When our mom started acting “odd”, we had no idea what was going on. There were so many layers to her behavior, so many peculiar instances and things she would say, we didn’t know what to make of any of it. There are so many things that happened, I would need a few days and bottles of wine to get you caught up to how we got to where we are now. Which, considering all things, is a much better place than where we were, say, a year ago.
I remember at times I was so frustrated, annoyed, even angry with my mom. It’s important to know that this terrible disease was the furthest thought from my brain. Not in a million years did I think it was dementia when she first started showing signs – over time, yes, but not at first. I just thought maybe she wasn’t really interested in me or my life anymore, I was beginning to take it really personally. A part of me felt abandoned on top of feeling confused and extraordinarily anxious. I can recall a moment with her, I became so upset, I said something along the lines of would she even care if something terrible happened to me. I could see her reaching for emotion and trying so hard, but she couldn’t quite express her thoughts or emotions and yet, we still didn’t know. The only thing she was able to get out was, “I do love you Lauren”. The guilt I had after that day once we finally found out what her diagnosis was (Frontal Temporal Dementia, FTD for short)…I mean, it’s a memory and moment I need to let go of. It needs to go. With this disease, that is exactly what happens, you lose interest in the very things that were once your entire life, you lose interest in EVERYTHING. Believe me, nothing is spared here, nothing. Honestly, I was hoping she was popping pills or something, because that I knew was at least fixable in some way. Now, fast forward through all of the doctor appointments, all of the insanely difficult and heart breaking decisions we had to make, all of the transitions and I, without maybe even realizing it, began to understand the severity and the depth of this disease and my new mom. I mean, of course, she is always my mom, but she’s different now. The woman who raised me, who sat on our front porch with me when I got back from my first trip to Italy and wanted to hear every detail or who would take me shopping for the most beautiful dresses, shoes and accessories to wear to weddings with Anthony because she was secretly trying to marry me off. Seriously, lol. And she would always say to me, “he’s going to marry you one day”…and she was right, he did. It’s those memories and some of the things she said that will stick with me forever. Oh and her laugh…she has a good laugh, we just don’t hear it too often anymore. You better believe if I have to moon her or flash her my boobies to get even an ounce of that amazingly, contagious laugh out of her, I’ll do it. It works like a charm.
And now we are here and the roles have completely changed. In a really weird, but natural way of life manner, she is kind of more like my small child now than my mom and I know over time, she will be more like my baby, but for right now, I am trying to enjoy my new mom and stay in the present moment. I’m trying to be grateful for the woman she is now and the lessons she is teaching me. This entire experience has shifted me and not entirely in a bad way. The love I have for her now is certainly different than the love I exhibited when she wasn’t sick. It’s a more nurturing love, a more compassionate love. It’s a hard to explain kind of love, but I feel that it is different, yet beautifully the same in a way. I have no choice but to accept our new roles and relationship with one another, so I choose to try to enjoy it. It’s that or dive deep into a depression and that certainly wouldn’t be fair to either of us. Because if I don’t take care of me, how am I suppose to take care of my mama? Obviously I would do anything in the world for her to not be sick, but there is nothing that I can do, except be okay with her transitions, her journey and to do anything and everything she needs me to do. The patience she has taught me to have and the extra amount of love she has allowed me to give, is something that I really didn’t know I had. She has no idea the amount of invaluable lessons and gifts she has given me during this time and I am extraordinarily grateful to her. I have said a lot of “me” and “I”, but it goes without saying that our family would have never gotten to where we are without the support and love we bring to any and every situation we are faced with.
Although I feel like I did lose my mom, I also know she is still present, just in a different way. Just as I did before she was sick, I will embrace who she is now, the woman and mother she is to me at this moment in my life and I will focus on the now, because this is her journey and I’m going to walk with her while she goes on it. Regardless of the stage she is in her life, she will always be this insanely beautiful woman, inside and out.
Click hear to read more about Lauren’s journey with her mama.
Love it. Live it. Share it.
Beautifully said, it’s a difficult time at best. She is a beautiful person.
My mom still loved having her hair and nails done, she would light up when we told her she was pretty .
Hi Jean, thank you so much for reading and for your message. I feel June lights up too when we spoil her and get her all pretty for the day. Those things matter so much! Peace and Love. XO
This is such a great article!
And junebug’s laugh……there was nothing better than her belly laugh!!!
Caitlin, I think you and Junebug could compete for best laugh! Thank you for taking the time to read and comment. Love you so much and I am so excited for your year ahead. You deserve the best! XOXO
Well that brought a tear or two to my eye.
Lauren you and your sisiters amaze me constantly with your love and compassion for love and life and you’re all living it in the most beautiful way. Your mom is gorgeous and her genes have blessed you all!
Someday we’re all going to be there, some of us already are. How lovely it is that you’re sharing this with the world.
You’ll help others see the light and invite others to open their hearts. Thank you for honoring your mom this way.
She’s a lucky girl in so many ways. I know the love you’re all giving her is helping her get through each and every day.
You and your sisiters will grow from this experience in so many ways that you don’t even realize inside and out.
It’s the hope you bring to others that will live on in the hearts of those who will read this and share it with others.
Love grows!
xo
Carol
Carol. Your words, your love and your support are so warm and beautiful. The Massarella girls (and everyone that knows you) are so incredibly lucky to have you in our lives. Your message is filled with such positive love, you are one of the most genuinely wonderful people I have ever met. I’m so lucky! Thank you always for your love. We all love you SO much. Love grows! XOXOXO
Lauren
Carol said it all! I am so proud of you and all your siblings, this is so difficult.
Love you all!
Linda Cada
Thank you so much for the love and boost of support, Linda. It means SO much to us all. PS. I love Kellene, just thought I should throw that out there. LOL. XOXOXO
Every mother always wonders and worries if she has raised her children the best way. We second guess ourselves over and over again. June has done the best job in raising her children. You are all a living testament of what a wonderful woman she is. In the deepest part of her heart, she loves each one of you.
Judy, thank YOU so much for your beautiful words. I know we drove our mom crazy at times, but she surely never gave up. We’re all so lucky there are moms like her and you out there to keep adding good ones to the world. XOXO
What beautiful words and what a delicate issue that you and your siblings have so naturally embraced and worked seamlessly together to get your mother what she needs and together taken care of each other. #teamfamily
Meg, thank you do taking the time to read my post and comment. Your support and kind words mean the world to us all. #teamfamily indeed! XOXOXO
Wow!! Tears….
Thank you for sharing such a personal part of your life and experience, along with growth… I remember when my mom was ill, I use to always pray for immense patience to care for my mom, and understand her needs….
Now, I always share with my daughter, when I get old or sick, that she may have the same patience I did with my mom, through my journey whatever that may be?
Lauren, you are creating immense fortune in your life and boundless karma… Your parents should be so proud of you and your siblings for being great human beings in this life time!!! I’m so proud of you
Xo Jacqueline Quiñones
Jackie, you have a very special way with words, you message went straight to my heart. Thank you SO much for all of your love and support, here in this post and for TSP as a whole. I’m so lucky I was able to work with such a beautiful person like yourself. You have the gift of kindness, I’m very grateful to know you. Indeed, patience plays a huge role, it just takes time to find it within. When I get back from Australia we are meeting for wine. Big hugs to you and thank you again. XOXO
What a deeply powerful expression of strength courage and unconditional love. Shine on you beautiful sisters…..It warms your mothers heart.Xo
Thank you, Julie. I can feel the love and good vibes coming from you kind message. Thank you for taking the time to read my post, it means so much to me. Positive vibes coming back at you. XO
Well done Lauren. June would and always has been very proud of all of you. You hit it right on the head with role reversal thing. None of us get out of here alive or unscarred. Your Mother is lucky to have such intelligent and caring children. It is a sign of her parenting that you are the woman you have become. As parents that is our best gift in life.
Paul, thank you for your extremely thoughtful message and wise words. We are lucky to know you and have you in our lives. It means so much to us that you follow TSP…you’re officially a TSPeep. Thank you for the love. XO
Beautifully said Lauren . Your mother is a beautiful woman and has bestowed her wisdom and grace upon each and everyone of her children . I have always admired your mother and remember her for her thoughtfulness. I see that today reflected in your hearts .
Valerie, thank you so much for taking the time to read my post and comment. Your message means so much to us all and we are so grateful for your beautiful words about June. I hope all is well with you. Next time your in Chicago, let us know! Peace and Love. XOXO
Lauren, you are a such a talented writer to express your mom’s new life so tenderly and lovingly. After reading your blog, Doug says, “Nick and June’s kids are amazing!” All of you represent the best tribute to your mom each and every day and that is just how you were each raised; in love and a spicy zest for life! We love you all!
Sage Steadman wrote in “The Hippie” and “Upon Destiny’s Song”:
“I’ve noticed in my life that the people who act as my angels are not some strange angelic creatures that seem almost untouchable, but are more real than that. They are people who have tasted sorrow, who have felt pain, and in a way, that makes them capable of being an angel. In their darkest moments they have become strong.”
“They looked to each other for support, for strength, and at times, motivation, to remember why and for whom they lived.”
Lauren, you are your sisters are the truest of angels… loving yourselves and your mother’s memory through strength and enduring grace. My wisdom teacher, Amma Cynthia Bourgeault taught me that “Love is stronger than death”. Your love for your mother and for other Sisters who know your story will be everlasting and will touch the heart of millions. Namaste, Alan
Hi Alan,
I am so incredibly touched by this comment. Tears stream down my face as I write this. And I agree, love is stronger than death. Namaste, Michelle
Lauren, you write with such grace and humility. Your honesty is to be admired. Having walked in the FTD shoes for five years, I totally understand the clinical, human and emotional aspects of your journey. I know that my sons can truly relate to your experience. In a way, that was one of the most painful parts of FTD for me – watching our sons witness their Dad’s gradual disappearance. The helplessness and protective maternal instinct added to my own despair at losing my husband. Your “old” mom would be very proud of you and your sisters and somewhere deep inside, she feels the love you share with her. I wish you peace on your journey.
My mother also has FTD, was diagnosed 5 years ago at 62. Lots of lessons along the way for us too and grieving for a parent who is still alive is really difficult to explain. I started blogging about our experiences in the hopes of making some sense of it and to chronicle some of the craziness. Thank you for sharing your story. With more of us speaking up the awareness increases and hopefully that will mean money for research follows. Best wishes to you and your family.
Lauren,
Thank you for this. I do not know you or your Mom, but I know your story as it in many ways is my own. My mom was diagnosed at 56 ( now she is 61) when I was just 24 years old and newly married. My story like yours started out in a similar way, with pain and confusion. I remember one time I was devastated over a relationship gone bad, crying so hard that I could barley speak and my mom just looked at me and kept play cards, it was another layer of devistation and I was convinced that she no longer loved me. Sometimes I search for how to express how I now live with happiness amongst the tragedy of her diagnosis and the loss of the mother I once knew. You put it into beautiful words. I don’t know if I am always as good at being patient or finding the deep love we once had, but I know it is a journey and I always look for the reminders that inside she is still the beautiful strong woman that IS my Mom, regardless of any diagnosis! Thank you again, your words are so touching and personal!!!!! I pray that I have your strength and beauty along this road we share!
Wow, that was amazing, I was in tears while reading this! You captured everything I felt during my mom’s battle with FTD. Thank you!!
Thank you for sharing 🙂 I too have struggled with depression since my dad’s long-overdue diagnosis with FTD last year. It’s tough to be pursuing a career and a life of my own across the country from him and my mom, but on my most recent trip home, I was filled with so much gratitude for the father that he was – caring, considerate, so supportive – all the things I needed as a young woman to become the woman I am today. I certainly miss the old attitude and being his ‘baby,’ but there is much to learn from this crazy ride. Wishing you and your family humor, patience, and all the best moving forward!
Wow thank you for sharing. My mom was just diagnosed with FTD late last year. It was helpful to read this as I can relate so much. It is such an ugly and unfair disease, but I am going to continue to love my mom and cherish the special moments.