Posted by Elizabeth Humphreys was filled with anger about her once vibrant and intelligent mother’s descent into Alzheimer’s. That anger bled into her relationships with her husband and children and, most of all, God, who she blamed for allowing this to happen.
It was then that Elizabeth’s life intersected with someone – perhaps sent by the God she resented – who helped channel her outrage into positive action, eventually leading her to create a nonprofit called Mind What Matters, which provides support to dementia caregivers like herself who are struggling and suffering. Elizabeth recently shared her story, her mission, and her renewed sense of faith with me on “Christopher Closeup” (podcasts below).
Elizabeth was first introduced to caregiving at age 10 when her brother Michael and her mother Madelyn were both diagnosed with different forms of cancer a few days apart. While Madelyn survived breast cancer, Michael succumbed to Hodgkin’s lymphoma.
It was during this period that Elizabeth first provided emotional support and care to Madelyn – and that mother and daughter clashed over their conceptions of God.
With a childlike faith, Elizabeth made a deal with God that she would be the best Christian she could be for the rest of her life if God would spare Michael. Upon hearing of this deal, Madelyn got more angry and serious with Elizabeth than she had ever seen her.
“You don’t make deals with God,” Madelyn declared. “I need you to get that out of your brain right now. God has a plan. He has His will. He has known it from the day that He put you on this earth, and there’s nothing that you are going to do or not do to change His will.”
Elizabeth felt offended that her mother would talk to her this way, and it took her a long time to understand what her mother was saying. Still, they remained close as Elizabeth got older, went to college, got married, and had children.
When Elizabeth was 27, she noticed changes in her mother’s behavior that included excessive drinking of alcohol. Her mother had never been a heavy drinker, so at first she wrote it off to Madelyn cutting loose a little post-menopause. But her mother’s personality shifts kept growing.
“When my oldest was about a year old,” Elizabeth recalled, “there were signs that I couldn’t ignore. Her loss of empathy, her inability to stay on topic when we were having a discussion about something. So we lived in this bubble for about three years, I would say, of me being clear that my mom was not acting normally, and she was much more dependent on me for her everyday life. She stopped developing her own friendships, she stopped doing anything other than me. That became a tremendous responsibility to bear, in that I felt pulled to take care of her, in the same way that I felt pulled as a child, to take care of her emotions, manage her emotions, manage what was going on when my brother was sick and dying.”
It took about three years before Madelyn was officially diagnosed with Alzheimer’s. But even then, Elizabeth couldn’t accept the reality of the situation, partially because she didn’t want to. She believed that some combination of diet, supplements, and exercise could turn things around for her mom. And because Madelyn was high-functioning for a long time, Elizabeth could live in denial during that period. But when reality hit, it hit hard.
Alzheimer’s and dementia are often portrayed as a memory disease, but there is more to them than that. The patient can also suffer from hallucinations, agitation, illogical anger, and an inability to grasp the most basic forms of reason.
Living in denial didn’t serve Elizabeth well. She said, “I had no idea what to expect. I had no idea how to process any of the feelings that I had…When, ultimately, you’re met with these things that are in your face – your parent gets angry with you or really aggressive – it bounces off of you, and then a couple of hours later you’re traumatized…I was not prepared at all.”
Elizabeth felt traumatized in her spiritual life as well. She explained, “When my mom was first diagnosed…I couldn’t believe or make sense of the fact that…she had survived breast cancer. She had survived the loss of her child and had grieved for what she went through…And that this was going to be the way she went out. Alzheimer’s, of all things, it’s the most degrading disease, it’s the most humiliating disease. And that my mom, who was the most dignified woman I’d ever known, was going to go out in that way. I was so angry with God, so I didn’t lean on Him at all.”
That was how Elizabeth lived for nearly six years. Finally, she hit rock bottom mentally and emotionally, admitting, “I need help. I can’t keep doing this by myself…I can’t unravel what’s happening on my own.”
Elizabeth contacted the Nashville chapter of the Alzheimer’s Association to get involved with them and hope they could help her. She was connected with a young woman named Kelsey, who she met for coffee so they could get to know each other. After Elizabeth shared her story, Kelsey invited her to be Co-Chair of their Young Professionals Board.
Initially, Elizabeth told her she couldn’t think of a worse idea because she had two little kids at home as well as her mother to take care of. But Kelsey responded, “Liz, you’re so angry at this disease and what it’s done to your mom and what it’s done to you. Really angry people make great fundraisers.”
Elizabeth had never heard that rationale before, but she agreed to give it a try. Despite some intense jitters the first few times she had to speak in public to share her story, Elizabeth soon thrived, becoming a prolific fundraiser for the Alzheimer’s Association. Beyond that, she also found healing because she felt part of a movement that was bigger than herself, a movement which brought support to the six million people in the U.S. who suffer from Alzheimer’s or dementia and their 11 million caregivers.
Elizabeth’s efforts became so successful that she felt called to do even more to help caregivers. That’s when she created her own nonprofit, “Mind What Matters.” In addition to sharing videos and podcasts that can help people improve their brain health and diminish their chances of developing dementia, its primary function is to practically, emotionally, and financially assist caregivers for dementia patients in their difficult work. In essence, 95 percent of the money raised by Mind What Matters is sent out in caregiving grants to people who apply through their website.
In some cases, the grant money goes toward hiring a professional aide to provide a few hours of respite care so a caregiver can some time to themselves. Elizabeth has also received requests, such as: “Help me pay my mom’s medical bills,” “Help me buy the medicine that controls her anxiety and her aggression so that she quits trying to hit me in the evenings,”…”I would really like to be able to turn my heat up two degrees…because it’s getting really hard to get the gloves on and off my loved one.”
Grant recipients are truly appreciative for what Mind What Matters sends them, and they let Elizabeth know. Regarding their gratitude, she notes, “It’s weird to say this, but it’s the best part of my job. It’s also the worst part of my job, hearing what a small amount of money is to some of these people. The thank yous are overwhelming…What they share with me, that most likely they may not even share with the rest of their family, is a tremendous privilege. And some days I carry it with a bit more heaviness. It’s made life harder for me in certain aspects that were just part of my everyday life: having a nice dinner out, or even taking a nice vacation or things like that. Now I’m always thinking to myself, do you know what you could be doing with this money? Do you know what this is to somebody else? So it’s a double-edged sword, because it literally makes me want to give everything I have away. This is what Jesus called us to do. It literally is what He’s asked of us. But I’m doing it for the first time in my life. And so it feels uncomfortable at times.”
Speaking of Jesus, Elizabeth’s relationship with God has also improved. She reflected, “It must have been God’s hand in some capacity [that] did pull me back in. It’s only because of Him that all of this has happened. There [have] been so many weird moments since I started Mind What Matters that have made that ever more clear. I know that He has His hand, not just on me, but on my mother as well. I still don’t understand. I still don’t accept it. But I do know that He’s working somehow through all of this, and maybe it will be my voice helping somebody else. Maybe it will be me copping to just how dark of a valley I was in that resonates with even one person out there who is feeling that way right now. And maybe it stimulates them making the first step in trying to find healing and find hope.”
Though Elizabeth seems to have achieved a sense of peace about her situation, she defines it as something else, noting, “I think it is acceptance of the tremendous sorrow that accompanies life. I think this is where faith comes in. This is where if you don’t have it, and you don’t have that to lean on and to fall back on, the darkness can eat you. But to the extent you give it over, [you can] say, ‘I’m never going to understand this, God. I just know that I trust You, and I know that no matter what, You’ll carry me through it.'”
One year ago, Elizabeth felt the need to put her mother in a nursing home because she couldn’t adequately care for her anymore. And Madelyn, she believes, has now entered the end stages of Alzheimer’s.
This is a time fraught with emotions and anticipatory grief, but one thing that has helped Elizabeth is discovering a speech Madelyn had written years ago for an American Cancer Society fundraiser. “This was her reminiscing about her early days of grief, within that first year of my brother’s passing,” Elizabeth explained. “And she found herself at a museum in Connecticut…staring at a picture of Mary holding Jesus lifeless in her arms.”
Madelyn wrote, “I was drawn to Mary’s face and then to her eyes, which looked out at me with the unmistakable anguish of fresh grief. And as my gaze met hers, I felt a rush of recognition and comfort. I knew this pain. For the first time I truly understood Christmas, and for the first time I truly understood Easter. And in some sense, I began for the first time to understand my son’s death and to comprehend it, not just within the boundaries of my own experience or religious perspective, but as a universal event which could therefore be communicated and shared with others. It’s a fundamental shift in interpretation and it’s life giving. Why? Because life is conducted for the most part at the individual level. But it’s best understood, and I would argue only understandable, within the context of community. Stated another way, life and death happen to us in isolation. But in sharing our experiences and connecting with others, we’re able to attach meaning and find a level of insight not otherwise available to us. And this is how we survive the most difficult of tragedies in life’s hardships. We find the strength to move beyond them with community.”
Reflecting on those words, Elizabeth said, “It’s almost like [my mother] had written me a roadmap for grief, and here it was hiding in her drawers all those years. But that’s what Mind What Matters is: it’s community.”
Elizabeth knows that the coming days and months will be difficult to deal with. But she has also discovered wisdom along the way that allows her to move forward towards the light.
She concluded, “First and foremost, I found God again. That was a huge piece, for me at least. And now…I let the darkness move through me…whereas before, it would be a really horrific sad moment. And we went through some really bad ones, especially when we first moved my mom into a care facility. I would sob. I would weep. Then that darkness would be there. My husband and I used to joke, I had a two-day rebound [after seeing] my mom. I [would] go be with her, [then it would] take me two full days to where I could come back to equilibrium. My mom’s case this last year has been traumatic. Her mental health has been really bad along with the Alzheimer’s. So there’s been some combined things that have made it particularly ugly.
“The care facility where she is, there’s a lot of very happy people with Alzheimer’s and dementia coexisting. And my mom is not in that [category]. But now I think, either through God’s grace or enough time and healing, or both,…I’ve given myself permission to feel it all as hard as it is. And if I have to break down and cry, or if I have to weep, I do that and I let it pass…I think only because I’m finally not her everyday [caregiver] that I’ve been able to do that. When you’re in it every day, it’s very hard to do that. But I’ve been given this period of time, 12 months now, where she’s not been in my house every single day. I think I’ve finally started to heal.”
(To listen to my full interview with Elizabeth Humphreys, click on the podcast links):
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