I recently had lunch with a dear friend. Sometimes there are blessings bestowed upon us through the most unimaginable of times. She is one of them to me. Jim and I met her and her wonderful husband while advocating in Washington D.C. We immediately hit it off and have been confidants and friends ever since. We get where the other is. When I found out Jim was “actively dying,” I called her and she was in his room when I arrived. We have a bond and connection that defies words, simply because without having to say anything we understand minus judgment how the other is feeling, what they are thinking and unfortunately the worry, guilt and stress that comes along with our journeys.
During our most recent conversation, my amazing friend confided that she sometimes wished her husbands’ fight was over. She immediately followed up her statement with, “I know I can say this to you and you will understand. There is no one else I could utter those words to.” And I got it. I understood and I felt her pain at releasing those thoughts out into the world to be heard aloud. To admit caregiving is taking a toll. To admit that watching her beloved husband of thirty years decline and become someone she doesn’t really know anymore is too painful. To wish for a world that didn’t actually include her best friend. She probably regretted her words immediately, but unfortunately, the feelings will remain. The dark place they hide will cause anguish and shame. But I knew exactly where she was coming from and the despair that was actually to blame for such shocking words to be spewing from such a remarkable woman.
Before you judge, before you pass any kind of thoughts on this, let me tell you about my friend and her husband.
I have never seen someone more patient with someone with dementia. She doesn’t yell or scream. She doesn’t curse. She is wholeheartedly in love with her husband and rarely spends time away from him. They are inseparable. They are best friends and still laugh and enjoy each other’s company. But he has started personality changes and each day seems to be declining in ways we all are too familiar with.
She has seen her own health decline, ending up in the hospital numerous times, once almost dying herself.
As we were sitting and chatting she told me her metaphor for what they are going through (we all have one—mine was swirling down a porcelain sink, unable to grab the sides to stop the inevitable disappearance down the drain). She described feeling as if she was walking on a frozen lake, and as she walks further and further, the ice gets thinner and thinner. She can hear it crackling under her feet and knows that at any moment the ice will shatter beneath her and she will be alone in the freezing water below.
Every day she spends worried about her husband. She has raised thousands and thousands of dollars for the Alzheimer’s Association. They have been very vocal about his diagnosis and all that comes with it and have spread awareness to the masses. They have been part of medical research and helped in support groups. There is nothing this couple hasn’t done to try to save him and help others. Nothing.
And there is not anything this woman wouldn’t do to save the love of her life. She is a true Christian in every sense of the word. Yet, she understands that we treat our animals better than we treat our loved ones with a disease that has no cure and only burdens families emotionally and financially.
She is seeing her husband recognize his own shortcomings, his changes and his decline. His depression and anger are palpable. Yet, there is nothing she can do besides bear witness.
This message isn’t to start a political debate. This message is to let all of you know, you aren’t alone. It doesn’t mean you don’t love your parent or your spouse you are watching succumb to this horrid disease. Just the opposite. You love them and don’t want to watch them suffer. You don’t want to see the person they are becoming because it isn’t them. And you are helpless. There isn’t a pill to take or a treatment to stop the progression. A progression with no timeline.
My friend has been caring for her husband for 11 years. And she doesn’t know if it will be another six months or another 11 years. She doesn’t know if he will be around next holiday season or if he will even know and understand. She doesn’t know if he will be able to feed himself or get dressed or get a shower. She doesn’t know if she will have to put him in a home. She doesn’t know if he will start to fall, become violent (he has had a few outbursts) or if he will one day just not recognize her, their son, or himself. It takes a toll on you that is indescribable. Sometimes not knowing what is going to happen next, or when it will happen, can lead to anxiety and high blood pressure. Stress over financial decisions and keeping someone else safe and comfortable can cause lack of sleep and depression.
How do you deal with the emotional toll? How do you cope with losing someone you love bit by bit?
This is a sacred time. Being part of the end. Even if it is years in the making. It is a time of reflection and time to connect on a different level. It is a time of love in a form you could have never fathomed.
We are all in this together. Stay strong and know you are not alone.