• Question for Caregivers.

    Asked by waterrunsdeep on Tuesday, September 15, 2015

    Question for Caregivers.

    As a caregiver, how do you deal with guilt over caring for yourself? My health has been declining and I am struggling to even take care of myself. Who's going to help me? I have to do it for myself, I'm very aware, but it seems everything always comes down to me. I feel frustrated that I have to do everything, yet guilty when I need to do things for myself, even non-luxuries. Help.

    8 Answers from the Community

    8 answers
    • geekling's Avatar

      There ought to not be guilt over caring for yourself. When I was a caregiver, it was that there was no time left for me, not that there was guilt.

      I was caring for my Mom, running a business, carrying an undiagnosed cancer tumor, breathing in hidden toxic mold spores, overseeing the care of my Aunt and just plain exhausted.

      I had respite a few times per week for a few short hours. Do you? There are courses you can take in caregiving. The County offered one which sent a companion to the home while you were being trained. I had an aide 2x/week (which time increased later) and had my Mom in a daycare center 2x/week also. That did not always amount to as much respite as one might think. You worry about the competence of help. I came back one afternoon to a burnt odor in the house. The aide told me she had accidentally burnt something in the oven. Since I had to shake her shoe to awaken her to answer my query, I fired her on the spot explaining that Mom was capable of burning the house down without any assistance.

      It can take some time to find good respite workers. If they move in before their charges, you start from scratch to find someone else.

      My best suggestion is to get help. Neighbors, church groups, paid assistance, whatever.
      It is not uncommon for a caregiver to predecease their charge. Dont be in that statistic.

      Best wishes

      about 6 years ago
    • Ejourneys' Avatar

      I agree with @geekling. I am caregiver to my partner, who has lesions in her prefrontal cortex (cognitive/emotional dysfunction) from MS, and have been supporting her fulltime since 2001, including years of working double and triple shifts. Last year I was diagnosed with breast cancer, completed active treatment (lumpectomy/chemo/radiation) in December, and am now on pills to fight against recurrence and dealing with cancer's "collateral damage."

      I think I last felt guilt in 2009, two years before my partner actually received a definitive diagnosis of a disease she has probably had since 1982 (then misdiagnosed). I had gone through two years of therapy to learn coping skills. Most valuable to me was learning that I was not imagining things and that others saw the same irrational behaviors in my partner that I was seeing. Since I had no legal standing, I could do nothing in terms of getting help (which my partner insisted she didn't need) until she needed surgery for a different reason and I was able to finally get her to sign the POA that for years she was "going to get around to." Then I worked on getting a medical team together.

      Getting a diagnosis (and working through interim misdiagnoses) put us through two years of XXX, during which time I neglected my own health. My weight ballooned, I slept poorly, my moods were shot. I knew I had to do something because my own functionality was decreasing. It took fifteen months of sustainable diet and exercise for me to drop 51 pounds and reach my goal weight, which I have now maintained for close to two years.

      Three months after I reached my goal weight, when I felt at the the height of health and fitness, I was diagnosed with breast cancer. If I thought my world had contracted to a tiny sliver through caregiving, cancer shrank it that much more, especially during chemo. Prior to surgery I checked with a home health care agency in case I needed backup. I wrote memos to hospital staff detailing my partner's needs because I didn't want her freaking out while I was in surgery. (Hospital staff was wonderful.)

      I am in Survival Mode, but I also live as best I can, whether that is through writing, drawing, sitting in nature, listening to music, etc. I had to set boundaries as a caregiver and I've had to set even more boundaries as a cancer patient. I've also had to make hard choices with respect to my partner's care when our needs were in conflict. It came down to: Which care is more crucial, right now?

      Self-care is a necessity. If I had not taken care of myself prior to my diagnosis, I would have been in much, much worse shape. I have neither the time nor the energy for guilt because guilt wastes both. I view guilt as an unstated "should" and I have learned over time to dispense with the "shoulds." It's a hard habit to break, but it can be broken.

      These sites have helped me -- with resources (including resources in self-care) and validation of my caregiving experience:

      Caregiving.com: http://www.caregiving.com -- very active grassroots network. Holds #carechat tweet chats on alternate Sunday nights. Has podcasts, webinars, forums, groups, chats, and other resources.

      The Caregiver Space: http://thecaregiverspace.org/ -- another excellent grassroots network. Also has webinars, forums, etc.

      Caregiver.com: http://www.caregiver.com -- more corporate than the other two but also a good source of support. Sponsors one-day Fearless Caregiver Conferences across the US, free to family caregivers.

      This site may also be helpful:
      Help for Cancer Caregivers: http://www.helpforcancercaregivers.org/

      Please take care of yourself as best you can and realize that dispensing with guilt -- and also not taking things personally (I tell myself it's the disease talking) -- does not mean that you care any less. Your well-being is crucial to care.

      about 6 years ago
    • waterrunsdeep's Avatar

      Thank you both for such amazing, honest answers.

      about 6 years ago
    • cam32505's Avatar

      I was caregiver for my mother for many years, when I developed cancer. Luckily for me, she fell the day before my surgery. She was taken to a hospital, then nursing home for rehab. That bought me some time to take care of myself. I brought her home when I started radiation because my doc acted like it would be a piece of cake. Well, I couldn't breathe when I got her home and they had me come in for an I.V.. It turned out months later that I had blood clots in my lungs, so I was lucky I didn't die because they didn't even check me for that. Anyway, sometime later, my mother was offered some treatment or hospice. She chose hospice, partly because she could see that I could no longer care for her. So, things just work out the way they're supposed to.

      about 6 years ago
    • rebelkate's Avatar

      You shouldn't feel guilty - get some help for yourself if you need it. During my first experience with cancer, my husband was diagnosed with a brain tumor and ended up in the hospital in a diabetic coma - our first indication the otherwise very fit man had diabetes. Fortunately the tumor ended up being minor and benign - but the diabetes was pretty serious, and we've had to take turns taking care of each other and getting help when we need it. Once my husband was out of the woods, I was happy to be able to help him for a change. It became a rather dark joke we share - I was in hospital at Christmas and he was there for me and a year later he was in hospital at Christmas and I took care of him. We decided the patient always gets the better bed.

      about 6 years ago
    • HeidiJo's Avatar

      Don't feel guilty. My husband was my primary caregiver, and he said he would not take a break because I couldn't. I said, " that's very sweet, but if you get burned out, then you are of no help to me" So I arranged for some of my friends to sit with me while he had some time away. It helped a lot. Take care of yourself!!

      about 6 years ago
    • amontoya's Avatar

      Your health is just as important as his. Please take care of you. I'm not on here very much anymore so if you want to chat I'm always available on fb. ❤️

      almost 6 years ago
    • KimberlynJ's Avatar

      I know how you feel. It's so much responsibility, it's as if you take your eyes off the ball and something might get by you that's important. I've been caregiving for almost 2 years and hit a wall about 3 months ago. I had to call in reinforcements, hired a friend to drive my brother to appts, reduced my expectations of myself, let my house go to the dogs... And although I hated to do it, there was NO choice. I was losing myself, my energy was GONE and I was becoming morose even on strong anti-depressants.

      I've come to believe there is a walk through the valley for almost all of us at some point in this life. The fact is though that it is a walk THROUGH the valley. Don't stay there, don't curl up and die there, don't keep looking at the big mountains ahead. Just get help to help yourself up... and WALK. One day at a time. TAKE CARE OF YOURSELF because God has a plan for your future and never, never, never feel guilty for being just one little person with herculean tasks on your plate and not being able to succeed at everything!!! :-)

      almost 6 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy

    Read and answer more embryonal carcinoma questions.  Also, don't forget to check out our Embryonal Carcinoma page.