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Local authors offer sage caregiving advice based on expertise and experience
Concurrently, in New Boston, caregiver Elaine Pereira was observing episodes of dementia with her loved one. She wrote an award winning book titled, “I Will Never Forget: A daughter’s story of her mother’s arduous and humorous journey through dementia.” With literary flair, Elaine dips into her family's past and transposes these accounts into present day situations, similar to how someone diagnosed with dementia experiences the world; better equipped to recall the joyful moments from the past than the often frightening present.
“Betty was a genuinely wonderful woman who was no different from all great moms. She was kind, intelligent, energetic, and talented,” said Elaine. But a sequence of events and the tragic loss of her husband, sons,
and daughter-in-law would have a devastating effect on Betty’s mental health and well-being, culminating in a diagnosis of dementia.
Elaine recalls Betty’s symptoms in a succession of vignettes. She’s woven into the prose helpful strategies to counter dementia symptoms, providing readers with a game plan if they are faced with a similar situation.
Betty (left) and Elaine involved in a favorite holiday tradition creating Christmas cookies for the 2006 season. Elaine said, "Despite my fear that she might forget who I was, she never did. I was very happy for that small, but genuinely priceless recollection."
To purchase a copy of “I Will Never Forget” for $16.97 plus shipping, contact Amazon at 888-280-3321 or visit online at www.amazon.com. Elaine is donating a percentage of proceeds to the Alzheimer’s Association to fund research.
Like Jill, Oakland county resident Sue Fabian was a caregiver for more than twenty years. Her mother Violet suffered a massive stroke in 1990 at age 68 and remarkably pulled through,
despite a 20% chance of survival, with a paralyzed arm and extensive speech impairment. Sue’s caregiving experience coupled with Violet’s motherly love and resilient spirit motivated Sue to become an elder law attorney and geriatric care manager.
As a final tribute to Violet who cared for her cancer-stricken husband when her children were young, Sue and older brothers Nelson and Alan made sure that at least one of them was present at all times, until her passing in October of 2012. This moving, emotionally intimate 27-day vigil inspired Sue to write, “Birthing Death,” a guide for remaining present in the last days of a loved one’s life. Sue explains why this final gift of love is so important for both the caregiver and their loved one.
At the end of each chapter are questions for self exploration or for others that are involved with your loved one’s care. Sue also supplies patient advocacy tips; outlays the differences between hospice and palliative end-of- life care; presents questions you can ask when searching for hospice care; offers tips on being ‘in the moment’ with your loved one; explains how to communicate when a loved one’s ability
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to respond is compromised; suggests ideas and actions to manage the grieving process; and provides ways to commemorate the life of a loved one after they’re gone.
In an email Nelson sent Sue he explained,” When I die, I hope to have that same comfort you gave to mom... I can’t imagine anyone giving a greater gift to someone in the last days of their lives.” Visit www.amazon.com online to order a copy of “Birthing Death” for $17.95 plus shipping or contact Amazon at 888-280-3321.
Sue Fabian with her mother Violet.
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Become a strong and effective patient advocate for someone you love continued from page 1
you can add ‘contacts,’ ‘questions,’ and ‘important notes.’
Set up a method of communication for family and friends
Keeping everyone on the same page can be a time consuming chore. But
a company called BrightStar Care®
has simplified the process with CareTogetherTM, a free web-based care management tool that gives caregivers an opportunity to create a secure webpage to keep family and friends informed on their loved one’s hospital stay. It’s amazingly user-friendly and also offers a free app for Smart phones. Visit www.CareTogether.com for more information.
Meet with the professional who ordered the hospitalization
This step is an important one in obtaining answers to questions and verifying that all the necessary infor- mation is accurate.
Did the ordering physician check your loved one’s risk for heart attack or stroke? You can also do an online risk assessment at http://www.mayoclinic.org/ diseases-conditions/heart-disease/ in-depth/heart-disease-risk/itt 20084942#. Print the results and present it to the physician. If at risk, the doctor can
take precautions with medication to protect the heart and/or prevent blood clotting.
Ask if your loved one will be screened for the MRSA (methicillin-resistant Staphylococcus aureus) bacteria as part of the pre-admission assessment. This bacterium is resistant to many antibiotics and is often found on the skin or in the nose. A simple treatment before being admitted to the hospital can eliminate it.
If surgery will occur, meet with the anesthesiologist to present a copy of the medications list you completed with your loved one and discuss what anesthesia is the best match. Find out how anesthesia will be monitored to avoid too much or too little. What’s the procedure if an allergic reaction to anesthesia occurs? What would be signs signaling trouble from the anesthesia after surgery and what’s the anesthesia’s shelf life in the body? Ask for the best phone number to reach the anesthesiologist if you have questions following surgery.
Stay tuned to upcoming issues of ACCESS, where we’ll outlay additional tips for advocating during the hospital- ization of a loved one and beyond the discharge.