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My So-Called (Caregiver) Life

Debbie and her dad

Alaskan Debbie Newsham is a first-prize winner of Caring Today's 2006 "Give a Caregiver a Break" essay contest. She was "called into action" when her mother developed end-stage liver failure and was no longer able to care for Debbie's father (who has Alzheimer's) and grandmother (who was in a nursing home). Now, with help from her husband and three children, Debbie cares for her dad while holding down a job and serving as an advocate for caregiver rights and services, including her work with AGENET (Alaska Geriatric Exchange Network), a coalition of providers of adult daycare, nursing homes, assisted-living facilities and more. For Debbie's off-site blog, click here.

The Gift of Time

Submitted by mlichter on 2006, December 13 - 21:52.

When you don't know what the next moment will bring, treasure each moment you have.

When, at 50, my wife Lynne was first diagnosed with an advanced case of scleroderma complicated by severe pulmonary hypertension, we immediately knew that a different type of biological clock than that usually considered was ticking quite loud. It didn't take long for me to know how much time we had, for the first Internet page I pulled up regarding pulmonary hypertension explained immediately that the afflicted person has approximately two years from time of diagnosis. Lynne was not one to be scared easily, or at least not one to show it, and she took the news with timeless grace.

Time became even more of a factor after the first year, especially around days that were special to us both. It started with Valentine's Day. I don't remember what I got Lynne, but she gave me a watch. It was a nice timepiece, moderately priced, handsome in design, something I was proud to wear. I thought it an odd gift from Lynne, however, since she knew I already had a few working watches--a number of which she'd gotten me in our 21 years together. I wore the new watch every day, putting my older watches in the drawer.

My birthday arrived a couple of months later and, to my surprise, I opened a gift box to find something I could swear I did not need--another watch! It was of higher quality than the one I received in February, possibly even more handsome, but something I considered superfluous. It was of similar rectangular shape to the earlier gift, but had a black band rather than brown, so I alternated watches depending on what I was wearing.

Time went by, as did Lynne's health, before the next event arrived. Fact is, by the time our wedding anniversary arrived in early December, nearly two years had passed since she was diagnosed with severe pulmonary hypertension. I'd spent that time splitting my days among going to work, raising our daughter, managing our household and caring for my wife. Lynne spent much time thinking about the life she'd enjoyed and the times she would not share with those she'd be leaving behind. But she didn't do so in a maudlin manner. Rather, she relished each moment, expressing her gratitude, informing us of her developing philosophy and reminding all who would listen of the importance of the time we get to share.

When our anniversary arrived on December 9, I presented Lynne with a crystal flamingo. A funny-looking bird with a graceful line, flamingos always made Lynne happy. She had quite a collection of them in and around the house, long-necked pink peculiarities that provoked a smile from all who saw them. Lynne presented me with a box, told me not open it and to take it to the post office, where I was to return it to the store from which it had come. I didn't know what was inside it, but considering the amount of insurance Lynne insisted I take out on it, I knew it was valuable. I didn't ask where my gift was that anniversary; just having her with me was gift enough at that point.

Time then took its toll. Within a week, Lynne entered the hospital for the last time, passing away just 10 days after our anniversary. But she still had something in store for me.

The morning after her death, at around 10 a.m., the doorbell rang. A deliveryman was there, announcing he had a package for Lynne. I accepted it, noticing that it was from the same store to which I'd returned the package on our anniversary. Upon opening it, I noticed it was not for Lynne but from Lynne to me. It was a beautiful watch, an extraordinary timekeeper. And I understood.

Time, my wife had been telling me for so long, goes on. It stops for no one. It is precious and should not be wasted. It is the thing that heals all wounds, painful as they might be. As time goes by, she was reminding me, our daughter would blossom into an intelligent and beautiful woman. In time, I would realize, my life would return to something resembling normal. Over time, I would continue to remember her. Time, she taught me, is not the only thing that lasts forever. So does the love of one's spirit.

Comments

The Gift of Time

Dear Mr. Marc Lichter,
Your story has brought me to tears and remembrance of my mother who passed away on July 19, 2005 from Scleroderma and lung cancer. She had scleroderma for 35 years of her life. Then in 2004 she was diagnosed with lung cancer. Though she never smoked a day in her life. My life with my mother was very rocky and at times I hated her but the last few years and especially the last 2 years of her life we had become the best friends that we never were. She knew that she was dying and at first didnt want to accept it but then with much love and ministering to she had accepted it. Her death has become a bittersweet miracle for me and my family. She had left me an inheritance and I was able to pay off debt and buy a home that I had dreamed of for a long time but never could do so. I love and miss her terribly and I hated the disease she had but learned to accept it like sha had to do. Your story has blessed me immensely and I feel as though I know you because you took care of your wife as I took care of my mother. Thank you for blessing me with your testimony of love.
Much Regards, Nadia Martin

The Gift

Marc,
Thank you for sharing your story of the gift. I was in tears as I read it, because the gift of time has been my daily focus. Since I was diagnosed with scleroderma a couple months ago,I have begun to appreciate much more the time I spend with my children and the people I work with. In the last month I have lost so much agility with my hands, my heart feels like its pounding most of the time, and I tire much too easily. I am 51 and have seven children I have been raising on my own that need me, and I need them. Sometimes I don't know if I'll be able to keep on working, but then I focus on the moments, or the times, that I am able to just be with my children and share a part of me with them. Things I can't do anymore are not such a great loss then.Sometimes I am afraid that I don't have enough time, but then I remind myself that it is what we do with that time that counts,not how much time we have. The message Lynne has given will give me strength when I feel week. Time is surely the master key that I will treasure.I know you too will treasure the every moment and time you have with your daughter,and the time Lynne shared with the two of you will live forever.Enjoy it! Treasure it! and allow it to let you both continue blossoming into the persons you were meant to be!

Marc Lichter

I have read your story over and over and cried until I thought my heart would break. What a strong and selfless woman your wife was!!! I was diagnosed with SSc about six months ago. So far, I have been told it has affected my entire digestive system and I am waiting for the results of a pulmonary function test. I already know the test was abnormal, but not to what extent. I am a 56 year "young" woman, wife, mother and grandmother to four beautiful and wonderful grandchildren. But, most of all, I am a new Christian. I can now face each day with God at my side and peace in my heart. Of course I want to see my grandchildren grow up, but instead of thinking that far ahead, I enjoy watching them play, laugh, discover new things and watch the twinkle in their eyes when they do so. God Bless You, Marc Lichter and your family.
Melody Hux

TheGift

Dear Marc,
Your story opened my eyes! My daughter is 14 years old and has been diagnoised w/scleradema since she was 7.The hardest part for me has been focused on dwelling about her never being able to grow up and have a family of her own, we argue, typical teenager, and I should be more focused on enjoying the time I do have with her instead of what might not be. Thank you for sharing the gift. I will now be treasuring the time I have.
Kelli Gage

Your Strength

Kelli, Melody, Diane and Nadia: You honor and humble me with your kind words.

I understand your challenges, concerns and pain. But what you've shown me is your strength to persevere, to find what it is that gets you from here to tomorrow and the tomorrows after that.

None of us, healthy or not, know how many tomorrows we have. You demonstrate that what is important is how you live today. You do it filled with love.

The Gift of Time

Thank You so very much for your TIME.
I too have systemic Scleroderma and have a recent diagnosis of Pulmonary Hypertension. The worst part of that is I can't qualify for any of the medication for pulmonary hypertension, which of course leaves me with a two year sentence. Your story is so perfect as I have a husband of 22 years, a newly married daughter and a son about to graduate High School. I have alot of hidden feelings of what's about to happen when it comes to my family as I don't know how and when to say what. I have so much I still want to see, yet all my final papers are in order. I want to see Grand children, my son settle down and get married, and finances for my family to be better. Yes, sometimes I still feel sorry for myself although no one else knows that. I so would love to print your story for my family to see, I hope thats okay with you. Again, Thank You.

To Sandra J

Share this story with anyone you wish; it's okay with me. And share your "hidden feelings" with the ones you love. It will help them help you—and help you feel better along the way.

Stay in touch. If there's anything I—or those who read this—can do to help, here's a way to get the word out.

my beautiful mother

Dear Marc,

My mother recently passed away in August 2006. She had scleroderma for 19 years but it wasn't until about 8 years ago that she really started to show symptoms of systemic scleroderma. My mother was diagnosed with Pulmonary Fibrosis and over the past two years it progressed rapidly. She was on the in-active list for a lung transplant and at the end of May they decided they were going to activate her but not until she had a lung bx of something that showed up suspicious on her recent CT scan. My mother was diagnosed with stage 4 lung cancer....what a huge shock that was to all of us. As you can see...mom didn't live much longer after that but we all (my father and three other sisters) have learned to cherish the time that we had with her...and remember the years that we were blessed to have her by our side, how she watched us grow up into mature adults that she was proud to call her daughters. My mother and I spent a lot of time together~I was by her side through the thick and thin of this all and I am so lucky and grateful for the TIME we had together, the personal memories that I have of my mother and I. I miss her dearly and not a day goes by that I don't shed a tear for her but I know my mom will always be with me...right here in my heart.

So, thank you for writing that story, TIME is truly that key to all we do in life.

beth lacey carlson

my mum

my mum has ranalds and scleradema shes always in pain shes on 14 tablets a day plus she has to go to hospital every now and then for a drug called illioplust seeing her rips my heart out as shes always crying her fingers are always discoloured and three fingers are patched up as the skin has split from the illness the docter told her so many things like her finger would drop off then she got told that she needed them amputated but now the nail and the skin on the top of her finger are dropping off. i would like to no more about this condition a bit more so i can explain to my mum as every where ive looked on the internet so far doesnt have much to say if anyone would like to help me my email address is rosie-king-1990@live.co.uk hopefully someone can email me thanks rosie.

Your Mum's Raynaud's

Rosie,
Try this link . http://www.raynauds.org/ it's a US site but may help