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.
Many adult children start to notice changes in mom or dad. Depending on your family dynamic, you may know a lot or very little about what they have planned for the rest of their lives. Many of us want to be able to help our parents if they needed it, and most of our parents are resistant to even consider asking for help from their children.
My children have watched as I’ve been the primary adult caregiver for my parents which I have been blogging about for several years on DealingwithDementia.org. Had my parents not told me their plans and shared their wishes for retirement with me, my job would be so much more difficult and stressful. I know that I’ve been fulfilling their wishes to the best of my abilities.
It’s particularly important to do more than the estate lawyer, financial planner and insurance advisor recommend. You need to talk about your choices, leave a roadmap to your documents, accounts, and assets and repeat these conversations as time and circumstances allow.
I recommend you get your own house in order and use it to share with mom and dad what you are doing and even ask for their advice. It’s a great way to start a conversation.
Four products to help you navigate these choices include:
Five Wishes is legally binding in 42 states and lets your family and doctors know:
Who you want to make health care decisions for you when you can’t make them.
The kind of medical treatment you want or don’t want.
How comfortable you want to be.
How you want people to treat you.
What you want your loved ones to know.
The Conversation Project is dedicated to helping people start the discussion about their wishes for end-of-life care.
MemoryBanc: Your Workbook for Organizing Life is a practical system to help couples share account numbers, usernames, and medical and household details so that they can stay on the same page; it also provides individuals a solution to easily share this information should they ever need a loved one to step in and help them.
When people first meet me, they would describe me somewhere between quiet and aloof. I’m not sure if this is just part of my personality profile or became part of me because we moved around so much when I was younger that I learned my best friends developed with time. I have found in the work setting, listening to the discussion and saving up my voice until the end served me well.I share this because this blog and the ease at with which I share what’s happening in my life is very different from the woman you would meet in person.
However, I’m realizing that in general, I am very talkative and approachable on the subject of caring for a parent with dementia. More people know this about me than even the names of my husband and children. It is never I topic I start but I’ve found I’ve been in so many casual conversations that some aspect of caregiving or dementia is mentioned that I quickly find a common bond that seems to be broader than personal interest, husband or child topics.
Recently, I found this bond with a woman at Church. Her experience in caring for her mother-in-law sparked a fire and she recently jumped career tracks and is now going to be working in a local community to improve their services for their residents.The experience of caring for a parent is changing many of us in positive ways.
She sent me this article and I thought it included some great general tips on how to be a better communicator. I included the list as well as added some of the things I have learned in the past year. They include:
#1: Make it a priority to engage in “time-limit-free” conversations. I found arriving with an agenda can turn your visit sideways. It’s more important to visit in the moment. Your calm translates to their calm, your angst translates to their angst.
#2: Use shorter sentences, and don’t ask more than one question at a time. Avoid asking questions about what they just ate or did. Since short-term memory goes first, this can create some discomfort when they are unable to recall the information. My mom would come up with logical answers, but had no relationship to factual information.
#3: Talking is overrated. I like to bring pictures and share my memory behind the photograph. My parents were never huggers or hand-holders, but as often as I can I work in a hug, a kiss or a hand-hold. One of the most memorable moments I spent with my Dad was holding his hand last September, two weeks before he died.
#4: Try alternative means of communicating. I write my Mom notes as well as spend time just sitting with her around a puzzle. Doing puzzles are a great way to connect over a shared purpose and exchange smiles and winks when we find the right piece.
#5: Make as many connections as possible, both with your words and your body language. In general, I will avoid looking at my phone or email and just will sit quietly if my Mom and I are not doing something together. My goal is to give her my undivided attention when I visit.
#6: Be calm, and remember the past. I learned early on that my Mom would mimic my emotions. I work to redirect the conversation if we are moving into a direction that gets her angry. Quickly shake it off and consider bringing up a fun memory from your past to share.
#7: Don’t take it personally. So easy to understand, but so difficult to do.
I hope some of these tips help you on your journey. Experienced.
Some additional stories related to this topic include:
Manage a Visit with Someone Who Has Dementia
I provided a list of “Do’s” and “Don’ts” to help those just getting exposed to someone with moderate dementia. Some of these take time. Trying to connect and being present is more important than executing these perfectly.
When I started blogging, one of my first readers was Kate Swaffer. She is diagnosed with early on-set dementia. I have an appetite for questions — it’s one of the best ways I learn.
I proposed to her that we launch a joint blog where we have a conversation. I will ask her many of the questions I would love to be able to ask my parents. She has helped me gain a broader, more compassionate understanding of dementia and how I can best help my parents.
The blog is now live and I invite you all to take a look. It’s called The Dementia Dialogue. Proud.
