Recognizing Our Hero Caregivers
When Lara Garey received news that her husband, Tom, had been diagnosed with ALS, she was shocked. Research told her that ALS affects military personnel twice as often as civilians, but there is no explanation for this phenomenon to date. Upon receiving the diagnosis, Lara knew her life would change drastically as her husband’s disease progressed; she remains determined to be a full-time caregiver for Tom.
ALS is a disease that affects nerve cells in the brain and spinal cord, making voluntary motor skills more difficult as the illness progresses. This means that Lara needs to assist her husband Tom with everyday tasks such as cutting his food and picking things up. Though these tasks seem minimal right now, in time Tom will require help with personal care such as bathing, brushing teeth, ventilator assistance, and more. Thanks to assistance from non-profits such as The Independence Fund, Lara is optimistic that she will be able to provide care for her husband for many years to come.
A Caregiver and a Mother
The Garey’s are also parents to a 14-year-old son. Lara says, "Our son has had to take on many more responsibilities than if his dad had not been diagnosed with this disease. Right now there seems to always be something we need to prepare for, like getting the car or home modified to accept a wheelchair when that time comes.” Navigating this new lifestyle is not easy, and it should not be further complicated with daunting tasks. Lara expressed her concerns, "My time should be spent with my husband, not figuring out what equipment and services he needs or should be getting.”
"The Independence Fund doesn’t see a Pre and Post before the word veteran; they just see veteran."
Not only is Lara caring for a loved one with ALS, but Tom is also a military Veteran. This situation can create unique challenges and obstacles to healthcare due to the complicated rhetoric of VA policies and procedures. Lara continues, "There seems to be a division between pre 9/11 Veterans regarding available services either through things like the VA’s Caregiver program and with non-profits. Very few of the well-known non-profits include Pre 9/11 Veterans. The Independence Fund doesn’t see a Pre and Post before the word Veteran; they just see Veteran."
Caring for the Caregiver Community
As with any experience in life, it helps to be able to share concerns,
"Once he sat in his track-chair there was no stopping him. We now go on an almost nightly stroll and roll around the neighborhood and tend to have neighborhood kids stroll with us."
Before The Independence Fund played such a strategic role in the Garey’s lives, Lara said Tom was struggling heavily with the progression of his ALS. The transport chair and walker provided by the VA were little to no consolation in terms of access to mobility. "Getting the super cool track-chair from Carlson Mobility and the Indy Fund was a turning point. Once he sat in his track-chair there was no stopping him. We now go on an almost nightly stroll and roll around the neighborhood and tend to have neighborhood kids stroll with us. My Veteran can now go to our son’s school for lunch, get out on the ball fields for practice and games, and recently headed out to the lake to fish. All things he thought he would never do again.”
Lara has courageously assumed the role of caregiver. As a mother, she has practiced this since the day her son was born. Now she is the caregiver for her entire household. Being able to share this experience with other caregivers through the retreat hosted by The Independence Fund was monumental for her. "I think for me it was meeting and having fellowship with incredible women that are all on their own journey. Connecting to others on such an intimate level was very therapeutic. And, let’s face it, no one likes to think they are the only ones in this club; it was nice to surround myself with others that are not scared or uncomfortable by the challenges I face."
As for advice she has for other caregivers, Lara suggests these 5 tips:
- Breathe - The road ahead will look scary and daunting but along the way there will be people to help you. It may seem very lonely but you are never alone. There are organizations that are available and people are there and they really do want to help. As horrible as the situation might be, if you look close enough, you will experience amazing and beautiful things. For my family, it was a closeness like never before. It was truly letting go of the small insignificant things and embracing the moments.
- Learn to ask for help when you need it - This was the hardest part for me. Most of the time, I am so overwhelmed that I am not exactly sure what I need or even how to ask for something. Take baby steps as you learn how to ask. It may be just for someone to sit with you or grab something at the grocery store. Open up and learn to ask.You will be surprised how many families, friends and even strangers are willing to help.
- Accept that some people may disappear from your life – The truth is, people may not understand what you are going through or they may just be scared and not know what to do or say. When this happens don’t get mad about it because it is their issue and not yours. You have too much on your plate to worry about why a friend won’t come over or call anymore.
- Start preparing – Don’t wait to find and build a support system and available resources. Your goal needs to be to work smarter, not harder. Try not to go at it alone as it is easier to learn from others and make their suggestions work for you and your family.
- Listen to your gut – Don’t ignore that little voice inside your head as it will guide your heart and mind when they are in conflict. It’s also okay to question everything until you know you are getting the right kind of care for your Veteran!
The Independence Fund recognizes the obstacles caregivers face every day and is working to eliminate those obstacles. You can empower caregivers like Lara by supporting our caregiver programs.
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