There has been a really big thing that has been happening in my family. I have wanted to write about it for so long, to put it out there into the world. Wanting to know DOES ANYONE HAVE A CLUE WHAT THIS IS ALL ABOUT? Because let me tell you it has been intense, and continues to be. And none of us really has any idea of what we are doing.
You see, one of my family members is sick, really sick. For the sake of privacy I have not mentioned anything. But now we are so deeply ingrained in this sickness. There is no need to hide it. There is no need to feel shame in it. It just is and continues to be. I have received the blessings from my family to finally talk about it. Now I get to share this story, and please, if you have a story to share, please contact me. I feel like there is so much I want to ask you.
This person is my sister in law.
Kelly is a healthy, beautiful 43 year old woman. She has 4 beautiful children. Coming into this family I have viewed her as a kind of matriarch. Her mom (and my husband's) is no longer alive, and Kelly has always been such a seasoned mother. She'd call my husband all the time to check in, always ending the conversation with "I love you". Her heart is very, very good.
About a year and a half ago we started noticing that she was acting "strangely". She became socially awkward, in a way that we didn't understand. We didn't mention it to each other for awhile; it was just a subtle awkwardness. It was her lingering answers. Talking about a conversation that happened 10 minutes ago. A sort of obliviousness to the natural flow of conversation.
It kept getting worse. Eventually we started talking. "What's up with Kelly?" No one knew. She started acting stranger and stranger. She started making up stories, telling us bold faced lies that we all knew were not true. She was seeing and believing in things that weren't happening. It started getting scary.
This is a strange situation to be in. We confronted her as a family. "Kelly, we think you need help". She would respond by changing the subject by telling an unrelated story. It continued to get worse. She became so "checked out" that you couldn't even have a reasonable conversation with her. We became desperate, really and truly having absolutely no idea what to do. She finally agreed to go to a psychiatrist.
Upon meeting Kelly the psychiatrist recommended that Kelly go to an inpatient psychiatric unit. So she did. She was there for several months and all she got was worse. And more worse. She started looking different. She would look at you with either a blank stare or total confusion. She showed no emotion whatsoever except when she would cry. Her body would shake. She was drifting so terribly far away from us and no one knew where she was going. Not even the doctors. She tried a multitude of medications and therapies, all to no avail. Eventually they said there just wasn't anything they could do for her. And this was a terrifying thing to hear.
She came home as a deeply sick woman. She wasn't able to take care of herself. She would wander. She couldn't be alone. Yet coexisting with her were her 7 year old daughter and her husband, both of them desperate for answers. Both of them desperate to have their wife and mom back.
Eventually her behaviors got her into a medical hospital and it was there that the picture began to make sense. At University of CO Hospital she received x-rays, CT scans, an MRI, blood work. A picture began to form. It explained to us how the beautiful, loving, smart mom and woman that we all knew and loved had changed into someone so sick. How she changed so dramatically in less than two years.
Kelly, my 43 year old sister law and mother of four, has frontotemporal dementia.
Dementia.
At an alarming speed the cells in her brain were dying. This was on one hand relieving to GET A FRIGGING ANSWER and yet the most heartbreaking scenario that we could imagine. She was, and is, dying. Her brain is getting sicker and sicker, and YET, her body continues to be healthy, to be young.
There is so much I want to say on this subject. I feel like I could type endlessly about grief. About frustrations with long term care placement. About Medicaid. About family dynamics. About loss. About being really fucking pissed off. About being really fucking sad. About having no control. About how to support each other. About what this is doing to Kelly's husband and her children . About losing somebody that is actually still right here with us. About how unbelievably expensive dementia facilities are. How scared I am that there is a gene for this running in my daughter and my husband's DNA. How UNFAIR it is that someone in the prime of their life has to go through this.
We are learning so much but I will say that ultimately, this is a disease that does not have a lot of community support or information. You just don't expect to get something like this. You just don't.
I want to end this post by mentioning my brother in law, Rick (Kelly's husband). This is a man that literally had his world crash down on him, who day after day gets up, brushes himself off, and takes care of his wife and daughter (Kelly's other children of a previous marriage do not live with her.) Words can not possibly convey the work that he experiences with his job, his new role of being a father AND a mother, and the new "child" that is his wife, who constantly needs redirection and safety. Not to mention the forms, the guardianship, the long term care applications and a myriad of other things that frankly any young reader should and probably has no clue about. Yet despite all the trials he continues to be the strongest soldier in fighting for his family, and it is a constant battle. He does it because he must, but the quality about him that I most respect and admire, is his devout love for his wife. His sick, sick wife who only partly resembles the woman he married. His love has been profound and when I think about it I very clearly see how beautiful and heartbreaking, love can be.
Love is about being present. When you have dementia, you lose your memories. Your future is uncertain. The mere ability to communicate overwhelms you. Being present is all that you have. Being present with her is the best that we can give. We are learning how to do this.