family caregiver

My Alzheimer’s family caregiving journey

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My dad, circa 1980s

I had the privilege of being my father’s caregiver during his multi-year struggle with Alzheimer’s disease that ended with his death in 2007. Five years after his death, I started writing my debut novel, Requiem for the status quo, to be released by an independent publisher, Black Rose Writing, on July 20th. And now five years since I started my novel, Requiem will be available to everyone in less than 30 days. My debut novel was inspired by my father’s and my caregiving journey and is dedicated to the man whose later years was robbed by a disease that is always fatal. The book’s dedication reads: Dedicated to my father, Don Patrick Desonier, who wore his disease with the dignity it did not deserve.

I am in the very distinct and healthy position of understanding that realistically, as a debut author I cannot hope to be an instant and resounding financial success. But that’s okay, because for me it has never been about the money, but very much about helping those who are experiencing or have experienced an Alzheimer’s caregiving journey similar to mine. For that reason, most of my “book tour” will encompass senior centers in the region, as well as senior living residential communities where I hope to hold readings and sell my novel to seniors at a highly-discounted price. I know it is said that when trying to fill an auditorium, it’s all about getting butts in seats, but for me, it’s about getting books into laps.

And that’s what I’m going to do.

Requiem for the status quo is currently available for preorder at Black Rose Writing, enter discount code PREORDER2017 before July 20th for a 10% discount. You can also preorder Requiem at Barnes & Noble right now, and Amazon will be providing preorder opportunities in the days ahead. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.

 

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Time to recognize & bolster family caregivers

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Family surrounded by caring handsThe proposed Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act would require the development of an integrated national strategy to provide resources for under-served family caregivers in the United States.  If you are not currently a caregiver for a loved one, you most likely will be, and no doubt you know of someone who is already an unpaid caregiver (as opposed to a hired caregiver) for a person in their family.

Source: Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act – AARP

Many families, even those with young children, find themselves thrust into the role of caring for a loved one when they least expect it and can ill afford to.  Caregiving for a child or an adult with disabilities, or caring for an adult with a debilitating illness, has become the norm for many in the United States and abroad.

These caregivers “prepare meals, handle finances, manage medications, drive to doctors’ appointments, help with bathing and dressing, perform complex medical tasks and more – all so loved ones can live at home.”

Family blurred linesKeep in mind, the above tasks are those they were already performing for their own household, tasks that multiplied exponentially with the increased needs of their disabled or ill family member.  Add a job outside of the home to all of that, and you have to wonder how these overworked and over-stressed heroes manage at all!  Read the rest of this entry »

Caregiving: Grief, Guilt, Exhaustion, and Discrimination.

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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.

Pretending to be a normal person is exhausting
(Photo credit: TNLNYC)

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.