WHO SAID LIFE WOULD BE FAIR?

Dreams Floating Away

Dreams Floating Away

Dreams/Caregiving/Medical 2016
by – Sheri de Grom

My dad once told me he could always tell a city girl from a country girl by the way she walked. Dad said the city girl seemed to have more time to enjoy the process of getting where she was going and she wasn’t in a particular hurry to get there.

Then he would grin and say, “Now you country girls seem to always have a raging bull chasing you from place to place in those 3” high heels you wear. It’s a wonder you don’t break your neck.”

Dad after shooting rapids with Tom on Umpquah River, OR A Dream of Dad's Came True

Dad after shooting rapids with Tom on Umpqua River, OR
A Dream of Dad’s Came True

Dad and I often talked about my goals and the things I wanted to do with my life and never once did we talk about any of it being easy to accomplish. He’d had to work hard all his life and he knew I was willing to do the same.

I digress, running through the underground tunnels of the Capitol with documents hanging from the edges of my briefcase. Always another mission, one more legislator to convince, one more signature in support of whatever bill; adrenaline filled my days with purpose.

I often think about my dad and it’s always with love and tenderness. He encouraged me to accomplish every dream I concocted. I’m sure he wondered where some of my ideas came from.

Once upon a time, I told Dad, “Life’s not fair.” It’s not that anyone ever promised me life would be fair but I’d sure like to catch a break here and there as a caregiver to the man I love.

What am I to learn from God, taking away the man I love and leaving me an empty shell of his former self in his place? I love Tom, but how can I carry the load for both of us? I’m exhausted.

As others remind me, FAIR isn’t a word to be found in the Bible but I never went looking for it there. I’ve never believed God would give me more than I could carry.

I’m determined Tom won’t die on my watch but how can I guarantee that? I’m afraid that I’ll turn around and he’ll be gone. The very thought makes me want to run but I can’t imagine running without him at my side, but I would have to carry him.

I watch him sleep with his head covered up and the sheet drawn tight around his body as he hugs the very edge of the bed. What has penetrated his brain and caused him to be so fearful? He cannot verbalize his fears. The strong, determined leader I married has been stolen. But by whom? I don’t understand and I’m beginning to believe I never will.

Bailey’s confused when Tom hides his head. The 29 years we’ve been married, our animals [members of our immediate family] have always known when Tom is in the most   distress].

Bailey doesn't understand when Tom doesn't or can't play.

Bailey doesn’t understand when Tom doesn’t or can’t play.

I’m frustrated and oh so angry at the same time. It’s not Tom’s fault that doctors have made one mistake after another and have ignored symptom after symptom for 30+ years simply because he has a mental health diagnosis of bipolar disorder.

Others ask how I’m getting along and I’m ashamed to tell them the truth. I sound selfish and self-centered. I want to research and continue my work with organizations that support veterans, the elderly, abused civilian military personnel being displaced from their work [especially women once they reach age 50 and are at the pinnacle of their career]. I know how to do these things and I want to do them.

Tom, Bailey and my gardens are my life and that’s not what I had planned at this stage of

Welcome To My Front Door

Welcome To My Front Door

my life. Of course, I wanted all three in my life but I also had plans for so much more.

I thought managing Tom’s mental health care and being his advocate was one of the most difficult challenges I would have in my life. I hadn’t a clue of what was to come. It did set the foundation for what is happening now.

I’ve spoken of reading 50 years of Tom’s medical records while preparing his VA Claim. I wish to share much about this process but in the meantime, it’s one of the most difficult projects I’ve ever taken on. The claim has now been turned in and been told we’ll hear something from the VA in 3 to 6 months.

I read of caregivers and how they dedicate their lives to the person or persons they care for. Then I wonder, am I being too demanding?

My prayer today, “Dear Lord, I humbly submit to you my confused thoughts and ask your help in making me stronger in all aspects of my life. Please let me be more patient and compassionate. The bottom line, it seems – the man I love has disappeared into a tinderbox of chronic illnesses and the only certainty I know is that every day is uncertain. Today, Lord, I ask for perseverance and the ability to do. The toy boxes that represent my life’s interests are in a mess and I’m responsible for that myself. I ask for Your will to be done. In Jesus’ Name, I Pray.

Front Door

Front Door

To my friends – thank you for reading with me.

 

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About Sheri de Grom

Retired Fed/JAG, 5 yrs. on Capitol Hill. Former book buyer for B and N. Concerned citizen of military drawdown. Currently involved in mental healthcare reform, health care strategist and actively pursuing legislative change wherein dual retirees are exempt from enrolling in Medicare at their own discretion without losing tertiary healthcare benefits. Monitor and comment on Federal Register proposed legislation involving Mental Health, Veterans Affairs, Health and Human Services, Medicare and rural libraries. Licensed OSHA Inspector to include Super Fund sites. Full time caregive to Vietnam era veteran. Conceptualized, investigated possible alternatives, authored, lobbied for, and successfully implemented Title X, Section 1095 (known as the Third Party Collection Program of Federal Insurance).
Aside | This entry was posted in Caregiving, Medical 2016 and tagged , , , , , , , . Bookmark the permalink.

42 Responses to WHO SAID LIFE WOULD BE FAIR?

  1. inesephoto says:

    Sheri, I am catching up after my long absence – I spent two months with my daughter and her family giving a hand with the new baby and all the tests and trials that accompanied the arrival of this beautiful little girl. I keep an eye on your Facebook posts and wish you best of luck with your claim. Life is not fair indeed, but we can handle it 🙂 Love ❤

    • Hello, Inese. It’s wonderful to see you here. From the facebook pictures of the beautiful babies, I thought you were perhaps with your grandchildren. I so agree with you about the task of catching up.
      The claim via the VA is a monster and will have a 2nd portion to turn in as we discover more that’s applicable. We don’t want to discover more. It’s simply turning out that way.

  2. I was glad to see the photo of your dad. You have explained your situation with agonizing honesty. It’s so hard for me to read this post and not be able to change your situation. My hope is that you can still grow, similar to the maple sapling in my photo “Growing Between a Rock and a Hard Place”: https://thedailygraff.files.wordpress.com/2011/03/brave_tree.jpg

  3. So Sheri you have run away from home and left Tom on his own, you are indeed selfish and self-centered, having a good time while Tom suffers, what did you say, you want to be somewhere else fulfilling your dreams, who wouldn’t want to be with your burden and a lot would do just that , they would get a complete stranger to care for those in the way and do what makes them Happy Clappy , who cares if it brings more suffering to those left, as long as they get what they want.

    You are an incredible Loving Christian Woman Sheri and I Love and Respect you greatly in Christ Jesus and I will Pray that He will open a door for you so you can do both, care for Tom and have free time to do the things that give you Joy and to achieve your goals.

    I will need to join up with you again Sheri with my new e-mail address, as I can’t find this Post and the same with other Bloggers Posts too, although I’m showing that I’m following you and them.

    Christian Love and Blessings – Anne.

    • Oh, Anne, you give me a chuckle this morning. I’ve tried to e-mail you and it bounced and now I know why – you have a new address. My e-mail is sdegrom@conwaycorp.net. My blogging pattern has been haphazard this past year due to the demands of caregiving.
      I so value our friendship. I’ve made many friends on WordPress along this journey and some days sitting down at the computer, even if just for a few minutes allows me to drift away to another place.
      Thank you so much for reading and praying with me. With love, Sheri

  4. Sheri, I pray for you, for your wellbeing, for some peace and respite from caregiving. The Caregiver’s Bill of Rights spells out that taking care of ourselves is not selfish, it is necessary. Caregiving is a huge burden. I pray also for Tom’s health, comfort and peace.

  5. Roos Ruse says:

    Seeing your post notification first thing this morning started my day with anticipation – as if the course of the day was clear. Now more familiar with your circumstances than most, I can pray specifically for you and your household. I too am a live-in caregiver, have been support for wives/caregivers of Parkinson’s and Alzheimer’s patients. After reading, my prayers will be far more specific. I’m convinced specific prayer yields dynamic results. Two thoughts that help me daily: 1) be in the moment 2) you’re not alone. ❤ ❤

    • Thanks for stopping by and reading with me. I believe we can agree this business of caregiving is not for the faint of heart. At one time Tom was diagnosed with Parkinson’s disease but later the diagnoses was changed. The doctors decided the tremors were caused by interaction with medication he was taking. Unfortunately, the tremors never went away.
      I totally agree with being in the moment. Often the memories of the times Tom and I shared sit gently in my heart and calm my soul. However, they are just that, memories. They cannot take the place of being here and now!
      The 5 years we lived in DC were truly the hardest. I had to protect my government clearance and I had no one to help me with Tom. The times he was in the hospital, no one other than myself knew where he was. The stress was insurmountable. Thankfully those days are behind me. I was definitely alone then with the cloak of mystery surrounding my life. Now, I don’t have to worry about such things.
      Have a great day and thanks again for stopping by and leaving a comment. Sheri

  6. Patty B says:

    As I read through these comments I thought there is nothing more loving to add. Other than you and Tom are loved by all of us. We care for you and when you both hurt we hurt. I will pray your prayer with you – daily. It is through prayer that we will stay connected and where you will find the strength, comfort and encouragement you need each new day.

    • Thank you, Patty. It’s been a long road but then I think about you and know you are dealing with life on your own without your Tom at your side. Yesterday was definitey a chalange and today seems to be more of the same but I have my ‘tool box’ and know both of us will make it thru.
      I’m learning to set my alarm a couple hours earlier than Tom wakes up and that gives me time in the gardens I wouldn’t otherwise have. It’s a time for quiet reflection and listening for the sounds God knows I love to hear.
      Thanks for reading with me, dear one.

  7. My heart pours out to you. This is such a tough situation. But, you are human and humans are made up of feelings…so even the ones you do not like or you shudder at…feel them and allow yourself the space to have them. The only way to get beyond the emotion is to feel it and then let it walk its path to the doorway out. It is a constant revolving door…but a breath of fresh air will get through. Know you are in my prayers. Blessings!

    • Thank you. I understand the issue with keeping feelings bottled up. They can soon turn to all types of negative thoughts and/or behavior. I do my best to work through them and move on. For me, the hardest of everything to learn and accept as the ultimate reality was the fact that I could not take away Tom’s pain nor could I always make things better. I was used to accomplishing positive change with my life and when I couldn’t do it for the man I loved, I found it to be an intolerable position. I’m still working on that from time to time when I slip and move into my old ways of thinking.
      Thank you so much for taking time out of your day to read and comment.

  8. GP Cox says:

    We’ll always be here for you. Anytime, you know where you can find me – phone or email – I’m there for you two!! All my best to the big fella and an exttra scratch behind the ear for Bailey!

    • As always, G.P., with many thanks. I keep thinking I’ll get an e-mail written and before I know it the day has slipped through my fingers. I sat with a Vietnam veteran yesterday and helped him with the registration process for healthcare through the VA. He’s a dear friend and stopped by the house. It’s a continuing reminder to me that 69% of our veterans don’t know what benefits are available to them and 62% don’t know the definition of a veteran. Honest, I’ll put together a blog about that some day.
      We do have good news – We’ve met a new doctor Tom was referred to via his neurologist. For years we’ve sought help over Tom’s falling; it’s gotten so much worse since his last hospitalization. This doc is a physiotherapist and he’s admitting Tom the day after Labor Day for a minimum 10-day stay. His care will be all physical and occupational therapy.

  9. Sheri, without knowing it, I’ve met you. I’ve met you in the caregivers I’ve met over the past 15 years. The caregivers who are doing mountain moving work and not being recognized. Not being relieved. Not knowing what to do next. And every time I’ve met you I’ve been amazed, saddened, heartened, and confused. How can individuals carry on with this ‘work’. Providing love and nurturing and all of the tasks that come with caregiving, and in addition-have to become warriors to get the things they need for their loved ones. I don’t know what I can do either. But I will add to your prayer and ask for strength, comfort, help and answers. Maybe we shouldn’t expect life to be fair. But I think it’s okay to ask that any battles we face, we don’t have to face always alone.

    • Collen – I almost didn’t put this blog out there but to be honest about everything I had no choice. Doctors and other professionals have told me for years those with Tom’s combination of chronic illnesses never make it past 55; therefore no one takes the time to publish anything on the subject. I’d searched and searched for any information. My hope is that others in my position can learn from where I’ve been.
      As always, thank you for reading with me. I always value your opinion and thoughts.

  10. ksbeth says:

    sheri – this is heartbreaking, raw and honest and not many people would put this out there for others to read and learn from. i applaud you. this shows what a brave and strong woman you are, and again, many can understand and identify with at least some portion of this – the unrelenting work of caretaking for someone you love, the frustrations, the exhaustion, the delay of personal dreams and wants and the sheer weight of it all, on your shoulders. all this being said, there is no way to be brave and strong all of the time, you are human and have your own set of needs and limits. i think that each of us find ourselves surprised at times, with the turns our lives take, and i hope that you will find your moments of joy, wether it be in the present, or in your sweet memories with time and i will continue to support and honor your fight – thank you so much for sharing this – beth

    • Beth – You are a dear for sticking with me through blog after blog. I so appreciate and love you for that. I know you’ll always find something to lift my spirits.
      Yes, this was a hard blog to not only write and face my own enemies within but to post. I talked with a friend about my decision to put my thoughts and feelings out there for the world to see. I’d meant to hit the no comment tab and at the last minute didn’t do that and I’m here, doing one of my favorite things – talking with my WordPress friends.
      Thank you for being you and many thanks for reading with me.

  11. Sheri, Love you! Prayers always. Life is rough, as I’m finding out more and more the older I get. This body used to be really strong, I thought I’d always be one tough bird! Well, “always” is slowly ebbing away. But we face life kicking and screaming and embracing all we can as long as we can. Yes, like Marijohn Wilkin wrote, One Day at a TIme. Sweet Jesus is there to gather us into the fold. Amen! A salute to you and Tom from an old Army brat! God bless.

    • Jeanne, Love you right back and of course, Prayers Alway. I know what you mean about the strength of your body ebbing away. I too used to be able to conquer most mountains and if I couldn’t I chipped away at it until I found something that worked. These days, I find myself asking the garden store to loosen the lids on some supplies I buy for the garden or I would never get them open. And, thank goodness I have a linebacker living across the street from me to lift bags of soil and other heavy out of the car for me [at a price of course].
      I’m learning to ask for help for the first time in my life and for that I had to turn to God and study his word. A dear friend of mine left a really ugly pumpkin on my front porch one year to remind me that God loves me, warts and all.
      With aging, I find heat is not my friend and high humidity is almost as bad. I must simplify my gardens for next year. I can no longer spend as much time in the gardens as I used to before Tom became so ill and my body couldn’t stand it even if I had all the time in the world.
      Jeanne, thank you for taking the time to read with me and leaving a comment. You lift my spirits and am sending gentle hugs, love and lift you up in prayer.

  12. Your post is heart-wrenching, Sheri. You are lucky you have a strong faith in God to help you through this. Your love for Tom is exemplary. I’ve never met anyone who loved their partner so much.

    • Patti – Unconditional love goes both ways. As I’ve said to others, I almost didn’t post this blog and have had it in a holding pattern trying to get up the nerve to put ‘it’ out there. I thought it only fair to other caregivers to lay it all on the line.
      When Tom tells others of our love, he always begins his story from the night we met. We were a blind date and he’s absolutely correct. Neither of us was looking for love. He was a single father to 2 young daughters [full custody and they were both under 10 plus he was active duty] and I was working 80 hours a week and making strong advances with my career not to mention engaged to someone else.
      True love refuses to take a backseat to anything. He tells others the moment he saw me that I was the one and I felt the same. Within 20 minutes of being introduced, his hand touched mine and from that moment on neither of us dated anyone else. It was instant and I’d wish that connection for you and all those I love.

  13. My heart bleeds for you and for To. No it is not fair for your dreams to be dashed and then loaded down with so much to do. Surely God is listening and my hope is that one day Tim will have some better days and that you also will have some respite.

    Bailey is a smart dog and thank God for him. I hope that he gives Tom some comfort from his physical and mental demons. And you, some companionship and peace as well.

    Take care if yourself, dear Sheri.

    • Scrolling through the comments, I couldn’t believe I’d missed yours. I hope you know how much your comments mean to me.
      Bailey has brought me tons of chuckles and comfort from day 1 and yes, he spends time with Tom also. He can be just as still as necessary when Tom is sleeping. When I go to the garden for a little respite, Bailey will jump up on my desk and bark like crazy at the window if Tom should wake up and start coughing. Tom said we didn’t need the alarm button but I have no plans to get rid of it.
      How are you?
      Do take care dear one. I think of you often.

      • I’m ok, Sheri. I taking pretty good care of my health. I hope that you are doing the same. I think it’s marvelous that your rescue dog is like a service dog. They really attune themselves to the people that love them.

  14. We just don’t know what the plan is for our retirement years. Yours I’m sure isn’t what you had intended. I’m impressed that you never quit.

    Your dad’s response to talking about your life plans made me smile. My two kids get frustrated with me because when they come to me whining about a problem, I always come up with some solution. They say all they wanted to do was complain. Can’t I just be sympathetic?

    Well, no, I can’t.

    • Jacqui – For some reason, your comment was hung up in the Que and I was waiting for it to move over to the blog before commenting. I always found dad to be a good listener and we had some great discussions over the years. Mom passed 20 years before he did and that gave dad the opportunity to travel with me on a frequent basis. He loved the travel and I always enjoyed his company.
      I miss being able to pick up the phone for our long conversations and of course, I really miss having him in our home. He was the dad that Tom never had and that was another blessing in disguise.

  15. Elyse says:

    you can know that you fought like a tiger for your husband for decades. Nobody could do more; nobody could hope for more.

    • Elyse – Thank you for stopping by and reading with me. I guess this post is where I let everyone know my life is just like everyone else – – – it’s not happy, happy, happy most of the time.
      I’ve hung onto this post and thought I couldn’t post it because I felt raw and exposed but darn it, it’s life. I so appreciate you for hanging in there with me.

  16. Mae Clair says:

    Sheri, my heart breaks for you and Tom. I know we’re not to question, that His ways are higher than our ways and His thoughts higher than our thoughts. I do know that at some point in the future we will be in His kingdom and all these trials and tribulations will be in the past. I send you strength, love and prayers, my friend.

    • Mae – You’ve read with me from the earliest days of my blogging and I thank you. I almost didn’t post this blog and when I decided to put it up I told a friend I was going to do so with no comments. Long story short, it’s friends such as yourself that continue to remind me that the choices are not mine to make but HIS.
      I do get frustrated and angry but if I were in a time machine and it were 1983 and I were meeting Tom for the first time, I wouldn’t change a thing. Those years before he became ill have fueled the fire within me.
      Thank you for stopping by. I treasure your friendship and your comments.

  17. Hello Terry – I know you know of what you speak. I remember your blogs of those many months and long days and nights you took care of your brother. I love Tom and cannot imagine life without him yet I’m exhausted beyond anything I can remember. I know I’ve worked harder in a different way but back in the day, I had adrenaline pushing me for I loved my work and could get lost in it. Often now, Tom will have 5 or more doctor’s appointments per week and that means driving to Little Rock the same number of times for me. I have days when I cope much better than others. And, yes, I so understand. All the years I fought so hard for mental health care for Tom, my prayer when I was desperate and couldn’t think of anything else, was always God’s Will Be Done. I so recognize the song, ‘one day at a time sweet Jesus’.
    Hugs back my friend and lots of love. I hope you are taking good care of yourself.

  18. Terry says:

    It’s so hard to be in the position you are now. You actually see both sides of the coin at the same time , just as I did with my brother , I understand what you want to do. The only thing I can say is Tom is here now , you will have plenty of time later on for so many things and you will cherish the fact you will have a long to do list , one day at a time sweet Jesus is all I ask from you. Recognize those words from the song? Hugs and love my dear friend

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