually get into a groove (or a rut, depending on how you look at it). And the groove is comfortable until something changes and it’s not..then you look for the next groove. But to be sure, caregiving isn’t for sissies!

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  16. Growing up in the Detroit suburb of Allen Park, my mom’s tether was a set of ‘Jimmy locks’, which were hooks placed high on the screen door. Even though I was not ADD, I had a sense of adventure that carries through to this day. Once the Jimmy locks ceased to be effective, I took on Detroit with my bicycle. At age 13, my buddy and I met after breakfast and set out for the Detroit River. Next thing you know, we had ridden over the Ambassador Bridge into Canada…and we grabbed a burger at the McDonalds in Windsor. We were home for dinner, and our little secret remained intact for many years.

    As a caregiver, your soul is guided by angels, and you will someday be rewarded with wings of your own. Enjoy every good moment you can glean from this period of your life. My heart goes out to you, Amanda.

    Jim

    Liked by 1 person

  17. My father died in an accident when he was the same age I am now. I never got to know him as an adult because I was still a teenager when he died. He would have been a mean, stubborn old man if he had lived longer. I know this because we so rarely change our stripes, and that’s how he started out.

    My mother died not quite 2 years ago of lung cancer and heart failure, both from smoking. She had quit 10 years earlier. I still miss her terribly. She was one of my closest friends. That said, I’m sort of grateful we never had to do much oldster care with her. She was small and wracked with pain, but didn’t have a long fight. It would have driven everyone even crazier.

    I really admire what you’re doing at how superbly you’re facing it. Even if you wind up tying her up.

    Liked by 1 person

    • My father-in-law had a heart attack…went home…and had a second heart attack that killed him two weeks later. Looking back, that’s not such a bad way to go. He had a wake-up call…and chance to sort of get his house in order…and then he left. Suffering long and hard serves no one. I see no purpose. It’s maddening. My mom (who sounds a bit like your dad) warned me years ago she would be a witch (only with a rhyming word). I agree with you that people don’t change. Sigh. Still, I know I — like you — will miss them when they are gone : )

      Liked by 1 person

      • This is a very difficult journey you’re on, but rewarding in its own strange way. Well meaning strangers will give you unsolicited advice. I just want to wish you well and nod sympathetically.

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  18. Wow, your hands are full. I know all about caregiving.
    It’s really hard, sad, frustrating…tiring, it changes your perspective
    about aging and death. My dad died years ago, he had cancer. My mom
    is 74. She is doing ok. Once a week I visit her. She lives with my brother. Her apartment is 5 min. away. I have three aunts that are
    80 -90 years old. I take them to the store to get groceries and whatever they need. My heart goes out to you.

    Liked by 1 person

    • I just read a story on NBC news — rooted in celebrities Kasey Kasem and Glen Campbell — about how families are often torn about over money and caregiving…so, there is a definite perk to being an only child — no second-guessing. But you’re right..hands are full. None of this is easy. Sounds like your family has its hands full, too. Kind of you to help your aunts, too. Getting old is rough stuff.

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  19. Reblogged this on PNL Madrid and commented:
    Una gran historia que nos debería hacer reflexionar sobre como cuidamos a nuestros niños, a nuestros mayores y sobre como nos gustaría que nos cuiden a nuestros hijos cuando les llegue la hora de cuidarnos…

    Liked by 1 person

  20. Our sweet Dot passed away in 2011 after 12 years of fighting Alzhiemer’s. They kind of become like toddlers again as they lose thier memory. The best book I
    read was THE 36 HOUR DAY. We have to keep them safe, like Baby Walter. Bells on the door – a sliding bolt – 2 or 3 dead bolts but only lock 1 or 2 at a time – an alarm system – locking screen door. I feel your frustration and admire your courage in caring for both in their declining years. We had to take away dear Bill’s car keys after Dot passed away and needed 24 care the last year of his life. Even with help, I would catch him trying to drive the riding mower (legzlly blind) or spray a nests of wasps in his bell. Bless their hearts, losing freedoms is tough. Take care of yourself and hang in there. God bless!

    Liked by 1 person

  21. Sounds tough… I can’t even begin to imagine how I would handle what you’re dealing with. But in my own life experiences I’ve learned that as long as we do our best God will do the rest – – Just trust HIM!

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