Maria Shriver

Karen Henley

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Blog Posts

• May 2, 2012

  Alzheimer's and Caregiving

  

  Young Onset Alzheimer's Disease: Fighting in Mike's Memory

  This past week, my daughter Courtney and I attended the Alzheimer’s Association Public Policy Forum in Washington DC. My son Brandon wanted to go with us, but with Mike’s passing, the stomach virus, and the flu, he had missed too many classes.

  The trip was emotional from the beginning. The last time we attended was two years ago and Mike was still with us.

  Our goal is always to advocate and raise awareness - not only for funding and research - but also for Young Onset Alzheimer’s. Younger people with this disease are consistently forgotten, but I have vowed to change that.

  As much as we were excited about attending, we were equally anxious. Mike’s passing was still fresh and I knew it would be an emotional journey. Before Mike passed, we weren’t sure we would be able to go, as his health was fragile and I didn’t want to leave him. A week or so after he passed, we decided we would go in Mike’s memory, and fight even harder.

• April 2, 2012

  Alzheimer's and Caregiving

  

  Young Onset Alzheimer's Disease: The True Hero

  Photo above: Last family picture taken this past Christmas (2011).

  My husband Mike was diagnosed with Young Onset Alzheimer’s Disease in April, 2001 at the age of 36. By that time, his mom had already been diagnosed (1985) and passed away (1992) from the same disease.

  We were very much aware of the horrors of Alzheimer's. The day of Mike’s diagnosis, we left the doctor’s office devastated, to say the least.

  Then, Mike composed himself and said three things to me: 1) I’m concerned how this will affect Courtney and Brandon. I was much older than they were when my mom was diagnosed and I had a hard time with it; 2) I want you to re-marry; and 3) It’s OK to put me in a nursing home.
  
  That day seems like eons ago as I sit here and now try to deal my with my husband’s recent death. Mike, our “Energizer Bunny,” passed away at home on February 28, 2012.

• January 30, 2012

  Alzheimer's and Caregiving

  

  Young Onset Alzheimer's Disease: Meeting Maria

  Back in 2004, three years after my husband’s diagnosis, I wanted to do something for my mom. She had been a tremendous help. With two children at home (ages 7 & 9) and a 36 year old husband with Alzheimer’s, I needed all the help I could get and she selflessly gave it to me.

  I had been a huge Oprah fan and, one day while at work, I went on to her website and saw the category “Be on Our Show” -- so I clicked. They listed all the topics they were currently working on. While I scrolled down, anxiously searching for something I could find to describe my mom and the help she gave me, I came across another topic that took my breath away - “Do you know someone under the age of 55 with Alzheimer’s”.

  Young Onset Alzheimer's is not often addressed so I knew that I could not ignore this. During my lunch hour, I submitted a quick description of my husband and our situation. I knew at the time, as soon as I hit the “enter” key, things would happen.

• December 22, 2011

  Alzheimer's and Caregiving

  

  Young Onset Alzheimer's Disease: Love and Family

  “Inspire, empower, engage.”

  I was contemplating what I would write about this month and I struggled terribly with Maria Shriver's motto. As a caregiver for a loved one with Alzheimer’s Disease, I felt it quite difficult to inspire and empower no matter how hard I tried.

  This time of year has always been difficult for me and as my husband’s health has declined, so has my often infectious positivity. The truth of the matter is, when you’re caring for a loved one (no matter what the illness), this time of year is always difficult.

  With some help from my daughter and a few re-writes later, I hope I’ve been able to share my thoughts in a positive way and give some advice as I trudge ahead through this holiday season.

• November 23, 2011

  Alzheimer's and Caregiving

  

  Young Onset Alzheimer's Disease: Giving Thanks

  At this time of year, we tend to reflect on what we have to be thankful for. And despite what our status in life may be, we can all give thanks for the blessings we've been given.

  A young mother can be thankful she has food for her children, while an up and coming executive could be thankful that his proposal was accepted. A student can be thankful that he got into the college of his choice, while a destitute student can be thankful that he actually has a school to go to. A family can be thankful their loved one pulled through a difficult surgery, while another family can be thankful their loved one's suffering is now over.

• October 19, 2011

  Alzheimer's and Caregiving

  

  Young Onset Alzheimer's Disease: Silence Is Not Always Golden

  I've always said one of the most difficult issues to deal with in Alzheimer's patients is their lack of communication.
  
  Most Alzheimer's patients lose their ability to successfully communicate early on during the course of the disease. Their speech becomes fragmented, they repeat themselves, and they talk gibberish. That phase for my husband was very short lived. He lost his voice completely approximately four years after diagnosis. The term for this is aphasia.

• September 18, 2011

  Alzheimer's and Caregiving

  

  Young Onset Alzheimer's Disease: The Gifts of Simple Gestures

  Alzheimer’s Disease is devastating, overwhelming, exhausting - it can deplete the family/caregiver of everything. It’s not easy. With all that we have lost as a family, we’ve still had the opportunity to feel fortunate, humbled and even blessed. My children have had the opportunity to experience one of life’s most basic gifts: kindness. For the past 10 years, we have endured the unthinkable. My children are now 18 & 20 and they have experienced more sadness and loss than most adults will experience in their lifetimes. Yet at the same time, they’ve also experienced some wonderful gifts.

• August 18, 2011

  Alzheimer's and Caregiving

  

  Young Onset Alzheimer's Disease: Giving a Voice

  Throughout my years of caring for Mike, one of the most frustrating situations for us as a family would be when Mike was admitted to the hospital. He’s had various issues ranging from minor (dehydration) to severe (pulmonary embolisms) and each visit to the hospital would typically require anywhere from 5 days to 2 months in the hospital.
  
  What do you do when your loved one can no longer speak for themselves? How can you encourage the hospital staff: from health aides, to nurses, to doctors to “get to know” your loved one?
  
  During one of Mike’s hospitalizations I had an idea. I put a sign above his bed along with a picture of us with him, in a frame on his table. The sign introduced Mike to the staff and was written as if he was speaking to them. In part it said:

• July 18, 2011

  Alzheimer's and Caregiving

  

  Young Onset Alzheimer's Disease: Reaching Out & Laughter

  One of the many consequences of Alzheimer’s disease is isolation. For some reason, this particular disease causes lifelong friends and even family members to disappear. I often wonder if it’s the fear of seeing someone close to them become totally helpless, or the simple fact that some people just don't know what to do or say.

  Since my husband was diagnosed at the age of 36, the feeling of isolation and loneliness has become much more intense over the years. To this day I find myself feeling very angry and hurt that friends, and even certain family members who were around when things were good, are now completely absent from our lives.

• June 6, 2011

  Alzheimer's and Caregiving

  

  Young Onset Alzheimer’s Disease: One Family's Story

  In 2001 my husband Michael was diagnosed with Young Onset Alzheimer’s Disease at the age of 36. He has an inherited form of the disease - Early Onset Familial Alzheimer’s - and has already lost both his mother and brother to the disease.