Archive for 'caregiving'

The Looming Cloud of Alzheimers

Thursday, October 18th, 2012 at 5:49 am  
Leave your comment

When we got the news that my mother-in-law’s ovarian cancer had come back (if it ever responded to chemo the in first place), we were speechless – surprised, betrayed, aghast at the possibility that she was going to lose this battle.  We all hang on every positive word out of oncologists.  “We’re encouraged that the tumor growth appears to be slowing” means “you’ve got a healthy five years of carefree joviality,” right?  Wrong.

Interestingly, my father-in-law, despite ceaseless hand wringing, was far more philosophical than the rest of us.  “We all hope for a heart attack in our sleep,” he said, “but virtually none of us gets it.”  The big fear?  Alzheimer’s.  He said that as devastated as he was to lose his wife’s physical presence in his life, it would have been far more excruciating to watch her brilliant, encyclopedic, vivacious mind disappear while her body remained in the house.

In the past year, two of his closest friends have been diagnosed with Alzheimer’s — men with whom he’s shared 60 years of friendship, college buffoonery, new infants, challenging teenage parenting years, the tragic death of grandchildren, and jubilant trips to Italy.  His friends are gone now, unable to find the bathroom in the house where they’ve been visitors for years.  One is being lovingly but anxiously cared for by his wife of 55 years.   The other has been left by his much younger wife, who can’t cope with the demoralizing caregiving burden much less how to explain to her teenage children why the father who seemed completely age appropriate (he was extraordinarily youthful) no longer remembers that they were born.

And that’s where “the Greatest Generation” lives now – in daily fear that the grim reaper of Alzheimer’s will descend on them or someone they love.

Blessedly, my father-in-law has headed in the opposite direction.  At age 55, when on the phone with a delivery person, he was unable to remember his own address.  He put down the phone, walked to the front porch, looked at his house number, and returned to the phone able to provide his street address.  “We’re doomed,” we thought.  But 22 years later, he’s sharper than ever – still working and teaching, taking his students out to lunch, downloading apps onto his iPhone and then edifying us about how they work.  His social schedule is bustling (all managed via google calendar), and he only forgets the things he wants to (like how to operate a washing machine).   We are extraordinarily lucky.

But, like so many older Americans who don’t actually have Alzheimer’s, he lives in fear of it – not only that it will consume his brain but also that yet another brilliant dear friend will slip from his grasp, no longer recognizable due to this insidious disease.  It’s a cloud that looms at all times.  Deep, penetrating terror.

Roughly 5 million Americans currently have Alzheimer’s disease, and the latest statistics are that if you live to be 80, you’ve got 50-50 odds of getting Alzheimer’s.  Given that the population of Americans 80+ has increased by a million people or 20% over the past ten years, we’re talking about a big group of people.  Who will care for them? How will we care for them?

For starters, as the world-renowned Tennessee women’s basketball coach, Pat Summitt, who took early retirement because of early-onset Alzheimer’s,  has most generously made known to us, Alzheimer’s comes in stages, and many people move through the process of cognitive decline at a pace that their families can absorb into their lifestyles, albeit with difficulty.   At BeClose, we encounter many families whose loved one if, for the most part, continues to operate independently provided they have a regular schedule of check ins and the technological support our system provides.

And in addition to technology, there have been tremendous advancements in assisted living centers, caregiving communities and agencies that provide support and assistance, but these live-in options are often far too expensive for most families.   So families have options for help, but painfully few.  This leaves caregivers and the sandwich generation often on their own, managing their own families, and caring for aging parents – often too much to handle.

Caring.com fielded a survey that showed that caregivers suffer from depression at double the rate of non-caregivers.  We will face the same challenges that society faced when mothers chose in great numbers to take jobs outside their homes; an ecosystem of caregivers, compatriots and social innovators will need to develop to address this rapidly growing need.  As Ellen Goodman, the renowned columnist is quick to point out, the largest group of adult child caregivers are the boomers right now.  If they could pull off the social revolution of the 60’s, the women’s movement of the 70’s, and the childcare revolution of the 80’s, they’ve got the right skill set to figure this one out too.

Special thanks to Liddy Manson for this guest post.  Liddy is President of BeClose and an emerging voice on Aging in America.  She will be our guest on 10/23 for our  weekly #treatdiarieschat on www.tweetchat.com.  Join us and learn more!

The Experience of Caregiving from the Heart!

Monday, April 2nd, 2012 at 12:50 pm  
Leave your comment

The role of caregiving was bestowed upon me both instantly and gradually over the winter of 2007. Our beloved father’s shocking diagnosis of multiple myeloma blatantly hurled our family into organized chaos with a single phone call from his doctor one chilly December morning.  The following four months of our caregiving journey – only to find that it was much too late to save him – culminated in his passing.  Busy with funeral arrangements – something completely foreign to us three siblings – and with unspeakable sorrow, caregiving that ended for our father melded into caregiving for our brokenhearted mother.  While our father was in treatment, my husband began to feel a mysterious pain in his right toe, which only grew more intense every day.  So much so that wearing dress shoes at the funeral was torture and he was limping by the time it was all over.  The pain grew stronger and spread to the rest of the foot, making it necessary to use a cane to keep the weight off, then crutches by the end of summer.  In July, the neurologist diagnosed him with CRPS, a rare disease of the nervous system that basically makes the brain send the wrong signals – exaggerated pain where there is no reason to feel pain – to the affected parts of the body.  Within a year of the first symptom, my husband was forced to retire on disability.

I have to say that neither my brother, nor my sister, nor I saw ourselves in the caregiving role.  We were merely doing what sons and daughters would do for their ailing father and widowed mother: we were family taking care of family.  Similarly, I was caregiving for my husband, as his wife; just like he’s been caregiving for me as my husband.  It was only upon researching cancer and CRPS that I learned of this relatively new term: caregiving.  It took me another 2 years to realize that caregiving had become my new role!

For me, caregiving has 2 sides:

  1. Caregiving itself – the act of taking care of someone, including monitoring health at home & through doctor’s visits, medications, daily living, support programs/benefits/insurance, emotional support for the patient & all of the tasks that the caree used to do that still need to be done
  2. Caregiving her/himself – caring for the person doing the caregiving: health and emotional well-being

From the very beginning, I saw caregiving as a challenge that I had every intention of successfully managing.  Because I knew nothing about the illness and because it didn’t occur to me that anything would go “wrong,” I was not prejudiced by fears or doubts.  (Some people call it blind optimism, others call it ignorance.  I call it Faith!)  As my family learned about the way both multiple myeloma and CRPS could ravage the body and eventually take your life, we knew that the possibility of death was within reach.  However, I think that this information only made us more determined in our search for answers, for treatments, for cures.  As my sweet Dad softly told my cousin on the phone one Sunday morning, he hoped that the doctor’s treatment worked because we all knew what the alternative was.  We knew.

Caregiving in our family was administered as a team.  With our Dad, we took on the most important project that we had ever encountered: we each chose tasks that we could accomplish individually, we got the job done on our own, we updated each other on our progress, we reassessed to see what else needed to be done and we started the cycle all over again.  We made a fabulous team!  I do believe we worked so well together because we had only one focus: Dad’s health.  Period.  No egos interfered.  No resentments existed.  Instead, we were respectful of each other, we recognized that we already had a full schedule but would do whatever was necessary to help Dad, we remained level-headed, we discussed whatever needed attention, we didn’t boss each other and gladly let whoever knew how to do something take charge, and we decided on the next course of action together.

I tackled my husband’s illness with the same conviction and assertiveness.  The lessons learned through our beautiful father’s illness and passing were guideposts for my husband’s caregiving.  Little did I know that I’d need them again so soon!

As a result I have compiled a list of what I’ve done to manage caregiving and I am managing it!  The medical requirements right now are few, but I know that that can change at any time.  My caregiving consists more of coordinating care, keeping up with paperwork & medications, and doing the things that my husband used to do in addition to carrying on with my role of mother, wife and daughter.  I am currently doing long-distance caregiving for my mother as well (but that’s another story!).  I hope that these pointers help you manage your caregiving, too.

I have posted a list of what has worked for me in CaregivingCafe Blog 

Please visit CaregivingCafe.com for links to information, resources, support & solutions to help you manage caregiving for your loved one.

Featuring Recent Posts WordPress Widget development by YD