I’ve been a caregiver for more than 18 years: nine years as my mother’s caregiver, seven years as my twin grandchildren’s guardian/caregiver, and two years as my disabled husband’s caregiver. This experience has taught me that caregiving isn’t for wimps. We need physical strength and mental courage in order to be caregivers.

Caregiving is challenging.

Time question. Although you understand your loved one’s sudden or chronic illness, you aren’t a fortune teller, and don’t know how long she or he will live. Therefore, you don’t know how long you will be a caregiver.   

Life on hold. Many family members put their lives on hold in order to become caregivers. Dreams that seemed so clear a few weeks ago begin to fade. Gail Sheehy, author of Passages in Caregiving, describes caregiving as “a collision between conflicting stages of life.” (p.12 )  

Financial worries. Many caregivers have the same question, “Will I have enough money to pay the bills?” Health insurance and government regulations make it difficult to answer this question. And the bills keep coming.

Caregiving has pitfalls.

Anticipatory grief. Everyone experiences this grief—a feeling of loss before a death or dreaded event happens—yet many have never heard of it. Feelings of sadness and loss can take over your life. You feel like a black cloud is following you. Worse, people ask why you’re grieving if nobody has died.  

Burnout. According to the American Institute of Stress, burnout is a progression of feelings that goes from enthusiasm, to stagnation, to frustration, and to apathy. Never-ending caregiving tasks contribute to burnout and it develops slowly. Eventually those with burnout lose their compassion.

Compassion Fatigue. This is a form of burnout and it comes on suddenly. You’ve hit the caregiving wall and don’t think you have the strength to do it anymore. In contrast to burnout, those with compassion fatigue retain their compassion for others.

Ambiguous loss. Pauline Boss, PhD, pioneered the research on this topic and coined the term. According to Boss, ambiguous losses lack a clear ending. As she writes in her book, Loving Someone Who has Dementia, “Loving a person with dementia in real life . . . has no clear ending, and that is our real challenge—to stay empathetic and connected in a real life story that remains ambiguous.” (p. 84)

Caregiving affects caregivers.

Fatigue. If you get up in the night to help your loved one, getting enough sleep is impossible. Interrupted sleep isn’t restful sleep. Before you know it, you are in sleep deprivation.

Stress creates health problems. According to a Mayo Clinic website article, “Stress Symptoms: Effects on Your Body and Behavior,” stress can cause headaches, muscle/chest pain, upset stomach, anxiety, over-eating, under-eating, and other things.

Caregiving is a different journey. You may think caregiving is a linear journey, but author Gail Sheehy sees it differently. As she notes in Passages in Caregiving, “It feels like we are going around in circles, thinking we have resolved a crisis only to have it return or be superseded by a different, unexpected crisis.” (p. 21)

 

How can we cope with these factors?

We can take care of ourselves, ask for help, keep a sense of humor handy, model kindness and respect, continue to learn, fine-tune communication skills, and savor the time we spend with loved ones. Caregiving is love in action—always has been, and always will be.

Written by Harriet Hodgson
Rochester resident Harriet Hodgson has been a freelance writer for writing for 38 years, is the author of thousands of articles, and 36 books. She is a member of the Association of Health Care Journalists and the Minnesota Coalition for Death Education and Support. She is also a contributing writer for The Caregiver Space website, Open to Hope Foundation website, and The Grief Toolbox website. Harriet has appeared on more than 185 radio talk shows, including CBS Radio, and dozens of television stations, including CNN. A popular speaker, Harriet has given presentations at public health, Alzheimer’s, caregiving, and bereavement conferences. Her work is cited in Who’s Who of American Women, World Who’s Who of Women, Contemporary Authors, and other directories. All of Harriet’s work comes from her life. She is now in her 19th year of caregiving and cares for her disabled husband, John. For more information about this busy author, grandmother, wife, and caregiver please visit www.harriethodgson.com

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35 Comments

  1. And after a while ,you are just very tired and want a little life for yourself ,,,Alzheimer’s cruel.

    Reply
  2. And faith in God to give you the strength to be there for each and every one day or nite Never know we might need them someday

    Reply
  3. Great article!! This author summed up so many of my feelings that I didn’t have the words to explain it.

    Reply
  4. How true. The hardest thing you will ever love.

    Reply
  5. I agree and I see most articles are about taking care of elderly parents and spouses. Would like to see some on parents. Parent who have done it since the birth of their children for 20,30 and 40 years. Parents who know the time is limited to their own ability to continue doing so because of their own age and failing health. The struggle and heart ache one faces in that situation are real. Parent’s who have little no no resource to keep them out of facilities. When there is no one else there to help. I’m talking sever physical disabily and nonmobile children. The heart ache and struggle is real. Unlike children caring for aging parents who will pass, we fear our passing and leaving our children.

    Reply
  6. Not for the weak-minded for sure…Have to become thick-skinned, but always show compassion…If you can be a caregiver…you can do almost anything…you become a real badass.

    Reply
  7. Most difficult but also most rewarding thing I’ve ever done..First was my mom then my husband. ..I’d do it again in a heartbeat.

    Reply
  8. Lorne Sobczyk I Agree..I’m a caregiver to my daughter …

    Reply
  9. Not for the faint of heart, absolute truth. A life that’s not for everyone. 25 years, that’s all I had with my Son. 25 years I cared for him, loved him, gave all of myself. 6 months, that’s how long my arms have been empty, how long I have had no schedule, nothing to do at all. It’s a new world for me now. One I’m not comfortable in. Trying to figure out who I am in this new world is way more anxiety ridden then caregiving ever was (for me). Funny….even my body hurts more now than it did when my boy was here with me. I overlooked so much because he needed me. I miss my Mikie.

    Reply
  10. Just want to thank my daughter for taking care of me I gateful every day for her some day’s I know it can be stressful because I worked in the field of caretakers thank god for making her song to do this God bless her alwaysl she does so much

    Reply
  11. Like they say at San Francisco General Hospital. It’s as real as it gets!

    Reply
  12. True. Caregiving is laughing, crying, joy, sorrow, frustrating, rewarding, depression, enlightening, overwhelming, exhausting, emotional, fearful, empathy, exasperating, giving up, getting, all comsuming, questioning, awakening, anger, blessings, frustration, love and so much more

    Reply
  13. I feel for all of you. But when it’s over the empty lost feeling is another tough thing to deal with. And the feelings I should have been more patient I should have done more. I wish I wasn’t so stressed and exhausted the whole time. And angry at others in the family for not being there for my parents and myself when they were needed. Just glad I had the quality time with my sweet mom the last month of her life. She was very kind, understanding and appreciated all of my efforts. Thank god for those conversations it is a blessing to play them over and over in my mind. Otherwise I would really be an emotional and mental mess.

    Reply
  14. Going on 24 years of caring for my mom. The last 5 years have been the hardest as dementia is getting worse & she is losing her eyesight to macular degeneration. Yesterday she told me we need to find a place for her to go, easier said than done with the prices thru the roof.

    Reply
  15. No its not ,and if you find you are not cut out to do it, Please reach out to someone who is !

    Reply
  16. You got that right,Deb. Then you get to deal with the anger issues and abandonment from the siblings

    Reply
    • Abandonment and anger. We’ve certainly got that.:(

      Reply
  17. It is certaily a tough job but at the same time rewarding, just hard tyo see that at times.

    Reply
  18. I’ve been a caregiver for 10 or so years. First for my mom. Now for my dad. Although it has become my way of life, and glad to have been able to keep them in their own home. I often secretly wish for freedom.

    Reply
    • After its over that freedom don’t really mean alot, myself im kinda lost

      Reply
    • Karen Duncan Ditto that! Took me about 2 years to sort of feel normal again!

      Reply
  19. Being a caregiver you only have one choice

    To be strong

    Reply
  20. I am a caregiver for my husband. We have been married for 50 years.He had his first stroke 9 years ago. He also has multible health problems,including dementia.He can no longer talk .I feed ,bath, and dress him.now he stays awake for 30 plus hours and doesn’t want me out of his sight.I take care of him by myself.also he isn’t able to walk and I have to lift him.I always read about all the caregivers, It gives me strength to read aout other caregivers .God bless you all.

    Reply
    • Despite his failures, I think your husband sense your caring and love.

      Reply
  21. Is it different for parenting a special needs child or children? It seems so much the same expected results or feelings it’s still scary to be parent and caregivers at the same time I’m not doing anything super human it takes no powers it’s what has to be done and grief is grief even when it hasn’t happened some day it most likely will….it’s scary knowing…

    Reply
  22. Thank you for your thank you, Peggy. I wish you laughter, peace, and a sense of purpose in the days to come.

    Reply
  23. Thank you for the article and thank you for this website. It has helped get through some difficult days.

    Reply

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