• La Shawn Wilburn - Family Caregiver & Founder of


Image Credit: JesusWalks.com

“Surely it was a good way to die, in the place of someone else, someone I loved.” ― Stephenie Meyer, Twilight

Did I intend to shock you with a lamb sacrifice? Yes. The full intent is to stop you in your tracks and have you to reflect. Family Caregivers are at risk for so many health issues that can cause serious side effects like...death. No one wants to talk about it because it's just not the "proper" thing to do seeing that some of us are taking care of loved ones in the "evening" of their lives.

For a moment I want you to think of something other than yourself.

How ridiculous does that sound we do every day all day, this I know personally which is why I'm so passionate about drawing attention to Family Caregivers who are neglecting their own self-care in an effort to care for their loved one.

Studies show Caregivers are at great risk for health and mental health issues, "...of relatives with dementia enrolled in an Alzheimer's disease patient registry (ADPR). ADPR wives exhibited the highest prevalence of psychiatric symptomatology (63%). However, 39% of husbands, daughters, and daughters-in-law reported significant psychiatric distress, followed by 28% of other family members and 25% of sons. Two-thirds of wives, half of husbands, and approximately half of daughters, in-laws, and other family members with symptoms were seeing a counselor but only 10% of sons were seeing someone. Caring for a spouse or parent is a significant risk factor not only for depression but also impaired life-functioning due to PSs in all primary caregivers. (PsycINFO Database Record (c) 2012 APA, all rights reserved)" That study was for Alzheimer's caregivers alone. http://psycnet.apa.org/

What about mental health caregivers? According to: http://www.ncbi.nlm.nih.gov/

What About Your Mental Health?

As Caregivers we find ourselves struggling with our own mental health. What I find most challenging with trying to communicate the importance of self-care when I speak to caregivers is denial. Denial is the caregiver’s creed almost. Denial helps the caregiver to avoid experiencing emotions of the negative impacts that caring for a loved one who has a serious mental illness, long term disease, debilitating disease, or terminal disease.

I have spoken with Autism caregivers who become hostile if questioned about the amount of guilt or grief they feel about their caregiving journey and dementia caregivers who become defensive about being asked about the last time they had a break. I wondered about anger being the immediate response coming from a simple inquiry that one would under different circumstances may see as an act of concern. I wondered if caregivers understood the reaction of "anger" was a sign there was something wrong. So I asked. Sometimes there was the "lightbulb just came on" look on the face of the caregiver and other times there was the cursing and rush to get from out of the presence of the lady invading their personal space.

When speaking to caregivers via social media the sentiments were often very much the same with the exception that some were honestly able to acknowledge their frustration and anger about not having additional help, relatives who were shirking on their duties to assist so that the primary caregiver could get the breaks, and the caregivers who had neither family or friends to help them. Many were suffering with their very own health issues either pre-existing or brought on by the stress of caregiving.

There are so many caregivers who are diagnosed with Anxiety and Depression as well as other secondary disorders. Caregivers for loved ones with Psychosis and diseases or disorders that have paranoia as a symptom oftentimes become a victim to secondary psychosis themselves which is why maintaining an outside connection to other family members, friends or caregivers is so very important. It's also good to seek out the assistance of a therapist for yourself if you are caring for someone with disorders such as Bipolar, Schizoaffective, and Schizophrenia. Dementia caregivers should seek the assistance of a therapist or counselor as well.

I once spoke with a caregiver in a hospital emergency room who was brought in via paramedics because she'd neglected to take her insulin. She was venting to the nurse taking her vitals about having to care for her mother alone, who was also diabetic, and how her siblings wouldn't help especially a brother who lived close by. She'd left her mother in the care of a neighbor, who found her in the yard unconscious, and wanted to know how long before she could be released to go home. As I sat in the room with my son who was being admitted to the hospital, I sat wondering how she could give insulin to her mother and fail to take her own. I wondered why she didn’t ask the neighbor who was in charge of her mother’s care at that moment could not be solicited for help before that day. How I wondered could someone know they need help and still not seek assistance?

The Martyrdom Complex

During my research I found what is called the "Caregiving Martyr Complex" defined as, "uncomplainingly, heroically doing everything yourself". As I researched more about this complex I discovered at the root of it is guilt. As parents we feel guilty for not being able to cure or alleviate the symptoms of our children be it young or adults. As adult children we feel guilty for either how much our parents gave to us as young children or for the strained relationship as a result of parental neglect; caring for a parent who at one time was neglectful. Guilt can lead to caregiver stress and lots of it. Feeling ashamed for putting parents into nursing homes to be cared for more thoroughly becomes a dreadful thought. Who wants to be viewed as neglecting or worse yet abandoning their parents? Some caregivers fear being seen as incapable of caring for their parents effectively and therefore see asking for help as a failure on their part. All of these "dark emotions" lead to depression and despair, causing the caregiver to suffer most times in silence and isolation.

What can you do to get over your fears, feelings of guilt, feelings of shame, and inadequacy? Begin by remembering you are human. What you are feeling are natural emotions and you should not be afraid to talk about them. How do you see to your mental health? By setting up an appointment to see a therapist, keeping your appointments, and doing the work to feel better.

I often tell my caregivers to seek the help of a therapist for assistance in processing negative emotions. Sometimes as caregivers we don't want to talk to the family and friends around us at first. Talking to a therapist is a "safe place" it allows you to speak openly and honestly about how you feel, without fear of judgement. Once you get to a place where you can "feel the emotions" without the guilt you experience a great deal of freedom.

How do you get past the Martyr complex and guilt? Reminding you of the following:

  1. Feeling resentful because you are spending so much of your life caregiving is normal; it does not mean you resent your loved one.

  2. If our loved one could they would choose to be healthy and not require our assistance.

  3. You are doing a service to your loved one by providing care in a relaxed environment such as their home or ours, and that allows them to maintain their identity and dignity. Those are priceless gifts.

  4. The situation you are all in is tough and tough times call for sticking together, loving harder, being compassionate, and patient both with yourself and your loved one.

  5. Other caregivers feel just like you do. Don't believe me? Spend some time on a site where caregivers talk about their experiences like MDJunction.com

  6. As much time as we spend with our loved one we need half of that time to recharge. So if you are with your loved one 12 hours a day, 7 days a week, that is 84 hours so you need recharge a minimum of 21 hours or 3 hours a day. You don't have to take it all at once and it's possible I can show you how. (#BreakingTheTimeBank)

What are some things you can do to be Proactive?

  • Start a support group

  • Join a support group - Online and in person. Peer support is priceless

  • Set time aside every day for things you enjoy

  • Take small breaks throughout your day

  • Start journaling

  • Get on the phone with a friend and chat

  • Find activities that are fun and that both you and your loved one can enjoy

You can really change the way your caregiving day goes. You can really wake up looking forward to "A Day In Your Life".

If you or someone you know are having difficulty in the caregiving journey reach out to us and we will gladly assist you in ways you can improve the quality of your life and your caregiving journey.

#Caregiving #FamilyCaregiver #MentalIllness #MentalHealth #Guilt #Shame #MartyrdomComplex #Depression #Anxiety

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