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How Will You Age Better Than Your Parents?

*This initially appeared in the Quarterly Journal of the Life Planning Network Summer 2016

I am posing a challenge—and steps—for safeguarding your future. After acting in the role of adult caregiver to my parents for more than five years, I have continually added, and updated my own lifestyle plans based on what I learned. As we as a community of professionals look toward how we might advance positive change in the future, I challenge us all to consider first how we are applying what we have learned to ourselves—and, then, how we plan to help others prepare for the rest of their lives.

Every week, many of us talk with families who are struggling with the care of a loved one. Most of the issues revolve around incomplete plans, loved ones unsure of what to do, and usually involve turmoil. How can we help educate our communities about the steps to take toward positive aging?

I watched as my parents made an effort to age better than their parents. They did everything the estate, financial, and insurance advisor recommended and blended in conventional thinking. My parents chose to buy into a Continuing Care Retirement Community (CCRC). They believed that none of their children would ever need to be involved in their care. Many of us know this thinking is still pervasive, and that buying into a Life Care or CCRC and buying a Long-Term Care Insurance policy doesn’t cover the practical lifestyle issues that create turmoil as health issues escalate. There most likely comes a point in your life when someone needs to speak on your behalf; that is something most adults have neither considered nor prepared for.

Everyone should be prepared to allow someone to manage
their finances and medical needs.

Because both of my parents developed cognitive issues that escalated during a healthcare crisis, I needed to be able to step in as their financial and healthcare advocate. When I tried to use the durable power of attorney naming me, and it was refused by firms such as Fidelity, USAA, and even Wells Fargo, I was lucky that my dad had set up digital access to his accounts so I could help manage his financial affairs online. However, it took me nearly a year of forensics to understand their cash flow, corral the finances, manage basic household details, and contact service providers that could service prepaid agreements and appliances covered by warranties.

When it was time to make life and death choices for my dad, I found the guidance in his medical directives minimal. What did dad want me to do when he was diagnosed with a cancerous tumor while living with an Alzheimer’s diagnosis?

Not only do we need to have estate plans in place, we need to provide the detailed information that is needed to fulfill the powers you grant.

Good estate planning is for the living.

Most American’s believe that estate planning is for the distribution of assets, and the 44+ million Americans who are now acting as caregivers in some capacity already know that most of us will need some help in our final years. The reality, according to the U.S. Department of Health & Humans Services, is that 70 percent of us who reach age 65 will need three or more years of long-term care services before we die. We might only need help cooking, or driving; but we might need more—someone to make daily living choices on our behalf. And that reality should mean that more Americans are having an ongoing dialogue about how they will manage their daily activities in future years.

My two children, now 19 and 13 years old, watched as I helped my parents. I often discussed with them the many challenges my parents’ care created. Because my parents bought into a Continuing Care Retirement Community, we knew they would always have a bed, but they wouldn’t necessarily always have someone advocating for their interests and needs. That was the primary role I played, on top of financial and medical advocacy. I wanted them to be able to enjoy their final years. Because I had lived most of my adult life near my parents, I had a good handle on their personal choices and end-of-life wishes. So many adult children that arrive after a crisis begins don’t have such knowledge. If we want a different outcome, we must plan differently.

KaywParents2013

Kay with parents, Vald and Kitty, in 2013. Vald died that year; Kitty died in 2015.

 

Consider some common roadblocks that confronted me as I stepped in as my parents’ financial and medical advocate:

  • Retirement plans and money distributed among a host of different providers. My parents, like others of their generation, were not going to put all of their financial eggs in one basket. It took more than a year to find all of their bank accounts. They had relationships with over 13 financial services firms; their financial advisor knew about only one.
  • Financial institutions often have their own requirements for a durable power of attorney. Some institutions did not recognize the legitimacy of my parents’ powers of attorney. Thank goodness for the internet—and that my dad set me up to act on his behalf digitally. This is a complex issue and my advice is to find a lawyer dedicated to the practice of estate and elder law that you like. You may need help in the coming years.
  • The belief that doctors will take care of all of health care needs and choices. I still chuckle when I recall how every year my mom would tell me she “passed” her physical. Once I stepped in to be her advocate, I had to be able to quickly represent her medical issues and serve as an encyclopedia of her past medical history. The system I created to document it was always in my briefcase.
  • Documentation of home repairs and improvements. I needed it to maintain my parents’ home before it was sold, and then to minimize the tax consequence of the sale to help pay for possible future care needs. It was financially worth the hours of searching for records in the home office, mom’s secretary, and attic files.
  • The digital footprint beyond major financial accounts. We had no idea how extensive my father’s digital footprint was. And without documentation, we were unable to close email accounts and had to cancel credit cards to shut down other services. Thankfully, he wasn’t engaged in any social media.

While we will have new technologies and medical breakthroughs that may improve how we age, I’ve taken steps for the future of my aging that I can control. I’ve made sure, for instance, that in my household there will be no single point of failure. While my husband and I divide-and-conquer a host of tasks, and even some bill payment duties, we now have a shared playbook that my kids and my brother, who is named the durable power of attorney, know how to access and use. Because the practical details and information I needed to help my parents were overwhelming, I created a system to help me maintain my sanity.

When friends and colleagues started to ask me for copies, I wrote up a business plan and received an “Older-Adult Focused Innovation” award from AARP Foundation that launched my best-selling book MemoryBanc: Your Workbook for Organizing Life. The workbook just received a “Caregiver Friendly” award from Today’s Caregiver that will be presented at the October 2016 conference.

While I set up all these tools thinking I would be helping caregivers, I’ve been rewarded to learn that most of my clients are between 40 and 60 years old and use the system to coordinate their shared households or set up plan B with a friend. Our world has changed, and how we manage our documents, accounts, details needs to change as well.

I am answering the challenge to improve the future of aging by creating and maintaining a roadmap of my accounts, documents and details. It includes a list of my 80 online accounts, a copy of Five Wishes—an advance directive created by the non-profit organization Aging with Dignity—along with a summary of my end-of-life wishes in more detail to help guide the person named as my medical advocate in my healthcare directives. I am also volunteering dozens of hours each month to teach classes, develop a village within my own community, write articles and make media appearance to advocate how sharing this information will help all of us age better. Will you join me?

Kay H. Bransford is a daily money manager and the best-selling author of MemoryBanc: Your Workbook for Organizing Life.

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10. Don’t assume because they can’t tell you, that your words or actions don’t hurt their feelings.

goldenruleThis is the tenth and last detailed item from my list of things to never say to a person diagnosed with dementia.

In some ways, this is a culmination of many of the key things to recognize when you are engaging with someone with dementia. While the person in front of you might be very different, seek to connect with the person you know. I understand that it’s easy to think they have no awareness of their surroundings, so why would they realize what was being said?

What is remarkable, and why dementia is devastating to those of us witnessing the changes in our loved ones, is that we see it steal away reasoning, executive functions, and interest in societal niceties. But if you are watching, you will see the individual need for meaning and purpose and the ability to connect with other humans remains.

When my dad passed away, and mom was in her assisted living community, she stopped going to lunch. She said she preferred the peanut butter and jelly sandwich in her room. When I would visit over lunch, I learned that most of the other residents didn’t want to sit with the “crazy lady” who couldn’t remember their name, ask them questions, or would just repeat the same story over and over. She didn’t want to go to lunch and sit alone. Who does?

There has been a good change to the way we view individuals with dementia. Kate Swaffer who posted the initial 20 “don’ts” has done a wonderful advocate for herself and everyone diagnosed with dementia. Behavioral research also demonstrates how changes to an environment and how you interact with them can benefit someone with dementia. Dismissing that the ability to recognize a terse remark or slight, is a mistake that could lead to agitated behaviors — just as it does for those of us without a dementia diagnosis.

The golden rule to “do unto others as you would have do unto you” applies to everyone. Recommended.

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9. Don’t assume they can’t answer for themselves.

questionsThis is a deeper dive into the nine item from my list of things to never say to a person diagnosed with dementia

The underlying premise of this suggestion is to be continually mindful of your loved ones basic human need for meaning and purpose. Early on, when I would take mom to the doctor and had hoped to pursue a diagnosis or testing to understand why she no longer seemed to have short-term memory and seemed to now have a short temper, I would always let mom answer the doctor’s questions. When I wanted to convey a more detailed answer, which sometimes conflicted with my mom’s response of “No” to every symptom the doctor prompted her on, I would start with “Lately, I’ve noticed …” My mom was often angry with my answers and would work to dismiss them all.

Later on, when we would see a doctor that knew they had dementia and would often turn to me to ask the question, I would put it back to my mom or dad to try and answer first. I was amazed at how many people in the medical community don’t recognize how dismissive their bedside manner appears. I also recognize that they are now battling a 15-minute appointment time. However, I always felt it was important to give my parents the opportunity to answer any question.

So many people make the assumption about the individual in front of them. It was one of the reasons I wanted to move mom into a community dedicated to memory care. The staff was well-trained and engaged the resident directly, which went a long way in helping me be comfortable that mom was going to live with dignity.

In the last year of both of my parent’s lives, when they couldn’t answer the question, they would just turn to me to answer for them. I fully recognized the trust my parent placed in me to speak on their behalf, but I had to earn it first. Reflected. 

 

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8. Don’t blame them for the changes in their behavior.

changeThis is a deeper dive into the eight item from my list of things to never say to a person diagnosed with dementia

There is a learning curve when it comes to spending time with your loved one who is changing because of their dementia. It’s subtle at first. While I felt like something was wrong with my mom, most of my siblings just thought her behavior was normal. She could be very prickly, so why did I think her angry outbursts meant something was wrong?

When she started to challenge us on things that she didn’t remember and didn’t want to accept, we wondered if it was a personality quirk she had hidden from us for decades. What we didn’t know was that her brain was changing which will result in new behaviors.

The hardest time to accept this is early on, when there are small changes to thinking that have occurred. Because my mom could never absorb the fact that she had a form of dementia, she took our feedback very personally. She really believed we were making up the stories we would tell her about past events.

I don’t feel like we ever blamed her, but do recall that she felt like we were. I blogged about my mom saying so several years ago. While we thought logically explaining that she was having trouble navigating some things, she was very angry and felt like we were blaming her. We just wanted her to allow us to help her.

However, it took me and my siblings some time to understand, absorb, and adapt to help our parents. I have dozens of posts where I took things my mom said to me very personally. So much of mom still seemed like mom. On the other side of my journey, it’s easy to recognize. While you are in it, be kind to yourself, and your loved one. Reflected. 

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7. Don’t remind them of a death of a loved one or pet.

7. This is a deeper dive into the seventh item from my list of things to never say to a person diagnosed with dementia

60Years

Mom and Dad on their 60th wedding anniversary.

This one is a TOUGH and how it applies to your situation is a judgement call. Just thinking about the calls I would get from my mom asking me where dad was brings tears to my eyes. While the idea that a couple is living together with dementia sounds awful, I think it was comforting to both of my parents once they were in Assisted Living and had the right types of support around them to keep them safe. A few months after they moved in, they celebrated their 60th wedding anniversary.

 

Within the year, my dad was diagnosed with a cancerous tumor on the back of his tongue. He died exactly one month after he was diagnosed. We were all numb at the choices and speed to which everything moved.

For weeks, mom would call me angry that I hadn’t told her when dad was coming back from the hospital. We believed that mom needed to have the opportunity to grieve and bury her husband of 60 years. How do you do that when someone has no short term memory?

I was thankful that we took a picture of all of us around dad after he had passed away. It is the saddest picture I have ever seen. I wasn’t really sure what struck us all to decide to have the hospice nurse take the photo. However, it allowed me to help give my mom a way to remember.

As a military veteran, dad’s burial was going to have to wait for months.  While I would never bring up the topic, when mom demanded that I take her to see him in the hospital, and no amount of redirecting worked, I would shift to talk about a fun memory of dad. I could offer the picture if she didn’t believe that we had all been bedside to say goodbye.

Some days mom fully remembered that dad was gone, on other’s she just didn’t understand how he was gone and it pained her that she didn’t remember any of it.

When my mom would ask about her sister who lived out of the area and passed away the same year, I would join her in wondering how she was doing. I didn’t feel she needed to know that her sister had passed away from her own health complications. However, when it came to where her spouse of 60 years was, I often ended up telling her that he had passed away if redirecting the topic wasn’t working. I would always try to include a good memory we could discuss instead of having to linger on the death.

I think this one boils down to the individual. It was easier to avoid any reminder of dad’s passing the further we got away from his death. After the funeral, we had a beautiful montage of pictures made up for the service that we hoped convey that we had honored him and all been together to celebrate his life.

Dementia sucks in so many ways. What I learned was that I needed to adapt to help my mom in any way that I could. Sometimes it meant delivering the news that dad had passed away, but most often, it mean shielding her from unpleasant details that none of us wanted to revisit. Empty.

 

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Sam Huff, NFL Hall of Fame Linebacker,Validates that Estate Planning is for the Living

samhuff

Sam Huff in 2012 (John McDonnell/THE WASHINGTON POST)

In the story in The Washington Post titled Sam Huff needs help making life decisions; there is a fight over who should do it, he validates why every adult over 18 should set up and be very clear about whom they want to represent them by putting into place a durable power of attorney and an Advance Medical Directive (AMD).

 

His story is complicated because there is a disagreement between his daughter, who Huff granted durable power of attorney in 2011, and his domestic partner, who he named as his agent in his AMD. This case illustrates why it can be problematic to have one person in charge of your finances (the one with the durable power of attorney) and someone else that would make healthcare choices (the one named in the AMD).

When they don’t agree, the brunt of the conflict usually penalizes the individual that needs help. In this case it’s Sam Huff.

This story isn’t about dementia, but about the need for everyone to put into place estate planning tools. Good estate planning is for the living.

I’m going to go out on a limb and guess that the lawyer that wrote up these two documents might not have been dedicated to the practice of estate planning. Quite possibly, he may have used a tool like Rocket Lawyer that might not educate on the issue of picking different individuals for these two roles. While there might have been a good reason it was done, right now we are seeing exactly why it’s a bad idea.

Even if they weren’t having this very public disagreement, there are many other ways this conflict plays out. For Sam, the person with his AMD might select a memory-care community they believe will best address his needs. However, the person who would be making the payments could refuse to complete the application or pay for the community.

Sadly, in this story everyone is losing. I hope you will use Sam Huff as an incentive to get to an estate lawyer and at least get a durable power of attorney and Advance Medical Directives in place. You never know when you might need them, and for a few hundred dollars, having them done right will serve you well. Advised.

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6. Don’t talk about someone with dementia in front of them like they don’t exist.

brunchwithmom

My sister and I sit across from our mom and keep the conversation going.

This is a deeper dive into the sixth item from my list of things to never say to a person diagnosed with dementia. This one is a bruiser–and I watched it happen so many times by people that are trained to care with individuals who have dementia, that it shocked me every time.

Most often, issues come up in a medical setting. Early on, when we would visit a doctor, I would bring a note explaining my mom or dad’s diagnosis because MOST DOCTORS DON’T READ THE MEDICAL RECORDS. I would confirm with the person doing the intake that they got the note so I never needed to say in front of my parents that they had been diagnosed with “multi-infarct dementia” or “Alzheimer’s”. Before I adopted this tactic, my parents would respond with disbelief and anger which created a whole cycle of inquisition by my parent who never recognized or absorbed their diagnosis.

Unfortunately, when the doctor arrived, they would turn to ask me questions as if my parent wasn’t there. I would immediately turn to my mom or dad to see if they wanted to answer. They would usually say they had nothing to share and I would then offer up a response. I know that the doctor’s don’t have much time to be with the patient, but this is something that for humanity sake, really shouldn’t be rushed.

The worst was when it was done by the family. I understood they don’t know what they don’t know, but you could watch the family visit go sideways almost without fail when it happened.While they might not be able to navigate a conversation about even the weather, at our core, we recognize being slighted. It must be one of the most basic human qualities that helps keep us alive.

When we visited with our parents, my siblings (or my kids) and I would always include them in the conversation, even thought we might be carrying on the entire conversation.

There were several times when I would want to talk to my mom’s personal care assistant about something and I never did it in front of my mom. We would meet outside of her room, or take a quick walk together.

As the person with dementia is losing the ability to remember or even navigate their day, the thing that needs to remain is their sense of worth and that element of them survives all the way to the end. Witnessed. 

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