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Ways to Smooth the Road Along Caregiving Journey

Author: Helen Dennis, Specialist on Aging

Over the years I have received many questions about caregiving which resonate in the broadest sense.

Former first lady Rosalynn Carter reminds us why.  She said, “There are four kinds of people in this world:  Those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who will need caregivers.”

Gail Sheehy, in her recently published book “Passages in Caregiving: Turning Chaos into Confidence” (William Morrow), provides a poignant and moving account of her role as caregiver to her husband, Clay Felker, noted journalist, editor and teacher.  Sheehy’s intention is to offer practical tips, to help caregivers take charge and to identify some universal patterns in the journey.

In her book, Sheehy identifies eight personal “turnings” in caregiving:

Shock and mobilization:
That’s the first call that mom can’t be found, your dad is in the emergency room after a bad fall or your mate has a frightening diagnosis.  You feel a rush of adrenaline and panic and begin chasing facts and opinions that don’t always agree.

What to do: Start your day by calming yourself and try some breathing exercises. Interview doctors, seek a second opinion and check out hospitals.  Sheehy suggests Googling without freaking out and making sure to discuss your findings with a physician.  What is needed is a plan of action.

The new normal: “Recognize you have a new role as a caregiver.”  Acknowledge that you might be engaged in a “marathon rather than a sprint.”  You may be living in a time of new uncertainties with some physical, emotional or mental limitations.  Life may be different which likely will become the new normal – at least for a while.

What to do:  Sheehy suggests not becoming the lonely hero.  Connect with others and take care of yourself.  “You can only care for another person as well as you care for yourself.”

“This is a time when everything seems to have settled down.  A routine becomes normal.  And you know that you can handle this.  Then a new crisis erupts.  The original illness may appear or even a new one.  It is easy to be once again in the shock and mobilization period.   Only this time, hopefully, you are better prepared in asking questions and second opinions.”

What to do:   It’s time to designate one of your doctors as your “medical quarterback” who will assemble the team and “call the plays.”  It also time to move from the crisis mode into a healthier one since the journey may be long.

Playing God: “You likely believe that you are the only one who truly understands your loved one’s needs.  People commend you for your extraordinary heroic efforts and you begin to believe you are God.  Eventually, the reality is clear that some things will occur that are beyond your control.  It’s a rude awakening.”

What to do?  Try not to lose your entire identity in the caregiving role.  Beware of developing an unnecessary co-dependent relationship. Being available 24/7 over the long haul may be sending the wrong message to your loved one.  He or she will be OK for a period of time without you.  If possible, re-enter the outside world by continuing in your work or career, and expand life by telling stories and traveling.

Sheehy gives the example of her trip to France with her husband and children.  They had an inspiring visit to Monet’s garden in Giverny.  As told by Sheehy, both of Monet’s wives died before him; his friends and son died prematurely and Monet gradually lost his sight.   He could only rely on the rebirth of his garden.  After double cataract surgery, he lived his remaining 10 years painting his beloved lily pads.  Monet lived a life beyond his profound losses.

I can’t do this anymore: This is an overwhelming stage when you realize your loved one will never fully recover or will not get well soon.  San Francisco’s Caregiver Alliance reports that the most common hotline message it receives is, “I can’t do this anymore and I don’t know where to go for help.”

What to do:  When caring for her husband, Sheehy sought serenity with a 12-step program, visited her garden several times a day, meditated and revisited simple pleasures such as spending time with her grandson.

Here are some practical tips:  Before a loved one leaves the hospital learn as much as possible about the health routine, since you will be in charge.  Have a notebook and keep a list of all current medications and answers to every question such as, “What is the purpose of this test?”  If dementia is the diagnosis, learn all you can about the disease and its stages.

Coming back: This is considered a critical turning point.  You realize that your loved one is not going to recover.  The challenge is to get back your life, at least part of it.  For Sheehy, this was the hardest part of her caregiving journey.

What to do?  This is a time to reconnect with those aspects of life that have been joyful.  And it’s a time to begin letting go.  On a personal note, I recall caring for my late husband and constantly being with him or available. My doctor prescribed the following for me:  Leave your home at least once a day, walk on the beach, have coffee with a friend and re-engage with what you love to do.

The In-Between State: If there is no cure, what’s next?  Our loved one may not be actively dying but is beyond curing.  This is a time when the treatment rather than the disease can weaken the body, making it vulnerable.   Decisions of next steps can be overwhelming.  Is there a right time to transfer to a rehab center or long term care?  How does one prepare for “coming home?”  And then there are decisions about home care and costs.

What to do?  Investigate the services and costs of a geriatric care manager to assess the situation and offer recommendations.   Look into home health agencies as well as finding care providers by word of mouth.  Again, keep a notebook of all support services that might include doctors, insurance policies and as Sheehy mentions, even dog walkers.

The Long Good-Bye:
The most difficult part of this turning is deciding when and how to let go; to know when it is time to stop pushing – and just be.  Most know that we won’t live forever, yet somehow we believe that just applies to others.  There are painful, practical moments, such as ordering a hospital bed knowing that your bedroom will never be the same.

What to do?  Decide if it is time for palliative care and hospice. Reflect on the wishes of your loved one; if you haven’t had the conversation, begin the dialogue.  And then there is figuring out how to make as many moments as possible good ones.  Note that the long goodbye is not part of everyone’s caregiving experience.  Caregiving may be temporary or episodic.  Loved ones often do get better and life continues.

Healthcare and Elder Law Programs Corporation (H.E.L.P.), offers a useful guide, “Your Way” for that important end-of-life conversation. To order one online click here, or call H.E.L.P. at 310-533-1996.

Readers – this is not an easy topic, but to be informed and aware can make the journey easier.  Given all the aspects of caregiving, there is a positive message:  to love as long as we live, to laugh as much as we breathe and to savor each day as a gift.

Copyright 2010 Helen Dennis. All rights reserved.

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