Maria Shriver

Young Onset Alzheimer's Disease: The Grieving Process

By Karen Henley

Each September, World Alzheimer’s Month is your chance to join the global fight against Alzheimer’s disease. There are more than 35 million people worldwide living with dementia and more than 5 million Americans are living with Alzheimer’s disease – the most common form of dementia. “Go Purple” on Friday, September 21st to mark Alzheimer's Action Day.

It has been 6 months since my husband, best friend and hero passed away. I now understand why they call it a grieving “process”.

For the last 11 years while my husband remained at home with us, suffering with Young Onset Alzheimer’s Disease, we watched him die, day by day. Each day I felt the loss a little deeper.

Just weeks before he passed away, I was growing increasingly concerned about fluid retention and congestion. I saw that he was getting worse; in fact, the day he passed away, I went into work late so I could talk to his hospice nurse about my concern that his kidneys were failing.

She assured me that he was “his normal” -- yet, 3 hours later, he was gone.

I always thought Mike's passing would be easier knowing he was no longer suffering and finally at peace, but I don't feel it has been.

In the six months since my husband left this world, my children and I continue to deal with his loss.

Mike hadn't spoken in years, yet his presence was huge in our home and his absence has created a huge void. We struggle with what to do next and have actually questioned what our purpose is now.

For 11 years we were so focused on Mike and his care, constantly fighting for his needs and what he deserved. Now what?

We continue to be voices for those who have lost theirs due to Alzheimer’s Disease, especially for people with Young Onset Alzheimer’s Disease.

It seemed that while Mike was alive, I was able to give hope to caregivers and help them find strength in their decisions as they struggled each day to care for those they loved.

I pray now that all the words of encouragement and inspiration we had given by daily expressing our love and devotion to Mike has given strength to those who may have wanted to give up.

We have had our ups and downs since February. One of my low points came in my discussion with my son when he expressed his anger that I waited to call him after Mike had passed.

There was so much confusion that day. An ambulance was called to our home when the aide realized Mike had stopped breathing (we had a “Do Not Resuscitate” - which I could not find in the mist of all that craziness) and I was begging the medics NOT to take Mike to the hospital, which they had to do.

My daughter was at work and I was trying to figure out how to reach her (she had a new job and I didn’t have the phone number there).

I knew she would be leaving for home soon and didn’t want her to come home to an empty house unaware of what was happening.

Because my son was two hours away at college, he immediately became my next concern. Once I got to the hospital and it was confirmed Mike had passed away, my mind instantly went to my son and how I would tell him and how he would get home.

He had just spoken to me that morning when I was waiting home to speak to the hospice nurse and he felt, even though I wasn’t sure if the doctors would try to resuscitate Mike, that I should have called him.

This was an emotion I had not anticipated in the grieving process, but one we are still dealing with to this day.

We have ordered a headstone for Mike, but it will take approximately six months to be approved, made and installed. It will most likely come in while Brandon is away at school, so we decided to not go until he can come home and we can all view it for the first time together.

When we go to the cemetery now, it looks unfinished no matter how hard we try to make it look good. I know we will feel more closure once this has been finalized.

The kids and I also decided to take a vacation. We had not been away on a “real vacation” for 6 years. I wasn’t sure if and when we would ever be able to go away again, so we scheduled a big big vacation and went to California for two weeks.

We spent half the time in Los Angeles and the other half in San Francisco. We had a great time, but there were many days when I was clearly emotional. Walking around and seeing families together, especially fathers and sons, was difficult for me.

We went to Disneyland and my thoughts went to our honeymoon when Mike and I went for a few days to Disney World in Florida. That was his first time to Disney and he loved it there as well as the subsequent times we had taken the children.

We went to Alcatraz at night and I KNOW this would have been something Mike absolutely loved.

When we visited Muir Woods my son was not happy. “What’s so great about trees anyway”? I was upset with his attitude and realized later that I’m sure Mike would have had voiced the same sentiment.

Overall the trip was a wonderful change of pace and an escape from the last few months.

I also continue to struggle financially. Although Mike left a small Life Insurance Policy (which allowed us to take our trip), it will not be adequate to provide for us indefinitely.

Days after Mike passed I found out from Social Security that I did not qualify for Widow’s Benefits because I was too young. All these years I had relied on Mike’s disability check to cover our mortgage payment each month and now that money has stopped.

Raising two children in college is quite costly, as well as keeping a roof over our head. I worry constantly about how long I will be able to keep my head above water, but I count my blessing each and every day, especially the fact that I do own a home.

Yes, dealing with the loss of the loved one is most definitely a process. Whether your loss is sudden or drawn out, the reality of that "being" not with you anymore is, at times, overwhelming.

We find our strength in continuing to fight for a cure for this horrible disease. We will be walking this Saturday in our local Walk to End Alzheimer's and team "henley's heroes" has so far raised $3,025.00.

I continue to reach out to other spouses who are dealing with Young Onset Alzheimer's Disease. Sadly, there seems to be more and more younger people diagnosed each day.

Our suffering brings unique challenges, and by raising our voices and speaking out, we are doing what we can to advocate for those who are diagnosed with Alzheimer's Disease under the age of 65.

My friends in this battle spread all throughout the United States and I am honored to know so many brave men and woman who call themselves caregivers.

Life will continue for us. We know we did all we could to give Mike the absolute best care possible at home and I know he felt our love each and every day.

We have no regrets and that's something not many people can say.

Follow Karen Henley's journey...read her past blogs here.

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Karen Henley is a legal assistant for a real estate attorney as well as a full time caregiver to her husband. She is an advocate for Alzheimer's disease research and awareness, especially for Young Onset Alzheimer's. She lives in Westbury NY with her husband and two children. She's the author of the blog, Follow You, Follow Me: A Young Family's Journey with Young-Onset Alzheimer's Disease.