Dear friends and family,
At a brainstorming meeting for Louisville Walk to End Alzheimer’s team captains last week, I talked with a woman who had just lost her husband at age 60 to Alzheimer’s disease. So much for the concept that Alzheimer’s is only about older people who will be dying soon anyway.
That sounds really harsh, and perhaps a bit bitter, I know. But that concept is one of the barriers we face in raising awareness and money for Alzheimer’s research and support services. Here is my response:
1. Early onset Alzheimer’s can affect people even in the 40s. The woman whose husband passed away in July said he was diagnosed at age 54. While our family was devastated at the loss of my mother-in-law who suffered 13 years with Alzheimer’s before her death at age 91 last week, I am grateful for the 20+ additional memory-intact years we had with her that my new friend was unable to have with her husband.
2. The memory loss is just one aspect of the disease. Other symptoms of Alzheimer’s can include personality changes that make caring for your loved one incredible difficult. Anger, aggressiveness and severe depression are just some of these symptoms. There’s also the embarrassment of having to have assistance with eating, toileting and other personal care - these experiences can lead to uncharacteristic outbursts of frustration that grow more and more common, and often more severe, as the patient continues to lose functionality.
There are medications that help slow some of Alzheimer’s disease’s symptoms, and they are a huge blessing. To date, however, there is not one drug that can slow the progression of the actual disease itself. So, as of now, once the connections inside the brain of the Alzheimer’s patient are broken, they cannot be mended. Retraining eventually becomes impossible as more and more connections are destroyed.
3. And then there are the dangers that become more and more serious as the person with Alzheimer’s continues through the later stages of the disease. A dear friend of mine had to lock all of the exterior doors in her home so that her husband, who had been a nuclear physicist for NASA, wouldn’t wander away and get lost. Imagine having to child-proof your home to protect your formerly brilliant spouse from going out to work in his garden.
4. Alzheimer’s doesn’t just affect the person who has the disease. As with other diseases, it affects the whole family, including the spouse or child who is often the primary caregiver. While more than 80,000 Kentuckians have Alzheimer’s today, there are nearly 265,000 family members and friends who are providing care for someone with Alzheimer’s in Kentucky, according to the Alzheimer’s Association.
If it were just the memory loss, that would be sad enough. But it’s the loss of dignity, the personality changes, the danger of wandering away or eating something bad for you or forgetting how to swallow that make Alzheimer’s so insidious. It is the inability to say goodbye. It’s the thousands of unpaid hours of care in a situation that, as of now, can only end in death.
The purpose of my blog is to help increase understanding of what Alzheimer’s is and how it really affects the individual who has been diagnosed, as well as his or her friends and family members. I also hope to encourage more people to get involved. If you haven’t already, please visit www.alz.org to learn more. Thank you.