A little over a year ago, Hubby checked into Hospice House for the second time. Never to return to our home.Not too long after, I was running errands and came upon a billboard I’d seen a dozen times. But still it caused my heart to flutter. Because these were the Hospice House doctors and nurses who lovingly cared for Hubby in his final days.And if I had to put a name to the heart flutter, I’d say it was a mixture of gratefulness and sorrow and gladness. Which sounds a bit oxymoronic, but those last days were sweetly sorrowful....more
Day Six of Hospice care for my husband at our home. The title of this post was supposed to be Day One of Hospice. One of the palliative team who visited my spouse in the hospital, among other things, had asked me if I had a blog. I told her I did and that I enjoyed blogging but had not been able to in quite awhile because life had been keeping us pretty busy. She recommended that I start posting again. Well, I thought, I would like to write out some of this stuff that is in my head, write it for me and not wonder if someone will read it. ...more
August 4th was the one year anniversary of my dad’s death. Rather than focusing on his last day, I am choosing to focus this post on the Saturday just prior to his passing, where we threw a party in the hospice room to celebrate his life. When I reflect on this memory, I feel so grateful that we had this opportunity to tell dad how much he meant to us, share memories, and prepare as a family to say good-bye. I know that many families have not had this opportunity.Just a little backgroundThe week before my dad passed, my dad had told my little sister Annie that he was ‘ready to be with God’. This prompted her to secure the help of the hospital’s Palliative Care staff. During the conversations with Palliative Care, my dad made it clear that he no longer wished to be intubated or resuscitated. This was a heart-wrenching and emotional discussion that my mom and my sister witnessed. My dad was so tired from struggling to breathe on his own and get his heart and kidneys to cooperate. He had been intubated four times and each time he couldn’t get the breathing to regulate in the normal range without stressing out his heart. While he was intubated he was sedated so he would as comfortable as he could be. This meant he was less alert and interactive with family. This was not the way he wanted to live and not a way that our family wanted to see him. Once dad made the decision for no more intubation or heroic measures, keeping him comfortable in a hospice environment was the best next decision. My dad, a father of six and once an executive manager of many employees, had made many tough and courageous decisions in his life and it seemed fitting to us that he would also make this decision – the toughest one any person can make.What hospice is likeDad was transferred to a brand new hospice facility in Fernandina Beach, Florida. His medications, physical therapy and unappetizing diet of thickened liquids and baby food solids were discontinued (the hospital staff was worried about aspiration which is why he was on this unappetizing diet). The staff at the Community Hospice in Northeast Florida was amazing…truly, angels on earth. The nurses and staff not only helped to keep dad comfortable but educated my family about the process and answered every question we had. They assured us along the way that we were doing exactly what we were supposed to be doing, even when it really felt like we were really doing nothing. The décor was similar to a brand new hospital but without all the MRSA paper robes, IV machines, constant staff interruptions and perpetual noise. The hospice environment was peaceful. Dad’s first request when arriving to hospice was a Chick-fil-a milkshake and a diet coke. His hospice diet primarily consisted of diet soda and ice cream. The hospice staff also administered regular doses of morphine. The transition to hospice also prompted my family to solidify their travel plans. Annie rented us a huge local house that could sleep all of us and even had an indoor pool for the kids to enjoy. All of our immediate family was able to come, including almost all of dad’s 11 grandchildren. My dad’s sister and husband, and my mom’s sister and husband were also present.Dad’s celebration of lifeThe decision for a ‘celebration of life’ party came naturally. We were all going to be together, had many things we wanted to say, and most importantly wanted dad to know how much he meant to all of us. The activities of planning dad’s party gave all of us a true purpose, but certainly was unlike any party any of us had planned before. Here are the steps we took in just a few days to create dad’s celebration of life:· We selected a day. We picked Saturday because this gave everyone in our family time to get to the hospice facility. We prayed and believed dad would be with us and we told him that everyone was coming for his party.· We got on Pinterest (isn’t this everyone’s first party planning stop?!) and found ideas for end of life celebrations and created a shared board where we could collect and pin our ideas…we mostly just found lots of great quotes and poems.· We notified the hospice staff of our plans. They loved the idea and welcomed it. They told us they wished more families did events like this.· We ordered a yellow cake with chocolate frosting from Publix that read ‘We love you Larry/Dad/Pipi’ adorned with some blue Penn State paw prints.· We made everyone aware that they would have an opportunity to share whatever they wanted with dad. Some of us wrote down what we wanted to say and some prepared mentally. All of us delivered from the heart. We didn’t have a set agenda, we just took turns as the moment struck us. The grandchildren who spoke really impressed me.· We coordinated getting mom to the hospice room.· We brought our iPads and got on hospice Wi-Fi so our out of town family could participate via FaceTime.· We tried our darnedest to find a ‘Larry’ diet coke can and went to the website to see that this name wasn’t in print on a can but could be custom ordered. In his final days, this was dad’s drink of choice. He had always liked an occasional Diet Coke but we definitely didn’t think it would play such a vital role in hospice. We settled for a ‘Dad’ can instead.· We brought in food and wine and wished we had brought in several boxes of tissues.· We played dad’s favorite upbeat music. He loved 50’s do-wop tunes.· We created a shared photo stream for photos past and present and a hashtag (#ljbwonderfullife) for all the pictures we took. Again, I’m so grateful that we were able to have this party with our guest of honor present and alert. By Saturday, he was really not interested in eating and his diet primarily consisted of straws or syringes full of Diet Coke. He was definitely aware of his surrounding but did not have the energy to converse or open his eyes. He did have a ceremonial bite of cake. After it was over, I asked him if he heard much of it and he nodded and when I said we had a big party, didn’t we? He breathed out a faint but audible ‘yeah’. When I joked and stated that he probably liked my speech the best, he actually let out a tiny giggle.Much of the family had to leave on Sunday afternoon to go back to work or in my kids case, start their first day of school. Several of us made plans to say behind and were able to provide him comfort until he took his final breaths – just two days after the biggest celebration of his life, the grandest family finale.Have you had experiences with a hospice facility? Do you have rituals that you do to remember a loved one that has passed on their anniversary of death? ...more
This last Sunday was my final training day in the hospice unit at the hospital. We had to do three classroom and three hospital training days. Nothing you learn in the classroom will really ever prepare you for what really happens "on the unit." It was the best day ever, but I'd like to tell you a little about what hospice volunteers do....more
I was here working on a scarf last night; not for long as my eyes were tired and almost ready for bed.
I received a text on my phone.
Sue had passed.
It’s over. My friend had gotten her wish to be with her Mom.
After the text from the caregiver, around ten minutes later, Sue’s husband phoned me to let me know. I told him I was so sorry, and he started to tell me how he was waiting on hospice to come. He knew the day was coming but he was in shock.He cared for her for the last four years and was married to her for the last thirty-two. I guess I’d be in shock too.
I do sick calls for the Church.
I see three, maybe four people.One of them is my pal Sue.
After getting off the phone now, I have mixed emotions.Her secondary caregiver informed me they started her on hospice yesterday. She is getting morphine for pain every four hours.
The Elizabeth Hospice It is 3 p.m. the Friday before Thanksgiving. You have a sense of the days passing by with nothing to show for your efforts. You have a need to accomplish so much before Thanksgiving Day. You are tired, wish this was not happening and cannot wait for it all to be over. Sound familiar?...more