Maria Shriver

Young Onset Alzheimer's Disease: Reaching Out & Laughter

By Karen Henley

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.

Born out of that loneliness, my faith has become my main source of strength. It doesn't make a difference who or what you worship, but I feel that the strength from a greater power is my ultimate resource. I frequently read inspirational books to help me cope when things get really difficult. I know deep down that things CAN get worse and that there will always be someone struggling more than me. Although it’s at the expense of others’ hardships, those thoughts help me get through those rough days.

Anyone familiar with Alzheimer’s disease and caring for someone with it knows that a sense of humor is key. I can vividly recall a certain bathroom situation with Mike and my dad that was really very sad, but at the same time, strangely funny. We never laugh at Mike, but we laugh at the craziness of the situation. Sure, there are days when I allow the tears to fall, but they aren't as often as the days that are filled with laughter. Besides laughing at the absurdity of the disease, we also enjoy watching comedians, comedy shows and movies. Laughter keeps us sane. It was during my husband’s illness that we became even bigger fans of Ellen DeGeneres. I can’t tell you how many times, when my husband was hospitalized, that we couldn’t wait until 4:00 pm because we knew we would get our daily dose of laughter from her show. Ellen’s sense of humor is light and refreshing and it takes away the stresses of our days. We laugh often. It’s good for the soul and I know Mike appreciates the sound.

Besides my faith and our need to laugh, I’ve turned to what is an absolute MUST for anyone navigating the journey of Alzheimer’s disease - reaching out for help. Talk to any agency that will listen and accept their help.

- The Alzheimer’s Association (www.alz.org) has been a tremendous source of guidance. They were my first phone call upon diagnosis. I have come to know the head of our local chapter very well and they have helped me navigate the system, direct me to doctors and attorneys and listened when I just needed to vent.

- The Alzheimer’s Foundation of America (www.alzfdn.org) has also been a big resource. While the Alzheimer’s Association focuses more on raising money for finding a cure, AFA focuses on helping those currently suffering, including offering programs and grants for respite (which I have utilized). We even contributed a quilt panel to their “Quilt to Remember”, which travels around the country to raise awareness.

- The Alzheimer’s Daily News (www.alznews.org). I subscribed to this wonderful web site years ago and I have found they are a great resource. They scour the world news for stories on Alzheimer’s and related dementias and put it all in one format which you can get each day through email. It’s free to subscribe and it keeps me updated on research and care.

- If your loved one’s doctor is “fluent” in Alzheimer’s, they can also be a huge source of information. We were blessed with a doctor whose life has been devoted to caring and studying Alzheimer patients.

I have also been blessed by meeting many other families dealing with the same struggles as our own. Young Onset is not as uncommon as people believe, yet it’s still not as prevalent as late onset Alzheimer’s. Whenever I read a story about another family struggling, I reach out to them by contacting the writer. I pass along my information to give to the other family. If they want to write, great; if not, I completely understand. Most families dealing with Young Onset understand the uniqueness of living with this disease, so most of the time we connect. I communicate with them through emails, my blog and even Facebook. It allows us to share thoughts and feelings only those going through the same situation can understand.

As a caregiver, I’ve found that you need to open yourself up to help. You need to tell your story and reach out to agencies like the few I mentioned. Remember, the people working there chose their professions, and they did so to help others. This road CANNOT be traveled alone, trust me. It’s not good for the patient or the caregiver.

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.