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Section 3
Check Your Tires:
Talking About It & Planning Ahead
Q. What kind of communicator are you in difficult situations?
A. Love that for you. Read on for poise points.
A. Yeah, you can! Read on for moral support.
A. Totally understand, but that’s not gonna work forever. Read on to overcome avoidance.
Starting the Conversation: How + Why...
You wouldn’t leave for a road trip without putting air in the tires or filling up your tank, and if you were bringing someone along, you’d probably talk about it before you picked them up.
It’s time to have a conversation about your person’s memory changes.
We know… whyyyy?? “It will only end with sadness or an argument.” “Why open a can of worms?” “It’s awkward.” “I don’t know where to start.” We’ve heard it all.
By starting a conversation, you:
Create a welcome space to talk
Normalize future conversations about cognitive health
Help your person feel less alone
Gain mutual education around what is happening
Share that you are there to provide (or secure) support and resources
Share ideas and learn your person’s preferences for care options now and down the road
Remember: taking the step is smart - and brave! Commence ugly crying. It’s ok, we’ve got you!
4 Steps to Pass Go and Collect Peace of Mind
What would you want from people who care about you?
What would you want them to know most about you?
What feelings surface for you when having difficult conversations?
Plan what you are going to say. It’s okay to write it down! It can also be helpful to practice saying the words aloud to make sure they come out just right. Try this in the car or shower.
Are there multiple people participating in this conversation? Choose the best messenger. Does it seem like Mom listens more when your brother talks? Maybe nominate him as the conversation starter.
Pay attention to time and place. You want to be in an environment with few distractions or stressors. Thanksgiving dinner? Birthday breakfast? Don’t ruin special occasions with this conversation. Instead, look for a window to start the conversation when you are not rushed for time or look for a more natural opening when talking with your person where you might introduce your concern and observations.
Start with compassion while expressing your concern. Use a calm tone and be patient.
Don’t take charge without their buy-in. Use the frame of “We are a team/this is a partnership” vs. “This is what we're going to do.”
Explain why you wanted to talk. Start here: You care, and you're concerned.
Give specific examples of incidents or behaviors you've noticed. Make sure to use nonjudgmental language. No blame, no fault.
Listen carefully. The best conversations are two-sided. Try not to formulate your next response instead of being present to your person’s words and feelings.
Encourage open conversation about plans for care, life, death, etc. This can empower the individual with symptoms. Remember, this is about them, not you. You might love your mom a lot, and can’t imagine a life without her, but if she is asking for a DNR, it’s important to listen and find acceptance. We’ll dive deeper into end of life planning in a bit, hang in there.
You don’t need a whole plan, just reflect on what’s actionable from this conversation, who will move it forward, and when.
Remember, this isn’t a one and done conversation. Make one of your next steps to talk again soon.
An opportunity that dementia can provide is time. Upon noticing symptoms, if not before, it’s a great idea to confirm that your person’s affairs are in order - and yours too!
What does that mean, exactly?
It means legally arranging your person’s financial, property, personal, and medical information such that you and trusted people can handle their estate and affairs with as little inconvenience and conflict as possible when the time comes.
These are tough conversations to have, but it’s important to understand what’s important to your person including:
Naming their healthcare and financial proxies
Creating or updating their will and living will
Expressing their care wishes
Expressing their end of life wishes including Funeral/Celebration of Life/Homecoming
Proxies? Wills?? Did your brain just explode? We know, this stuff is complicated and can be overwhelming, especially because it varies from state to state. But before you get out of the car and run for the hills, here are some very basic breakdowns, because even a simple understanding goes a long way toward feeling ready to take action.
Healthcare Proxy
AKA healthcare power of attorney or medical power of attorney
A legal document that allows a person (the “principal”) to designate another person (the "proxy") to make medical decisions on their behalf. A healthcare proxy is typically revocable, meaning the principal can change or revoke it at any time as long as they are mentally competent to do so.
Benefits:
Provides an opportunity for your person to make choices and provide specific instruction about medical treatments, procedures, and end-of-life care
Can provide peace of mind for everyone involved
Can simplify decision-making for healthcare providers
Can ensure clear roles down the road so there aren’t any surprises
Financial Proxy
AKA financial power of attorney
Same deal as above, but for money - a legal document that allows a person (again, the “principal”) to designate another person (this time, the “agent”) to make financial decisions and manage financial affairs on their behalf. Think: paying bills, managing investments, or selling property.
Will
AKA Last Will and Testament
A legal document that outlines how a person's assets and property should be distributed after their death.
the person creating the will = the "testator"
the person responsible for carrying out the will = the “executor”
A will becomes effective only after the testator’s death. It then goes through a legal process called “probate,” during which a court oversees the distribution of assets according to the will.
Living Will
AKA Advance Healthcare Directive
A legal document that specifies an individual's preferences for medical treatment and healthcare decisions including life-sustaining treatments (e.g., resuscitation, mechanical ventilation, artificial nutrition and hydration) and end-of-life decisions (e.g., Do Not Resuscitate orders).
A living will becomes effective when the individual is unable to make healthcare decisions due to incapacity or unconsciousness.
You may be thinking, isn’t this the same as a healthcare proxy? Not exactly. Unlike a healthcare power of attorney, a living will typically does not designate a healthcare proxy. It directly conveys the individual's healthcare preferences and guides medical professionals and family members in making decisions consistent with those wishes. Appointing a healthcare proxy is done in addition to or in conjunction with a living will.
Funeral Planning
AKA Celebration of Life, Homecoming
Doing this with your person or for yourself can:
Be empowering
Encourage reflection and open conversation
Eensure wishes are met
Rrelieve family burden and reduce disagreements
Save money and alleviate financial stress
Respect cultural and religious customs
Provide peace of mind
Here’s a worksheet from The Conversation Project, to help you through these discussions and decisions.
Hospital Go-Kit
If you are experiencing frequent hospitalizations due to falls or other chronic conditions, consider an emergency kit.
Here’s a printable checklist.
Community Communication Plan
Work with the squad to identify how you’ll communicate. This might include:
Daily texts, weekly video calls, or monthly reports
Use of care apps that can track your person’s appointments, progress, activity, and more
A phone tree
Everyone will receive care or care for someone in their lifetime.
Mandy Moore, Chrissy Metz, Jon Huertas, and series Executive Producer KJ Steinberg of This Is Us sat down with HFC co-founders Seth and Lauren Rogen and Caring Across Generations’ Executive Director, Ai-jen Poo, to discuss the significance of putting Alzheimer’s and caregiving on primetime TV.
There are many unknowns when it comes to ADRD. Some days will be amazing, others may feel hopeless. While on this winding road, it’s important to manage your expectations.
Remember:
Alzheimer’s disease and related dementias are progressive illnesses. At this time, Alzheimer’s disease and other dementias are without a cure. Remain focused on the life in front of you. Take this opportunity to make the most of the time you have and know there can be a good amount of time ahead.
Medication and clinical trials can only do so much.
Manage expectations around what medication can and cannot do. Many medications are used to slow the progression of the illness. This may not translate to a noticeable improvement, but rather a slower decline.
Psychotropic medications may sedate but will not “solve” behavior problems (which are often an expression of an unmet need).
While we can’t be guaranteed that a clinical trial will be the fix for your person, they are the key to our future. Getting involved in clinical trials (you and your person) could mean finding a cure for generations to come. Clinical trials can be found here.
Your person’s needs will change, and yours will too!
Your person will continue to change and evolve as their illness progresses. It's important to prepare for this and not expect them to remain as you have always known them.
Your needs will change too. Life may not remain as you have known it, remember that a new normal can be okay, even great. Embrace change and ride the wave.
To normalize future conversations about cognitive health
To help your person feel less alone
Share ideas and learn your person’s preferences for care options now and down the road
Start from a place of empathy.
Be prepared.
Set the Tone.
Agree on next steps.
What’s next? Getting your
affairs in order: legally arranging your person’s financial, property, personal, and medical information such that you and trusted people can handle their estate and affairs with as little inconvenience and conflict as possible when the time comes.
Remember:
Alzheimer’s disease and related dementias are progressive illnesses.
Medication and clinical trials can only do so much.
Your person’s needs will change, and yours will too!
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