How do you find and retain a great caregiver for a loved one with Alzheimer’s Disease?

Many of our clients and client families struggle with disabilities and/or long-term diseases.  The majority are impacted by the progressive dementia caused by Alzheimer’s Disease.  Alzheimer’s often causes people to lose what my mother, Gloria, calls our “thin veneer of civilization.”

I spoke with Mike Rohan of All-Trust Home Care to seek answers as to how our AD clients can stop the problem of caregivers coming and going.  Mike’s firm provides professional caregivers in the home environment, as well as assisted living and nursing home situations.  He shared with me that his company used to have a constant problem in staffing for Alzheimer’s clients; caregivers would often quit or demand reassignment after only a week or two.  He said, “People with AD can present challenging behaviors, such as screaming, repetitive questions, paranoia, non-cooperation, and even violent aggression.  Very few caregivers have been trained in how to deal positively with these challenges.” 

Mike decided to seek out a solution that would serve both his employees and the All-Trust clients.  He signed up for a program offered through the Alzheimer’s Association called the “Best Friends Approach to Dementia.”  Mike has also attended the “Train the Trainer” classes for the best friends approach.  After completing the program, Mike began to teach his firm’s caregivers how to implement the Alzheimer’s care ideas included in the best friends approach.  The results have been nothing short of revolutionary.  It has worked out so well, that now All-Trust offers a training class every other Friday at their Westchester, Illinois office.  The classes are open to their employees, client family members, and when there is space, members of the community. 

Caregivers have responded very positively to the training.  And they now have the tools that need to communicate effectively with their clients, despite the barriers of the clients’ dementia-related behaviors.  The quality of life for both the caregivers and care receivers has been remarkably improved.  In fact, Mike smiled broadly when he stated, “Before we implemented the best friends approach training, it was difficult to retain staff.  But now I cannot think of anyone who has quit.”
 
For more information about the Best Friends Approach to Alzheimer’s Care, go to www.bestfriendsapproach.com/Models.html

For information about how your family or organization can benefit from the Alzheimer’s Association training, see their website.  In addition, I’m sure that Mike would be glad to share with you some of his insights and experiences as he has implemented the program at his firm in Westchester, Illinois.  Their contact information is:

Mike Rohan
All-Trust Home Care
10526 West Cermak Road - Suite 114
Westchester, IL 60153
Phone: 708-492-1286
E-mail: MikeR@AllTrustHomeCare.com

I recently heard a moving story from a widow who had served as her husband’s primary caregiver for sixteen years.  She spoke with both passion and pain, describing her caregiving sojourn as “the loneliest time of my life.”  For this reason, she wanted to speak out and be an encouragement to others who might be on the same road.

Her husband had been diagnosed with Huntington’s Disease, a long-term illness that strikes at an average age of 39.  To paraphrase her words, “My husband had the diagnosis, but the disease took him away from me.  I no longer had a lover, a soul mate, someone who could really share with me.  Our days as a couple were at an end.”  During the time of her husband’s increasing illness, he was not able to hold her, kiss her, or care for her for at least eleven of the sixteen years of his disease.

She shared that during his illness, she had to sacrifice her own feelings for the benefit of her spouse.  An area of greatest hurt was the abandonment of her husband by his own extended family.  Her burden could have been lighter if family and friends had stayed more involved.  She related that when she called her husband’s brothers and reminded them of how important it was to her husband to be able to see them from time to time, they responded with, “I just can’t stand to see him that way.” 

“I was a widow with a living husband,” she stated with sadness.

It seems to me that we could all do a much better job in helping others carry the load of long term illness.  We need to be more aware of what family members are going through during what may well be the loneliest and most difficult time of their lives.  We need to come alongside them and provide sympathy and support.

On a more positive note, I learned of another man who has been diagnosed with Huntington’s Disease and whose male buddies have rallied around him.  They have intentionally gone out of their way to work together to take this man out of the house and to sporting events with them.  They have specifically set up time to talk with his wife to make sure they understand his care needs.  They work together to make it possible for him to go on their annual fishing trip.  These men are an extraordinary example of what it means to truly be a friend. 

I hope that each one of us would choose to follow this model of true friendship if someone we know and love develops a long term illness.

**The following links provide more information about Huntington’s disease support groups, or support groups and services for caregivers:

Huntington’s Disease Society of America Illinoise Support Groups

Today’s Caregiver

The Family Caregiver Alliance

Many US citizens assume that Medicare is their right. They assume that the health reimbursement program provided by the United States government on behalf of persons who are over the age of 65, blind, and/or disabled has always been there, and always will be.  But this is not the case.  Medicare and its ugly twin Medicaid did not actually exist until recently; July of 1965.

The Medicare-Medicaid Act was part of a number of reforms implemented by President Lyndon Johnson and the Democratic majority. President Johnson stated:

“No longer will older Americans be denied the healing miracle of modern medicine. No longer will illness crush and destroy the savings that they have so carefully put away over a lifetime so that they might enjoy dignity in their later years. No longer will young families see their own incomes, and their own hopes, eaten away simply because they are carrying out their deep moral obligations to their parents, and to their uncles and their aunts. And no longer will this nation refuse the hand of justice to those who have given a lifetime of service and wisdom and labor to the progress of this progressive country.”

Providing for seniors marked a major shift in our societal view of who should carry the cost of providing medical care for senior citizens.

The world was different in 1965. I was 15 years old and I remember most of the aged poor of our community went to the county home for the aged and infirm. Most men died before the age of 65, and women before the age of 70. There were few long-term care facilities, because few were needed. Today we have millions of people with long-term care needs.

Medicare was built on a 1965 acute care model, designed to provide healthcare for the individual who has a probability of recovering from his or her disease. Medicare is not designed to pay for long-term care. Medicare was designed to ‘care’ about acute medical care; heart disease, gall stones or cancer. Medicare does not ‘care’ about diagnoses such as Parkinson’s Disease, Alzheimer’s, dementia, or long-term mobility problems. If you need long-term care, then you have lost the “diagnosis lottery”.

You are lucky if you are given a diagnosis that has a Medicare reimbursement code. However, if you need care in an assisted living facility or a nursing home, your care is not acute but long-term, and Medicare stops ‘caring’ about you. As soon as Medicare stops ‘caring’, you are on your own! You will need to have a substantial long-term care insurance plan, a deep pocket-book, or become impoverished. If you are impoverished as defined by the Medicaid program, then you will meet Medicare’s ugly sister, Medicaid.  And that is a whole other story.