Caregivers of dementia patients also easily can be called “managers.” Believe me, there are countless matters that need management. But even with all the doom and gloom, I have found a bright spot! I have met and befriended several people, diagnosed for years with different types of dementia, who are doing extremely well. Are they suffering from cognitive impairment and other multiple symptoms? Yes, but they manage it very well. Through getting to know these folks I have found a common thread that connects them: They are strong advocates for dementia awareness, actively working to spread not only consciousness but also common sense ways to handle this mind-robbing disease.
Now let me clarify this. I don’t believe it’s simply their activism in this worthy cause that helps them to handle their symptoms better than most; I’m convinced it’s the socializing that benefits them. Unlike most dementia patients they get out of their homes and practice public speaking. While educating others about what it’s really like to have dementia by running support groups and not living in a shell, they are, themselves, profiting.
I’ve learned from experience that it’s crucial to have loved ones with dementia maintain a run-of-the-mill lifestyle. This serves to keep their anxiety and confusion at bay. However, maybe we could find a happy medium with which to keep them socially active and maintain somewhat of a routine. Just because they have dementia doesn’t mean they still can’t lead a life of quality.
A good friend told me when he first was diagnosed with dementia he thought his life was over. Conversely, after he realized it was more of moving into a new phase of life, he persuaded himself to learn how to adapt to his symptoms. That was nine years ago. He still is teaching others about dementia nearly every day. Does he have bad days and horrible moments? Of course, but he has learned to pace himself.
Sadly, it is way too common for these folks and their caregivers to start noticing their social network of friends beginning to disappear, one by one. While caring for my dad, within a year my phone virtually stopped ringing. It is essential to put forth an effort to sustain a social world. It may not be a familiar one as now it will likely include people who are sharing the same dilemmas.
It’s important to realize this: I’m not suggesting trying to change the lives of patients when they’re already in the latter stages of the disease. Instead, they need to remain social from the early stages and as far into the disease as possible. Just the fact that they know they still have friends and outside support may be the best medicine they can find.
This is the concept of the Memory Cafés that are popping up all across the country. These groups are designed for those with dementia to have an hour or so of a social gathering with others who are in the same boat. Whether the word “disease” does or doesn’t pop up during these meetings is fine.
The need for social contact is part of being human, regardless of a person has dementia.
For a decade Gary Joseph LeBlanc was the primary caregiver of his father after his father was diagnosed with Alzheimer’s disease. He can be reached at firstname.lastname@example.org. His newly released book “Managing Alzheimer’s and Dementia Behaviors,” and his other books “While I Still Can” and the expanded edition of “Staying Afloat in a Sea of Forgetfullness,” can be found at www.commonsensecaregiving.com.