Wednesday, October 17, 2012

Making It Work

In one of my recent posts I wrote about home health services and who cares for me on a day-to-day basis. So in this post I thought I'd write about who's helped care for me over the years since several people have asked how I manage to get by since I don't have paid nursing care.

I'll start by saying that my main/head caregiver is my mom and that she's the only constant thing in my life when it comes to my caregivers. She's been here for me every step of the way and I know that she's not going anywhere barring some unforeseen dilemma, like her becoming ill, incapacitated or her becoming too frail to care for me. (I know there'll eventually come a day when she won't be able to care for me any longer and I don't know what I'll do at that time, but for now, it's us against the world.

I've had several wonderful friends and family members that have come and gone over the years and have been here to help for short periods of time to help shoulder the burden. My youngest sister Chandra has been here pretty much every step of the way along with our mom, although Chan didn't help with my care all that much at first.

After my accident I was in the hospital for seven weeks and then I went to rehab in Atlanta, Georgia, to learn how to live as a disabled person. It was my goal all along to get stable enough so that I could live at home and NOT be relegated to a nursing home. When I was finished with rehab, I returned home to Missouri to live in February of 2004. Taking care of me is much more than one person could handle on their own, so we had to make a plan of who would help my mom take care of me. Annette, one of my older sisters, agreed to move home to help Mom care for me (more about that in a minute), but she wasn't going to arrive until April, so that left a two month period when Mom and I would need help.

February 2004 – April 2004: During these months different ladies from my church would come over each weekday morning to help my mom bathe me and get me dressed and up for the day. This put me in a very awkward position having these women who'd known me as a normal, 19-year-old person just a few months previously now being responsible for helping with my intimate care. Although I was extremely grateful for their help, it bothered me having them see me in a such a vulnerable, helpless state.

In these two months I became close to two of my helpers; Linda, a lady from church that lives up the street, would come once or twice a week to help Mom get me dressed (she comes into play again later in my story), and Britney, another friend from church, who would come over a few days a week so that my mom could get out and run errands.

I met Britney at church a few months before my accident and we really hit it off. She was 10 years older than I was and we bonded over nursing (I was in nursing school at the time and she was a nurse). She'd recently moved to the St. Louis area with her husband who was here for a 2½ year orthodontic residency. It was so wonderful to have help from Linda and Britney since I really liked them and felt comfortable with them, instead of some of the other ladies from church who felt like strangers to me even though I'd known most of them for years. When my sister Annette moved home she took over for all of our other helpers and she and our mom took care of all of my care by themselves.

April 2004 – March 2005: Initially, it was my mom and older sister Annette who cared for me. Annette had graduated from college and was living on her own in Utah where she worked. After my accident she decided to move back home to help Mom care for me. I've never been in her position, but I imagine it was very difficult for her to move home after being out on her own for so many years. But after a lot of thought and prayer she decided to do what she felt was right, even though it was difficult.

The first year after my accident was the most challenging year of my life. Thankfully, I didn't realize how hard it was at the time, but now that I look back I realize just how difficult it was as I settled into my new life. I was extremely grateful for Mom and Annette, and as we settled into my new life we established a routine and things gradually got easier.

A few months after Annette moved home she met her future husband, Joseph. They became engaged and got married at the end of March in 2005. I was very happy for Annette and didn't begrudge her getting married one bit, but it did put Mom and me in a pickle again as we thought about who could help us.

Jan 2005 – June 2007: A few months after Annette got married and moved away our oldest sister Miriam and her family moved from Texas to St. Louis.  They say that the Lord moves in mysterious ways, which I know to be true because having Miriam's family not only move to St. Louis, but move to the same neighborhood that my mom and I lived in was a definite answer to prayer. Miriam was able to come down a few mornings a week to help our mom get me dressed and up for the day, and then Miriam would stay with me while Mom went out.

Linda (the friend from church that lives in the neighborhood that I mentioned earlier in this post) started helping again in 2005 after Annette moved. Linda would come down three mornings a week to help my mom get me dressed on the alternate days of the week when Miriam didn't come down. I'm so grateful for Linda because she's fun, she's helpful,… she's a saint!

June 2007 – January 2010: After living here for two years, Miriam's family moved away to Oregon in the summer of 2007 so that her husband could finish up his PhD. Mom and I were again faced with the predicament of needing assistance, so we had to find someone to help when Miriam had been coming over.

My youngest sister Chandra was still living at home and had just graduated from high school and would be starting college in the fall. She'd earned free tuition at a local community college, so her plan was to live at home and commute to school. Her classes were on Mondays/Wednesdays/Fridays and she was off on Tuesdays/Thursdays, so I "hired" her to work for me to be one of my care attendants. This was a mutually beneficial situation for Chandra and our mom because Chan could earn money while going to school without having to get a job outside of the home, and help our mom with my care on Tuesdays and Thursday mornings.

January 2010 – August 2011: After Chandra finished her Associates Degree she decided to get a full-time job. Now that she was working she wasn't able to help on Tuesday and Thursday mornings anymore. But it wasn't long before someone else fell into place to fill the void… Lara, a young girl I knew from church that went to the same local community college that Chandra had been going to. For the next 18 months she'd come over two or three mornings a week and this worked out really well for Mom and me.

My older sister Kristin and her family lived with Mom and me for five months in the latter half of 2010 after her husband graduated from grad school while he was looking for a job. While Kristin was here she helped our mom with my care in the afternoons. It was so nice to have her help and I will always remember the grand times the three of us had while doing my bath in the afternoons. Although this was only a "temporary fix" since it was only for five months, but it was a blessed time!

August 2011 – present: When our helper Lara graduated with her two-year degree she decided to transfer to a university a few hours away. Mom and I again faced with the problem of needing help and we had to find someone that we could enlist to help with my care. It wasn't long before the Lord made a way for Mom and me to have the help that we needed. Kellie, one of our friends that we know from church offered to come over to help my mom get me dressed and up for the day three mornings a week when she found out that we needed help. Friend and neighbor Linda has also been consistently helping Mom since 2005, too, so Kellie and Linda are the ones that are currently helping Mom get me ready in the mornings.

Laura, one of my younger sisters, has also helped with my care over the years. I "hired" her shortly after she got married and she'd come down two or three afternoons a week to help Mom with my afternoon routine. She did this for about four years, but had to take a "leave of absence" from caring for me earlier this year because her life 's gotten a little too busy now that she has little two kids and has recently gone back to school. Laura's help was another temporary fix, but it was great while it lasted.

One of the major themes I hope you take away from reading the long rundown of the evolution of my care over the years is that God knows me and He knows of the trying times that my mom and I often find ourselves in, in regards to needing help and not having a permanent fix in place.

In this post I said that my mom's ideal solution to our situation would be to have all of my sisters live here locally so that they could all help Mom with my care. This hasn't happened, but at least most of my sisters have lived here at some time or another and have been able to help. Sharon is my only sister who's never been able to live here and help on a consistent basis, and she recently told me that she feels like it's her turn! She said she's sad that she's never had the opportunity to live here. I'm crossing my fingers that her husband will eventually get a job here, but that seems like a long shot since they seem firmly planted in Mississippi, but only the Lord knows for sure!

The next test of faith is going to be what Mom and I will do after Chandra gets married and moves away. Her plan is to get married next June and although I'm happy for her, I'm absolutely dreading that for myself! I'll miss her friendship and all of the service and help that she provides Mom and me with (especially since she's the one that does all of my beautifying!). I've just got to remember to have faith and know that something will work out!

I'm so grateful to belonged to a church where service is so important because all of the friends that have helped my mom and me over the years have them from church. I'm also thankful for my kind and loving family. I love this quote that says, "God notices us, and He watches over us. But it is usually through another person that He meets our needs." I often find it scary to press on in this trial since I'm not sure what will happen to my mom and me in the long run, but I know that God knows me and that He's not going to leave me hanging. I definitely wish I could see the "whole picture" to know what will become of us, but I take comfort in my confidence that the Lord will provide.


Anonymous said...

Hello Heather

I've been reading your blog for almost a year - in fact I've read through your entire site.

May I say you are a remarkable woman - not only because of your ability to remain so upbeat and positive - no small feat in and of itself.

I find you remarkable for who you are based on your blog.

More to the point I believe you honestly live your life according to your faith. You live it Heather - with grace and dignity.

You've authentically embraced the true meaning of family.

With unwavering love and loyalty everyone in your family rises to the occassion.

It's clear coming together for someone you love without complaint is a beautiful testament to the love you share.

Your family slideshows are lovely. You're creating a gift of memories to cherish.

I wish you a lifetime of happiness - there's no doubt your family will always be there for you

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