Updated: Sep 30, 2019
Years ago when my mom's PCA Alzheimer’s diagnosis was still relatively new, I had a giant rant about cancer. I even pulled off the road in my car one day and voice recorded myself on my phone ranting about cancer just to get the tirade out of my mind so I could continue on with my day, and my drive, and to attempt to function.
“Why can’t it be cancer? I would give anything for this Alzheimer's diagnosis to be a cancer diagnosis instead. Please can we trade it for cancer? ”
This is not meant in any way to be disrespectful to those suffering from cancer or for the people who love them, who are crying day in and day out because of how awful it is. This is in no way diminishing that pain or the journey. It is, though, honoring the others, like me, who have wished the same. Who have wished for cancer instead.
And I know you’re out there.
One of the big wonderful gifts that group therapy gives you when you’re an Alzheimer’s caregiver is that you finally realize that all these horrible things you’re thinking in your head that make you feel like a terrible person, are thought by everyone else who is in this same boat. We all have been there, wishing that now we can trade in that “get out of jail free card,” trade the A card for the C card.
But why? Because of the one thing that the C card allows you to do that the A card doesn’t. To fight. To fight like hell for one more day, one more minute, one more healthy cell. For hope springs eternal, right? Hope and fight and pray and you may just be in that percentage that beats it: "I beat cancer. I won. I live."
The Alzheimer’s Association holds its annual Walk to End Alzheimer’s, and there are these pinwheel flowers that indicate each possible connection to Alzheimer’s or Dementia: orange is a supporter or advocate of the cause, yellow is for a caregiver or someone who has a loved one with the disease, purple is for those who have lost someone they love to Alzheimer’s, and blue is for those living with Alzheimer’s. There are not that many blue flowers at the event on the day because not that many walk about and participate in everyday life. My mom made it one year to a walk, in her wheelchair, with a blue flower that we helped her hold. After that, we walked with our yellow flowers because she was at home, in bed, with someone doing morning duty, staying in the house as a supervisor in case she woke up early that day.
At the Walk, there is one - ONE - white flower. This the flower reserved to symbolize the first survivor. Because there isn’t one yet.
It is a wish… there is a dream, there is science, there is research, there are drugs, there are trials, there are studies… but no one has walked with that white flower yet. The Walk started in 1989. 30 years… no one has walked with that white flower for 30 years and counting. But you go to a cancer walk, and there sure are a helluva lotta survivors walking.
So that is the start of my C rant. I am allowed a dream, but I am not allowed hope.
The second part of my cancer rant is the stigma of cancer vs. Alzheimer’s. Everyone knows someone who has had cancer. Either you’ve had it yourself, or you know someone who beat it, or you know someone who died from it. Everyone. Skin cancer, brain cancer, breast cancer, lung cancer, throat cancer, leukemia, Hodgkin's lymphoma, colon cancer, pancreatic cancer, prostate cancer… there are more of course, but those are the ones where I have a first degree of separation from someone who had it. Some are gone, and it’s still heartbreaking. Others beat it, still others beat it long enough that they died from something else entirely. And do you know what these people have in common? There is no stigma anymore. Call out the cancer cry, and there is an immediate rally. Somebody organizes a rideshare to get them to doctor appointments and chemotherapy treatments. Somebody organizes a food calendar and delivery. Someone sets up a Caring Bridge site and a fundraiser. Still others send flowers and cards, offer to mow the lawn, shovel the driveway, walk the dog. There are prayer circles and phone calls asking, “what can I do?”
With Alzheimer’s there are crickets. Many many crickets. *chirp chirp*
Crickets and stigma. After so many years at this, I honestly think that there are people who think they may catch it. That if they visit, and hold the hand of the person with Alzheimer’s that it’s contagious. Still others are just far too depressed by it that they stay away because they can’t bear to see it. This is one of my favorite excuses: “I want to remember her how she was.” Well isn’t that nice? I want to remember that too. But here I am changing poopie diapers instead while you’re binge watching Stranger Things.
Oh look, I said this cancer rant was years old but there is still a whole lot of bitterness left in me, isn’t there?! I am not saying no one has ever helped. I am not saying that at all. And I still to this day hope that those who did really help us know how eternally grateful we are. We found the Mary Poppins of caregivers, and I don’t know what I would ever have done without her help, reprieve, smarts, and friendship. We had a stranger see a story about us on the news and offer to come help us out when we needed a break. That is truly, truly special. I organized a giant yard work party one year when we desperately needed help catching up on yard work and 25 people showed up to help us do in 2 hours what would have taken us months. Family, friends, and even people who had never met us but were from the area and heard the call for help came and gifted their time and sweat to help a family in need. There is good in the world. There are good neighbors.
Those glimmers though, they aren’t enough to get you through the day in and day out of years of caregiving for someone with Alzheimer’s. Firstly, it happens slowly. So there are no meal organizers after the diagnosis, often because the person keeps the diagnosis a secret. My parents sat on that nugget of info for five whole months before they told me, and I got it out of my dad kicking and screaming. (Ok, not literally but I had to bluntly demand, "Is it Alzheimer's???) They did not tell anyone else for over a year. And by the time you need the meal delivery and the help with housework and the help with yardwork and someone to walk the dog, you are years in to the journey and are so stressed and tired and sad and lost that you don’t know how to ask for the help. In fact, I bet this is the point where a lot of families give away their dog because it’s easier than asking for help. Talk about added heartbreak…
I tried organizing a calendar to get help from family. I thought, “hey my mom is 1 of 10, so there are at least 15 aunts and uncles and 20 or more cousins that will help us balance this load.” It worked for a couple weeks. I had a couple aunts, and a couple uncles come over to watch the kiddo so my husband and I could go on a date. An aunt came to be an extra set of hands when I had a wedding to attend. That summer there was a slight reprieve, a couple times a month for a few months. Then...crickets… I soon realized that if I didn’t ask, no one would offer.
And I get it. I get that I should be asking. But it’s exhausting. It’s exhausting asking for help when you start to truly believe that no one wants to help.
I ask for help. I ask for donations to the cause. I am open about our struggles and emotional turmoil. I swear to you that I have cousins who have blocked me on Facebook because they just don’t want to read my posts anymore. I think my passion for the cause depresses people that much. I do.
I have never blocked a loved one on social media who was struggling with cancer…
A family I know had a grueling battle with colon cancer. An inspiring couple who always demonstrated to me what it was to truly love and adore your partner. I was lucky enough to know them both and work with them during their courtship, marriage, and I was even present for the birth of their child. His cancer diagnosis was a punch in the gut to so many who loved him, and I was far away so I did what I could with donations and gifts and texts and visits in lieu of being on the food train calendar and not being able to be in a ride share. When he passed away, he bravely asked everyone he knew to never say “he lost” because he won - as far as he was concerned, he was finally going to a place where cancer could no longer hurt him, and therefore he won the battle. His wife, my friend, continues a painful grieving process. One that will haunt her forever, as they were still so young and so in love and raising a young child together too.
Someone called her six months after he was gone and said, “how are you?” (that arbitrary midwestern thing we ask without thinking) and she coldly responded, “how do you think I am?” I hate that question. I no longer have it in me to answer, “fine” and I warrant my friend doesn’t either. If you don’t mean it, don’t ask it. If you don’t want to hear the truth, don’t ask it. And if you are asked it, I urge you to find the strength to speak the truth. I saw her recently and said, “I am not going to push talking on you if you can’t talk about this right now. I just want to know, are you getting the support that you need?” To me, those are the types of questions that need to be asked. And when you ask, be prepared to offer the support that he or she isn’t getting.
This friend has said to me numerous times in our parallel journeys of cancer and Alzheimer’s, “I feel for you because I know how hard caregiving is.” It’s true. She does. Those final months and weeks and days when your loved one is on hospice are brutal. Those years of rescheduling or juggling it all when your loved one needs to cancel plans to sleep when their body can no longer function are trying. There’s a bit of a love affair with hospice workers too. You’d think you’d hate them because of what they represent, but instead you fall deeply in love with them because of what they offer you.
The Alzheimer’s caregiving journey is another kind of brutal. It’s the long slow goodbye. It’s the years of progressively getting worse and worse. It’s the days when you’re blindsided by a sudden decline that forces you to quit your job or place your loved one into protective care. It wears on you until you are sallow and greying and sleep deprived and undernourished. And through it all, there is no hope.
In a way though, I don’t envy my friend the hope she had while she watched her hero of a husband battle cancer. The shattering grief of a love lost hoping for a miracle is devastating. I have so much grief around losing my mom, but it’s different. It’s real but it’s expected. It’s painful, but I’ve been living with this pain for years. It’s imminent, but I am prepared, even ready. I do not want to say goodbye to her and to never see her eyes look upon my face again, but at the same time I yearn to say goodbye. I ache for the peace her death will bring her, and us all. There is no hope. But eventually, there is peace.