The hockey stick experience of CJD

As the wife of a CJD (Cruezfeldt-Jakob Disease) sufferer, I have never, ever been through something like this. We had my mom living with us for a few of her last years as she suffered through Alzheimer’s. That was so traumatic, but in so many different ways. This is my husband. My best friend. My partner. My world. And he is crumbling before my eyes. And as it is commonly called, CJD is Alzheimer’s, Parkinson’s, and dementia’s wicked cousin.

It may seem weird to have a hockey stick in here, but let me explain. The neurologist used this with us as he was explaining this disease. Cruezfeldt-Jakob can float along within someone for literally decades, and then all of a sudden, the symptoms come fast and furious. So when you look at the arm of the hockey stick, those are the decades slowly going by. The paddle at the end of the stick is the uptick in symptoms. Or as my eldest son says, “It’s when the ugly comes out.”

CJD can eventually rob the sufferer of their sight, their hearing, their ability to walk, to talk, to swallow. Why? Because it is literally eating their brain. Like Dementia on crack. So many people have offered so much advice about supplements and drugs. You cannot supplement what is no longer there.You cannot create brain cells using supplements. There is no known treatment, no known cure, and no known medication that can do anything but treat symptoms. And as this progresses at a breakneck speed, we are now trying medications to ease the symptoms. The ugly is coming out. Fast.

There have been so many comments about what happens when something like this tragedy happens to you. About who will reach out a hand and who disappears. As in “when the going gets tough the tough get going,” or “just wait and see who your friends really are.” And I must admit I have been overwhelmingly comforted. There have been fund raisers which allowed us to see Hawaii – something we have always wanted to see – and which allowed my husband time to snorkel with his sons and swim with sea turtles, as well as learn to hula at a luau. And while we were in Hawaii, a dear friend arranged for my husband to visit a miraculous icon (Our Lady of Iveron) and receive a blessing with the miraculous oils. Such an incredible moment. There have been blessings amongst all this ugly. And, there have also been those who have been, quite bluntly, butt hurt because their name did not register on my phone and I had to ask who was contacting me. Frankly, I have so many reaching out to me that I do not even know. They are family members on my husband’s side or co-workers I have no knowledge of – names that are not on my contact list. And I cleaned out my contact list because I was getting a lot of fraud. So when this person’s name was not on my list, and they had to tell me it was them, and that they were arranging a time to bring us meals, imagine my surprise now, because I haven’t heard from them again?!? And frankly, maybe that’s okay, too. Why? I do not have the time nor the energy for their shenanigans. I am dealing with so much more than soup.

My husband is now officially on hospice. The time I have with him is now being measured in weeks. He was just diagnosed in March. I am overwhelmed. I am now dealing with palliative care teams, hospice teams, PT and skilled nursing, equipment being delivered, and preparing to have a home death. My sister-in-law shared a great analogy with me. And it is this: we are all given a bowl of marbles every day. That may mean moments of your time, or energy to do something, or appointments to attend, and any other thing that drains time and energy from you on a daily basis. And every once in awhile I just tell people I have no more marbles today. I just cannot take another step or deal with someone’s fragile personality quirks. Every moment is perhaps my last ones with my husband. For me, that is my number one priority, and not worrying about how others feel. I could care less. And that is not harsh. Not in my book. Not at this moment in my life. Not when it has to do with my husband.

I am already in a phase of grief. I am mourning what I will never have – retirement and old age with my husband. I have another 20 years of life left (my family members live into their 90s and 100s) – and I will spend it alone, as a widow. And I have discovered that death, and a rapidly impending death, is an intimate thing. It isn’t really for public consumption. People we have only casually known want to come and visit and check to see if my husband’s faith is in the right place so he can be assured of heaven. I was so appalled. How dare they question him!? Where have they been before, ensuring his walk with God was appropriate? Why didn’t they develop an intimate relationship with us on that sort of level, prior to this death sentence? They proclaim Christianity as their faith, but boy oh boy are they judge-y! Their brand of Christianity does not include icons and crosses and collections of religious art. I really believe it made them uncomfortable. LOL. That shows me how little they know me. The history buff. The traditional art lover. The Biblical Archeology minor in college. And yet they want their time with my dying husband.

What I have learned through this process, is that not everyone who thinks they have a role or a part to play in this journey, has a close up position. And this list of who is and who isn’t getting up close and personal is my decision. My husband’s neurologist told me that I would now be the protector of my husband because as his mind decays, he will be incapable of protecting himself. And so I have two gatekeepers. Since day 1 of this diagnosis, my eldest son told me, “Mom, I got this. I will be your gatekeeper. And if people want to think I’m an asshole (his term, trust me) that’s fine with me. I will protect your time and your privacy. I will deal with people who want to help, who want to donate their time or food train or whatever, and I will keep the majority away.” We both realize this is not for public consumption. You kind of have to earn admittance. Sounds weird but in this time crunch, very few will be up close. This is my time with my husband and my children’s time with their dad, and our grandchildren’s time with their grandpa. Not even siblings on either side are as important as the family we started 40 years ago. And I asked a very special friend in my life to be here when I need her, to keep people from walking in. Most have asked if it is okay, because they know he is fragile and not truly himself anymore. But we have had people just show up and walk in, uninvited. And that is not cool. At all. And my ginger-haired fireball of a good, good, friend will keep intruders at bay. God bless that woman – she and her husband would protect me and my family in a heartbeat. Very few friends truly “have your six” and I am blessed by her presence in my life. Our weekly four-hour conversations have been legendary with our spouses. Ha-Ha. She will be my Gandalf!

Very soon my living room will be my husband’s bedroom. Hospice will bring in a hospital bed and he wants to be able to see the backyard as he is dying. His bed will be placed so the window and the yard outside are what he sees. So not everyone gets to come into your bedroom, right? He has asked for specific people to be around him as he passes. And that is a very small number and to be honest, pretty much me and our kids. So my gatekeepers will keep the well-intentioned look-y loo’s away. Dying is a holy and intimate act. And I intend to keep it that way.

As this ugly creeps closer and closer to both my husband and myself, I find myself mourning. And even though I am keeping it pretty together, I have lots of moments of sobbing and being inconsolable and it wipes me out. I don’t have time for that now. In just weeks, it will become my life. I married once. For life. And I intend to honor those vows, even though “until death do us part” sounds final, in my heart, it is a forever thing. So today with what few marbles I have left, I gave him a shave, so his beard is gone and he feels good about his appearance (and I am no barber, but I learned on the fly!). I am doing laundry. I am helping him use my iPad to play Sudoku (he loves that game but is a button-pusher and gets himself lost on the iPad). And I cleaned bathrooms and straightened the house up because a very dear couple is coming to visit us this afternoon. They are part of the close-up crowd. After they leave, I am pretty sure I will be out of marbles.

For more information, please contact www.cjdfoundation.org and consider donating to help scientists worldwide learn more about this disease, and to help eradicate it.