The more a person becomes dependent on others, the more protection he needs. A person with dementia needing the assistance of others is considered a vulnerable adult. He can’t defend himself or speak up for himself. He can’t demand exceptional care, courtesy, and respect. As his advocate – that’s where you come in. When he doesn’t have a voice – you step in to be that voice. Your reward will be great if you succeed in doing so.
Part of what I do in my working life is to advocate for vulnerable adults by doing what I can to promote dignity and quality of life for those I have the privilege to serve. As a family member, or good friend, to an adult with dementia, your task is a monumental one because along with your caregiving role, you must also excel at the task of advocacy. In my blog article, “Be an Advocate for your Loved One” posted on this blog November 14, 2011, I discuss the various ways in which you can advocate for your loved one. This current article is the last article in my “Understanding Alzheimer’s and other dementia” series and it addresses the issue of dignity and privacy.
My dad in the 1960's; a former Marathon runner
As those of us who have, or have had, loved ones with dementia we know without a shadow of doubt, that our loved one’s current condition does not reflect the pre-Alzheimer’s/dementia person. A grandmother who previously never spoke the “F-word” now speaks it as though it were just another word in her vocabulary. A previously modest and distinguished gentleman now routinely removes his clothes in front of others, and/or may be inclined to grope his caregivers or other residents. A former globally recognized businessman, sought after for his abundant knowledge in his field, now needs others to feed him and has lost the ability to string a meaningful sentence together. Our loved one’s new normal is shocking to those of us who are close to the person with dementia, and completely foreign to those who are not.
Keeping people informed about your loved one’s condition.
Those who definitely have an attachment to your loved one: friends, coworkers, close neighbors, and of course family members, will probably appreciate knowing what’s going on with him. It’s important to use discernment when deciding who needs to know – and who doesn’t. And thanks to e-mail and texting, we can update people immediately and thoroughly with no need to pick up the phone. That’s truly a bonus, isn’t it? You’re already stressed and emotionally drained by your situation so having to conduct numerous telephone calls and provide the same update to several people would be prohibitive at best.
But with the ease of e-mail comes the temptation to be too thorough in the e-mail missive. You’ve already discerned who needs to be kept updated; now you need to use judgment on how much you say and how you say it. Does your neighbor really need to know about your husband’s incontinence? How would it benefit your mother’s former coworkers to learn that their former Marketing Executive now drools throughout the day and can no longer feed herself? More to the point – ask yourself this question: How would my spouse/parent/partner/sibling/friend feel if they knew I was providing all the gory details of their dementia progression to those near and dear to them? The answer, I believe, is obvious. If they could, your loved one would say, “Please don’t let everyone know what I’ve been reduced to.” Showing respect for your loved one includes protecting her privacy, and thereby her dignity. And I’ll tell you from experience – those on the receiving end of the information would rather you be brief and not overly descriptive.
Celebrate the uniqueness of your loved one.
My dad in the 1960's "fixing" the toilet. He always was a jokester!!!
Your loved one is not just some generic living and breathing person in the Early, Middle or Late stage of Alzheimer’s. He may not be able to do everything he previously could – maybe he’s not even able to speak – but you can still celebrate him as a human being. Everyone mourns what’s been lost; hardly any one celebrates their loved one’s remaining attributes. I learned a lesson from my father during the middle stages of his dementia. I was quick to finish his sentences, or rush him along by answering people’s questions for him. My dad didn’t have to use words to express his displeasure when I did that. He slumped in his chair, looked at me, and let out an exasperated sigh. I stopped right then and there and made no further attempts to rush him as he conversed. Doing so would take away one of the abilities he still had – talking and getting his point across. It may have taken him a long time to complete his thought, but he still had the ability to do so. Please don’t take away the remaining vestiges of your loved one’s independence and abilities. If you feel compelled to feed your loved one just because they take a long time to eat their meal, you’re training them to rely on you for that assistance when they could have been doing it on their own. Who cares if it takes 60 minutes instead of 15 to finish a plate of food? If they’re still able to feed themselves – celebrate that ability. Don’t take it away for your own convenience.
Walk into their reality – don’t force them to enter into yours.
We’ve all experienced conversations with our loved one wherein he or she talks about things that didn’t really happen, although they are convinced that they did. What’s the harm in agreeing with them and going along with their story. Your wife says, “Didn’t you enjoy that trip to the Grand Canyon we took with the kids a few years ago?” O.K. – first of all you don’t have any children, and second of all, you’ve never been to the Grand Canyon. Instead of trying to convince her of what’s real – and making her feel bad/ashamed in the process – talk about the great view, or how all the kids fell asleep in the car and missed the entire gorgeous spectacle. I can guarantee that if you change your paradigm regarding this development, both you and your loved one will be better off. The Alzheimer’s Association has a great adage that they offer us caregivers to help us along the way. If you don’t insist – they can’t resist. I challenge you to go with the flow instead of trying to paddle upstream. Don’t cause contention. A little make-believe goes a long way and harms no one.
AARP magazine reviewed the book Dancing with Rose: Finding Life in the Land of Alzheimer’s by Lauren Kessler. This memoir by Ms. Kessler is portrayed as “an Alzheimer’s tale that’s warm, uplifting, even hopeful – qualities not normally associated with the illness. This odd dichotomy – joy atop a ravaging disease – makes this book a refreshing standout.” Alzheimer’s and other dementia have the ability to peel away a person’s former mask to allow what’s underneath to surface – pleasant or not. What Ms. Kessler learned in her journey with her mother is that “if viewed from a different perspective, Alzheimer’s is not the end of personhood.”
Yes – dementia changes who your loved one is. It oftentimes reduces him or her to childish, and then infantile behavior. But they are still a person. They are no less worthy of your respect and your compassion. This hardest task of your life will end some day. In the interim, may you be merciful to your loved one and may those with whom you are associated support you along the way.