The dynamic of a child-parent relationship is one that shifts many times over a lifetime. It twists and turns as children become adults and parents go from hero to human. It’s in your twenties when you start to discover who your parents are as people beyond their Mom and Dad identities and hopefully forge an adult relationship that’s based on mutual respect and a desire to see the other as an individual and not someone that is innately yours.
But many people don’t get to see their relationship inside this new framework. This was the case for Lauren Dykovitz. She was 25 years old when her mother, Jerie, was diagnosed with Alzheimer’s disease.
Jerie’s diagnosis took hers and Lauren’s mother-daughter relationship to an entirely different place. It stole moments from them and changed the direction of their story. For a decade, Lauren loved and cared for her mother with Alzheimer’s disease and shared her journey on her blog, Life, Love and Alzheimer’s. Eventually she published a book titled “Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s”.
I was able to connect with Lauren and ask her some questions about her caregiving journey. In reading through Lauren’s blog and social media, I was drawn to many of her statements. For that reason, I let her quotes spark my questions. As she says herself, “I’m not an expert on Alzheimer’s disease, but I am an expert on loving someone who has it”, and I’m so glad she agreed to give us some insight into her experiences.
“You still deserve to live your own life even though your loved one is living with Alzheimer’s disease.” – LD
You write a lot about guilt. How difficult was it for you to cultivate your own life while your mom was deteriorating? Why do you believe it’s important for people to continue to live a life for themselves, even as their loved one is battling Alzheimer’s disease, and do you have any advice on how to make time for yourself?
I found it extremely difficult to continue living my own life while my mom was living with Alzheimer’s disease. I was only 25 years old when my mom was diagnosed and I was still trying to establish my own adult life. I was working my first full-time job since graduating college. I wasn’t married yet and I had not yet purchased my first home. My mom’s Alzheimer’s disease was a factor in all these major life decisions for me. I quit my full-time job to help care for her, I kept my wedding small and simple to make it easier for everyone, and I purchased my first home just minutes away from my parents’ house so that I would always be available to help out.
Mostly everything I did revolved around my mom’s Alzheimer’s disease and wanting to be around to help care for her. I put my entire life on hold while she was still living. I didn’t work, take trips, or accept opportunities. I figured I would wait until she was gone to do all the things I wanted to do. As a result, I lost myself and my life to my mom’s Alzheimer’s disease. I think it’s very important for other caregivers to try to preserve their sense of self and parts of their former life while caring for someone with Alzheimer’s disease. If not, they risk losing themselves like I did. It is a lot of work to put the pieces back together and rediscover who you are once your loved one is gone. If you’re able to hold onto a piece of yourself and your former life, it will be a little bit easier of a transition once your caregiving journey is over.
As for advice, little things add up over time. Take just a few minutes each day to do something you love – a sport, a hobby, watching a show, listening to a podcast – anything that reminds you of who you were before you became a caregiver. Allow yourself to dream about a life after Alzheimer’s disease. It may feel selfish, but it will give you a bit of hope about your future and remind you that you still have your own life to live once your caregiving journey is over.
“People often ask if your loved one still knows who you are, as if that’s the threshold to determine how bad it is. I wish more people understood that there are far worse things about Alzheimer’s disease than your loved one not knowing who you are. That’s only a very small part of the disease.” – LD
Perceptions that come from outsiders are often riddled with misconceptions. From your perspective, what are the most difficult aspects of Alzheimer’s disease?
My mom forgot how to bathe herself, brush her teeth, and dress herself. She forgot how to prepare meals for herself and how to feed herself. She forgot how to have a conversation, make a phone call, and answer the phone. She lost the ability to read, write, walk, and stand on her own. She couldn’t use the bathroom by herself. She lost the ability to control her bladder and bowel movements. She didn’t take a real shower for the last two years of her life because there wasn’t a shower on the first floor of her home.
My mom could no longer care for her house, her husband, or her daughters. She never got to hold or babysit her granddaughters. She couldn’t even go to the hospital when the second one was born. She never knew or remembered their names. Not only did my mom forget who I was, she forgot who she was. She forgot every memory and every detail of her whole life—the major milestones and the mundane details of everyday life.
Eventually, my mom could no longer sit up or get out of bed at all. She could not move her limbs or even roll over on her own. She had to be turned every few hours to prevent bedsores. She had to wear an adult diaper to use the bathroom. She could only eat yogurt, applesauce, and baby food until she eventually stopped eating altogether. She was no longer aware of her surroundings or even her own existence. She lost every piece of herself and her life. She lost every memory and every ability she ever had. It was heartbreaking to witness.
“Asking me about my loved one won’t make me sad. I’m already sad. But it will let me know you still care.” – LD
Disease, disability, and death are things that can make people very uncomfortable. Did you find that people avoided asking you about your mom? Did you lose any friendships because of your mom’s fight with Alzheimer’s disease?
Early on, people would always ask about my mom, but over time people stopped asking altogether. The answer became too difficult for them to hear and they didn’t know how to respond, so they stopped asking about her.
I have found that people will either surprise you or disappoint you along this journey. And sometimes, people surprise you because they disappoint you. People who have always been there for you through the difficult times in your life suddenly disappear because they don’t know how to deal with Alzheimer’s disease. Once it reached a certain point, some friends and family members stopped coming around. It was too difficult for them to see who my mom had become. It was easier for them to stay away and pretend like she was already gone. It was easier to pretend like she had already died than it was to continue watching her decline.
I lost a lot of friendships during my mom’s disease because I was resentful of anyone who didn’t understand what I was going through. I was also resentful of anyone who stopped asking about my mom and acted like she was already dead. I felt like I wasn’t allowed to talk about my own mom because it made other people uncomfortable. And it made me uncomfortable to feel like I couldn’t talk about this huge part of my life. It was easier for me to isolate myself than it was to feel bitter, angry, and resentful all the time. Ultimately, I lost most of my friendships because they didn’t understand what I was going through, and I no longer wanted to pretend like it wasn’t happening just to make them more comfortable.
“It’s so hard to reconcile who your loved one is now with who they used to be. What’s most important is that you learn to love both versions of them.” – LD
This is great advice for anyone who loves somebody through a big life change. Do you have any advice for separating the grief for what you’ve lost, while moving forward to love what you still have?
I think it’s important to acknowledge both your grief and your gratitude at the same time. They can coexist. It’s okay to miss what you once had and to acknowledge it, but you can’t stay stuck in that mindset forever. If you are constantly wishing for things to go back to the way they once were, you will miss what is unfolding right in front of you. While missing what once was, you can also be grateful for what is – especially once you realize that it, too, will be gone someday.
It helped me to write things down. I often made gratitude lists after Facetime calls or visits with my mom because it helped me to focus on the good and look forward to our time together. I also wrote about all the loss and grief I was experiencing because it helped me process it all. I have found that I have more gratitude today, not despite my grief but because of it. My grief helped me to appreciate the little things and seek out all the good in my life. I don’t believe you can have true gratitude without experiencing real grief and vice versa. If you don’t run from your grief, you will learn and grow from it.
“I am not afraid or ashamed to admit that I wished for my mom’s death several times during her Alzheimer’s disease battle. It doesn’t mean I loved her any less. It doesn’t mean I am selfish. And, it doesn’t mean her death was any easier or less heartbreaking. It simply means I wanted her suffering to end.” – LD
At what point in your mom’s battle with Alzheimer’s disease did you feel her suffering overpowered her quality of life? Was there a sense of relief amongst the sadness when she passed away?
I don’t remember an exact moment I came to this realization, but there were several instances during her illness that I would look at my mom and ask myself, “What kind of life is this for her?” She couldn’t do anything to care for herself. She couldn’t have a conversation with anyone. She couldn’t enjoy many of the things that once brought her joy. In the end, she laid in a hospital bed in her living room for over two months, dying. Not only could she no longer leave the house to go outside, but she also couldn’t even leave that bed to go in another room. It was heart-wrenching. And I saw the toll it took on my entire family as well – always questioning how much longer we could go on.
After witnessing her decline over the years, I came to realize that there are far worse things than death. Once my mom passed, I was relieved that her suffering had ended and that we finally had an answer to the unknown. She was gone. It was over – for all of us. There was also still immense grief over her passing and the entire 10-year journey with Alzheimer’s disease. I finally had time to process all the loss and I began missing the mom I once knew before she got sick. My ambiguous and anticipatory grief transformed into a more permanent grief. But as much as I miss my mom, I would never want her back the way she left us. That wasn’t fair to her or to any of us.
Her world grew bigger when she died. She is no longer confined to a house or a room or a hospital bed. She is everywhere all at once and she is in everything we do. I know she is still with me every day. I feel her presence around me, guiding me through the rest of my life.