“People think it's just forgetting your keys, she says. Or the words for things. But there are the personality changes. The mood swings. The hostility and even violence. Even from the gentlest person in the world. You lose the person you love. And you are left with the shell... And you are expected to go on loving them even when they are no longer there. You are supposed to be loyal. It’s not that other people expect it. It’s that you expect it of yourself. And you long for it to be over soon.”
It was 1987, and I was just beginning to learn about the impact that Alzheimer's has on people and those they love. In the auditorium that day there was a sense of excitement of dreams and hopes to soon be realized. I was a joyful teenager, and it was the day I was finally going to graduate from high school. In the audience I was supported by a hoard of family members, who would have to endure the typical never-ending roll call that occurs with each commencement ceremony. On that day my parents were particularly nervous about the ability for my Grandma to endure this marathon of names. Over the past year we had all noticed that she was slipping in remembering known details, and couldn't do the things she once had with the same ease. We all just chalked it up to old age because what was Alzheimer's? At that time it seemed like just a strange word that wouldn't impact our world.
Soon enough it all began to change as my Grandma looked at my cousin sitting next to my Mom, and proceeded to ask her who it was every two minutes for the duration of the event. Then it was the trip to McDonald's when my Grandpa thought he could leave her unattended, but quickly realized it was a mistake when he found her eating left over food at another table. The next months and years would play out much like many others have experienced. The childish tantrums, the lost jewelry, and the undergarments worn outside her clothes. It took it's toll on our family, specifically on my Grandpa who was never able to grasp that it was a disease and not a choice that was taking a wife, a mother, and a grandmother. Then in the early 1990's she went to the hospital following a heart attack, and was released of her suffering into glory with her Savior in a moment of clarity as she sang "How Great Thou Art". As I'm writing this excerpt the tears are again welling up in my eyes after all the years, but the pain is beginning again.
Over the years I've cared for patients who've had end stage diseases that have robbed their families of that person. Along with those other tragic terminal illnesses Alzheimer's also has the ability to be particularly cruel because it robs us of the person long before they leave this world. When your loved one has Alzheimer's or a significant memory loss, how do you deal with the anticipatory grief of losing that person? Through my personal experience as a family member and a health care advocate, I hope to share some insights that will be useful to those facing this agonizing journey.
Anticipatory Grieving - 4 Ways to Prepare for the Impact of Alzheimer's
Feel the Loss - As a hospice nurse I've seen many people grieve over the years in various ways, and those who've accepted their pain have seemed to survive the storm. The same should be true of those facing the challenge of losing their loved one to Alzheimer's because it is like the thief that comes in the night, and you wake up with nothing. In order to get through this tragedy we must feel the loss, so we can focus on enjoying whatever time and quality of interaction we may have left. This disease primarily has a specific course that it runs, but there may be variations of the disease that progress quicker than others. Being aware is the first step in dealing with this challenge.
Understanding the Journey - Knowledge is power, and I believe that people do better when they understand the challenge they're facing. When you're informed you can develop strategies on how to overcome this horrible situation, have the ability to choose how you'll react, and reduce your stress by knowing about the changes you'll soon see in your loved one as the disease progresses. Part of preparing for this journey is to gain knowledge because it will give you power, and help you focus your perspective. You can tap into agencies like the Alzheimer's Association or the Area Agency on Aging to find resources to support your understanding and needs.
Fight with all Your Might - In our lives we all have challenges that occur that require us to persevere and fight to prevent becoming overwhelmed. Alzheimer's is another challenge that deserves a fight with all your might. There is a lot of research being done to end this disease, but until it's cured we need to be proactive by advocating for our loved one's needs. It may be getting to a provider involved in research studies, having your loved one started on medications believed to slow the progression, or by tapping into a resource that can provide practical steps to support you in this journey. The first step in this fight for everyone is to get your loved one to a geriatric specialist or neurologist, so the diagnosis is defined that will generate the treatment options available for fighting for your loved one with all your might.
Take the Time - Life is so busy, and we all have demanding jobs, family demands, and other responsibilities that absorb what little time we have available for ourselves. It is that time that I believe we need to spend with our loved one to maximize our interactions. When we take the time, we can create a mental journal that will support us during the journey with images of special visits, phone conversations, and moments in time where we were able to soak up their essence. Don't let the little time that is available slip away, but rather cherish each moment.
"As he walked into the kitchen he didn't know where to put his dirty glass in the dishwasher, he also tried to put together a child's dresser and was unable, and finally he got lost going to the store. All I could think was it was happening again, but now it's my turn. It was in that moment that I knew I was losing my Dad, as my Mom and I cried about the anticipated loss."
Alzheimer's is a devastating disease, but if we attack it proactively, love those with it deeply, and cherish each moment provided then we may just make it through the loss this disease causes. At least that's what I'm going to believe, and make my prayer for those of us facing the anticipatory grief of losing the one we love.
"We were promised sufferings. They were part of the program. We were even told, 'Blessed are they that mourn', and I accept it. I've got nothing that I hadn't bargained for. Of course it is different when the thing happens to oneself, not to others, and in reality, not imagination."