The Truth About Caring for Ailing Family in Your 20’s

Green Burgundy Fall OutfitFor the last few days I’ve been down in Florida caring for my 90-year-old grandmother. As her oldest living relative (and the one with the most flexible job schedule), I’ve come down to help her transition back from rehab after her stroke in November and to see IF she can even still live home safely on her own with me 1,000 miles away.

It’s scary and draining in a way only people who’ve been through it understand.

While I know a small number of friends who have lost close family in their 20’s, I only know of one other 20-something whose ever had to be the sole caretaker for an ailing family member.

Ever.

Are there more of you out there?

Are you suffering too?

There’s nothing glamorous or energizing about caring for ailing family members. Believe me. I cared for my father for months before he died at 58 (I was 22) — much of it completely on my own. And while you have plenty of energy in your 20’s, sometimes I wonder if it’s the hardest decade to deal with ailing family. Think about it. You’re young, just starting out your adult life and crafting out your future. You have little money or resources to use to solve problems. And you have no interest in clipping your career and spending months caring for an elder day-in and day-out often without a free night ever.

Especially when your friends constantly text you photos of how much fun they’re having at the bar…

So in the hopeful event that this post can help someone else struggling through this too, I’m going to share a little more about my past. I’ve never been one to open up very much about this here but as I’m going through all of this all over again literally for the second time in less than a decade (I’m still a few months shy of 30), I’m struggling to NOT write about it here. Because it’s all I’m really thinking about and if you know anything about me, you know I can’t ever keep my thoughts quiet if I’m this engrossed in them.

So here’s it is…

My father became ill 2 months before my college graduation when I was 21 years old —  we were literally shooting at our Chicago photo studio the day he had his heart attack. While that time of my life should have been filled with hope and excitement (I was offered my dream job only to have to turn it down to care for him), the reality quickly became horrific for me. Most of my college friends were partying and working hard on their final projects — their biggest cares were finding a post-college job and getting health insurance.

My last weeks of college, on the other hand, are a complete blur. Somehow I managed to write a 60-page paper on Gandhian Economics (seriously!) and was awarded the highest honors in my major as well as Magna Cum Laude and high sorority honors. And believe me, none of the was the result of pity — I earned it ALL. But it didn’t matter. None of it mattered. I remember feeling empty and alone when I received my diploma — staring around eerily as my friends celebrated and took dozens of photos. All I remember was being glad to have a day out in the sunshine and not in the ICU wing of the hospital.

And the worst of it wasn’t just the circumstance as it related to me — the worst was how uncomfortable and distant many of my college friends became. I mean, who can blame them? No one wants to talk about stroke recovery and quadruple bypasses the week of their college graduation. Not even me. But it was my reality. It was my very real reality.

After graduation I suffered one of the loneliest periods of my life. I had given up my dream job, given up my hopes for the future, shut down my father and I’s photography business, and basically panicked every time the hospital called me. Because it was NEVER with good news.

The anxiety, terror, and isolation I felt were very real for me.

There have been a few occasions when the memories of all the emotional turmoil still give me panic attacks, even now. They’re less frequent but still there. And probably always will be. Because losing family members in your 20’s — especially family members you loved dearly (and co-owned successful businesses with) — is seriously traumatic.

Suddenly you aren’t the kid anymore. Suddenly your family needs you to be the one and only adult.

But somehow I made it through. I don’t really remember how but I did. Months of that period of my life were a blur if only from the sheer exhaustion of graduating, finding a job, and somehow trying to manage my father’s care all at the same time. I operated on 4 or less hours of sleep for months and to this day am still dealing with regular bouts of insomnia that started that summer after graduation.

Talk about adulting hard after college.

Man, did I learn a lot about the inner strength of the human spirit though. I always like to tell people you don’t have any clue what your own strength is until you’re tested. Many people have said to me over the years “I could never have done that” but the truth is most of them could. We do what we have to when our loved ones need us. It’s what differentiates family from relatives.

A few months after graduation, during a period I now refer to as my “early life crisis”, I adopted a sweet little pug named Apollo. By then my father was transferred to various rehab facilities all around Chicago learning to breathe without the aid of machines, learning to talk and eat again, and eventually learning to walk. So in a crazy impulsive moment, I took home a small runt pug who just happened to have made me smile bigger than I had in months the moment I saw him. Hey, it’s impossible not to be happy around a pug — they’re the goof balls of the animal kingdom.

But I quickly learned that the only way I could bring Apollo with me on my visits to my father was to get him certified as a therapy dog.

So I did.

And that’s when things began to feel… I won’t say happy, but less shitty.

Apollo has an incredible personality for therapy work. He LOVES attention, loves to cuddle, loves pets, and loves everyone he meets. All with a willingness to listen and learn his proper commands (usually…). And I found bringing him to the rehabilitation facilities filled me with a sense of accomplishment I’d never felt before in my life.

I’ll never forget one therapy session in particular. Apollo was very young and still quite new to his vocation but he’d quickly become INCREDIBLY popular at my father’s rehab facility. One day one of the physical therapists came into his room and asked if I’d come and sit with one of her patients. A blind woman who’d just had a severe stroke and who was just giving up on ever being able to move again. I came into the therapy room to see her sobbing over her stationary cycle, completely devoid of motivation.

Well apparently this woman had two pugs who had died just before her stroke — a huge component to her lack of motivation (that and the fact that she was well into her 70’s and had just gone blind). So quietly I went up to her and introduced myself, saying “I have someone with me who would like to meet you”. I placed her hand on Apollo’s face and within seconds she cried out “is this a pug???”. She suddenly started sobbing tears of joy. I’m pretty sure I started sobbing too.

Once you’re a pug person, you’re always a pug person. Nothing will make you happier than those derpy, wrinkly, snorters.

The therapist later told me she’d never seen her work so hard on that bike after we left. Just spending a little time with Apollo made all the difference (it still does for me!). And we went to visit her every other day until my father was transferred to another rehab facility about 45 minutes away. I always regretted not taking the time to visit with her after that but my plate was so full then, I just couldn’t.

Caring for someone really is a full-time job. Most people don’t understand what that means — especially people in their 20’s. When my father eventually came home after rehab for five months (but before we discovered his cancer), things became even harder. I worked a full-time job in finance to pay the bills, leaving my Dad’s house in the suburbs by 5:45 every morning, only to return just after 6 pm at night. My alarm was set to 4:15 every morning — absolutely no exaggeration whatsoever. It took me well over an hour to wake my father, bathe him, get him safely down the stairs, administer his medications, checked his blood sugar levels, and get him some breakfast to eat. Heaven knows some of the terrible, disheveled outfits I showed up to work in…

In a few short months my life had completely changed. College had ended. My dream career was gone. And I was left living in the town I had sworn to myself I wouldn’t live in.

I suddenly found myself buying adult diapers, elevated toilet seats, and continually returning to the Walgreens pharmacy every other night to get more blood sugar needles (the law only allows you a 48 hour supply, even for people who could genuinely use a weeks supply at a time like my father).

I definitely sobbed more than once at that Walgreens pharmacy, begging the poor ladies behind the counter to just give me another day or two of the needles so I could have an extra night or two off from coming in there. To the point where one of them actually started crying with me because she wanted so badly to help but just couldn’t.

To this day I’m still too embarrassed to walk into that Walgreens. Though I look VASTLY different now than I did then (I’ve lost a decent amount of weight and dress a LOT differently) I still can’t step foot in there. Cowardly, I know. But these memories run deep for me and the shame and embarrassment still hasn’t waned. Not even seven years later.

There’s much about the time I took care of my father that I’m not proud of. And no doubt, without context, strangers must have been judging me right and left as that “crazy chick”.

I felt so alone. No one I knew understood what I was going through — not even my mother since both of her parents were still alive and healthy at the time. Since my parents were divorced she couldn’t have helped much regardless, but I found not having anyone to turn to who understood to be the worst part of any of it.

They don’t even have support groups for people my age dealing with ailing parents. At all. Because there’s just no demand. Or need.

By the time my father’s cancer diagnosis came a few months after his return home, I felt pretty dead inside. I remember not even crying when the oncologist sat me down and began to explain that he had no chance of survival. That the clock was ticking.

I just nodded and drove home in a fog. With hardly any feelings left to feel.

A wrung out sponge doesn’t even begin to describe it.

By the time my father passed away a few months later, I didn’t know what I felt. I began to wonder if I could feel. The day he died my sister and I laid in his bed with him, holding his hand and sobbing until his death rattles stopped and the hospice nurse declared him dead. I felt it but at the same time I didn’t. I cried because it was so upsetting to watch and yet for weeks after it didn’t sink in.

My Dad ultimately died in a confused fog unaware of what was happening — which was probably for the best. But his child-like demeanor those last few months of his life only made it worse. There’s really nothing like the humbling act of caring for someone who once cared for you so directly. Nothing like putting diapers on someone who once put diapers on you. Nothing like the moment when you realize you’re the parent and they are the child. Nothing like it in the world.

And now, here I am, just a few short years later caring for my father’s mother because he isn’t here and there’s really no one else.

Some days I feel like I’ve really got things under control — hell, I’ve DONE this before. I can at least approach this from an experienced perspective this time.

But it doesn’t stop me from wishing it wasn’t me. It doesn’t stop my heart from swelling with pain (and occasional jealousy) when I see just how lucky so many of my peers are. How easy and (occasionally) superficial their live seem.

And it’s not like I believe my problems are the worst ever — in many ways I’m very lucky to have the time and resources to care for her. And the experience. But I’d be lying if I didn’t ask all the time “why me?”. Going through this a second time is hard but in a very different way. It’s especially hard because it involves being 1,000 miles away from my husband, two pups, and all my close friends. I miss home desperately most days. I don’t care that it’s 0 degrees in Chicago right now. It’s home. It’s where I belong. But I know too that I’ll live with regret and shame for the rest of my life if I don’t rise to this challenge.

My grandmother has always been a strong independent woman. She watched her only son die at 58 too, just like I did. She and I bonded very closely in the years after his death if only because we would tell stories about him for hours. Because he really was that amazing of a person. And the void he left behind was devastating to the both of us (and certainly to my sister as well).

So right now I’m taking this one day at a time. She needs me and I can’t abandon her. However strong the temptation to book a flight home is. However strong my desire to return to normal is. However strong my desire to grow my own family so I can, for once in well over two decades, add a member to my blood family instead of subtract one.

Once my grandmother is gone I’ll be left with only 2 direct blood relatives. Which is insane for me to think about. It’s insane when I think about all the people from my childhood who made me who I am today who are now gone. And I KNOW that there are far worse circumstances to be in. Hell, I lived in India in college working in slum areas on economic development projects — I’ve seen poverty on a scale most Americans can’t even imagine. I remind myself each and every day that I’m lucky to have the resources, friends, and support that I do.

So for those of you 20-somethings caring for ailing family members alone, this post is for you.

The truth is it never gets easier.

It never stops hurting.

And you’ll probably wish more than you care to admit that it had happened to someone else.

But if my experience has taught me anything, it’s that you’ll find the strength you need when the time comes. The truth about this all is that life is struggle and pain — we’re so scared of pain in America, aren’t we? And yet most of life IS pain.

The truth is that often, even for those of us with extra pretty blogs and great shoe collections, life isn’t perfect. You can’t choose the trials life throws at you. All you can do is choose to face them head on or to run.

And, in my limited experience, I’ve found it absolutely necessary to rise to the occasion. To ignore that voice that asks “why me?” and to just get to work. Especially when someone you love really needs you.

I hope that if nothing else, today’s post will encourage you to reach out to a loved one and tell them just how much they mean to you.

Because our time on Earth is short. Often too short. And it never hurts to ever say to a loved one “I love you”.

And for the few of you who are going through this now too — especially those of you in your 20’s — know that you are not alone. Know that you’ll survive these ordeals with more strength than you ever thought possible. Know that losing family members ultimately forces those of us left behind to choose between life and death. And if there’s one thing you can do to honor their memory more than anything, it’s to choose life. To live life as fully as possible if only because they can’t.

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  • Oh how I feel for you, this burden of responsibility and the grief and sadness of losing loved ones when you’re only in your 20s and should be out there enjoying life and all its beauty. You’re obviously an amazingly resilient young woman. I love the way you turned Apollo into a therapy dog! It’s very sad there are no therapy groups of people your own age that you can talk to. Hopefully this post will connect you with people in the same boat. We know they are out there, but under the radar.

  • CJAllDressedUp

    My heart hurts for you in this situation, yet I know how every experience we have in life shapes us to the be the person we are. Absolutely lovely and heart-felt writing, this post makes me proud to be a blogger when I have others like you truly reaching out to help others and laying everything on the table in hopes that it touches someone, and lifts them up in a difficult time.

  • Rachel Whelan

    Reading this is hard, Ashley, but I have no doubt your openness about your struggles can help someone else.
    My husband and I are only children. Our parents were much older when they had both of us. Someday in the near future, we’ll be in a similar situation, and it’s terrifying.
    I love the story about Apollo. What a special pup to bring such joy to those he has met.
    Keep fighting, keep shining as brightly as you do. You’re handling adversity with grace.