Living: the ultimate team sport

Caregiving: Grief, Guilt, Exhaustion, and Discrimination.

Posted on December 2, 2012 Updated on September 18, 2016

Managing Caregiver Guilt, Grief and Exhaustion – AARP.

Sally Abrahms’ article linked above does a fantastic job of addressing some common emotions felt by the family caregiving community – those who provide free caregiving services to their loved ones.  Let’s look at the three emotions she mentions and also look at the struggles many caregivers experience at their place of employment.

Grief.  We grieve the loss of the person who is still with us.  “When someone dies, it is an overwhelming and horrible experience, but it is the end of something,” says Suzanne Mintz, cofounder of the National Family Caregivers Association.  “But with a caregiver, the grief is perpetual; it goes on and on and on.”  Until you’ve experienced the ambiguous loss of your loved one, you can not say that you understand that particular type of grief.  This ambiguous loss may result from a loved one’s dementia, debilitating disease, or other conditions that rob the patient of their physical or cognitive abilities.  Ms. Mintz states that when one person receives a diagnosis, you both receive the diagnosis.  You both experience the gradual loss of the life you once had and you know it won’t be coming back.  That is a grief that keeps on giving because as time goes on, more and more of one’s previous abilities disappear right before your eyes.

Guilt.  “I wish this would all be over so I can get my life back.”  Oh my gosh, did I just say that?  Many of you have felt that way and then struggled to rid yourself of the ensuing guilt.  But guilt is constant – whether it manifests itself in believing that you are not doing enough for your loved one, not doing enough for your family, feeling negative towards the one receiving your care – it is constant.  And it is normal.  These negative feelings don’t make you a bad person.  Rather, they are proof that you are a sensitive, aware and evolving being who hasn’t yet perfected the art of living.

Exhaustion.  Physical, emotional, and spiritual exhaustion sneak up on you and if not attended to early enough, they are killers.  In my article, Caregiver: put on your oxygen mask first, I address the need to place yourself as more important than the person for whom you are providing care.  “Gee, that’s pretty darn selfish!”  Not at all.  If you get what I’m talking about, you’ll agree that your loved one’s care is fully reliant on your ability to provide it.  You can’t do so if you are on the brink of exhaustion, or worse, you die before your loved one, which is more common than you would like to think.  You need a caregiving team.  That team may consist of other family members and/or neighbors and acquaintances.  You can’t do it all by yourself.  If you’re a solo caregiver, check out the article, Solo Caregiving.  This article provides tips on how to get the help that you need from those around you.

Discrimination.  According to the recent report, Protecting Family Caregivers From Employment Discrimination, “roughly 42% of U.S. workers have provided unpaid elder care in the past five years” and that number is expected to rise to about 49% by the year 2017.  With so many family caregivers out there, especially with the incidences of Alzheimer’s and other dementia on the rise, we all hope that employers will be more inclined to help their employees.  But discrimination does occur in the workplace in the form of: limited schedule flexibility, denied leave or time off, and even dismissal from ones job.

The Family Medical Leave Act (FMLA) protects some caregivers but is an imperfect protection that is not required of employers with fewer than 50 employees.  Additionally, of those employers required to adhere to FMLA guidelines, the employee must have been with their company for at least twelve months and have worked at least 1,250 hours during the previous year.  With no FMLA protection, your job is at risk – especially in an economy when so many other workers would be glad to put in the hours that you’re not able to fulfill.

A word to employers.  I know that it’s hard to maintain success while some employees just aren’t pulling their weight.  But I think you’ll agree that some of you need to be more sensitive to the struggles experienced by your caregiver employees – employees who have never let you down prior to this difficult time in their lives.  These exhausted souls can’t tread water fast enough – won’t you help them?  Please do what you can to make reasonable accommodations that will lessen this temporary turn of events in your employees’ lives.