caregiving rollercoaster

In my opinion, caregiver syndrome or caregiver stress is directly related to exhaustion, anger, rage, guilt, isolation or loneliness that results from unrelieved caring for a terminally or chronically ill dependent or loved one over a period of time. The healthcare professionals, will talk to you about caregiver syndrome or caregiver stress, but as it is not listed in the Diagnostic and Statistical Manual of Mental Health Disorders, that’s all it is, just talk.

Imagine, if something so widely known and talked about by the professionals was listed in the Diagnostic and Statistical Manual of Mental Disorders, insurance companies would have to cover any issues affecting the caregiver due to emotional stress, or physical illnesses.  And there are so many.

More importantly, some of the many caregivers suffering emotional stress issues would qualify for some sort of compensation from local, state, or governmental health agencies. Disability issues among caregivers is certainly real and needs to be addressed, sooner, rather than later.

Care giving has been described as a “rollercoaster ride from Hell.”  Many, if not most caregivers would probably agree with that definition.  My experience is that, it certainly can be.

Life’s dirty little secret

What happens after the care giving or during long term caring.  We know that many patients or loved ones outlive their caregiver.

Why?

This happened to me and can or could happen to many of you, in one form or another.

Three months after Annie died I had a physical. I was told all was well, with the exception of a vitamin D deficiency.
Immediately after the physical, I got a lecture from the doctor in a distinctively different tone of voice.  He informed me that I needed to pay close attention to my body, as intense stress from care giving can set forth a chain of events in the body leading to a whole sundry of illnesses down the road.  (I didn’t believe him.)

But, over time my immune system started letting me down, the illnesses started festering inside of me and I didn’t even know. My grief and loneliness was so intense, I simply wasn’t paying attention to my body. How could I? Dealing with  grief was full time, and occupying all my thoughts.

Four years after the care giving,starting in January 2015, my immune system went into hyperdrive. It was like I was flying through time on a sea of illnesses. Full body inflammation, two heavy duty events with inflamed lungs requiring steroid treatments, shingles, Gastritis with Anemia, which was bleeding of the stomach that led to low red blood cell counts causing fatigue for, half of the year. And on top of that I developed heart trouble and had to carry a little bottle of nitro pills everywhere I went.

Over that dreadful year, my inflammation numbers were high enough to trigger a couple rounds of cancer tests. They didn’t see it but, it was there. In February 2016, I was diagnosed with a significant prostate cancer.

Sometimes giving your loved one everything you’ve got, even though it might not always be enough, the level of stress you’re enduring is probably overwhelming your body’s ability to function normally.  And that leads me to the biggie…The caregivers diet. We may give our patient or loved one what they need in the form of nutrition, but for whatever reason we neglect our own bodies. I guess for me, it was just easier.

Of course, one of the suggested causes of prostate cancer is poor diet. And I certainly had that. Obviously that’s a man’s cancer, but consider this-it’s estimated that 35% of all cancers are caused by poor diet-as stated by Dr. Kathleen M. Stadler, Virginia Tech.  Poor diet does not discriminate between a man or a woman.

The irony is, if we all ate healthy, and lived a healthy lifestyle, 80% of all cancers could be avoided, according to Dr. Stadler.  She’s probably talking about some sort of stress free life inside a bubble, where there are no caregiver duties.  Sort of, a semi-perfect world.

But, if by chance you fit the description of an intense caregiver, where your body is always in motion, or you fall into the category that I defined as Caregiver syndrome, or caregiver stress, you need to become self aware.

You probably can’t stop the train after it leaves the station, but I’ll bet you can slow it down as, I’m doing. I drink plenty of water, have a healthier diet, and walk 1 to 2 miles, 5 days a week. My inflammation is gone, along with other nuisance illnesses. My heart is healthy and stable, and my significant prostate cancer has, so far, made no further advancement since diagnosis. I turned down radical prostate surgery or radiation, for 2 genetic tests and a healthier lifestyle. And I’m so glad I did.  My energy level is elevated and I really do feel well.

After the care giving, don’t let life pass you by. Try to rewind your thought process, get out of the fog, go for walks, have some fun and do whatever it is that your heart desires. I know it’s not easy, but you can do it, if I can.

I wish you all, the best.

www.becauseofannie.com

Written by Bob Harrison
Bob Harrison was raised in the heart of the Redwoods in the far northwest comer of northern California. The little town of Crescent City, California was located near some of the world’s tallest trees, with the west shoreline being the Pacific Ocean. Bob spent most of his time fishing the two local rivers where some of the finest Steelhead and Salmon fishing is located. He was also well known up and down the north coast as an avid motorcycle racer, winning several hundred trophies, and one Oregon State title. Bob graduated from Del Norte High School with the class of 1966, then spent a one year stint at the College of the Redwoods, before having a strong sense of patriotism and joining the United States Air Force. After three years of service, Bob met Annie, the love of his life, and they got married in England in 1972. Bob’s love of country pushed him on to what turned out to be a very successful career, retiring in 1991. Bob’s last military assignment was Wichita, Kansas, a place he and Annie decided to call home. Together they developed and ran two very successful antique businesses until the stranger knocked on their door and changed their lives forever; “Because of Annie.”

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81 Comments

  1. I’d give almost anything to have my wife back. I was her caregiver the five out of seven weeks she was home before she lost. Her brief battle with Ovarian cancer. She’s been gone nearly 16 months. I’m jealous of other men who still have their wife around who needs their care.

    Reply
    • Those months since have been a roller caster ride from Hell, with no end in sight yet.

      Reply
  2. I took care of my Mom for 2 yrs before moving her to assisted living. It took a toll on my body, lifting her when she lost her strength, very little sleep, poor diet and the constant stress and long distance travel. She passed July 2016. I’m finally home after months of hard work cleaning her house to put it for sale. I can slow down a bit but I feel completely lost as what to do next. I sympathize and understand what others are going through while taking this journey. My heart goes out to them.

    Reply
    • What ablessing you were for your mom. Sorry to hear of her passing. (((Hugs)))

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    • Thank you Barb Newberger

      Reply
  3. So true. The struggles are unreal and the loneliness and isolation is unbearable. But I will always be there for my husband. I am sure it is harder on him.

    Reply
    • Barb, I was my husbands primary caregiver for the 2.5 years of his illness and I can completely relate. It’s been 5 years since he passed away & I remember the loneliness and isolation all too well.

      Reply
    • I am so sorry about your husbands passing Lucilla. You gave him a wonderful life. It’s been 8.5 years now and I am my husbands only caregiver. Family was around for awhile in the beginning, but slowly dissapeared. My husband does not work or drive and relys on me for everything. Its a tremendous weight but I’ll carry it for both of us. (((Hugs)))

      Reply
  4. My 89 year old Dad fell and broke his left knee. He was visiting us in Seattle at the time. He was taken to Harbor View and had surgery done to repair it. His insurance refused to pay for rehab in Seattle so he had to fly back to San pedro, CA but a follow up found that the surgery failed so he had to undergo a second surgery to repair it and then he got a MRSA infection and was put on antibiotics for months. Another follow up appointment showed that a main tendon wasn’t functioning possibly due to the infection so he underwent a third surgery which was successful BUT he has a hole in his knee that isn’t closing on its own so he’s going to have fourth surgery to close it for good hopefully. I was pressured to move down from Washington to help care for my parents because my husband wanted a divorce. In the meantime about a week or so after Thanksgiving my Mom breaks her pelvis in two places and fractures a bone in her neck so she’s in the rehab center of a hospital.

    Reply
    • Darleen, I have been there with two parents in different hospitals at the same time and both in rehab at the same time. I felt like I might split in two at any time, but as hard as it gets it will get better at times. Hang in there, I certainly understand where you’re coming from. Wishing you all the best.

      Reply
  5. Thanks Sanora. I’m sure this applies to millions of other caregiver’s too. Caregiving is tough. Bitter-sweet moments.

    Thanks for your comment.

    Reply
  6. My 90 year old mother recently suffered her second heart attack and is now home on hospice care. She has an aide during the day but when I come home from work she leaves then it’s just me. I have a torn rotator cuff from a car accident I was in this past April. I cannot get the surgery I need because I would be in a sling for 4-6 weeks. The longer I put it off the worse it gets. Pushing my mom around the house in a wheelchair isn’t helping. Sometimes it’s just not possible to take care of yourself.

    Reply
  7. it’s true, the stress of caregiving can take a toll on one’s health. in just 2 years of being a full time caregiver to both my parents, i became anemic and clinically depressed, and developed a cyst as big as a tennis ball. but despite all these, i don’t regret taking care of my parents because it is the right thing to do.

    Reply
  8. very true and so is watching someone die a slow death in hospice.

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  9. bob, it sounds exactly what i am going through right now. thanks for sharing this insightful story.

    Reply
  10. Thank you for this beyond perfect description of caregiving. I would do it all over again, but it is hell.

    Reply
  11. The sites are meant to be support not meant to criticize or shame those who need placement or at a breaking point. My children and spouse, friends have watched me decline physically and mentally over the course. Each persons journey is their own and should not be judged. My choice is that I will always be there for my children but I don’t expect them or my spouse to care for me. It’s my responsibility in advance . I don’t ever want to rob another of their life. I gave my child life to live .

    Reply
    • Jacqueline, sorry if you feel judged. I’m simply stating some facts, and how it was for me, at times. Potential self help measures learned from some of my lack of understanding while being a caregiver, should be looked on as support, not judgement. I wish you the best.

      Reply
    • Bob Harrison not at all by your article. It’s others posting negative remarks about those like myself who are eventually going to need placement care. I just know first hand many caregivers who have to work or need placement face tremendous ridicule and judgement. I tend to advocate on our country to provide more programs for caregiving. I lost 4 people I know in 2015/2016. All of young age, sole caregivers of fatal heart attacks and the fifth took their own life because they were shamed for stating they could not do it alone anymore and the guilt they felt because it was their spouse. We need to keep articles and dialogues. Caregiver fatality and suicide topics are the taboo subjects never written or discussed and it’s so sad.

      Reply
  12. Some caregivers talk about the “privilege” and the “honor” of caregiving. You are wonderful people, but totally different from me. It is NOT and honor and NOT a privilege. It is my duty, and I am discharging it, but it is destroying my health. I do not expect to survive my ALS husband, now in his 13th year. When he was diagnosed, I expected him to live for 3-5 years and thought “I can do this.” When it became apparent he was going to make it to year five, I thought, “I can do this.” When he closed in on 10 years, I still thought “I can do this.” But completion of official (You ALS people know what I am talking about) 13th year is coming up, and I have burned out. I can’t do this, and yet I must.

    Reply
    • I understand Lee. My care giving was very intense, full of trauma and pain for 30 months. If I’d had to do it 13 years, I doubt that I could have survived, considering the illnesses that have hit me from the 30 months I was care giving. And over time it may or may not have become a duty, were I felt a bit bitter and afraid of what lied ahead for me. Your point is so valid and genuine. I wish you the best.

      Reply
  13. Amen………………………………….

    Reply
  14. How true this is……. I feel that spiral every day and I don’t see it getting any easier.

    Reply
  15. thank you so much for clarifying what we all know, but don’t do. I had ureter cancer, which is gone now, but I have constant stress and have gained 20 lbs. from bad diet and no exercise. Thanks for your encouragement to do more for myself. 🙂

    Reply
  16. Hard, yes. Very hard some days. But if you love the person, you just do it. Everyday is one more day you have that person with you.

    Reply
  17. I disagree – caregiving has been a gift of joy :). Why so negative people?

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    • I agree, but when you have little help, you sometimes start looking at the person you’re caring for as a patient rather than a loved one.

      Reply
    • Maybe it’s different when it’s your child. I’ve had zero help for 200,000 hours of his very medically fragile and complex life but he’s always been Zakki Blatt first. We just celebrated 200,000 hours of life this week.

      Reply
    • Very true because I would give my life for my child but for those in other types of care it’s fatal

      Reply
    • Stephanie, my wife Annie of 39 years, was diagnosed with a deadly cancer with no warning, and given 3 weeks to live. She survived 30 months. Sometimes it required 35 hour shifts from me, for more than a day at a time. She was so sick. I was her loving caregiver husband. To me, having a ringside seat watching her demise, torture and torment, was a roller coaster ride from hell. Every night I prayed for just one more day, then another and another. She was always living on borrowed time. Yes we lived, we laughed and we loved over those 30 months, but, always knowing our time together was short, and our best weapon we had to fight with, was our love for each other. Caregiver Syndrome and Caregiver Stress is real, and for their own personal reasons these folks came to a safe place, here, to vent. That’s a very good thing. It’s not about negativity, it’s about suffering. And caregivers do suffer. I know I did. Sounds like you’re a blessed person, and I’m very happy for you. But most folks are not that fortunate. The ones that speak out, well, some are pleading for help. And I for one want to hear their voice.

      Reply
    • I know I’ve been on this journey for 200,000 blessed never promised hours. My son has had 26 surgeries and many life threatening events. I have been with him 24/7 without a break and I know each day is a gift. I don’t allow myself to be negative because I’m so grateful for every hour. Too many of my heart mom friends, lung bleeding mom friends, stroke mom friends, seizure mom friends, primary immune deficiency mom friends, adrenal crises mom friends….Medically fragile mom friends children have lost their battles to these horrible diseases (Zakki Blatt has them all). His whole life has been on borrowed time. I’ve always felt caregiving is for some but not for all. I am lucky but it has not been easy…24/7 365 days a year for 22 years without any help from family is not easy…But every minute has been worth it. I know caregiver stress better than anyone but I also know that the stress of grief is way more stressful. In the very beginning I chose to be all in and that’s what has worked for me, for us, for Zakki and made it possible to stay positive amidst the stress to be my best self so Zakki can be his best self. We have had a beautiful 200,000 hour dance, two steps up, two steps back the whole way, extremely scary times medically and all the times in-between when his smile or laugh is all the assurance I need to keep on keep on for another day. I worry that negativity in a caregiver makes it extremely harder for the person being cared for. I wouldn’t want that for Zakki or anyone else that’s being cared for. I have family members that have horrible negative attitudes and it is exhausting being around them or even interacting in any way with them so I know how hard it is for some people to choose kindness, gratefulness, a non complaining attitude and grace. I just wish more people could really care from their hearts with unconditional love.

      Reply
    • You’re a good mom, and I for one am honored to hear about your care giving with love experience. You are a blessing to your child, and I wish everyone could feel as you. But we live in an imperfect world, the best we can do is maintain a balance. All voices must be heard and acknowledged. That’s what I try to to do. Be well.

      Reply
    • You are absolutely right…I just hope to inspire more people to care as you have and I am.

      Reply
    • Stephanie, you are an inspiration! I have issues with negativity and my aspirations would be to become more positive because being negative affects not only my well being but the one I care for and the ones I live with. Thanks for sharing your story.

      Reply
  18. Caregiver Site. …….
    Keep posting these truths (Y)
    No more sugar coating this.
    Thank you.
    Now people need to know what we go through.
    Whether our loved ones are home or in a home (Y)

    Reply
    • Thanks Diane. I’ve been blogging on here since late 2014. And I always tell people how it was or is. If I had to sugar coat my wife of 39 years, Annie’s, horrible cancer, and the hell she and I both went through on a daily basis, it would be such an injustice to her, and the people potentially helped through her story. In the caregiver world, fear of the unknown is a real problem. Broken bones, collapsed spine, broken femurs and ribs, can’t be sugar coated. What I’m saying is, if you have an understanding of a problem, you may have a solution before things go wrong. But the sugar coating, won’t allow for problems, that we both know happen all the time. I wish you the best.

      Reply
    • Thank you for responding Bob. Blessings to you. Prayers for you both. So true. If you kept all that you and your wife went through it would be an injustice. If we don’t speak no one can learn. Not one case is alike. I have learned that. I must be a spokes person for those who cannot speak.
      Namaste’

      Reply
  19. ” YES ” ………..
    Don’t have to write anything.
    We all know it!

    Reply
  20. “Well, I read all of the comments and I must say I don’t feel the same as some of you, I am 74 years old and I take care of my 42 year old daughter who is handicapped , she is at the 7 to 9 year leval. I have five daughters, two other of my daughters need me to over see their care. I feel so fortunate that I am still able to do all that I do for all three of them, they are my life and I would gladly lay down my life for them. The only thing about me going first is that I would worry so much about whom would care for all of them. If you would like to read about my handicapped daughter Christy just go to my web site at http://www.maryburchauthor.com

    Reply
    • Mary that is wonderful you have that outlook. I know with me I do have it but when it starts to interfere with my living and health and Mom is 95.5 years. I must change how I am doing it.
      Believe me if I didn’t have a daughter I can’t see, nor a husband, grandchildren, friends. I could continue. But I am isolated. I do have the most awesome help and I am fizzing out.
      So I say to you blessings.
      You’re the Angel.
      I know my limits.

      Reply
  21. I went through the same thing exactly, including shingles and cancer two years later, after my mom died from Alzheimer’s complications. However, I wouldn’t do anything differently. I have no regrets. End of life in America is just a terrible situation for everyone.

    Reply
    • Nor would I Juliet. Well, I might have ate better.

      Reply
  22. Wow! I’ve been taking care of my mom for 13 years and I’ve recently started worrying that she will outlive me. I’m not sure what will happen to her then.

    Reply
  23. oh friend, twice the role, please find time for what feeds your soul

    Reply
  24. Rollercoaster ride from hell is an exact description of what its like! You go through nightmarish things that you could never imagine, and you have no life of your own.

    Reply
    • Yes, & my husband is divorcing me so I was pressured to move out and here I am in a strange city taking care of my parents. No other job.

      Reply
  25. So very true, it made me cry. I now have health issues I’ve never had before

    Reply
  26. Oh I get a shower as i have to shave and shower my husband, so i am a soapy wet mess after I finish him, then it is my turn, however not the best shower because by the time I dress him, I have already done an aerobic dance.

    Reply
  27. Very true. You skip the dentist, the diabetic check ups, you sure don’t exercise right or eat right half the time and then there’s the basics like keeping up with your hair beyond throwing it in a pineapple bun with a scrunchy everyday.
    Then there’s your nails which look like you haven’t done a damn thing for two years. Your glasses/contact prescription is ancient and you need new ones desperately but need to get to the dr.
    When you have a chance to do any of the above … you put it off til another day in exchange for a shower and a nap.

    Reply
    • Wow that is so true Kim Crabbe Winn~as I look at my nails-yuk! My hair is always up w/scrunchy or clip! Just don’t seem to make time for myself~I’ve put my Mom as a priority. Everyday/night I say I’m gonna have myself a spa day(doing it myself of course) but do I ?? Nope. I really need to concentrate a lil more on my health & looks. Maybe tomorrow…

      Reply
    • Oh kim, you just hit the nail on the head. As i sit here feeding my mother I’m still in my PJs and dirty hair up in a scrunchie. If i run to the grocery store and on the 3rd day of not my washing hair and feel stinky, i just splash in some perfume and go. Lol

      Reply
    • KJ King Jenkins We should invest in fancy scrunchies or something. Anything!

      Reply
    • Debbie Lam Elin why do we need hair I ask myself on that third day

      Reply
    • Roxanne Roberts Isn’t it just the same for all of us no matter what are differences. We all need a haircut, a bath, an apple and to hydrate more at the very least… sheesh

      Reply
    • Sharee Aldridge Sadler I was gonna go on but I got depressed and decided to do something for myself cuz it’s my birthday. I’m making tea! And I’m watching a tv show all the way through no rewinding or starting over.

      Reply
    • I use to shower everyday and put on makeup, but now it is every other day or longer. I’m lucky if I comb my hair and brush my teeth everyday. How I look isn’t important because I don’t go anywhere and no one comes to visit

      Reply
    • You hit the nail on the head , so very true I couldn’t of said it any better

      Reply
    • Roxanne Roberts I’ve said “who cares because I don’t go anywhere and no one comes to visit” a million times…most days it’s a ponytail over non brushed hair, don’t get dressed until noon, and then it’s clothes you’d not be caught wearing in public. Oh, well back when I worked I hated getting dressed up, doing my hair and makeup everyday.

      Reply
    • Kim Crabbe Winn Thank you Kim for the funny comments…

      Reply
    • Kathy Walker McSchooler make up??? what’s that? LOL

      Reply
    • Roxanne Roberts me too and I’m in a city and don’t know anybody that I can hang out with.

      Reply

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