It is very early. I am an early riser. I like to have my quiet time with my coffee and my thoughts and/prayers before the busy-ness of the day hits. As I scrolled through some social media and let my brain wake up, this message pictured left came up. I modified it and shared it with others but before I did, I took a moment.
The last three years since our daughter became ill have been a challenge, but 2023 has been the most difficult. I have watched her steadily decline as we have struggled for answers and never thought my recent retirement that was supposed to be full of travel would be spent by her bedside as her full time caregiver. It has changed everything for us.
Three years ago I had my own crisis when my doctor told me I was near pre-diabetes. My daughter had begun having some health issues and as I worked on improving my health and got better, she got sicker. At first it seemed minor, nothing to worry about. We were all going about our lives and managing with what doctors were thinking and with medications that seemed to help at the time but we still had no answers. I spent 2019-2021 losing over 60lbs, getting in shape while working 2 jobs and juggling a myriad of doctor’s visits to get help and a diagnosis for our daughter. We thought we had some things figured out in 2022, I whittled down to one job and then retired.
With our kids now young adults and both working, my husband and I were making future plans to go to Europe for a year or so, but all of that changed as things continued to worsen for our daughter despite everything we were doing. Doctors gave us “diagnoses” of all these syndromes and problems but not an explanation as to why. It didn’t make sense to me. How could a person just “get a syndrome” without a cause or plausible explanation. It was only,
“This isn’t curable.”
“We don’t know.”
“Maybe bad luck?”
“We are very sorry. Do you need any refills?”
I often sat there in disbelief thinking, “What? This is the best you can do?” 馃槦
Nevertheless, we moved onward with our lives with the drugs, the symptoms, and things were not really bad – yet. I continued to research, read, analyze, try supplements, new doctors, different diet approaches from keto to anti-inflammatory diets. Nothing got better.
When 2023 rolled around, I named it “My Year of Possibilities”. I had plans and visions and things I wanted to do and accomplish. Exchanging our plan for Europe with a “cruise life” that would keep us closer to home in 2022, I went on some solo cruises. It was lovely until – after returning home from a trip to Mexico, my daughter hit her first major crash and became bedbound for awhile. We were all thrown for a loop and life had to take on some serious adjustments but we had not hit the worst of it yet.
As this last year has unfolded into one of the most difficult I have been through in a long time, my world became very small and yet nothing compared to hers and all she had now lost at only 23 years. For me alone, I had to eliminate a lot of things to focus on her care. My retirement and social life and even travel eventually stopped and it became about simply surviving each day.
Writing about all of it and the mental and emotional struggles would require energy I simply don’t have for today, but what I can say is all is not lost!!! Surviving through 2023 and remembering it as my year of possibilities, I have accomplished a lot. I have learned how to make adjustments for her, care for her, rally my husband and son when I need help, and pay ever close attention to my own needs to keep from succumbing to the difficult days or the weight of depression that sometimes tries to fasten itself to me like a ball and chain.
At some point, I had to get a new plan. I had to get a new team. What I was doing wasn’t working – not for her or for me. I had to make adjustments in my own life that allowed me the energy to still get to the gym or go for walks and still have time to keep my house in order (although this became VERY low on the list). I needed a new team of doctors able to give me answers, not the same rhetoric or “pass the buck” attitude, and team who didn’t believe there was or is an answer for achieving wellness simply because they didn’t have that answer or know an effective solution. I needed one who could say, “I don’t know but I will walk with you and we will figure it out!”
I was bound and determined to find that doctor or team. I am fine at looking at research and methods and solid evidence and facts but I am ALSO looking at any and all who have gone before and maybe had some success. I am looking at those who HAVE recovered, whether for inspiration or hope but maybe a measure of insight in their journey that would be helpful for us. Thank goodness for those who are willing to share and help. Thank goodness for those who are seasoned in caregiving and who know the struggle who can help those of us still new to it all.
The last few months have been grueling. In the summer of 2023 when I again, came home from a solo cruise to another crash she experienced, I put a plan into motion and spent Fall of 2023 putting that into motion. It was grueling for everyone but mostly for her. We managed it and it thankfully led us to more clues and more help.
We now have answers we didn’t have before and what the solutions are and how much it will help is yet to be seen. I don’t want to say the hardest part is over because it isn’t, but getting this far and what has been put into place for what I will call this “phase” of the journey, is over. I have learned what was needed to be learned. I have adapted with each new challenge. I have formulated new plans and strategies when needed and have completed those plans. Now it is time to set into motion a path towards healing. What measure that will be is uncertain and largely up to my beautiful daughter because she has her own story to tell and I hope one day she will.
Never give up. When you are feeling overwhelmed, remember how far you have come and what you have accomplished. Remember what you are capable of. You might feel invisible but you are not. In the middle of maybe serving those who you feel like don’t “see” you, remember your value is not based on their recognition of you. YOU recognise you and appreciate yourself. It isn’t being prideful or arrogant. It is not succumbing to the self defeating thoughts that can ensue when we may feel like nobody sees or cares about how much we contribute. It can be hard as a caregiver because the ones we are caring for (whether our families or someone desperately ill), may not have the energy or ability to express what they might express if their circumstances were different. Know inside they love you and need you. Remember to take care of yourself. They need you but YOU need you!
Take a moment to reflect on what you have accomplished and all you do. Be proud and content in that and then keep going. Let’s forge ahead into 2024 with new Vision, new Hope and Resilience of Spirit.
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