Caregiver Holding Senior's Hand

Proposed Bill Would Give Tax Credit to Family Caregivers of People With Disabilities

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A bill introduced in the U.S. House of Representatives this week would give qualifying families caring for a loved one with a disability a tax credit to cover caregiving expenses.

Its called Credit for Caring, and would cover 30 percent of caregiving expenses — with a $3,000 maximum over the course of a year. The tax credit would offset expenses for everything from groceries to home modifications, according to Disability Scoop.

This is more than just another tax credit,” U.S. Rep. Linda Sánchez of California, who cosponsored the bill, said in a press release. “This is about how we can help older adults and people with disabilities live independently in their own homes and communities.”

To be eligible, caregivers would have to be working and earning at least $7,500 per year. It would also apply for those taking care of an older family member.

It’s a win-win,” said Rep. Tom Reed of New York, who also cosponsored the bill. “Families will stay together and those in need of assistance have access to better care.”

Would this affect you or your family? Tell us in the comments below.

h/t Disability Scoop

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A Letter to My Teenage Self at the Beginning of My Chronic Illness Nightmare

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Dear 15-year-old Kimi,

Today, you entered a world I hoped you never would. I had hoped you would just go on sailing through life, never thinking about the illness that almost took your life 14 years ago when you were still in Korea. Unfortunately, every time you think it’s over, it’s just beginning. You will be forced to face things I never thought you would. You will go through surgery after surgery, never getting answers. I know this sounds like a nightmare, and trust me it will be, but there’s a light at the end of the tunnel for everyone, including you! You will turn into the most compassionate, forgiving person ever.

You will have “treatments” you never dreamed of, complications you never knew could happen. But you will, in the process of this entire nightmare, gain the most beautiful soul you could have ever imagined. If you don’t believe me, I will give you a list of the wonderful things you will gain through this nightmare.

You will have many failed surgeries. That I will not lie about. But you will begin to understand that all these surgeries were helping your doctor figure out what is wrong, and you will unfortunately learn that because of the nature of your problem, surgery is the only option, and you will do so with unfailing grace.

Your doctor is explaining to you. Explaining, explaining and explaining. Sometimes you don’t even know what he is talking about. Sometimes you will just want to tune him out. But you will learn even though you’re shy, you need to be a proactive part of your health care — so much so that you will buy books on neurosurgery and watch TV shows.

Your doctor’s telling you all the odds, and you always seem to be on the losing end of it. But somehow you find through that infinite grace I talked about how to be thankful for everything you have, even if you are on the wrong side of the odds. And you will be on the wrong side more times than the right side.

Today is a turning point. You have jumped in. You can’t go back. I believe you have two choices, though. You can either give in, or fight with all your heart. You can embrace this unpredictable illness and show it that it will never define who you are. And you will find yourself in the process. You will be glad you were made the way you were.

Sincerely,

Still fighting

Follow this journey on Blessings in Hydro.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I Talk About the ‘Taboos’ of My Son’s Life-Limiting Illness

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A couple of weeks ago, I had one of those all too seldom opportunities to sit down with a fellow special needs mom and enjoy a cup of tea and a chat. Our conversation, as it often does, found its way to what we as special needs parents talk about together that we can’t (or simply don’t) talk about with others. It is cathartic to be free to “talk taboo” — and to talk about talking about “taboo” subjects. Yeah, we really do that when we get together! Order a hot chai latte, a blueberry muffin, grab a seat and away we go. You would probably be astounded at the subjects we can cover in under 15 minutes. We can go from birth to death to funeral arrangements in under 60 seconds. It’s one of our superpowers.

As we sat there, the warm scent of the spices wafting up from my chai latte, I told her I finally wrote down my wishes for my son Brendan on the DNR form. That’s “Do Not Resuscitate,” for those unfamiliar with the lingo of our journey. That form is now in the hands of my son’s life-limiting illness nurse and his pediatrician, being worked into a legal document that will enable my wishes to be heard at “that” moment, in case I am on the figurative and/or literal floor unable to speak. I gave the form to his nurse last week, at which time she said to me, “Tracy, you realize that if you aren’t present when Brendan goes into a medical crisis, they may not be able to put him on life support until you get there to say goodbye, right?” Yes. Of course I said yes, I realize that — but if, just if — then please have them do that so I can be there to let him go.

“But there are no guarantees…” Yes. Again, yes, I know, all too well.

So I took another sip of my chai latte, and then I said how I plan to have my son cremated, and then one day, when it is my turn, buried with me. And there it is. “Talking taboo.” My living, loving, amazing, precious angel of a son, and I just said what I have planned when he transitions from this life.

Why am I writing this, you may ask? Because, as with any of my writings, it is to enlighten those not on this journey and to give a voice for those on this journey who may be unable to find the words. And selfishly, there is that cathartic nature to writing, just as mentioned above when talking to a friend. I find putting such “taboo” thoughts — realities — into words, be they vocalized or written, helps to release those very thoughts from our ever-heavy hearts: I’ve said it. I’ve written it. Now, I can release it.

Well, maybe not release it fully. But it does help.

We need to talk about what is “taboo.” Otherwise, it can slap us in the face, us unprepared, caught off guard, having never allowed ourselves the liberty to mention the unmentionable. I feel you should allow it, because there are times during this journey that can bring us parents to our knees. I shared one of those unmentionable times with my son’s nurse last week. I talked “taboo” as I told her there have been a few times when I’ve held my son in my arms — him laying in a hospital bed with tubes and mask and lines of all sorts coming from his body — and I’ve whispered in his ear, “Angel, if you want to go, you can go. I’ll be OK,” as the tears streamed down my face (as they are now as I type this, in fact). “Thank you for teaching me what love is. Let go if you want, if it is your time.” But it wasn’t his time. So know this, that those of us in these shoes may have said these words to our very own children who have a life-limiting illness.

We may have said it’s OK to fly; if it’s time, fly. And the fact we may have said it is OK — it truly is OK.

It’s not “taboo.” I believe it is loving unconditionally.

boy in hospital bed
Tracy’s son, Brendan.

Follow this journey on Transitioning Angels.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Trust I Place in Special Educators as a Special Needs Parent

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Trust does not come easily, and trusting your child with special needs to others can be enormously difficult.

Though it is not explicitly set forth in the laws governing special education, it is the foundation that can have the power to build and destroy relationships between parents and school districts.

I have to trust you will be kind and patient with my daughter, and treat her as you might your own child.

I have to trust you will pave the way for inclusion for my child, and encourage her peers to spend time and play with her.

I have to trust you will ensure my daughter is safe, that she does not wander away and become lost.

I have to trust you will help my daughter at snack and lunch, open her juice and help to feed her, so she doesn’t go hungry.

I have to trust you will discreetly help her in the bathroom, too, and ensure her dignity all the while.

I have to trust you will advocate for the needs of my child, in the face of pressure to do the opposite.

I’m supposed to trust that you will not deny the services my daughter requires and that are guaranteed by law.

I’m supposed to trust that planning and placement teams (PPTs) are a level playing field, but I have experienced a vastly different process.

You can trust me that it takes an infinite amount of faith to entrust you with my daughter, whom I hold so dear.

You can trust me that your actions or failure to act on my daughter’s behalf can shatter my trust in you in an instant, and once lost, it cannot be regained.

You can trust me that I will do everything within my power to advocate for my daughter, and I hope you will assist me in that endeavor.

You can trust me that what matters is not the number that comprises my daughter’s IQ, but rather the number of times she is treated with kindness, sensitivity and respect.

You can trust me that my daughter and others like her can enrich your life in ways you may never have imagined.

You can trust me that despite the stream of obstacles that line my daughter’s path, her future can and will be amazing.

You can trust me that my daughter can have an enormous impact on your life, may her brightness reach you and help guide you.

You can trust me that my daughter can teach you, too. I believe you can learn compassion and understanding and many other important, invaluable life lessons from her.

I have to trust you that when I am no longer able to care for my daughter, you will have prepared her for independence, and that she will be OK.

And that takes an immeasurable amount of trust.

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When My Mother’s Nurse Cared for Me as Much as She Did My Mom

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I have often wondered about how a seemingly chance meeting can have a profound impact on your life. I have long stopped believing in coincidences, yet I am often surprised when it happens. Sometimes these chance meetings are just that — only meetings. Sometimes, however, they turn into a deeper connection that time and distance do not diminish.

On July 1, 2010, I got a phone call from my sister that our mother had been taken to the hospital from her memory care facility in an unresponsive state. This had happened on two other occasions, and both of those times hospice was called in to provide palliative care. But the other two times, our mother revived. This time it was different. Mother’s major systems were beginning to shut down and her doctor predicted she would not survive more than 24 to 48 hours. Hospice was once again called and the decision was made to transfer our mom to my sister’s home. I left work early, drove home and updated my family, packed a few things, and drove the five hours to my sister’s home, hoping I would make it in time to say goodbye.

I arrived at my sister’s home shortly after the ambulance had transported our mom.  The hospice nurse was there making sure we had all the comfort medications and supplies, etc. A short time later, a beautiful young woman arrived, complete with a warm smile and an air of confidence. Ashley was our night certified nursing assistant assigned to help us care for our mother, and yet she did so much more.

I found it difficult to sleep that night, so Ashley and I stayed up and talked. Although I am old enough to be her mother, it felt like we had been friends forever. She told me about her diagnosis of leukemia when she was a young teen and her successful remission. We talked about her dancing and her career with a ballet company that was cut short by another cancer diagnosis and her current treatments. She had just started chemotherapy the month before and had shaved off over 18 inches of her hair. I talked about my work as a therapist and my challenging doctoral program. We talked about my new grandson and how I wished he would have had the chance to know my mom. We talked about her plans to enter nursing school and to become a hospice nurse as soon as possible. While we talked, she cared for my mother — gently, professionally, compassionately.

three hands on bed
Ashley’s photo of their hands.

Over the course of the next nine days, I looked forward to Ashley’s shifts and our talks. The night mom died, it was Ashley who came upstairs to wake me — giving me a chance to tell mom goodbye before she drew her last breath. It was Ashley who took a beautiful picture of our entwined hands — my sister’s, mom’s and mine — before the funeral home took her away. A chance meeting with an angel who turned out to be a lifelong friend.

Six years later, a lot has happened. We have never seen each other in person again, but we stay in touch. She is a nurse. She got married and is an amazing stepmother. She beat cancer for the second time. She has hair again, but this is the way I remember her:

woman smiling wearing bandana and sunglasses
Ashley.

… and the way I remember how she provided care to me as much as she did my mom.

Follow this journey on Musings of a Cluttered Brain.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When Chronic Illness Can Make You Feel Like a ‘Burden’

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This post is targeting two audiences: anyone with chronic or invisible illnesses or disorders, and myself.

You are not a “burden.”

You are a miracle, actually. I believe God gave you the gift of life for you to be here, wandering this mysteriously gorgeous Earth.

You are a friend. Make a list of the people you adventure with, who have beautiful, ridiculous, embarrassing yet awesome pictures with you in them, and who you share endless pizza dinners (and lunches, breakfasts and snacks) with. The people you make laugh when they want to cry and whose aid you run to when they’re facing a hard time. You are a friend to many.

You are a daughter, son, sister, brother, granddaughter, grandson, niece, nephew, aunt, uncle, etc. Think back to holidays being surrounded by the few or many special people you know you can run home to. The ones you may have shared your best memories with and perhaps experienced your biggest arguments with. You are their family. Without you, they would be one less.

You are a gift. When you shine your light on this world and share yourself with the people in it, I promise you are presenting something unique that no one else is able to. You have a purpose here — a purpose designed solely for you.

You are a warrior. You endure physical pain every day, some days worse than others — but every day you’re getting stronger, even when it might feel like you’re weakening. You fight through the aching, throbbing, pulsing, nauseating, piercing and everlasting horrific sensations that can be indescribable to others who don’t know what it feels like to be in your body.

You are a fighter. You fight through that pain and somehow keep moving forward in your journey. You fight on, whether it’s getting through the work day without having to call out early due to a worsening symptom or biting your lip to fight the pain during your 100th unsuccessful IV insertion. You fight through the frustration, sadness, anxiety, loneliness and helplessness that can come along with your physical pain. Your fortitude is immeasurable in size.

You, my dear friend, are not a “burden.” Your illness is a heavy weight, and it is your weight. But even being solely yours, it cannot be carried by you and you alone. Because you are a friend, family member, gift, warrior and fighter, chances are you have a support system to help you carry it. Do not be afraid to ask for help. The ones who are meant to stick around will ask how they can help share that weight whenever they can. You were not made to carry this alone.

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Mary.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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