Gene and Carolyn Nutile The Nutile Notebook

First post: Apr 4, 2018 Latest post: Jun 15, 2018
If you have seen the movie The Notebook, you'll understand the title of this site. My parent's love story, like many others, is one full of happiness, challenges, heartache but above all, love. They will be married 59 years this year. Their marriage has endured more than most, the hardest being the loss of two children: their daughter Luanne in 1965 and their only son Chris in 2011. Still, they persevered and taught all of us the strength you can draw from your faith in God and the power of positive thinking. 

When they lost Chris 7 years ago, between the combination of unimaginable grief and the tremendous amount of work it took to settle his estate, we saw the toll it began to take on our parent's health. We worried a lot and we tried to help often but they told us this was a process they wanted to handle on their own. 

My father was diagnosed with Alzheimer's in February 2014.  Almost immediately after Chris's death, we saw signs of it in my dad but we all blamed it on grief. As time passed and he worsened, we realized he needed testing. This diagnosis was hard on my parent's, especially my mom. She lost 2 children and now she will slowly lose her husband in an unimaginable way.  My mom did what she does best and went into instant caregiver mode, taking care of my dad and researching everything she could about the disease.  After this diagnosis, our family continued to take hits. Son-in-laws injured and diagnosed with their own neurological diseases. Daughters diagnosed with auto-immune diseases. Grandchildren losing their father. Many challenges came along with these events and my parents watched helplessly as their family struggled. In 2015, my dad fell down a flight of stairs and put his head through the wall at the bottom. After an extensive ER visit, he was deemed a miracle with no injuries. A few weeks later we found out differently - he had suffered a traumatic brain injury with the fall and had 2 active brain bleeds. He was rushed to Mass General where he received emergency brain surgery.  He was released a week later and my mom continued to be his caregiver. In 2016, my dad came down with pneumonia and was in the hospital for a week. It was during this time,  he was diagnosed with COPD. After discharge, my dad suffered several COPD exacerbations, of which many sent him to the ER via ambulance. These exacerbations were scary, he couldn't catch his breath and his oxygen levels would drop. With each health setback, we noticed my dad's Alzheimer's would advance, medications didn't seem to be slowing the disease down. My mom continued to provide the best care to him but we started to notice the toll it was taking. She began to lose a lot of weight and had increased anxiety and trouble catching her breath at times. We asked her to see a doctor and one time I even asked a doctor to look at her while they were examining my dad. My mom refused vehemently and said please stay focused on Gene.

Well it finally caught up to my mom in March 2017. She hadn't been feeling well for a couple months but suddenly came down with a fever and cold.  She was admitted to the hospital with double lung, bacterial pneumonia. My mom was always the rock and we hadn't seen in her in the hospital for over 30 years so it was strange to see her so sick.  She was in the hospital for 6 weeks which included a few setbacks, ICU stay and rehab. At one point, one of her doctors told me she  was diagnosed with AFIB, CHF and COPD.  And with the COPD, she had managed to have it advance to a severe stage without ever seeing a doctor. This explained her extreme weight loss and other issues. My mom was discharged at 99 lbs. with a long road to recovery ahead. But I saw the fire in her eyes and her Irish fighting spirit. I had no doubt, and she had no doubt, she would rebound and be back to the rock we knew and loved.  Soon after she got home, my mom wasn't seeing very well and so I took her for an eye exam.  It was there we received the very disappointing news that my moms eyes now had severe glaucoma and macular degeneration. Just a year before, there was no signs of either disease. It was determined that the massive amount of IV steriods used to save her life in the hospital had destroyed her eyes.  She went on several  eye drops and had eye surgery to get the diseases under control but nothing could be reversed. My mom was going to lose her vision. Even with this devastating news, she never gave up. I hear her tell her doctors when referring to the vision loss - look, it was life or sight and if I had a choice again, I would choose life. 

This brings me to today. I provided all this detail and personal information because I want you all to understand how much my parents have gone through and how very hard they have fought. Dad is turning 82 and my mom will be 80 in October. They are getting tired. They are both on so many meds and most days they can't think clearly because of that.  My mom never rebounded really. She still can't climb a flight of stairs, just walking across the room takes her breath away even on full-time oxygen.  She talks about missing running up the stairs to grab something. My dad's Alzheimer's advanced even more while my mom was in the hospital and a recent test showed us how advanced the disease is. It breaks my mom's heart every day to see my dad struggle to remember. He has forgotten most of our names and can't make a pot of coffee or operate a microwave without help.  They have said several times, they feel like they wake up each day just to survive.  They are declining at a very similar rate. They have both asked me to stop taking them to the hospital or ER.  They are scared to be separated and they have told us that their final wish is to die together, in their home.  We are doing whatever it takes to make sure we can honor that final wish.

We introduced the concept of hospice to my parents a few months ago. At the time, the word scared my mom. She said "I'm not done fighting" and refused to go on the program. My dad cognitively can't really understand much so the decision was my mom's. Hospice gets a bad reputation. Yes, some people have a terminal illness and know they have very little time so they enter hospice. However, many others can enter the program as a way to have the best quality of life they can for whatever amount of time they have left.  Hospice is about comfort care only and focus is on QUALITY of life. Studies show that many people live longer in hospice than they would have without it. Some go on 1-2 years even. And a lucky few even graduate! The program brings a lot of added support for the patient and their family. They also have many volunteers that can help the patient shower, take walks, plant a flower, visit with a priest, pet a dog, dance, see a movie, visit a favorite place. Once we understood that hospice isn't just about dying, we realized this was the right move for our parents. They shouldn't just wake up to survive. They should wake up to live! 

My mom became sick with a lung infection last Friday and my dad soon got sick a couple days later. Both refused to go to the hospital so they both agreed and were admitted to a hospice program. We are a couple of days into the program and already my parents are so very happy.  After receiving the Sacrament of the Sick and having a long overdue visit with a family friend (all coordinated by hospice), my dad said "this was the best afternoon of my life".  The next day my mom told me she realized quickly that this was such a wonderful move for them and thanked us for getting hospice on board.  

We don't know how long each of them have, only God knows. But we do know that we plan on making these final days many of the 'best days' of their life and create memories that we will all treasure forever. 

"Do you think our love can take us away together? I think our love can do anything we want it to." ~ The Notebook

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