Last fall my husband died of pancreatic cancer. He dealt with chemotherapy, doctors and suffering for an entire year.
We were, in a way, lucky we had so long together, knowing the probable outcome but having the time to say goodbye and to make preparations. In the beginning we were able get our house in order. All the repairs were made and we had time for me to go through all of our files and ask the many questions about various papers and accounts.
One of the most beneficial tools we were able to use was the workbook, “The Lasting Matters Organizer”. This Organizer made us think about and write down where all of our important documents were, what we had for accounts and where they could be found, etc.
My husband, while he was still in reasonable health, was able to express his last wishes on what he wanted to happen upon his death such as cremation, not wanting a funeral, and he even was able to write his own obituary. He knew all of this would make matters so much easier for our family as well as our extended family. It was a blessing.
At the time, I also filled out my own copy of “The LastingMatters Organizer” so that when the time comes, everything will be easier for my children. I keep it with my hurricane file, knowing that I have made their path easier and have already answered many of their questions.
- Ellen Pennington
A thank you note to an 85 year old-
Thank you for sending The LastingMatters Organizer. It will be useful to me both personally and professionally. You were so thougthful, caring and generous to take the time and effort to mail the book to me rather than to donate it to the library. It was a true gift that was very timely. I like the simplicity of this guide and the fact that the author created something so meaningful from her difficult experience following her mother's death. It is so thorough and non-judgemental. Her website is also a good resource so I am so grateful to you for enlightening me! It was such a pleasure to spend time with you on my flight to Richmond. You are an inspiration to me! Sincerely, Genevieve"
- Genevieve Megan, Hospice Nurse
The other day, one of my colleagues shared with me just 2 of the 24 videos he had on his phone of his new baby boy, who is now 6 months. I asked him if he had just one video on his phone of his father, who he has lunch with weekly. “No” he responded, confused.
If I had to do it all over again, I would interview my mother for 30-60 minutes, her style, and have her talk about her life. I know my children and her children would forever treasure it. She had a great sense of humor and I think they would truely have enjoyed it.
- Hilary H. Stephens
My husband‘s mother Barbara- the mother in law of all mothers in law- was sick for many years. When the doctors said they couldn't treat her anymore, we knew it wouldn't be long until she died. On her last visit to our home ( a trip she was adamant about taking) , we talked about what we could do to help her live out her last days. We brainstormed ways to help her six grandchildren remember her, and came up with the idea of purchasing cards to celebrate various milestone birthdays.
I purchased dozens of cards and Barbara wrote short notes on each, imagining the activities and personality traits of her precious grandchildren as they got older. In the early years, our daughter, age five when her Nanny died, was nonplussed about the cards. But as she got older, she began to appreciate the connection. Last year ( at age 23), she asked if there were any more cards. Alas there is one more--a sealed envelope that she can open on her wedding day. We miss Barbara terribly! but are grateful for what she did to stay connect to our family.
My mother was living in a lovely retirement home-living independently until age 87 when she was no longer able to care for herself. Her facility didn't have an assisted living section so we were scrambling to find a place for her. But most places won't take them at a certain point in their deterioration. It would have been so much better for us and for her if she could have just moved to assisted living in the building she was familiar with and where she had friends.
- Barbara Capron
NEVER leave two people in charge of your affairs. The buck must stop with only one person.
- Barbara Franzoso
When my brother told me that he was planning to transition to palliative care, I was devastated. Steven had been dealing with chronic pancreatitis for almost six years at that point. He was a fit 29-year-old when he had his first attack. Not a drinker – as many who suffer from the disease are – but a mountaineer, avid Telemark skier, cyclist, and lover of the outdoors. After two major operations, dozens of hospitalizations, steroid treatments, and at least three years of receiving his nutrition by nasal tube and a stint inserted into his abdomen, he’d decided to give up “cures” and just treat the pain.
“If I have to go on living like this for the rest of my life, I don’t want to do it,” he told me. I tried to convince him life was worth it, and that our family would not give up on him. I was selfish, I know, but how does one accept the prospect of being in the world without one of your closest and most beloved? I was going through my own transition at the time, packing up my Brooklyn apartment to move to Cambridge for a year on fellowship. I’d resigned from my job and fearing the unknown with the luxury of one who assumes they’d be around forever. After grieving for a day and realizing my arrogance, I surrendered to his wish to die as he wanted and told him I would do whatever to help him die with his loved ones around him and his dignity intact.
Steven thought then that he had about two years left, and planned to move from Portland, Oregon back to New Hampshire to spend his last days in the home of my parents. Steven thought he’d come home for a month at Christmas to get his affairs in order and prepare for his end before returning to Portland to pack up. He made clear that he wanted to work things out himself until the time was right. Four months and two days after that call, on January 11, 2002, Steven died at my parents’ home. He had just turned 35.
It was not according to his plan. In fact, he was going to visit me in Cambridge the next day, but felt too ill. He resisted going to the hospital, but his Dilaudid pump was broken, so my parents stayed up with him to administer the pain reliever by hand when they noticed a turn for the worse around 4am and called an ambulance and a visiting nurse who’d been tending to him. If either had arrived half an hour earlier, they would have likely whisked him away because there was no directive yet created or posted declaring his wishes. And besides, no on thought it was “his time.”
After Steven died, we went thought his papers and could see how confused, drugged out, and utterly alone he was in sorting out his decisions. His notes about who to contact and his wish to be cremated and other details were listed over and over on the same punch lists. I regret not asking him to share his process when I saw him at Christmas and just after. My sister, who hosted him for New Year’s in Vermont, said the same. It just felt too difficult to bring up death when he was so determined to call his own shots. I think of it now as his desire to control and manage the outcome of the ultimately unknowable end of his life. He had made the decision to die independent of all of us, and damn it, it was going to happen his way! None of us dared to challenge that control because it was his death after all. I am so grateful that he died as he’d hoped, with the people who brought him into the world. I regret not walking through and codifying his specific wishes for that death in the same involved and concerted way that I was there through his diagnosis and treatment.
Even making a choice to die as one wishes is not enough. That is our reality and our system. I wish I had had someone there to walk me through it and be present and courageous as I wanted to be for him. That’s why I think the Lasting Matters Organizer is an excellent tool and choice for people like me. I don’t want to make the same mistakes with my aging parents as I did with a brother who died too young.
- Virginia Prescott
No one ever prepares for the death of a child. We cherish the stories about Mark that we hear from his friends.
When my father unexpectedly passed away at the age of sixty-two, it was not only a shock to him and my family, but it was certainly an event that no one could have foreseen happening. Not everything in life turns out the way we hope it will. However, no matter how tragic and mind-numbing the entire experience was, we did not have to deal with how he would want his family to respond, or how we would continue on in our lives without him. Throughout his life, he continually communicated his wishes for himself as well as his wishes for the whole family. What a gift.
We were all devastated by losing him, and I especially felt a heaviness that was without precedent, because my father was my best friend. But knowing his wishes after he was gone made an unthinkable event possible to persevere through. It is never easy to be left alone to deal with so many emotions to process paired with the family obligations to follow-through.
This is why I love “LastingMatters,” and feel so strongly in its mission and purpose. Take the time to communicate in writing with your family. This will not only liberate you, but it will be a priceless gift to them.
- Lisa Ganem