Leeza Gibbons and Caregivers

American talk show host Leeza Gibbons has a personal interest in Alzheimer's disease and caregiving.   Her mother was diagnosed with the disease – and Ms. Gibbons  promised her that she would "tell her story and make it count."

To make good on that promise she established the Leeza Gibbons Memory Foundation in 2002.  The main program of the foundation is Leeza's Place (http://www.leezascareconnection.org or check it out on Facebook) which has facilities across the country.  

The mission of the organization is to support caregivers so they may have positive experiences with their caregiving.  To that end, Leeza's Place offers the Ten Commandments for Caregivers.

The first commandment is "Take Your Oxygen First."  We are all told on airplanes that we must secure our own oxygen masks before helping our children.  If we don't help ourselves first, we won't be able to help them.   Caregiving  can be enormously demanding and a caregiver who experiences burnout can't assist anyone else.  Caregivers (I wish I had a synonym for this term) must learn to care for themselves – body, mind, and soul.  I have to admit I didn’t follow this rule when being the caregiver for my parents, and I regret that.

It's such an important concept that, Ms. Gibbons uses this first commandment as the title for her book about caregiving.  Co-written with a psychologist/social worker and a physician,  Take Your Oxygen First: Protecting Your Health and Happiness While Caring for a Loved One with Memory Loss, was published last year. 

More on the Ten Commandments for Caregivers next time.

Caregiving and Dementia

You become the parent – and your parent becomes the child:  that happens when you realize your parent's mental ability is slipping to the point that your roles have begun to change.  It need not be your parent; of course, it could be a friend, sibling, spouse, or other relative.

The first hurdle is determining when that day of role reversal has come.  The realization may come suddenly with obvious signs of mental deterioration; or you may experience a slowly building awareness that something is wrong.  Some people rush the day.  The first "senior moment" or mistake is, to some, a sign that the senior is incapable of caring for herself.  Sometimes it is done maliciously -- the adult child who wants the parent out of his life or to obtain control of any assets. 

Some forgetfulness occurs at any time in life – the misplaced homework of a child or the misplaced key of a young adult.  Then suddenly is misplacing an item evidence of aging?  Not necessarily, without a pattern of problems.

The more common issue is not recognizing that the day has come.  One may be in denial simply because one doesn't want it to be true and doesn't want to face the future without that person as a fully functioning member of one's life. 

Distance can be a factor in realizing that a problem exists.  A friend of mine spoke with her elderly parents often by phone and thought they sounded fine.  They reassured her they WERE fine.  When she finally came to visit them, she was stunned to find her normally tidy parents living in absolute squalor.  They were unable to cope with daily living.

            I recommend this You Tube video to learn more about dementia.  It's about 90 seconds.  http://www.youtube.com/watch?v=DQx6Ku390YU

Caregiving and Elderly Couples

 

Many elderly couples have to deal with heartbreaking dementia.  During the time I was the caregiver for my parents, I had the privilege of watching how my father coped with my mother.  She suffered from senile dementia; his faculties never declined.  

I'm sure the dedication, love, and valor my father displayed was not unique.

This is from one of those emails that are always circulating, author unknown.  I don't know if it's true, but I do know that the essence is true.

"It was a busy morning, about 8:30, when an elderly gentleman in his 80s arrived

to have stitches removed from his thumb.

He said he was in a hurry as he had an appointment at 9:00 am. 
 

I took his vital signs and had him take a seat, since I was not busy with another patient, I would evaluate his wound.

It was well healed, so I got the needed supplies to remove his sutures and redress his wound.  While taking care of his wound, I asked him if he had another doctor's appointment this morning, as he was in such a hurry.

The gentleman told me no, that he needed to go to the nursing home to eat breakfast with his wife.  I inquired as to her health.

 He told me that she had been there for a while and that she was a victim of Alzheimer's disease.

As we talked, I asked if she would be upset if he was a bit late.

He replied that she no longer knew who he was, that she had not recognized him in five years now.

I was surprised, and asked him,

 'And you still go every morning, even though she doesn't know who you are?'

 

He smiled as he patted my hand and said,
'She doesn't know me, but I still know who she is.'  "

Caregiving Books

When I began as a caregiver for my parents, only a few books dealt with the issues I was facing.  Many books have been published on the topic since then. 

I'm disappointed with some of these books.  I lived with my parents for the 23 years that I cared for them, and, except for occasional forays into the real world, my caregiving was 24/7.  The books that are written by heath care professionals are undoubtedly correct from a medical point of view.  What they generally cannot tell you is how to deal with the responsibility of DAILY caregiving. 

A physician typically sees the patient for a few minute and usually doesn't understand what it's like to live with the patient.

One book that I do highly recommend, written by Dr. Dennis McCullough, is

My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Ones.

Dr. McCullough appears on PBS in this one-minute video: 

https://www.youtube.com/watch?v=xZsJ_jbX3OU

Dr. McCullough's book deals with aging in general, not just dementia patients.  

Perhaps the most famous book dealing with the elderly and memory loss is The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life, by Nancy L Mace and Peter V. Rabins.  First published in 1981, it is currently in its 4th edition.

Caregiving Introduction

When I was in law school, I had a professor who told about his senile father.  The man often wandered away from home and when my professor found him, the father refused to return home with him.  A police officer had to tell the father to go home with this 'nice young man' for him to cooperate. 

The professor explained that one in four people would develop dementia so chances were 50/50 that we would have a parent with Alzheimer's disease or senile dementia.  (I don't know if his statistics were correct.)  I paid little attention to his stories, but within a year, I realized Mom was showing signs of dementia, too.

I was busy finishing law school and only vaguely aware of the changes in Mom's behavior.  At first little things happened that only someone close to her would realize were "off."  The odd conduct occurred more and more frequently.

When I graduated, hiring freezes made it impossible to seek employment with the federal government as I had planned.  I began caring for Mom while looking for work.  Her needs increased and I cared for her until her death in 1997; I cared for Dad until his passing in 2001. 

Although I worked some part time and temporary jobs, my career was essentially on hold from my graduation in 1980 until 2001.  I certainly do not recommend that for anyone!  After caregiving for 23 years, I have definite ideas on what to do – and what not to do.  More resources are available to the caregiver and the elderly than ever before.  In subsequent posts, I will share some of the resources I found most valuable.