We avoid this conversation, but I know the guilt caregivers feel when they aren’t sure if they are doing the right thing for their loved ones. It’s time for us to start having the discussion about end of life wishes since 9 out of 10 American’s will need someone to speak on our behalf before the end of our life according to a joint study done by the National Institutes of Health and Veteran’s Affairs.
This Thanksgiving or at your next family gathering, I hope you will carve out some time to start the conversation with your loved ones on how you plan to live the rest of your life. The kits listed below offer some inclusive ways to begin this discussion with your loved ones.
I am lucky my parents shared their thoughts with me. It made a difficult journey a little easier. However, I had many choices to make that were gut-wrenching that we never covered, but the fact that my parent’s made it clear that they wanted quality of life over quantity of life made those difficult decisions easier for me and my siblings.
My dad was moved into a hospice facility when we couldn’t arrange the right care for him in his retirement community. He was living with my mom who had vascular dementia and didn’t want any help in the apartment, but dad needed constant support to keep him comfortable.
I end up in the hospice facility with dad in what turned out to be the final night of his life. He was medicated for comfort, but would have periods of wakefulness. During this time, I watched as my dad was looking right to left and saluting. I had seen him do this many times before–he was saluting soldiers marching past his bed that I could not see.
What I recognize now, but apparently instinctively felt, was that my dad was very close to death. My siblings will recall my angry phone call which was very much out of character asking them why they weren’t bedside. To be fair, my siblings had been with dad all day and helped move him into the hospice facility. None of us expected his stay to be so short.
I look back on that experience and agree with the author of the Post article. I believe my dad got comfort from seeing as West Point describes as The Long Gray Line of soldiers marching by as he was preparing to join them. Remembered.
My mom had fallen and as a precaution her memory care community suggests we send her to the Emergency Room because she is complaining of leg pain. When I arrive, I immediately understand that everything for mom has just changed. Her leg is propped up but she looks uncomfortable. Any attempt to move her leg results in “wait, wait, wait.”
When they take her for the X-ray, I use the time to unravel. I know that she has broken her hip and know that the next 24 hours is going to result in some difficult decisions. Mom is 84 years old, described by her doctor’s as “frail” and well into a moderate stage of multi-infarct dementia. When the doctor comes in to confirm a broken hip, she gives me two options: Surgery or No Surgery.
Because I already experienced the consequences of a broken hip with my father who was in excellent physical condition, but never really cognitively bounced back after anesthesia, I cringe at the idea of what would happen to my mom.
The doctor explains that we would be doing surgery for pain management, but the Do Not Resuscitate (DNR) order in place would have to be lifted if this option is pursued. Now it’s mine turn to say ”wait, wait, wait.”
I realize it’s time for me to call in an Aging Life Care™ Professional. I need help navigating the choices for my mom and making sure I follow her wishes for end of life care.
I called Caring Considerations and by morning Debbie Aggen, RN, CSA® meets me in the hospital room. I explain to her that for pain management they suggest surgery, but are telling me I have to lift the DNR in place for my mom. My mom was very clear that should she lose her cognitive abilities, I should put a pillow over her head. While that isn’t really an option, when the doctor and I discussed it two years ago, the doctor put into place the DNR. Should mom have a critical medical emergency, she did not want extra measures taken to sustain her life. I don’t understand why the doctor is insisting that if mom has an issue during surgery that they be allowed to resuscitate her. I can only imagine a weaker and battered mom coming out.
Debbie listens to me and reviews my moms charts. She recognizes what I could not, my mom was most likely not even going to be able to qualify for surgery. She gives me some language to use and suggests that I ask for a geriatric consult. When the geriatric doctor arrives, I get to have a real conversation about my choices and my moms wishes. Eventually mom is discharged into hospice after it is determined that she has too many other health issues to withstand surgery.
Debbie visits my mom when she returns to her memory care community, She counseled me as I watched my mother lie in pain in her bed and felt helpless to soothe her. Debbie helped me understand the choices, and use the right language to help convey to her hospice team my mother’s wishes and ensure she was comfortable during this last stretch of her life.
It wasn’t easy and I had a host of engaged siblings. However, none of us knew how to best navigate mom’s condition and having Debbie by my side and a phone call away was a lifeline for me as I struggled to help mom. I hope more families will begin to understand the value of professionals certified in aging life care / geriatric care management, which is a holistic, client-centered approach to caring for older adults or others facing ongoing health challenges.To learn more about Aging Life Care, you can visit the website for the association of dedicated to supporting these professionals. Benefited.
My son got me hooked on “Game of Thrones” a few seasons ago. When he left for college, I realized I would no longer have a viewing buddy. My daughter quickly volunteered which meant there would be hours of TV getting her up to speed on the show.
During the 4th season, there are a few scenes in which people were dying and out of mercy, someone put a knife through their heart, or slit their throat. My daughter wondered why they would do this, it struck like violence, but in reality they were exhibiting mercy. It was the only way to help them avoid lingering in pain. As my daughter expresses dismay, we start to talk about it and I immediately recognize the complexity of mercy.
For anyone who has managed the hospice journey for a loved one, you understand the conviction it takes to be bedside and demand more comfort medicine.
You watch as your loved one’s body fights, even against what you know to be their end-of-life wishes.
I still feel conflicted about the last week of my mom’s life. She broke her hip and surgery was not an option; she had a stroke and no longer recognized me; she was unable to enjoy chocolate and would pack it in her cheeks; she was frightened and uncomfortable. We did what we could to bring peace. Now it’s time for me to find my own. Battled.
After a week in hospice care, mom passed away on Christmas. It was incredibly difficult to navigate for a host of reasons, but I was glad my siblings had time to visit. Our goal was to keep mom comfortable. She will be missed, but unfortunately, I’ve been missing her for years as the dementia stole her away bit-by-bit.
I’m glad to know that she is now with dad and all of the suffering has ended. Conflicted.
I think my mom’s favorite activity now is napping. She has really slowed down over the past few weeks. In hopes of having a visit that didn’t involve me watching her nap, I brought activities with me.
So far I have tried:
Adult Coloring Books. My mother-in-law introduced one to our family when she gave one to my daughter as an activity on our flight to the church mission trip in June. Now I see them everywhere.
Manicure. On my last trip we sat outside and I removed the remnants of the red nail polish she got in early July. As soon as I was done and she inspected my work, she took a nap.
Pictures. While I always have a few pictures from the week on my phone, my mom has a hard time understanding what I’m showing her so I usually pull out her scrapbook and retell stories from our past.
I follow my mom’s lead and try to ensure she is comfortable and happy. It’s all I can do as I struggle with the fact that she continues to live in a state that she asked me to never let her fall into. Many of us fight the angst that we are failing to fulfill our loved ones wishes, while watching them slip deeper and deeper into dementia.
When it’s my turn, I sure hope we have more options on how to manage the lingering end of life when we are no longer leading the life we imagined. Prayed.
Today, an article appeared in The New York Times echoing some of my laments in honoring my mother’s wishes titled Complexities of Choosing and End Game for Dementia. My husband sent it to me after listening to me last night talk about some of the choices I have to restate in moving my mom to a new community.
The subject of the article, Jerome Medalie, states “If I’m not me, I don’t want to be.” My mom has been saying this to me since I was in 7th grade — in different terms, but her meaning was the same. After her mom came to live with us, and wasn’t able to do more than stare out the window, I began to hear my mom tell me what I was supposed to do if she wasn’t doing well. She either told me to push over a big chest of drawers on her or hold a pillow over her head. Two very horrible choices that I would never perform. She would say them sarcastically, but it continued even into my 40s. She said it enough, that even my husband knows this about my mom. Because my mom shared these thoughts with me for so long and was so consistent, I understood her beliefs about how she wanted to live and age.
Here I sit and she doesn’t know what to do from moment to moment. For the past month, she has recognized me, but we have gone through periods where she didn’t know my name and was shocked to learn I was her daughter.
Now that she is in palliative care that was recommended by three different attending physicians, I struggle sometimes with questions like:
Do we give mom a flu shot?
If she skips a meal can we offer her Ensure or another form of nutritional shake?
Do we send her to the dentist?
My mom was very clear and has even at times shared her frustration at living with her “bad brain.” She’s had to learn to accept help to dress, toilet, and just move across the room now that she is in a wheelchair. She will still ask for my Dad and is disappointed when he doesn’t appear.
My measuring stick is if it “gives her pleasure.” However, I pause at the dentist since my dad ended up dying of a tumor on the back of his tongue that went undetected. But exactly where and when does this begin and end? Conflicted.