Interviewed by Neale Godfrey for Huffington Post

Originally appeared in HuffPo Plus Fifty -- November 20, 2013

Alzheimer's Disease is Devastating to the Entire Family

by Neale S. Godfrey

If you don't have a family member who has been stricken with Alzheimer's disease, the odds are good that you know someone or some family that has been.  Along with physical and emotional trauma, the financial burden can destroy a family. Alzheimer's disease affects one in eight older Americans, and is the sixth-leading cause of death. Over 15 million Americans provide unpaid care for a person with Alzheimer's and other dementias.  An estimated $200 billion in care was spent in 2012.  

President Obama proclaimed November 2013 to be Alzheimer's Disease Awareness Month.

Alzheimer's disease is an irreversible and progressive brain disease that slowly erodes precious memories, thinking skills, and the ability to perform simple tasks. It affects millions of Americans, including senior citizens as well as younger Americans with early-onset Alzheimer's disease. This month, we stand with everyone confronting the painful reality of an Alzheimer's diagnosis; lend our support to the families who care for them; and renew our commitment to delaying, preventing, and ultimately curing this disease....As we offer our support to Americans with Alzheimer's disease, we also recognize those who care and provide for them, sharing their loved ones' emotional, physical, and financial strains. This month, we honor their compassion, remember those we have lost, and press toward the next great scientific breakthrough.

In my circle of friends, when someone has questions about caring for a parent or loved one, suspects a family member may have the early signs of dementia, or just needs to talk with someone who has been there and can empathize, we call our friend – Christopher Lanni.  Christopher has a wealth of information amassed from his years as a stay-at-home caregiver to his aunt and mother.  He is not a healthcare professional, but he is a reservoir of real-world knowledge.  He is a writer, a blogger, public speaker, and a special person – eager to share and offer support.

In honor of Alzheimer's Disease Month, I have interviewed Christopher on a variety of topics that may offer some insight and support.

Christopher, you acknowledge that you are not a healthcare professional, are you a legal or financial professional?

• I am not a professional, I am everyman.  I like to refer to myself as the Accidental Expert. When my mother retired from her decades of teaching, I began to notice changes.  They were subtle at first – couldn't find her glasses, short-term memory loss, and easily agitated. Alzheimer's wasn't in the public dialogue back then.  My mother was diagnosed with clinical depression and “normal signs of aging.”  

The symptoms got worse as the disease progressed.  How did this impact your life and the lives of your family members?

• My mother's decline was slow at first.  We were lucky that one of her sisters had always lived with us.  Now retired, she was able to keep an eye on my mother.  I was able to continue working outside the home – for a while.  It was now obvious that my mother's condition was neither depression nor “normal.”  Finally there was a doctor who gave it a name:  Alzheimer's disease.  Facing reality was a real blow, as any hope of “getting better” was taken from us.  I got aides to help with the logistics of bathing and everyday care.  

Did health insurance or Medicare cover the costs associated with your mother's in-home care?

• No!  The expenses were increasing, and totally out of pocket.  I vowed to keep my mother at home, where she was comfortable.  The sad reality is that keeping a loved one at home is much cheaper than institutionalization, but still expensive and not covered.  At this point I gave up outside work and became a full-time caregiver.  We made a lot of financial mistakes because we were unprepared and uneducated.

Tell us about the financial burden.

• My mother owned her own home, where she lived for 40 years.  She also had a retirement pension – she was ineligible for financial assistance.  Care became more and more expensive as her condition worsened.  Aside from physically taking care of my mother, my sister and I also had to contribute financially.

The financial burden must have been terrific, but what about the emotional toll?  I know you did things that no child can imagine having to do for a parent – what makes you so special that you were able to do it?

• Thank you, but I don't consider myself special or different.  We all have challenges and most of us find the grace and strength to deal with them.  Don't be afraid to cry. In my case, I borrowed the slogan Just Do It! People speak of the sacrifice that I made with my choice to take care of my mother, but I think of all that I gained from the experience.  I found strengths and abilities that I never knew I had. I had the gift of intimate bonding time with my mother.  I have the amazing sense of accomplishment from being there from diagnosis to her final breath.  Her grace and strength taught me more about life, living, and dying than I can express.  

Can you give us some specific tips?

• Yes, both financial and emotional.

1. Be vigilant.  If you notice changes in a parent or loved one, get medical help early.  Now there are drugs which can delay and lessen the manifestations of the disease.
2. Be strong.  Inevitably, the child has to become the parent.  It's not easy, but you have to take the steps to insure the safety of the patient.  You will be met with resistance, but you have to take away those car keys, install safety features in the home, and get help.  I always say: “You wouldn't let your 9 year-old have the car, cook dinner and pay the bills – it's the same thing.”
3. Be prepared.  While your folks are in good health, discuss their wishes for the future.  Help them get their papers in order.  
4. Get your financial house in order.  Talk to professionals.  Establish a Living Trust. Explore the option of long-term health insurance.  Examine current insurance policies.
5. Reach out for help.  Caregivers can't do it without support from family, friends, clergy, and the medical community.  Most hospitals and end-of-life facilities have support groups.  

Thanks to Christopher for briefly sharing some of his experience and tips.  I suggest you read his blog which chronicled his care-giving along with amusing stories and favorite recipes.  As a family financial specialist, I will continue to cover different ways to keep our families healthy, wealthy, and wise.

For resources and information on living with or caring for someone with Alzheimer's disease, please visit www.Alzheimers.gov, Alzheimer's Foundation of America, and Alzheimer's Association.