Meet our Family Caregivers of the Year
Meet our Family Caregivers of the Year
The winners were chosen based on their answers to these three questions:
1. How do you manage the really tough caregiving days?
2. What words of encouragement can you offer a fellow family caregiver?
3. If you won $1 million, how would you use the money to help family caregivers?
Meet our five winners and read an excerpt from their response to the questions, below:
In order to successfully manage the really tough days, I prepare myself on the really good days. I have become aware of my limitations over my many years as a caregiver of my medically fragile daughter, Nikki, and I have learned how the challenging days affect my body, my mind, and my soul. In order to weather these storms, I establish reliable support systems and back-up plans that I can rely on to manage these times. I ask for help. I didn’t always: I thought I could do it all. And it didn’t take long to appreciate how unrealistic this was. Now I know who builds my energy and feeds my soul and I call on those people when I need a shoulder to lean on and when I need the encouragement to know that I can and will get through it. I know who I can enlist to help me in my home and who to contact if there is a breakdown in a community or a hospital resource.
I allow myself to grieve, to cry, to let it all out. I have learned that the key during these times days is to take the time to feel but not allow myself to wallow in that grief for too long. Dwelling in a place of grief and sadness doesn’t serve Nikki and it doesn’t serve me. Nor do I want to stay stuck in such a space as it robs me of joy. What it does allow me to do though is to purge the emotion from my system, making room for gratitude and hope. In doing so, I can pick myself up and carry on.
I spend good days engaging with others and establishing meaningful relationships with all involved so that when a crisis occurs, I can easily implement a plan that best suits my needs and those of my daughter’s; both matter equally. I keep vital information organized and easily accessible to reduce the burden on me of recall when I am particularly stressed.
On good days, I create cherished memories with my daughter and celebrate her happy spirit, her ten-thousand watt smile, and her infectious laughter. I practice gratitude every day for the people in our lives who feed our souls and this fills my cup for anything that we must face together. I am even grateful for the difficult days as they teach me strength, resilience and determination to get me and Nikki back to a place where we can create special moments in a world that doesn’t always seem fair. I attend retreats that allow me to find and create my own magic and celebrate my incredible, unpredictable and sometimes messy journey that is my life.
It’s ok to be sad, or angry. If you feel like crying, cry - alone at home, or at the grocery store if that’s when it hits you. Though caregiving can also feel isolating, try to maintain one or two essential relationships, and if people aren’t your strong-suit, a dog can provide an amazing amount of support and love. ;) It’s ok to wish somedays that it would just end, and the guilt that comes with those thoughts. A close friend once said that you can’t control your feelings. You can only control what you do with your feelings, how you act, react. So, feel your feelings, then pick up and move on. You’re stronger than you know and your person needs you. It will never be enough, but hopefully you will be able to say you did everything you could.
On the really tough days, I remind myself that I am responsible for my own happy ending, accept whatever stress or negative I’m experiencing, and allow myself to feel comfort and peace knowing that I am doing my best. If that doesn’t work, I reach out for support and encouragement from my trusted advisors.
The mantra I live by is “it’s only temporary.” It gets me through any hard time. It helps me realize that any pain or suffering I might be experiencing is ephemeral, open myself to joy and hope, and come back to the current moment. If you know there’s an end, you can get through anything.
Caregiving is a full time commitment and can cause constraints on both your time and personal finances. More often than not, the caregiver has to take time off from work in order to care for their loved ones. If I won one million dollars, I would break it down into four sections or funds.
1) $250,000.00 “Support Staff Fund” would be placed in an account for caregivers to hire outside help in order to give the person providing care a break so that they can refresh and recharge their batteries. I would divide the funds up and distribute them in $1,000.00 mini- grants to provide additional support such as hiring a home health attendant to come in a few times per week.
2) $250,000.00 would be placed in a “Medication Emergency Fund” that would be dedicated to medication. We all know that in today’s healthcare climate, critical life-saving medication is crucial and for some hard to access. Many Americans are suffering because they don’t have health insurance and there is a maddening red tape system to navigate in order to have access to critical medicine. In most instances, when caring for a loved one, time is of the essence and this fund would enable its recipients up to $1,500.00 to go towards the cost of paying co-payments for medications.
3) $250,000.00 would be placed in a “Grief Therapy Fund.” The process of caring for someone you love parallels the well-known stages of grief. Therapy has helped me and I would love to offer financial support for recipients who don’t have counseling as a resource so that they have access to personal time with a professional, licensed therapist and space to process the trauma that accompanies the medical crisis at hand. I would give $1,000.00 to each caregiver.
4) $250,000.00 would be placed in the “Self-Care Fund.” This money could be given to its recipients to go to a cultural event, a delicious dinner, a spa day- whatever their heart desires in order to pour energy and care back into the caregiver so that they may have enough fuel to continue to take care of their loved one. I would give mini-grants of $500.00 to each caregiver.
I have so many ideas!
1. First I would buy iPads for every caregiver and client. It’s a wonderful tool for communication for enjoyment AND for medical care. With Facetime .. face to face conversations with loved ones can make a remarkable difference in mental health. There are so many outreach apps to stay in touch, read, stay current on news, watch your favorite shows, share photos. the list goes on!
2. I would make sure every caregiver had all the necessary equipment she/he needed to make their job easier and more rewarding for the client. Lightweight wheelchairs, scooters, canes, ramps, adjustable beds, walkers etc.
3. I would create a travel voucher system for family members to be able to travel to see their loved ones once they reach a point of immobility and for caregivers to have an allowance to hire respite care for the caregiver.
4. Lastly create a caregiver retreat spa/center designed specifically for vacationing when you care for a loved one but CAN BRING your loved one.. that is in a lovely setting like the mountains with majestic views or on a lake or ocean view. A place where a family can vacation together, be together, but have full time care provided with all the accessibility features of an assisted living center for their loved one. Trying to leave for an extended period of time the person you care for can be exhausting. The lists are endless, writing out all the care instructions.. then there is the mental stress of being far away. More often than not a family wants to vacation together, but needs a destination that will accommodate the person they care for allowing EVERYONE a vacation. In my personal situation as a live in caregiver, if I want to take a a week off duty I would either have to hire in home personal care or take my loved one to a nursing home. Both incredibly expensive and offering my loved one NO chance of a vacation.
I am designing on a small scale a lake front retreat for a single family where the family stays in a detached cottage and their loved one can stay in the main home which is designed for accessibility challenges such as ramps, handrails, zero entry shower, portable potty chair, wheelchair, lift chairs, lower king size bed, internet, tv and a magnificent view.. zero entry to the deck to sit outside and enjoy their family. All managed by a caregiver while allowing the family as much or as little interaction with the care. See it here: www.homeaway.com/7606448
We’ll continue to introduce you to our five winners as we’ll feature their stories on Caregiving.com and on Your Caregiving Journey podcast. Our winners also will receive a free registration to our Fourth Annual National Caregiving Conference which happens November 7-10, 2019, at the Chicago Marriott O’Hare. We’ll honor the recipients during our lunch and our live broadcast on Saturday, November 9.
Thanks to all who nominated and voted for our nominees. And, thanks to our winners for their inspiring work!
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