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.
Dementia and end of life wishes don’t mesh. In a story I previously shared of Jerome Medalie that appeared in The New York Times last month, he was quoted as saying “If I’m not me, I don’t want to be.” His words linger in my brain as I follow-up with my mom’s caregivers to share that we should only focus on activities that give my mom pleasure. She’s never been a great eater and there is renewed concern over her eating habits.
My mom was very clear about her wishes. It was a gift that she shared them with me so I have no doubt about what she wants. However, I am struggling with how to fulfill her wishes. While I do not want to belittle this issue, I do feel like I had more compassionate options for my cat than I do for my mom. The story about the woman with cancer in Oregon who chose to end her life on her terms has helped elevate the issue into the national news. However, individuals with dementia don’t have the rights to choose to end their lives in those states that offer it. You can dictate advance directives, but dementia isn’t considered a “terminal illness” so it doesn’t fit into the legislative efforts to provide options being done by Compassion & Choices.
I wonder how I can help change this. I think the first step is to build awareness that we don’t have it right. I’ve navigated so many caregiving issues, but watching my mom progress into this disease without a way to really fulfill her wishes confounds and depresses me. I refuse to believe I can’t make a difference. Maybe not for my mom, but for those that follow.
My mom had completed medical directives and my husband and I were very specific when we completed our estate plans. If you don’t, Compassion & Choices does offer a Dementia Provision but as the article in The New York Times points out, “older adults themselves have begun a quiet debate about whether people who develop dementia can use Voluntary Stopping of Eating and Drinking (VSED) to end their lives by including such instructions in an advance directive.”
The only thing I have come up with was to launch a site that let’s people order shirts, hats, bumper stickers to bring awareness to the issue – cause I know how to do that. It could be a non-profit in which all the proceeds would be donated to help bring more awareness to the issue. If you have ideas on something positive we could do to offer more finite choices for those with dementia. I hope you will share them with me. Determined.
From complicated family issues for Robin Williams, to misinformation about “trust fund kids” by Phillip Seymour Hoffman, it’s easy to stop and gawk. However, it’s reported that more than half of all American’s die without a will.
I’m lucky that my parents shared their wishes with me and my siblings and completed their estate plans well before we needed to use the tools created.
When you turn 65 years old, according to the U.S. Department of Health and Human Services, you have a 70 percent chance of needing 3 or more years of long-term care. You will be on this earth and need someone to advocate for you, pay your bills, manage your household and ensure that you live the life the way you wish.
If you do nothing else, contact a local estate lawyer about a Durable Power of Attorney. It should cost a few hundred dollars and will prove to be priceless in the very likely event that you need it.
Don’t repeat the mistakes of the rich and famous. Deliver the ultimate gift to your loved ones by planning now.
Mom has been moved into hospice care. We’ve not been told her death is near, but there is little hope her condition will improve. When it was suggested, The idea was to have a doctor who would focus on keeping her comfortable. She’s been more communicative than she was two weeks ago, but those moments are sporadic and unpredictable.
I realize what a gift my Mom gave us when she told my brother and I that if she were in a poor health situation, with little hope of improvement, we should “push grannies chest on her.” Since we don’t have a legal or moral option to help fulfill our Mom’s wishes, we are being very vigilant about how to best navigate this final phase of my Mom’s life.
I’m currently fixated on the figures released by Health & Human Services that share 7 out of 10 Americans over the age of 65 will need some form of long-term care services. Women on average need it longer (3.7 years) than men (2.2 years). Most of us hope we will die in our sleep or at least swiftly. That just isn’t the reality of our current world. A colleague that focuses on helping individuals put together their health care wishes M. Jane Markley reminded me of a tool that individuals can use to start thinking about and discussing what they might want to happen in their final years. It’s called the The Conversation Project. It was very easy for me to complete my copy. If you are caring for a loved one, how valuable would this have been to help guide you through the tough decisions you must face/faced?
I know that I have been aiding or managing matters for my parents for nearly 5 years. I was fortunate my parents talked about end-of-life issues before they were needed. It wasn’t dark or gloomy, it was just something that came up as dear family friends became ill or passed away. I was fortunate that I spent a lot of time with my parents as an adult so I knew them. Knowing what they believed didn’t make the decision on how we supported our Dad and managed his cancer any easier, but looking back, I’m confident we did the right thing for him.
Yesterday I was asked to pick up some Ensure for my Mom. I immediately confirmed that I would, but I started to feel a fracture in my belief that I was fulfilling Mom’s wishes. We have the DNR in place and is giving her nutritional supplements the beginning of the slippery slope?
When my brother was visiting he said he witnessed those caring for her working very hard to get her to eat. We spent an entire evening talking through this and felt that our Mom wouldn’t want to be coached so vigorously into eating. For several years she has bristled at any who commented on her food choices or lack of appetite. We want to follow her lead, but also recognize she has dementia and don’t intend to have her starve. It could just be that she’s having trouble swallowing the pureed food.
I reach out to both the Assisted Living Community and my hospice care case worker. “Help!” The head care manager calls me to share that as long as my Mom’s eating half of her breakfast, which she’s doing, they don’t see the need to provide supplements unless she is saying she is hungry. The hospice care manager shares that many of the individuals in their care use these supplements. If drinking them provide enjoyment, don’t hesitate to offer it. The best reason she gave was that the nutrition provided would help her skin which is now started to get red and threatens to tear. The reality is that when she’s ready, she will just stop eating and drinking. I realize the shakes might be a better option than the pureed food and dropped off a variety of flavors.
This is just another complicated issue we are facing as we want to make sure our Mom is comfortable, but not do anything that might unknowingly extend the poor quality life she is now living. Considered.