The Italian Goodbye

My beautiful mom. July 2008.

One month ago, I lost my mom after a 12 year battle with Frontotemporal Dementia (FTD). It was a journey that I never expected to take. Her dementia diagnosis and progression quickly turned the tables on my sisters and I. We went from being her children to becoming her caretakers, her parents and the decision makers practically overnight. Watching my mom slowly die both from afar and also up close was a heart wrenching experience that I would not wish on anyone.

About 7 years into her dementia diagnosis, my mom had a lung mass that they thought to be cancer. The doctors gave her a life expectancy at that time of 3-6 months. Upon hearing this news, I wrote my mom a letter and urgently flew down to California to read it to her. I wanted to make sure she heard everything I wanted to say to her while she was maybe still able to understand a bit of it. At this time, she still knew who I was but it was unclear how much information she could actually absorb. Her memories of her parents, brothers and other loved ones were now gone. She only knew my two sisters and I and a few of her favorite caregivers at the memory care facility. 

Eighteen months after that prognosis, my mom was still alive. We were all amazed. Although her dementia had continued to progress, there were no signs that the lung mass was severely impacting her health. Baffled, we requested an updated x-ray from our hospice team. It was found that there was no mass of any kind on the scan and she did not have cancer after all. It was a mistake that sent us all spinning but we were grateful for the extra time with her. My mom would go on to live 5 more years but the road ahead was even rougher - for all of us. 

My mom became the longest living resident at her care facility. She outlived any timelines or expectations that we were given for someone with FTD. Many other families that we crossed paths with along the way had just a few years with their loved ones before they passed. We had 12. They were not easy days especially when pieces of her slowly faded each time I saw her but every once in a while - I would see a glimpse of the woman I once knew. I could see she was still there.

A woman that was proud of her Italian heritage, my mom was a master at long Italian goodbyes prior to having FTD. Saying goodbye to our grandparents after a Sunday night family dinner could take over an hour for her. It started in the kitchen, then moved to the entry way, next to the front porch and then concluded in the driveway or at the sidewalk. Given that my mom’s dementia journey was a long and slow progression and we often needed humor to get through the hard days - we would joke that this was her final Italian goodbye. It became a long, lingering farewell tour that hopefully would prepare us for the next phase of life without her. 

While I can not see the lessons in all of this just yet, I am grateful for the time we had with her. This process taught me so much about patience, perseverance, resilience and love. Having those extra 5 years gave me many opportunities to ponder what I had written to her. I would catch myself remembering something new to add. A memory. A unique character trait. An inside joke. It became a working document that I would reflect on every so often when I needed to remember her as she once was. In a way, it helped me pre-grieve the impending fate that was ahead of her. At the end of her life in her final days, I was blessed with the opportunity to read her the final draft.

Below is the letter that I wrote to her. For those of you that knew my mom, you likely experienced some of the things mentioned within these words. And for those of you that didn’t know her - you will perhaps see bits of pieces of her in me.

As my mom always wrote at the bottom of her recipe cards… Enjoy!

The Letter

Dear Mom,

There are some things that I want to tell you and though you may not be able to understand them in this very moment, I want to say them to you so that it is clear how I feel about you. There are things about you that I will distinctly remember when I leave today and always. Some of these things others may know about you but there are also things that are specific to me as well that have stood out. This is how I will remember you...

I will remember that you loved to laugh and that you enjoyed sarcasm. You preferred comedies to any other genre of movies or TV shows. I will remember that you loved to watch Seinfeld, Northern Exposure, Designing Women and the Golden Girls and that some of your favorite movies were Moonstruck and Steel Magnolias. You loved to quote funny lines from many of these. 

I will remember that you loved to cook and feed the masses. You always made sure to have pasta for Grandpa to accompany every meal we had with him.  You used to love making meatballs or lasagna and delivering them to people’s doorsteps for their birthdays. You lived by your trusty Sebastiani Cookbook and had your staple, tried and true recipes like chicken artichoke casserole. 

You also loved to eat but you were one of the slowest eaters on the planet! You loved having pie for breakfast, leftover whipped cream in your coffee and you always said to us “eat something green.” Boy were you right. Look at all these people eating kale now. I mean really. You were ahead of your time.

I will remember that you loved coffee with cream and sugar but later in life when you discovered Starbucks it was always a “hot peppermint mocha with heavy whipping cream.”  You loved chocolate especially See’s Candies, Junior Mints, Hershey Bars and M&Ms. 

You also loved to drink cheap white wine and often put ice cubes in your red wine which would make a true wine connoisseur cringe. Forestville and 2 Buck Chuck were your go-to brands. You often remarked that when you retired you were going to move to the south of France and be a drunk French peasant. I’m not sure where you came up with that idea but you told many people that over the years. I will also remember that you used to say that you and the cat would get drunk on the first day of school together after surviving another summer vacation with us kids at home. Now that I have my own kids, I get it. (There seems to be a theme here... Hmmm. ;-))

I will remember that you had the most beautiful English skin, high cheek bones and full lips. No fillers needed in this family! I am forever grateful that the girls and I all inherited these genetic traits from you.

I will remember that you were ALWAYS cold no matter if it was 43 or 93 degrees out. You would bundle up in layers to the point of ridiculousness. I will remember that black was your signature color to wear until you got dementia and then it became red. Although having dementia has changed your personality, you are always “having a good day” now and I think the red only emulates your new found happy go lucky nature.

I will remember that gardenias were your favorite flower and your favorite scent. When you used to wear perfume, I will remember that you liked to wear Chanel No 5. 

I will remember that you pronounced the word “huge” without the h so it sounded like “uge” and that you called many people by their first and last names always. You also referred to the adults in our life as Mr. and Mrs. never by their first name when speaking about them to us to ensure that we called them that too. 

I will remember that manners and etiquette were important to you. That you always reminded us to say “please” and “thank you" and to clean up our mess at someone else’s house or we wouldn’t get asked back. Boys were not allowed to spend the night because it didn’t “look nice” and thank you notes were always written for gifts that we received. I will also remember that although etiquette was important to you, you had no shame in flirting with every cute bag boy at the grocery store that you came across. Oh Mary…

I will remember that you told the longest most detailed stories and enjoyed the long Italian goodbye. Many times as kids these traits would be met with groans but there was never a detail missed. I often wonder if you having dementia was somehow your way of having one final, long Italian goodbye. 

I will remember that you have the most unique handwriting and that you became ambidextrous out of necessity as it was frowned upon when you were in school to be left handed. But when you broke your right arm as an adult, it sure came in handy! Not only was your handwriting distinct but you could write it perfectly level line for line with no guidance. Before computers and annual newsletters, you would painstakingly hand write and address individual letters and cards to everyone at Christmas time spending hours just to update people on our family news. 

I will remember that you were a survivor. “Pull yourself up by your bootstraps!” was a saying that you quoted from your grandfather a lot. Mrs. Kaiser (see I am still calling her that at age 49!) always said you “could squeeze blood out of a turnip.” You taught us the art of the Feldmann girl deal and that there was no shame in using a coupon to save a few dollars.

I will remember that you loved music by the Beatles, Peter Paul & Mary, Cher, Kenny G, Michael Bolton, Paul Simon and several soundtracks from various musicals. Later in life though, you remained trendy and one of your caregivers taught you an entire routine and all of the lyrics to a Rhianna song! You loved to play music when you cleaned the house. I will also remember that you were a good “delegator” on the house chores. You would say to us, “If we all pitch in, it will get done faster” yet somehow you would sneak off a few minutes in and we would find you reading the paper while we did all the work. 

I will remember that having us all get an education was a priority for you even if you didn’t complete your own. You convinced me that becoming a hairdresser was not my true calling and that I should go to college instead. You were right (yes I am admitting that) and I gained so much more from the experience of going away to college.

I will remember that you were a badass at DIY – sometimes out of necessity but mostly because homemade in your eyes was best. You were all about Better Homes & Gardens, Sunset Magazine and HGTV. You loved watching the show This Old House. You were proud to be a handweaver and I will forever display the pieces that you made in my home. I will remember that you always had 47 projects going at all times. Over half probably went unfinished but those that did get finished were incredible. I will remember that you prefer a homemade Halloween costume to a store bought one and I will continue to carry that tradition on with my kids. It really is much more fun and unique. 

I will remember that Christmas was your favorite holiday and that finding a fresh tree and decorating it was your favorite part above all other traditions. All the years that we had no money, you still put up a killer tree even if it was simply a manzanita branch from the yard in Paradise. You drove Dad crazy over the years requiring him to plug empty spots in the trees we cut down at tree farms. You would have him cut off a branch from the bottom of the tree, drill a hole in the trunk and fill in the empty spot above. You treasured your unique ornament collection and when you found the glorious Noble Fir you realized that it was the only tree that really could hold the weight of “the collection.”

I will remember that you loved to give gifts more than you loved to receive them. You wrapped presents like a pro with the tightest corners and the most perfect edges. You sometimes used way too much tape and wrapped them so tight we couldn’t unwrap them without using scissors but damn did they look good. 

I will remember the times that occasionally you would get a wild hair and do something totally crazy. Like the time you sold the kitchen table out from under us while we were eating breakfast during the family garage sale… with no plan for a replacement. We ate off the ironing board for months after that before a replacement table and chairs were procured. (Which of course were the ultimate Feldmann Girl Deal!) You just really hated that table and couldn’t stand to look at it any longer. 

I will also remember the Halloween that Erin and I had chicken pox and couldn’t go trick or treating. You hatched a plan to have us trick or treat to different rooms in the house and you put on funny “costumes” that you found in each room - including panty hose on your head.

I will remember that you had a series of bizarre jobs over the years including working at the fish counter at a Safeway. I know it wasn’t your favorite time in your life but it made for some wild stories after the fact. 

And I will remember that although you couldn’t wait to get out of Half Moon Bay after growing up there, that you always loved the smell of the beach when you returned. That you traveled to Hawaii and Mexico in your 20’s, loved going to Disneyland and finally made it to England, Spain and Italy later in life. 

Most of all, I forgive you for your shortcomings, flaws and for all the times we disagreed. And I hope you forgive me as well. I know that you had my best interests at heart even if I didn’t know it at the time. I appreciate that you wanted to be my mom and never tried to be my best friend. I will remember that you once told me that you wanted to be a mom more than any other job. I will also remember that you were thrilled to have three daughters. When strangers would ask you if you were disappointed that you didn’t have a boy you would always reply no. I will speak of you fondly to your grandsons so even though they didn’t witness all of the things I spoke of above - that they know you how I once knew you before they came along. 

I hope that when you complete your journey on this earth and move on to your next life that you meet up with those that you loved that left the earth before you. I hope that there is a big feast waiting for you. I hope that you are greeted by Grandma and Grandpa. I hope that they aren’t bickering about something… yet. But who are we kidding, they probably will be and Grandpa will be calling Grandma “Matilda” or yelling “Jeez!” and throwing his hands around in the air. I hope that Auntie Margaret, Uncle Art, your brother John, and your cousin “Chick” are gathered around the table re-telling the same few DeMeo family stories that have been told 1,000 times before. I hope that your mentors Margaret Simon, Bee Tanner and Dr. Dano are also there so that you can all catch up with them. Most of all, I hope Scott is waiting for you with a glass of wine and an open seat next to him so that you can be reunited. I hope most of all that Robin Williams is the evening’s entertainment so that you can laugh all night long at all of his hilarious jokes. 

I hope you find a place filled with happiness, free from pain and free from the prison of your dementia. I am grateful for all of the wisdom and guidance that you bestowed on me and for all the time we had together – good, bad and otherwise. 

Thank you Mom for everything. I’ll love you forever. 

XOXO,
Cara

Final Thoughts

My mom fought the good fight. She was tougher than I even thought was possible for a human. As I learn to live without her, I am continually reminded me that in many ways… she will live on in all of us that knew her.

Rihanna…. Take it away girl.

Lift me up, Hold me down, Keep me close, Safe and sound

Burning in a hopeless dream, Hold me when you go to sleep, Keep me in the warmth of your love, When you depart, keep me safe, Safe and sound

Lift me up, Hold me down, Keep me close, Safe and sound

Drowning in an endless sea, Take some time and stay with me, Keep me in the strength of your arms, Keep me safe, Safe and sound

Lift me up, Hold me down, Keep me close, Safe and sound

Burning in a hopeless dream, Hold me when you go to sleep, Keep me safe, We need light, we need love…

Keep singing and dancing Mom. We need light. We need love.