It seems like the world comes crashing in when a loved one is diagnosed with dementia or another memory disorder. Watching a loved one slip away is a heartbreaking experience for the families who are affected.
But as individuals like David Hilfiker who have shared their struggles with memory disorders online have attested, there is more than one side of this story.
Discussions about memory support for Alzheimer's and dementia patients, including our own discussions here at Marjorie P. Lee, are often centered on challenges that caregivers face in helping loved ones throughout the progression of the disease.
However, while it is important that families know the best strategies for providing care, receiving a diagnosis from the doctor is a confusing and terrifying experience.
We must not forget the fears and struggles of those who have been diagnosed.
Fear is one of the most powerful antagonists you will face, and you need the support of others to beat it.
The insecurity and loss of control that come with dementia breed fear for both caregivers and patients. David Hilfiker, a former physician who was diagnosed with cognitive degeneration in early 2013, wrote about his greatest fear— that of driving his spouse away:
"I know my own reaction to a demented person. What do I say to him? How do I respond when he asks me my name for the fourth time in fifteen minutes or repeats a story he just told us? As a result, I’m afraid, I find one way or another to abandon the sufferer, not because I want to but because I don’t know what else to do. That’s certainly what I usually did. But abandonment is what I now fear the most. I want those of you who don’t have the disease to know something of what it’s like to be in this position so that it’s not so difficult, so you can allow yourself to find your way into the world of the Alzheimer’s disease sufferer, find your way back into a relationship and won’t have to abandon me or others so easily."
And this is where Alzheimer's support groups can be so beneficial to both caregivers and sufferers alike. Hilfiker has noted that many people who read his blog feel isolated, as if they have no refuge or resource:
"Isolation is a source of great pain for both the caregiver and the person with Alzheimer’s (or other cognitive impairment). This is still a disease that provokes shame; most people are afraid to speak of it or relate to it, which leaves both the person with Alzheimer’s and their caregivers alone with their disease… For some readers, it seems that the embarrassment and humiliation are so acute that simply reading here about others’ openness and honesty is cathartic.”
The ability to talk about Alzheimer's, he said, might be the best source of comfort:
"Emails sent to me… frequently commend my “honesty” in describing my own struggle with my impairment. Part of what they are referring to, I think, is that they have no safe context in which they can speak openly about their experience… I’m assuming that those who find my candor helpful don’t have many places where they feel safe enough to speak honestly. They have no Alzheimer’s Anonymous."
Memory care only staves off the inevitable. The time you have together is special.
If you feel afraid, remember that your loved one does too.
Reach out. Even if the cognitive dysfunction has progressed to such a point that he or she cannot respond, a simple touch or look may register and help to alleviate both your fears. Listen to music, or just sit together and hold hands.
When memory support is no longer effective, you will still have each other.