Who Cares for the Caregivers?

Is rest a distant dream for you?
Photo credit: ecooper99 ~ WANA Commons

Welcome to Thoughty Thursday! This is the day of the week that y’all get to be privy to whatever thoughts are kicking around in my brain.

Today, the caregivers are on my mind.

I have some experience with the process of taking care of others to the exclusion of myself and I’m watching close friends go through the process now.

There’s my critique partner who’s supporting a son with lymphoma and an online friend who’s fighting a workman’s comp suit while trying to save her home. I have another friend whose son is a such a high-functioning autistic that he doesn’t qualify for the services he needs. AND she was just diagnosed with MS.

In short, I’m watching people struggle.

It’s not just women who find themselves in the position of being caregivers by any means, but I’m seeing a trend amongst the female caregivers I know:

These women forget to give themselves permission to set the load down periodically to care for themselves.

I just saw an interesting book on Amazon by Jai Pausch, the wife of Randy Pausch, who many of us remember as the author of The Last Lecture. Jai’s book, Dream New Dreams – Reimagining My Life After Loss, looks like a must-read for the caregivers of cancer patients.

Quick review:

The author would like health professionals and society as a whole to be more
“concerned about the people who struggle to carry the medical burden while also
meeting everyday demands.” She sees the need for a “network at every oncology
clinic” to assist those who are trying to manage complicated cancer care at
home.

Jai and Randy were lucky to have concerned family and friends, a good
income, and access to the excellent physicians. However, not everyone is so
fortunate. There are too many relatives of cancer sufferers who feel isolated,
bewildered, and overwhelmed with responsibility. Jai asks, “Who will care for
the caregiver?”

This issue isn’t limited to cancer. There’s all kinds of caretakers.

What about:

  • Parents of special needs children who are fighting for services and emptying their bank accounts to help their kids.
  • Children of aging parents, who are discovering how difficult it is to find cost-effective assistance and care.
  • Those on their own who are struggling to overcome medical issues that seem insurmountable.

The wear and tear of providing this kind of ongoing support for a loved one takes over your life (as the caretakers among you know). It will suck the joy out of your daily existence if you allow it. Forward progress is slow and the all-around guilt is crushing.

My experience as a caregiver:

I lost my mother when she was 65 and I was 35, after fighting her medical issues for five years.

Five years of illness and repeated hospital visits…
Five years of major setbacks and new hope for recovery…
Five years of side effects that were worse than the medicine…
Five years searching for a doctor who would listen and be a proactive part of her team.

They were the longest five years of my life.

I don’t have a magic answer for you caregivers, only an encouragement to:

  • Reach out to others in your position. Especially with the internet, there’s no reason to suffer alone. Even 8 years ago, when my mom passed, there were resources and support groups that we found on the internet that were a tremendous help.
  • Take time out for yourself each day. Even if it’s only 15 minutes with a book or a quick walk around the garden, you will feel better if you do something for yourself. The person being cared for loses perspective with all the pain and agony they’re enduring. In my experience, they rarely mean to be selfish of your time, they’re just SCARED.
  • Allow others to help. Many caregivers have people in their circle that will help if asked. They are wringing their hands off to the side of your own personal hell, wondering if there’s something they can do. It’s hard to stop and explain to them what’s needed, but that doesn’t mean they can’t sit with your loved one while you run errands or take a bath.

In my humble opinion, as someone who has worked professionally with the people providing support and as a part-time participant in my own mother’s care, it falls to us to protect ourselves.

The caregivers need to carve out a safe space for themselves so their spirit doesn’t get sucked out by the care they give to others.

Do you have experience being a primary caregiver for someone in a high-need situation? Were there strategies you developed that helped you stay sane? What advice would you offer to others in the same situation? Enquiring minds always  want to know these things here at More Cowbell!

Jenny

About Jenny Hansen

Avid seeker of "more"...More words, more creativity, More Cowbell! An extrovert who's terribly fond of silliness. Founding blogger at Writers In The Storm (http://writersinthestormblog.com). Write on!
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31 Responses to Who Cares for the Caregivers?

  1. I’m really sorry to hear about your mother, Jenny. Thank you for writing about this really important topic. As a mother of toddler twins I recommend taking care of your physical fitness. It helps you to take care of others better and gives you good energy. Even a simple walk can give you a clearer mind and make you feel better. For me it’s a combined me time and taking care of myself.

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    • Jenny Hansen says:

      Sweet, Reetta…

      My mom passed back in 2004 so the pain isn’t nearly so acute now. But I’ll never forget how it felt at the time. Exercise is an excellent point, and it’s almost always one of the first things I drop. Thanks for the reminder!

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  2. You are so, so right with this. For 7 years we helped care for my husband’s father battling Cancer of the brain. A year after his passing, his little sister died unexpectedly, which sent his mother into a mental health tailspin that lasted a couple of years during which she was barely functioning. We had a short break of about 2 years, then my father was struck by Cancer in the same month my mother was diagnosed with a rare neurological disease. My father has died, but my mother is still with us and we are still fighting that fight. We’ve had a total of 16 out of our 18 years together fighting these fights, the last 4 with our own child to care for as well. And it is exhausting, and while a lot of help is offered early on, I find it dwindles over time and we are left juggling and budgeting our time within an inch of its life. If we don’t ask, we fly on our own. Thanks for a great post.

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    • Jenny Hansen says:

      Oh my Lord, Lynette! SIXTEEN years?! That’s a ton of caretaking. My heart goes out to you. And yes, people are busy and figure you can handle it, so it’s important to reach out so you don’t get worn too thin.

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  3. geostan51 says:

    I could not agree more with your point. It is well taken. I have found, with my chronic COPD, as well as a recent, very serious, bladder infection, that care givers can become absolutely indispensable. If it weren’t for the rapid response to all of my needs recently, in my physical emergency, I’m certain I would not have made it thru. Also, the prayers of all the people who love me and care about me, were most effective. Oh yes, and we always need more cow bell, or call bell, or something like that.

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    • Jenny Hansen says:

      Wow, you have been through it lately. I too believe in the power of prayer, but helpers are key. My MIL had COPD and the medicines are so much better than they used to be, but it’s still quite serious. I hope you continue to mend.🙂

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      • geostan51 says:

        Jenny, how kind of you to think of such nice things to say. At the moment, I’m only requiring less than normal physical activity. I’m taking it easy Other than that, I’m oxygenating fine, and hope to be up to my usual tricks soon. The infection in my bladder seems to be gone.

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  4. I still have all four of my grandparents. This is a huge blessing, but my family is also starting to feel the strain of caring for four people in their 80s, especially after the car accident one set was in this spring that left both of them unable to drive. Even divided among a few of us, it’s difficult and scary trying to keep up with the increasing level of care needed.

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    • Jenny Hansen says:

      Marcy, how lucky for you to have so much of your family still intact! Hubby and I have no parents or grandparents left, though we do have tons of aunts and uncles to help wiht the loss.

      Are y’all able to hire a part-time senior helper for your grandparents? Just to help them get around and get errands and socializing done a few days per week? Or do you have any sort of “senior bus” system? We have that here and it is tremendous for the seniors that can get around, but just not drive.

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  5. Great column Jenny. It can be really tough out there to be the one everyone depends on. I’ve always loved the classic: In an airplane you have to put your oxygen mask on first, and then the child’s. It’s so true. If you don’t take care of yourself, what will happen when you are unable to help and the other person still needs care? With aging parents and kids, I’m also in the sandwich generation. Luckily, my parents are in a lovely place, but I still have to help out a lot. Someone has to watch the caretakers, make sure everything is going smoothly, and fill in the gaps. Thank goodness for writing!

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    • Jenny Hansen says:

      You’re so right, Jessica – we forget to put on our own masks first. Especially as moms. We’re encouraging our one pal to keep writing because it does help her stay sane and feel like she hasn’t lost all the parts of her that make her happy.

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  6. A lovely column and filled with truth. It is very hard to be a caregiver. Big hugs on the loss of your mother. I’ve spent so much time in doctor’s offices and hospitals in the last 7 years, that I don’t want to go get my checkups. I know I need to do it and its on my list, but just thinking about going — when i feel fine for the most part — makes me want to run to that lovely beach in the picture. Not sure if I am ticking time bomb, or very blessed to have the good health to help my family.

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    • Jenny Hansen says:

      Pauline, I’ll tell you the same thing your mother would have: get your butt to the doctor!! Just for a check-up and basic tests so you can stop worrying about it. (Says the gal who’s overdue on her mammogram…)🙂

      I want to go live in that beach bed too!!

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  7. Karen McFarland says:

    Lymphoma, Autism and MS? Okay, I have no problems.

    I do feel for you and others who have cared for their loved ones. It’s extremely exhausting. An ongoing illness takes its toll. My husband and I lost three out of four parents in death over a span of three and a half years. My Dad was diagnosed first with lung cancer. He died within four months. One month later my husband’s parents announced that his father had prostrate cancer. It spread to his spine. He died within two and a half years. Then my mother-in-law died one year after that from kidney failure. It was crazy. I know. I was the care-giver. The recovery from an emotional experience like that takes a long time. And it can feel like your life force is being sucked out of you. It’s really a mild form of PTSD. Yet, what I find helpful is taking stock in the more important things. It makes you appreciate the simple things. It adds more meaning to your life.

    And you are right. You have to take time out of your day to take care of yourself. But sometimes, in some instances, it can feel like it’s not enough.

    Thanks Jenny for such an inspiring post!🙂

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    • Jenny Hansen says:

      You’re welcome, Karen, and I think problems are all about perspective. When we’re in the middle of them, they seem overwhelming. I hear you on the PTSD analogy.

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  8. You are absolutely right, Jenny. To give quality care to those who look to us for assistance, we need to make certain we have opportunities to recharge our own batteries. Reading everyone’s comments makes me want to somehow initiate an enormous group cyberhug!

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  9. emaginette says:

    I agree. Caregivers need to make time for themselves. One friend of mine says use the calendar. If its the first she takes one minute. If it is the the 30th she takes 30 minutes. It works for her and she needs it.🙂

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  10. I’ve been very fortunate. My dad didn’t need much in the way of caregiving before he died. My mother has been in assisted living for 4 years, but her resources pay for it. I mainly pay her bills for her, visit her four times a week and take her to doctor & dental visits – and she doesn’t have to see them as often as I do. I can really feel for those who have real burdens of care, though.

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  11. Julie Glover says:

    I have not been through this myself, but my heart goes out to those who have, including you of course. I have heard from others that long-term caregiving of your parents feels like extended grief–as you deal over and over with the five stages and watch your loved one grow less able to care for themselves. I can only imagine the hardship of a parent who must care for a disabled child. I have friends who do that each and every day, and I admire their perserverance.

    As to counting on others, as an outsider I really don’t know what someone needs unless they tell me. But I’m willing to step in and help as I can. It’s good for caregivers to remember that people around them may feel just like that.

    Thanks for sharing your wisdom, Jenny.

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    • Jenny Hansen says:

      That extended grief is it exactly, Julie! It’s very wearing, and very guilt-inducing. Thanks for taking time to pop over and give me neat stuff to think about.🙂

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  12. Jane Sadek says:

    Great post. I’ve been on the caregiver treadmill for a while – nothing like what some of these folks have been through, but it gets old, nonetheless. You wish for a morning where it’s not the first thing you think of. You wish for a night out, when you don’t have one ear cocked for your phone. Then you think of what it would take for your wishes to come true and you’re glad they don’t.

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    • Jenny Hansen says:

      Jane, don’t minimize what you’re doing. It is very, very wearing to be a caregiver.

      When my mother passed, it took me two months to be able to turn off my phone at night. I hadn’t had my phone off for any reason in almost 5 years. It took even longer for me to stop keeping my earpiece on that would ding in my ear when my phone rang. It’s amazing the things we learn to do when our loved ones are ailing.

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  13. Sharla Rae says:

    Great post Jen. As my son’s care giver, there’s times I feel sorry for myself and then I’m mad at myself for being such a whimp! And yet, if I weren’t with my son, I’d worry for him even more. I look around MD Andersen at all the smiling cancer patients and their courage puts things back into perspective.

    And yes, it’s hard to ask for help. People offer but then when the time comes & they are gently asked they back off. It’s discouraging but I understand too. Some want to help but just can’t for one reason or other.

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    • Jenny Hansen says:

      I wrote this post partly for you, because I know you get discouraged. It doesn’t make you a wimp. And cancer patients are a wonderful breed. I grew up on the Oncology floor at Cedars Sinai Med Center in L.A. (my mom was the head nurse) and it really shaped how I feel about illness and support for the caregivers.

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  14. {{hugs}} to the caregivers out there.

    We’re gearing up for the care of aging parents — we aren’t there yet, but the signs of need are showing up — by either moving in with them or them moving in with us.

    One thing I can say as a former Respite Co-coordinator is check into your local non-profits, Area Agency on Aging, Community Action Team, United Way, etc. It’s not the final answer, especially with funding so tight these days, but it may offer caregivers some time for yourselves. As a friend to many caregivers I remind you to ask for what you need, we see the struggle but have no idea where help is most needed without you telling us. It’s a lot like not knowing what to say when a friend’s loved one passes. Sometimes just being a shoulder to cry on is all that is needed. Sometimes it’s doing the grocery shopping. Sometimes it’s kidnapping that friend for a few hours and a lighthearted movie. Or sitting with a child/parent and reading a book to them while the caregiver soaks in the tub.

    Fabulous post Jenny!

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    • Jenny Hansen says:

      WOW, Raelyn! You are a plethora of information on this topic. This is fantastic. Thank you for taking the time to list all that, and good luck with your parents. It’s definitely a transition.

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