Stress. It can manifest itself in many different forms. Years of research has determined not only can it cause health issues, personality changes, and loss of sleep, but it can also change the make up of our very chromosomes.

Being a caregiver is arguably one of the most stressful life events. And it can last anywhere from a day to decades. Sometimes it involves caring for more than one person. Sometimes it determines your career path, your friendships, your income, your mental state, your health, your ability to think clearly and your ability to care for yourself.
I have often described my time since Jim has died as a period of self growth and extreme sadness. I also have been adamant that many of my symptoms have been the same as those describing Post Traumatic Stress Disorder. So I take time to think back through the years of caregiving and try to determine what I could have done differently. What could I have done to change my “post Jim” life? Could I have saved myself from all of the agony and these multitudes of emotions and the trauma I experience daily? How can someone who is barely hanging on, sometimes for years, have enough foresight to focus and work on creating a better life for the future?

It is difficult just maintaining sanity and keeping an emotional grip as you watch your loved one slowly morphing into a stranger let alone try to figure out what you will do for yourself after they are gone. And who knows when that will be? Some days it seems like never. Some days it seems like any minute. The ups and downs, the not knowing, the waking up each day having no clue what is just around the corner, the loss of friends and family, the loneliness and heartache. It all adds up day after day after day. And yet, we are supposed to have patience and understanding and know just what to do when our loved one doesn’t know us or yells at us about something we can’t determine exactly what for or they wander incessantly and obsess about finding an item that was long ago gone from your home. We are expected to fill out paperwork and keep track of meds and keep up with laundry and the house and bills that were due last week. We are supposed to child proof the home for our spouses and our parents. We are burdened with determining if they are still able to safely drive or live alone. We are forced to cancel plans last minute because they call franticly about not being able to figure out how to work the remote control. It is laughable that at some point during all of this chaos and worry and isolation we are supposed to figure out a way to take time for ourselves, to give ourselves the same care we give our loved ones.

I have not come up with something I could have done differently to avoid these symptoms of PTSD. I couldn’t have slept more. I couldn’t have stopped be present for the changes in Jim. I couldn’t have rid myself of the worry and the anguish that enveloped my every waking moment, and even some of my sleeping moments. I couldn’t have taken away the pain I watched our children suffer.

But I can talk about it. I can share our story. I can let others know they aren’t alone. I can help educate people to possibly change the stigma of dementia. I can bring awareness about PTSD in caregivers and acknowledge caregiver burnout as a real thing. But it takes many voices. We all need to be heard. We all need to get help. We all need to help each other and find ways to change how caregivers are treated.

The loss of a loved one doesn’t magically get easier or better overnight. The pain is felt for a long time. And the repercussions of being a caregiver do not disappear quickly. It takes time to heal from all you have witnessed, all you have felt, all you have thought and said and done. Time does heal wounds, both emotional and physical, but it doesn’t necessary forgive. Only you can forgive and let go. Start today with helping yourself find your path and no matter where you are on your journey, let the healing begin.

7 thoughts on “Let the Healing Journey Begin

  • Jane Bagnall

    Thankyou, thankyou for putting into words My journey..Jane

  • Jean Rinehart

    My husband and I were married in 1972. It was true love and wonderful. We had 2 wonderful children. In 1986 all of that change with a traumatic brain injury that left us devastated. He had to lean to walk and talk and function all over again. His personality changed drastically. When I came home from work I never knew if he was humped up in the corner crying or had a gun to shoot me. I was working in the coal mines and after 15 years had to quit due to heath reasons. I went to college and became an RN. After working at a local hospital for another 15 years I went into Hospice Nursing. By that time my husband continued to decline and was more abusive with verbal and isolation along with mental abuse. Now it seems I can do nothing right. We went from the young happy family to difunctional. I suffer from depression, borderline bipolar, chronic fatigue syndrome, severe arthritis, and fibromyalgia. My husband was such a good man and hard worker and provided well for our family. He didn’t deserve to the TBI, stokes and psychological changed we have all suffered. I believe now that PTSD can be added to that list. I know none of this is his fault. It happened and can’t be changed. I have retired and taken on the farming and feeding along with caring for him. I have been crying alone and feeling like a failure and worthless especially when he is not pleased with something or nothing I’ve done. It is an emotional rollercoaster that has taken it’s toll on me. I know this sounds like it’s all about me but I know he is not happy with his condition. Some days he is so bitter that he survived. I feel that I’m at the end of my rope and feel like a total failure, worthless, and have lost all my coping mechanisms. It helps just to put this in writing and know that others are in the same boat. All my hopes and dreams are gone. I feel alone and hopeless. Thank you ever so much for letting me vent. God bless you .

    • Jo

      Yes~Sharing is caring! It’s interesting that others have mentioned their “journey”. That’s just what it is! After several years of my husband of 66 years gradually declining with dementia, we moved into more dysfunctional phases & I moved past denial, anger, grief, guilt, to just being so alone….. Romans 8:28 became my life preserver as I grew ever closer to God. All things do work together for good ~ if we let them! At our age, so many good friends are gone, children are busy with their families elsewhere ~ We do become more alone. What can we do?

      I decided to start a journal, to write down what I was feeling, what I was learning & to save the sweet, sometimes funny, moments that arrived to relieve the sadness. I just called it “The Journey”, like several here have.

      It’s just life! It’s what we have to deal with. We don’t understand why ours is this way. I’ve decided that we don’t need to understand, though we want to! We just need to take one step after another & trust God. He knows what He’s doing! And maybe I’ll figure out the “why” someday.

      Right now, I’m just the caregiver for my lifetime partner, husband, friend & lover. We’re still together! That’s enough!

      • Linda

        Your story has brought tears to my eyes. Only, they are tears of joy as you have said this in the most inspirational way.
        I too am in a journey, not exactly like yours yet the same in many ways.
        I was caregiver for my mother for yrs. She has alzheimers/dementia and even w 4 elder siblings there wasn’t enough help for me to continue helping mom.
        It was decided that she be placed in a memory care facility & I know deep down they were right, she deserves a better quality of life than I can give her. She has a team of professionals that I can feel comfortable with. Yet, after she was placed. I was there everyday, almost every minute because I felt like I was abandoning her or thought she was thinking that. She didn’t/doesn’t realize yet that she’s in her new home. I have a hard time leaving her. The not knowing what’s going in her mind drives me crazy. I cry all the way home to her home of 43 yrs only to feel alone & out sorts. Like I don’t belong here anymore either since she’s not here. And I will end up moving soon as the house will have to be sold, not because she has to pay the nursing home, but because she won’t be returning & she may as well have the money. By the way…the place she is at is very nice, we wouldn’t put her in Just some God awful home. It’s very high quality for her but EXPENSIVE beyond belief. I understand the care they do is costly and I’m happy with 99% of it but I don’t know how ordinary people (like us) can afford these places. My mom has always been a very smart & amazing, selfless person who gave everything for others. She took out a nursing home policy 30 yrs go, smartest thing ever. They don’t even sell these anymore, at least for the premium she pd. And the amt it is worth, that’s why we could find an exceptional place for her. She was thinking of us all her life.
        I could forever go on with her amazing life story but back to the point. I have to say. I too am having PTSD, and it’s almost as bad as her having this horrible disease. I adore my mom, she still says she gets to leave there soon or she’s mad because 1 of my siblings put her there without telling her etc etc. It’s so painful, im honest way mom. Before she was placed I asked her if she knew what she was diagnosed with? She didn’t. I explained it to her, we watched several videos on you tube, I think she was paying attention. But she had actually forgotten that & it all went full circle to where I had to try and tell her again, by now she simply doesn’t understand. It breaks my heart, I can’t get on with my own life yet, I don’t know how I guess. She’s not coming home, I have to let someone else do what I did for yrs. I have to watch her slowly die day after day yet hold myself together?? Really?
        This is where I thank you for explaining what you do as I already decided I had to do the same thing & trust on the lord and God our father who have this in control. I have to understand that they ARE perfect and make NO mistakes. I won’t question the reasons for what we have to deal with, but its OK to cry, to vent and most importantly to write down our feelings for the next generation who may have to deal with this as well someday. At least some pleasant words will help.
        It’s still new for me, not even a month in this so my tears haven’t stopped. I have to accept it, do what I can, enjoy ea & every minute I have left w my mom while I can, because I know I can never completely let her go, but I will find comfort knowing who’s hands are holding her when she ultimately leaves this life & gets eternal life with God.
        She had to go through it several times w her mom, my dad, his mom and again w her father. So she’s been where we are now, and it’s admirable. I never seen her hurting, she must have grieved alone. Never around us.
        So. That’s a little bit of my story, my new journey starting at age 60 isn’t something I ever thought I’d be doing, but I can’t stop it. When there’s no other alternative, I also know that I’m NOT alone on the outside or the inside. Because of people like yourself & Jesus Christ our lord and savior & the almighty powerful & creator God himself is within us all.
        We simply must accept him and it does make our lives & ourselves better.
        I’m thankful I found this place to read about others dealing with the hardest times they have as It’s comforting to me anyway to keep my faith. Even though you all have my sympathies as well. Troopers you are, strong & supportive. I think the entire world should be this way & I pray it happens very soon.
        On this Dec 25th 2021, I wish a happy birthday to our savior Jesus Christ & I wish you all a very Merry Christmas & I KNOW it will be a GREAT NEW YEAR. I hope everyone learns (if not already)it will be Historically.
        I continue to struggle w my dear mom, as i do myself, and Its not easy at all. yet I did everything I could, I have no regrets & I thank God for another day. ( it may not seem like a good day) or it’ll be a long day, or it may be a great day. None the less. I’m thankful.

        I will pray for everyone going through this, because it’s so very hard. I pray WE all find the strength & that WE all deserve to take some time for ourselves too. I know it’s easier said than done. But is the key to staying healthy.
        Keep the faith and ???.

  • Paul Bernstein

    I was the ONLY 24/7 support and care giving person during my beloved wife’s five years or so of constant decline. You folks need to be much more aggressive in creating numerous discussions just luke the above.

    Paul Bernstein, Chicago…………

  • Paul Bernstein

    I was the ONLY 24/7 support and care giving person during my beloved wife’s five years or so of constant decline. You folks need to be much more aggressive in creating numerous discussions just luke the above.

    Paul Bernstein, Chicago…………

    And if I said it before I will say it again and again and again

    • Linda

      You’re absolutely right. It helps EVERYONE who needs help getting through their lives through the words of others.
      I appreciate it, I appreciate people like yourself who can put it out there that it’s a WORLDWIDE dilemma for A LOT of people. May God bless you. Only he knows what you went through and it seems you past the test with straight A’s.
      We as humans do what we can, not to earn a medal, but because it’s the “right thing to do”.
      What a lucky woman to be blessed with you.

      You Sir are an exception these days.

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