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When a Patient Becomes a Caregiver

I'd have to say the fact today is "National Caregiver Day" comes at a perfect time! This month is our CrAzY month for our little guy (our FosterSon, we call "Shoes" online) . But soooo worth it! Becoming a (Foster)Mom was an amazing experience, I had been waiting years to be a "mom". After Andrew and I got married we were very excited to become a family! I feel like I went through all the same emotions as an expecting mother would. I just took classes and filled out lots of paperwork in the process. I nested even, we bought furniture, set up the rooms, and got everything ready for our first placement. We still have one of the (original) three kiddos that came to live with us in August 2017. He has completely stolen our hearts and the hearts of pretty much everyone in our lives who meets him. So while I'm not his Biological mother and he may not live with me forever, he will forever feel like a son in my heart. I love him no less than a biological mom loves her son, and perhaps we realize he is a blessing even more, knowing he may leave us and never see us again.

My heart hurts when he is sad and my heart soars when he giggles.   For Valentines Day, we decided to take "Shoes" to his first (Andrew and I's 7th) Triple D. We ate a restaurant from the TV show "Diners, Drive-Ins, and Dives. So excited to share this experience with him!

.My parents had to watch while I was lived in the hospital until I was 4 months old, she had to watch me have 3 life saving surgeries within weeks of being born, not to mention another dozen surgeries throughout the rest of my life. They watched (and held my hand if I wanted) as they stuck me with needles, put tubes down my nose, heck enemas up my bottom. More than once they watched and waited even though doctors might not think I'd live. My parents were my rocks, they didn't cry (well not in front of me). They were tough, therefore I was tough. They did give me lots of love and little treats, but never coddled me. I grew up understanding this was just a part of my life, which is why I can deal with everything so well as an adult.

I remember thinking as a teenager that having CF was super hard and that my sister and parents were lucky not to have it. I wasn't jealous, but did go through like a year long phase of "why me." I knew my parents gave up a lot for me, that my father was stuck in a job he didn't want and that was physically hard, just because he wanted to keep the insurance package for me. My dad worked two jobs for over 10 years and still doing the same work (I only went off his insurance shortly before Andrew and I married in 2015). My mother gave up her job to take me of me around the clock, including all my secondary conditions. My Cerebral Palsy meant lots physical therapies, trips to chicago for new leg braces, and seizures on top of that and my CF. But I guess I didn't grasp the full emotions until I became a Caregiver myself.

Now that I am a caregiver I empathize with what parents of CF patients go through. And what CF spouses endure. While I wouldn't call Andrew my "Caregiver..." He is my teammate and 100% supports my needs and steps in the caregiver role when needed, whether going into hospital, needing to work extra hours to cover a bill for medication. Or something as simple as carrying the groceries because I'm having a rough day breathing. I'm thankful for my support system. So in a way every single family member or friend who has helped me... AND especially my parents, Andrew, and my sister Ada. Today is for you!!!

AND for all the CF Caregivers out there!!! HAPPY NATIONAL CAREGIVER DAY!!!!

Feel free to tell us who you would thank or if you are a caregiver yourself and what the best and worst parts were! We would love to hear from you!!!

Comments

  1. Although I have never been an actual care giver. At least not on a regular basis. I have worked with and assisted those with are caring for people with epilepsy,downs syndrome; and cerebral palsy. The one thing I have noticed is you can't do everything yourself . And not to try to do everything. I believe that some caregivers think that if they are not there at all times they are letting whoever they are caring for down. But everyone needs time to themselves every now and then. Otherwise to much stress is created. Depending on the situation conflicts can arise between those being cared for and those doing the caring. So it is important to give each other a little space and to work out any issues that come up. Sometimes it may take another person to come in and help resolve things. It is also important to see things from those who are being cared for point of view. Do they feel like they are being a burden? Resent having to be cared for. Have problems expressing what they are thinking or want. So as a caregiver regardless of what mood you are in or type of day are having. Never convey that to who you are caring for. Try to be upbeat at all times. Don't let person being cared for believe that they are being a burden. Attitude is very important. People can tell if you are doing this because you want to or have to. And one more thing. Those being cared for may not always display outward signs of needing care. So don't get upset if someone makes a comment of why they need help. So don't do everything yourself allow others to assist. A strong loving and caring support group is necessary for both caregiver and those being cared for. One other thing take those who are being cared for regardless of physical or mental conditions out to different places movies, sporting events to the park etc. For they need to get out and experience different things. Also you and they may discover they can do things you did not believe were possible. So remember even if you feel all alone. There will always be someone there to pick you up

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  2. Hi Doug! I completely agree. Caregivers need a support system as much as the "patient" or "one being cared for." I'm very lucky to have that! My parents never showed any sign that my CF was "difficult, tiring, or overwhelming" I think this is why I have an upbeat personality (for the most part). I agree I want and need to be strong for my kiddos and need to know when I need a break. It is tough when they struggles, but the overcoming the struggles, makes the hard parts all worth it! Our little guy "Shoes" is so sweet, brave, and loving" I'm so lucky to have him in our life! Thanks for the kind words and I completely agree! See you at Rips :-)

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