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

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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.

Whether it be repetitive, gibberish, or fragmented, it can become quite frustrating for both patient and caregiver when they are trying to express their needs and/or desires. In the beginning of Mike’s diagnosis, we spoke a lot through a kind of sign language: pointing at things and describing things to us. Unlike most illnesses which allow patients to maintain their ability to communicate until the end, Alzheimer’s patients lose this most basic form of communication early on.

Silence is not always golden. Not being able to communicate can affect so many aspects of the journey — from practical matter to emotional matters. Practically speaking, this was no more evident than when my husband would get sick.

Caring for an Alzheimer’s patient is very similar to caring for an infant. When they cry or grimace in pain, we have to figure out what is causing their discomfort. There are no verbal cues, no help from the patient. More often than not, the doctors, nurses, and aides would look to me for help in determining the cause of my husband’s pain. Caregivers are the voice of the patient, but the reality is, we are never 100% sure of what is going on inside their minds.

During one visit to the hospital, my husband appeared to be dehydrated. I expressed to the Emergency Room staff that his symptoms were similar to when he was previously dehydrated: sluggish, no energy, labored breathing. Based on my interpretation, he was given an IV and we were on our way back home. Two days later my husband appeared to be worse than before. Back to the ER we went, and one resident actually thought to check the oxygen level in my husband’s blood. After one simple thought and a few simple tests, it was determined that my husband had “multiple significant pulmonary embolisms”. He was treated with blood thinner and had a filter surgically implanted in his groin (to prevent further blood clots from traveling). After two weeks in the hospital, he returned home. Had Mike been able to speak, the diagnosis would have been quicker and easier and he would have been treated a few days earlier. It frightens me to think what could have happened in those two days of the misdiagnosis.

Besides the practical issues that are health related, not being able to hear your loved one speak also takes an emotional toll on the caregiver.

I miss my husband’s voice terribly. I miss him telling me he loves me. I miss his laughter with our children. Our children were only 7 and 9 when my husband was diagnosed. We are lucky enough to have many videotapes of Mike and the children before his diagnosis. We have many recordings of him playing with the kids, but we also have many when he was videotaping events. He was heard but not seen. A few years ago, we took out some video tapes we had and watched a few. As we were watching, my son, by this time around 15 or 16 years old, said to me, “Mom, who’s that talking”? It took every ounce of strength I had to keep my composure, but no matter how hard I tried the floodgates opened anyway.

In that one simple question I realized my children did not even remember the sound of their father’s voice.

They were so young when he was diagnosed and their memories are so limited. Think about it – how old were you when you had your first clear memory of something? My first clear memory was when I was in kindergarten (age 5). If this holds true for most people, then my children had very limited time to store up their memories. The sound of their dad’s voice can never be recaptured. They have grown up with their dad’s presence, but his words have long since disappeared. It’s difficult for me to look at my husband and know I will never hear his voice again.

My loved one is right next to me, but I haven’t been able to hear him for years.

Since my husband is in the end stages of this disease, we have been dealing with bedsores for months. We were told by hospice that they will never fully go away. We took pride in the fact that after months of intense care, they looked like they were beginning to heal. Then the one on his bottom got worse, and then the one on his shoulder, and then the two on his thighs. They now look worse than ever. This is the nature of the disease. Hospice showed us how to clean and dress them, which we do several times a day. Cleaning them includes washing them out, packing them, and then dressing them. The sore on his bottom causes my husband great discomfort when we clean it. Recently he has been making a moaning type sound, and it’s evident he’s in pain. It breaks my heart. I tell him all the time that we are doing this to make him feel better, not hurt him.

After years of not having anything come out of his mouth, the only sounds we are left with is moans.

No, silence is NOT always golden.

Please help all Alzheimer’s patients and their caregivers by praying for a cure — and walking to end it!

About the Author

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Karen Henley is a legal assistant for a real estate attorney. She lives in Westbury, New York with her two children. Her husband was diagnosed at the age of 36 with Young Onset Alzheimer's Disease and raising awareness has been her passion for many years. She and her children cared for her husband at home for 11 years before he succumbed to the disease in February, 2012. She continues to remain a strong advocate for research and care. To help her through her life as a caregiver she began a blog: www.henleysheroes.blogspot.com.

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