2,259 Days and Counting

2,259 Days and Counting

Last night, I was angry because it was late and because I was tired. I vented on my personal Facebook page by sharing the following post: 

"OUCH! This may hurt to read, and chances are it will disappear once I really think about it being posted, but for this moment, it stays. I have been searching for means of support for non-traditional caregiving roles in our area. There is simply not enough information available."

As a caregiver mom, some things are difficult to share. They are not for conversations that take place in the local grocery store aisle. They are not for the rare night out enjoyed with a friend. They are not things you discuss over the phone with your parents who are several hours away. These burdens often aren’t shared, and at least for me, when I do discuss them, I feel exposed. I really want to be understood.

So I share these things a little at a time.  Sometimes with a cracking voice that whispers, "I am struggling.” And at other times the frustration pours out by yelling over the simplest thing gone wrong. Recently it was when Taylor decided to use the bathroom I was in the middle of cleaning. I lost my cool with him because he needed to pee. Not my best caregiver moment.

Caregiving is hard. I find myself wanting to scream when people ask, "Don't they have services for that?” or "Can't you get so and so to help you?"

Please understand that we are grateful for the things that are working. However, we are also exhausted from running on the treadmill of parenting an adult child with special needs with minimal outside support.

I feel furious. Actually, I am furious. The lack of support for adults with brain injury (in our area) is ridiculous. The second Taylor attempted to return to work he lost all services associated with his injury. Quite frankly they were poorly executed services at best. So while the loss stung, it didn’t leave a gaping wound where something wonderful had been. The hole was already there.

There should have been more. There should have been programs worth fighting for. But there never was. So I didn’t fight. How heartbreaking.

When you have someone who cannot be left alone, not even for a quick run to the store...someone with endless needs for emotional and physical support, someone who requires far more care than people either want to admit or realize; it is wearisome. Here’s the kicker...when a person suddenly becomes disabled as an adult; you have no network in place. There isn’t a built-in support system. You have only a vague idea of what it is you are supposed to be doing to make sure things run smoothly. This can feel defeating.

At times it feels like you are left with criticism, rejection, misunderstanding, isolation, and unwelcome judgments. When you look around, it appears as if others are doing the whole caregiving thing better. More times than not, they are struggling, too.

At the beginning of our journey, the following phrase was shared countless times with us, "This is not a sprint, it is a marathon." I even purchased a bracelet as a reminder of this truth. I wanted to keep running. Now I question the wording. No marathon lasts for this long! A new phrase is needed. Marathons don’t take place over thousands of days. At my last count, we were at 2,259.”

I deleted the post within twenty minutes. I wasn’t ready for my friends across the blue screen of Facebook to read my frustration. It was one-thirty in the morning. In the twenty minutes the post was up (in the middle of the night) I heard from four caregivers.

The first wrote, “Everywhere I turn it feels like rejection.” Another expressed, “No one knows how hard this is.” A dear caregiver in Canada thanked me for my courage in speaking out.

So I sorted things out in my head and heart first. I did some editing not only of my words but also my emotions.

For those who love a caregiver, I want to ask you to remember the lyrics, “What would you do if I sang out of tune, would you stand up and walk out on me?” As a caregiver mom, I am going to sing out of tune. It may come in the form of extreme irritability. I may cry at the drop of a hat. I may not respond the way I used to, or the way I want to. Or I might seem indifferent, hypersensitive, edgy—it depends on the day. I hope you won’t walk out on me. Because I do indeed “get by with a little help from my friends.”

For the other caregivers reading this…the ones who go to the emergency room at 10:30 p.m., just after putting on pajamas and getting settled in for the night, and then stay for the long haul. For the ones who live out moments no one else imagines, and the ones who observe the pain, the frustration, the giving up, the giving in, and then the fighting back…yes, you. I see you. And I honor you. I hope you take this moment to honor yourself. I hope you feel through these words of a simple blog aimed at telling the truth…that it is okay to be angry. It is okay to fall apart. It is okay to retreat. To drawn inward. To do what works for you and yours.

However, after you fall apart, I hope you will allow yourself the joy of coming back together. I hope you will somehow, some way share your truth, instead of letting it fester. I hope you will forgive yourself and others for the times you felt rejected and defeated. I hope you will reach out. I hope you will look ahead. And I hope you know beyond the shadow of any doubt, that you are amazing, right where you are.

Comments (16)

Are you near the Philadephia, Lancaster or Houston area? there are awesome free conferences in those cities that provides support, direction, rehabilitation options and hope for survivors and caregivers. Also join your Brain Injury Association in your city they are a wealth of support as well.

My 25-year-old son Taylor and I are 2,511days in. The giant lump in my throat from reading your words lingers. Your words resonate with me, and I thank you for sharing. For Taylor and I, much of our daily lives will remain secret. So many personal things that I would/could never write about, in our long, painstaking journey to “optimal outcome” which is all we can push for, and a maddening moving target. Sharing our experiences would/could touch people - reassuring them they are not alone. And they are not going crazy, they’re just tired. But to tell our story, I have decided to do it third-person, and change the names. My powerful, intelligent, hilarious son, is now *also* a vulnerable adult. And blind. We as caregiving moms are lionesses protecting and nurturing. And as much as I’m bursting at the seams to share thoughts, triumphs and disappointments, I struggle with how to do that. So many things, amazing things, I would/could never share.

Caregiver isolation and distress is all too common but never spoken. My daughter's severe TBI occurred on 11/27/01 at the age of 3. It has been 17 years and the isolation for bot of us is at its worst. There arent many transitional programs in our area which is close to DC. Most of my friends from her childhood have re-entered the workforce, travelling, and talking about their retirement plans. Our retirement, if it ever happens, is plans for 3 not 2. I live terrified that if anything happens to my husband how will our family survive financially. No one understands the anger and sadness that is all so consuming.

Thankyou for your honest-spoken words, Nicole - words of frustration, yet words from love (what a balancing act!). My husband had his first TBI at 17, 1972, fell asleep at the wheel (his brother's graduation party after 18 hours of farming, no sleep) 3 months in a coma, pronounced brain dead, family wouldn't Pull the Plug, and he "overcame". (Lol.) Fast forward 9/2017, stopped in traffic, rear-ended at 50 mph (3rd TBI, a farming accident in-between). This one was the Deal Breaker. And yes, like you, we have so little available to us in rural Vermont. Relate to EVerythng you say, and SO appreciate your insight and all your readers contribute to this (God bless them & you). As the only caregiver I sincerely struggle. I am just so tired. I micromanage EVerythng but it's still never enough. I would always tell ANYone, when I met my husband 12 years ago, that he was the kindest person I have ever, ever met - and not just to the ones that mattered, but to anyone in this world - that was his heart. But things seem to have "crept" in the way of that sweet person, new anger & frustration issues never evidenced before. I find this part so hard!, Lately i am thinking i dont even know him anymore. So, so sad. Tonight I had my head ripped off for no real good reason, ughh - and now he's "sleeping it off" (yes, I understand he feels badly over his New Behavior), but I'm feeling angry, upset, confused, ready to bail (truth: never. Just a fantasy, lol!). So every day is New, every day is a different struggle, nothing is The Same anymore. And I feel just so worn-out & useless trying to keep Life as we've known it together. You are SO on my heart, as well as your readers who've posted here. Just praying for strength for all of us to get through another day, may it be a better one. Again, thank you for sharing your insight, Nicole.

I'm not trying to be political at all, but I keep thinking of everyone I know who is so "pro life" and I wonder why in this society that claims to value life so much, that we let caregivers suffer and TBI patients languish with no real support?

Caregivers are left to navigate a system they often know nothing about. Even with support it is intimidating. Hang in there.

I think it is something that bears reflecting. We absolutely need to provide better care for those who are suffering among us. That is being pro-life- and you are correct (in my opinion) we are failing. Thanks for your words.

Thank you for posting. My 28 year old’s accident was on 11/17/2018. So this is new for me. In searching for info on TBI/anoxic brain injury I came across your blog. There is no therapy or support in my home town so trying to find the right resources and info is challenging. There are times when I lose it but not in front of family or friends as they don’t understand the challenges because they don’t live it every day. Family quickly fell back into their everyday lives that they became more distant after the first couple of weeks with little or no support now. They mean well and I understand how easy it can happen. His friends also came around the first couple of weeks but now he has none. His childhood sweetheart and fiancé is out of the picture so not only dealing with the challenges of the effects of the injury, dealing with his emotions and lack of understanding why others abandon him can be even more difficult so it’s comforting to know you are not alone and there are others you can connect with. God gives me the strength to push through this. I’ve accepted the fact that I may never have “me time” like I used to between work and caring for him. I know there will be many more days where I break down but the fact that he’s still alive is a true miracle and I’m willing to do whatever it takes for his recovery. So again I say thank you for posting and letting me know that these feelings are ok and will happen as a caregiver. God Bless!!

Jill...keep meeting the situation with grace and determination. It sounds like your son is very fortunate to have you. It is A LOT to navigate. I am grateful you found BrainLine. WIth much love.

Thank you for sharing. I feel a lot of the same although I am the caregiver for my husband. Your words came at a good time. We are coming up on four years post accident. Tonight, he had another "colorful" outburst on me and our three school-age kids. I'm pretty open about our struggles when people ask, even in the grocery store, but most people don't know what to do with the information. It's too much for them.

Tracy, Kudos to you for having courage in sharing the truth. It is a long, and often lonely road. I hope you find some safe places and people. With much love.

Thank you for this, I am reading through the tears. I too, am there with my 27yo daughter. Not sure how many day but since 6.16.2008.

3,893. That is a long time. Thinking of you, Terry. Stay strong.

I feel the same..... just lost it with my 42 year old son who suffered a brain injury a little over 2 years ago. Nicole, you sent me your email and I need to message you. Soon I hope before I completely break down. Thank you

Debra, find a safe place to unwind and then recharge. Taking care of yourself is challenging, but so worth it. I am sorry it is such a tough time.

Love you dear. ❤️Hang in there.

Thank you, Jessie.