Caregiver Support

Caregivers – this message is for you!

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No Matter What, I Simply Cannot Get Sick!.

Fellow blogger, Don, talks about his caregiving journey with his wife in which he swore off getting sick because – quite frankly – he couldn’t afford to be sick when his caregiving duties required that he be healthy and available 24/7.

One could argue that just being worried about getting sick might make one sick, but fortunately, that was not the case for Don.  Having read many of his articles, it appears that he knew what was required of him as a caregiver – the same thing that is required of all of you who are still on your caregiving journey: assemble a team, spread out the duties, and seek emotional and physical support in whichever form you need.

First and foremost, please read Don’s article attached above.  After you have done so, I hope the three articles below will also prove beneficial towards providing direction on how one might assure a successful medical and mental health caregiving journey.  When you take care of yourself, you’ll be better equipped to take care of your loved one.

Caregiving: The Ultimate Team Sport

Solo Caregiving

Caregiver: put on your oxygen mask first

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There’s an App for that!

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A recent article by Jim Fitzgerald of the Associated Press focuses on a few electronic methods that might relieve some of the struggles experienced by caregivers who try to balance their frantic personal lives with the oftentimes emergent needs of their loved ones.  For the purposes of my article, I am only looking at the type of monitoring put in place by a family member to check on an elderly person’s well being; primarily a family member with Alzheimer’s or other dementia.

Beleaguered caregivers getting help from Apps is an eyeopening look at how Smartphone Apps, and other electronic devices, can provide some sort of relief to lessen the caregiver’s load.  Many of those who are long-distance caregivers, such as I was for my father several years ago, might benefit from being able to monitor their family member’s safety and well-being from a distance.

But does such monitoring invade the loved one’s privacy?  Of course it does; but I guess one could say that the benefits outweigh the disadvantages of such monitoring.  Or do they?  What comes to my mind is the elderly person’s gradual loss of independence – an aspect of life that many of us would equate to being a requirement for our own quality of life.  But I digress.

At best, I think electronic monitoring serves as a stop-gap or interim measure of caregiving before hands-on care is put into place.  The Pillbox App keeps a very tentative watch on whether or not a loved one – say a parent – has taken his medication properly.  If the parent does not have compromised executive function, it’s certainly easy to “fake it” so that the daughter can feel as though all is well ten miles away.  In reality, however, medication mismanagement might be taking place, carried out by the parent.

Elderly People - sign on Warwick Road, Olton
(Photo credit: ell brown)

The Alzheimer’s Association Comfort Zone program requires that a loved one wear a GPS device at all times so that family members can monitor their comings and goings throughout the day.  The system is of no benefit if the person doesn’t wear the pager; and if the person has dementia, there’s a strong likelihood of that happening.  I’m being the devil’s advocate here, simply pointing out that the system is only as good as the cooperation required to use it.  HOWEVER, and this is a demonstrative HOWEVER, it appears to be a very worthwhile system that provides numerous benefits.  Other than taking away ones right to privacy, it definitely serves as a safety net for when mom, dad, spouse, or other loved one, are heading into trouble.

I’m skeptical of Comfort Zone but I’m also its fan.  I’ve linked the Comfort Zone website above so that the reader can determine if such a system is worthwhile in his or her situation.  My skepticism comes about because I wish more attention and financing would be spent on a cure for Alzheimer’s and other dementia so that these current monitoring methods become a thing of the past.  A world without Alzheimer’s sounds just as desirous as a world without cancer, or MS, or Lou Gehrig’s disease, to name a few.  More disease control financing = more cures.

One final word: I’ve already experienced two family members with Alzheimer’s and all the caregiving migraine headaches associated with those experiences.  So please know that I’m a proponent of worthwhile practices that ease the caregiver’s burden.  Unfortunately, there is absolutely no fail safe method out there that will give caregivers true peace of mind.  Even placement in a long-term care facility is not a 100% guarantee that mom, dad, sis, or gramps will receive the best care possible.  I’m sorry to burst your bubble – but it’s true.

Being a caregiver or being cared for: there’s really no escape hatch.

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In my post, President Obama says the “A” word: Alzheimer’s, I provided some Alzheimer’s statistics that focus on those who are predicted to be diagnosed with Alzheimer’s or other dementia in the years to come.  I also talked about caregiver statistics.

One statistic that really resonates with me is the following: a new caregiver is set into action every 33 seconds because someone will develop Alzheimer’s every 33 seconds.  In actuality, the stats are far greater than that.  Caregivers are “created” every second of the day because there are countless diseases requiring the assistance of someone just like you and me – an unpaid caregiver for a loved one.  I use the distinction of “unpaid” so as not to be confused with those who work as caregivers in the health care industry.

The following statement is attributed to former First Lady of the United States, Rosalynn Carter:

There are only four kinds of people in the world – those who have been caregivers,

those who are currently caregivers,

those who will be caregivers, and

those who will need caregivers.

I really don’t think there’s any way around it.  How about you?  Have you dodged the caregiver or being-cared-for bullet yet?

Don’t Go It Alone! The Importance of Caregiver Support

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Don’t Go It Alone! The Importance of Caregiver Support.

The article above by a fellow blogger who recently lost his wife due to complications of dementia, echos my sentiments about the need to invite others to join you on your caregiving journey.  Walking the path alone is not only inadvisable, but in most instances, it’s impossible.  With so many unknowns waiting around the corner, every caregiver needs to enlist the help of those who can effectively support him or her, and as a result, provide much needed assistance to the one being cared for.

John F Kennedy Baseball Team
(Photo credit: Wikipedia)

I’m a firm believer of team support, as I stated in my article: Caregiving: The Ultimate Team Sport.  Another article, Solo Caregiving, provides encouraging ways in which to recruit team members when there are no family members on which to rely.

Taking care of yourself is not selfish.  Developing a team of caregiver-helpers goes a long way towards taking care of numero uno – YOU!

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.

What A Difference A Year Makes.

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What A Difference A Year Makes.

I congratulate Chris MacLellan, the Blogger whose article is linked above, for coming to the realization that:

  • caregiving is a noble and worthwhile job; and
  • caregiving can be bad for one’s health.

All of us at one time or another have turned the focus away from our own well-being onto that of others to the detriment of our emotional and physical health.  That doesn’t mean that we shouldn’t attend to the needs of others – we must if we’re to be a supportive society – but it’s important to be aware of what we personally need in order to remain healthy.  It’s a difficult balance to reach, but it can be done.

My article, “Caregiver: put on your oxygen mask first” addresses the mistaken notion that we can do it all.  We can’t.  Our reserves will always run low and our fuel tank will always near empty unless we feed ourselves with that which sustains us.  Chris discovered what he needed to do.  I hope we all come up with the winning formula that allows us to take care of ourselves while we take care of others.