National Caregivers Month: At 26, Laura is too young for “Yomamma Care”

Laura, her mom and sister

Thank you everyone for so many words of encouragement for our family caregivers! We continue honoring caregivers during National Caregivers Month with Laura’s story. She and her younger sister are living the lives of young 20-somethings, while trying to give their dad a break from caring full time for their mom. Remember, you can post a tribute to the caregiver in your life at www.alz.org/nadam.

I officially found out about two years ago (November of 2010) that my mother had Alzheimer’s disease. She was 56. I was 24. Of course, by that point the changes were drastic enough that my suspicions were already quite high and, more than anything, I was relieved to have a solid explanation.

It was about 2-3 years prior, during my last year of college, that I had first started noticing that my mom seemed to be forgetting large chunks of our regular telephone conversations. She had always been deeply involved in my life, so the fact that she seemed to be disregarding the things I talked to her about was completely out of character for her. Being a worrier, my first horrified thought was that she was developing Alzheimer’s disease, but the friends I confided in were quick to assure me that she was too young and that there was a myriad different explanations for her minor memory lapses.

After completing my college years in Southern California and Scotland, I decided to move back to the SF Bay Area to start my “real life.” I lived for a year in San Francisco, which was about an hour drive from my parents’ house, but my mom’s memory was getting progressively worse during this time. By the end of my year lease, I knew I had to move back to Silicon Valley to be closer to my family. Whatever was happening to her, I was scared and even being an hour away was too far. My boyfriend and I found an apartment in Campbell, where we still live. When my sister, who is three years younger than me, completed her college career in Sonoma in 2011, she and her fiancé moved down to Mountain View for the same reason. Neither of us has any plans of going anywhere right now; we could never do that to my dad. 

My dad is the full-time caregiver for my mom after retiring immediately following her diagnosis. He, too, was only 56 at the time. Currently, two years after the diagnosis, I would say my mom absolutely cannot be left alone for any length of time. I have heard some stories about Alzheimer’s-afflicted people putting themselves in danger (i.e. leaving the stove on or wandering out of the house), but in her case it’s more a matter of her becoming extremely fearful over anything that is out of the ordinary. She is increasingly confused about her surroundings. To put things in perspective, she cannot get through a shower without a constant pep talk, hands-on guidance and a LOT of cursing.

What’s unique about being in my twenties and having a mother with Alzheimer’s disease? Lots of things. I don’t have any friends in my age group who sometimes get to towel-dry their naked, terrified mother after a routine morning shower or explain to her that no, the toilet is not broken, her body just doesn’t have to use the bathroom because she went 10 minutes ago. I don’t know anyone who talks regularly with their families about what will happen “when” their middle-aged parent dies – not “if,” because with Alzheimer’s there is no hope. With other diseases, one is allowed – if not encouraged – to hold on to the chance that their loved one just might pull through. But such is not the case with Alzheimer’s. 

When my mom was diagnosed, my dad, sister, and I had a brief and passionate debate about who would be giving up their career to take care of her. My sister and I both attempted to assume the responsibility, and my dad listened to our arguments, but in the end he made the decision to retire early and take on the epic challenge himself. When he did this, he told us that he wanted us to be able to live our lives, and that my mom would have wanted this as well. She was always so selfless, always relying on us to call her once we left the nest so as not to “bother” us (as if a call from one’s best friend was ever any bother!) – I know my dad was and is right.

We both work full time, but we switch off weekends for “Momsitting” duty. Or, as my dad refers to it, “Yomama Care.” We make sure that someone is there for at least a few hours each weekend to give my dad some time off. I also have an ongoing agreement with my company that allows me to leave work early once a month to Momsit while my dad attends his Early Alzheimer’s Caregiver Support Group at the Alzheimer’s Association. There have been a few occasions that have called for my sister and I to spend the night with our mom while my dad has gone out of town. These nights especially have been exhausting and terrifying and horribly depressing, but worth every minute for my dad to have some freedom. Holidays and family gatherings are hard, really hard. My mom has a tough time with large groups and she gets moody and irritable. We still try to gather for all the big ones, but it usually puts a lot of stress on her and, in turn, my dad as well.

I do have a life outside of this disease and I am doing my best to be a regular 26-year-old – to enjoy my youth, the life I’m building with my boyfriend, and the future I still have ahead of me. My family has always had a fabulous sense of humor, and we are relying on it more heavily than ever to get us through this tragedy without losing our sanity. Not a day goes by, though, without me feeling deeply, terribly sad about losing my mom for at least a few minutes. Once in a while the thought that she will never be “normal” again smacks me across the face and I find myself in a state of disbelief. How is all of this really happening?! It’s too cruel and she is too good of a person. She doesn’t deserve this ending. Every time I physically see my mom, I go through at least a day or two of involuntary mourning because undoubtedly even more of what made her HER has died since I last spent time with her.

I Walk to End Alzheimer’s because it is so refreshing to be able to DO SOMETHING about ending a disease that has left me feeling so utterly helpless otherwise. To know that I could be making a difference, to know that maybe someday my children might not have to experience what I’m going through – it’s the most empowering thing I can do for myself right now. So how could I not walk?

-Laura Lucas, daughter, caregiver

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10 Responses

  1. Nancy Vinckier says:

    Dear Laura,
    What a beautiful daughter and human being you are. I haven’t met you, but my husband and I lived in the same dorm as your dad our first year of college and John remains one of our favorite people to this day. My mother also has Alzheimer’s and even though she is 81 and her disease has not advanced as quickly as your mom’s, I feel the same sadness about losing her that you describe for yourself. I’m so glad your mom has you and your sister and dad with her. She couldn’t be in better hands. I know this isn’t quite the journey you thought you’d be on in your twenties, but I’ll bet your dad is so proud of and grateful for his daughters for how you’ve stepped up and faced this reality with such grace, energy, strength, understanding and, most of all, love. Our hearts are with all of you in these difficult days.
    P.S. I just love “Yomama Care!” Sounds like something John would come up with!

    • Chiekh says:

      I acknowledge what you say but do not agree. When you have seen huneddrs of caregiving situations as I have you know the many many elderly gentlemen who are taking care of their wives for years, you see the sons who are diligently caring for their parents, the husband who leaves for work after setting his wife’s care up for the day, who has to run home at lunch and at a moments notice, and you realize that in the end it is an issue that profoundly affects INDIVIDUALS of both sexes.

  2. Edgard Tejada (Ignatowski) says:

    Dear Laura,

    I used to work for Jon at NSM through the 70’s and 80’s. I also had the pleasure and honor to enjoy them both your parents outside the work environment and to get to know them enough to call them my “dear friends”. I also had the pleasure to meet and enjoy you in your first years of infancy (when you were just born), but due to life situations taking us in different directions, I stopped seeing my dear friends if not with my own eyes, with my heart and in my memories.

    To find out about Sharon’s condition has not only impressed me but hurt me deeply and greatly. To know what you and your family are going through with this terrible disease and the perspective to gradually lose her essence of being, saddens me and also angers me to know about the powerlessness over her progressing condition. Knowing about Jon’s retirement to become “Yomamma Care” giver for his beloved Sharon sacrificing his once bright and promising career, makes me feel so small and insignificant. What a man…

    I have never been very good at this writing business, but I found some quotes that basically express what I feel…

    • “Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow. – Melody Beattie
    • There are two ways of spreading light — to be the candle or the mirror that reflects it.? – Edith Wharton
    • “The greatest discovery of the 20th Century is that our attitude of mind determines our quality of life, not circumstances.” ?- William James
    • “The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.” – Helen Keller
    • “Humankind has not woven the web of life. We are but one thread within it. Whatever we do to the web, we do to ourselves. All things are bound together. All things connect.”? – Chief Seattle
    • Out of clutter, find Simplicity. From discord, find Harmony. In the middle of difficulty lies Opportunity.? – Albert Einstein
    • In life you can never be too kind or too fair; everyone you meet is carrying a heavy load. When you go through your day expressing kindness and courtesy to all you meet, you leave behind a feeling of warmth and good cheer, and you help alleviate the burdens everyone is struggling with. – Brian Tracy
    • One person caring about another represents life’s greatest value. – Jim Rohn
    • “It is one of the most beautiful compensations of life, that no man can sincerely try to help another without helping himself.” – Ralph Waldo Emerson
    • Become aware that there are no accidents in our intelligent universe. Realize that everything that shows up in your life has something to teach you. Appreciate everyone and everything in your life. – Wayne Dyer
    • You give but little when you give of your possessions. It is when you give of yourself that you truly give. – Kahlil Gibran

    With much love, affection and the uppermost sincerity,

    “ET”
    .

  3. Harold G says:

    Mother, wife, daughter, niece, friend, Sharon can always be remembered as the very special person all knew her to be! I can never forget how at her age of five she could read anything, including the Bible that seemed one of the most difficult readings I could find to test her.

    Her life is shortened, but her family has grown.

    Thank you for your caring and sharing.

    From Sharon’s uncle.

  4. Moel says:

    Agreed Roy! It’s not just the men and women who chose to serve but also their families who suoprpt them in their decision. They’re the ones who keep the fort when they go away and make sure that everything is still going. My heart goes out to the young children who don’t understand why Mommy or Daddy is always leaving. It’s a sacrifice and thank goodness we have men and women who choose to dedicate their time to fight for our freedom.

  5. Youssef says:

    Caregiving is a feminist issue. The ppolee called on first to be caregivers are daughters, daughters-in-law & granddaughters (the last one is unbelievable to me!). We’re geared for caregiving as women, through nature & nurture, but more often than not we forget to look after ourselves while we’re in the midst of our roles. It’s a tough one, the struggle with guilt was the biggest for me & the women I work with. But we won’t be good for anything if we burnout.BestEllen BessoMidLife Coach & Author of Surviving Eldercare : Where Their Needs End & Yours Begin

  6. Ashley B. says:

    Hi Laura,

    I am in a very similar situation as you, as my mom got it at 50 years old. We are working on a project to promote awareness among young caregivers to further create a fund to support young caregivers. We are in the Los Angeles area, would love for you to email me and to discuss if you would like to share your story. I think it would be really impactful. Please email me when you can. Blessings your way, Ashley https://www.youtube.com/watch?v=FQO6ZD8qt9E

  7. mic says:

    I have read your article, My heart goes out to you and your family. Being only 56 is to damn young for your mom.

  8. Jaz says:

    So beautifully said and written. You have eloquently poured onto paper what I have been struggling to translate into words. I am 29 and am a caregiver for my mom, who is 66 with Alzheimer’s. She was diagnosed at 63 when I was 25; it’s been the most challenging thing my family and I have had to face (we’ve been thru immense tragedies in our lives)… I have to agree, the humor helps us maintain our sanity. Its heartbreaking to mourn the loss of someone who is right in front of you, in tangible existence 🙁

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