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?

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. 

5. Don’t think they can’t communicate just because they don’t speak.

fingerpokeThis is the fifth item from my list of things to never say to a person diagnosed with dementia.

The story that immediately pops to mind happened a little over a year ago. I hadn’t met very many individuals with dementia who had stopped speaking until my mom moved into a memory care community. While I had experienced periods with my parents when one of them would be quiet on a visit and they seemed unsure of what to say, they never stopped speaking until the last few days of their lives. So I had more direct experience with my last post on don’t assume they can’t understand you because they are silent.

I still smile when I remember my visits when Gwen would join us. She would only join us when we were sitting off to ourselves, and usually focused on a craft of some sort. She always had a relaxed way about her, but always seem to want to hide the things we were working with. She would subtly remove a paint brush, or a feather, and seemed to wait to see if anyone noticed. I was glad we used non-toxic paint when she decided to drink my cup of paint water on the table before I could stop her.She looked right in my eyes and grinned before I could get out a word. She never did want to join us in our activity, but every time she joined us, I felt like a little bit of my dad had arrived. He was always the jokester.

One day, when another resident came over to join us, Gwen stuck out her finger so that when the other resident sat down, she would get a poke to the rear. While the resident didn’t notice, Gwen burst out into giggles and I quickly joined her when I found the resident wasn’t harmed or offended (thankfully).

I never really thought about it at the time, but looking back realize how much I had learned about spending time with someone who has dementia. I was ready to accept and visit the person that was showing up to spend time with me that day. Although, I never had a conversation with Gwen, we sure did have a few laughs together. Enjoyed. 

 

 

 

 

 

 

4. Don’t assume they can’t understand you because they are silent.

silenceThis is the fourth of my list of things to never say to a person diagnosed with dementia.

Early on, before we had a diagnosis but recognized something was wrong, I would try to over-explain things. This would only make my mom more talkative as she tried to ask questions but usually the conversation would get jumbled up and veer off in an unusual direction.

My dad on the other hand got silent. Whether it was because he didn’t want to talk, wasn’t sure what to say, or had no interest, I will never know. What I did find was that when my mom would start questioning him, he would just go silent. We initially thought our dad was depressed, and most likely he was, but he was also in the early stages of Alzheimer’s when we first noticed his silence.

Later, my dad got into the habit of saying “It’s a nothing-burger” when I raised something he didn’t want to deal with and to my mom would just reply “I don’t know” to defuse her rapidly escalating anxiety.

What I would realize after a few months of pure frustration on my part was that my dad did understand, did know the answer, but just didn’t want to discuss the matter.

I carried this knowledge with me through my mom’s move into a memory care community. There were quite a few silent residents who would respond with a smile at a simple “Hello” or would immediately come join you when invited to sit outside on a park bench. Even through my mom could talk, she started to talk less. It felt like she was feeling less sure of the words coming out of her mouth. Some days, she would be up for a lively conversation, and others, she would just wait until I shared another story.

Some much of what you learn is to see and respond to the person in front of you today. What my mom liked last year, or even yesterday, may not be something she cares for today. I was never one to find silence uncomfortable, so sitting outside with mom and just enjoying our surroundings became one of my treasured activities. Some days, I can still imagine she is right by my side when I close my eyes. Treasured.

 

 

3. Don’t correct or challenge trivial things.

trivialThis is the third item from my list of things to never say to a person diagnosed with dementia. It took some time for me to learn this and I feel like its a partner to tip #2 to not say “remember” — they go together.

I recognize this “don’t” is sadly one of my righteous habits. I know that it has softened over time but growing up in a smarty-pants family where debate was encouraged, we got in the habit of pulling apart arguments plank by plank.

When mom and dad were driving, forgetting to pay bills, and calling me over-and-over to ask the same questions like “what day is it?”, I thought pointing these things out as a failing would help them finally sell their town home and move into the retirement community full time. Oddly enough, they recognized that their spouse was doing poorly, but never recognize a weakness in their own abilities.

What my behavior did was to create distrust with my parents. Generally, my mom would become argumentative, and my dad would shut down.

I realized that I had to change because my parents were unable to recognize what was happening and therefore unwilling to make any changes to their lives.

What I didn’t know then, and still would not have accepted, was that I would have to wait for something to happen to force a change. When dad broke his hip, required surgery, spent several days in the hospital, and weeks in rehab, I was able to learn a lot more about how much help my mom really needed on a day-to-day basis. It also gave me time to collect more information on their finances and their medical history so in the future I could be a better advocate.

I started from the place I knew and within that familiar dialogue I had with my parents as their adult child. However, with their dementia, logic was not logical to them, they were recreating their memory because they didn’t remember. My habit of debating matters, especially when it came to the little things, only made the road more difficult for all of us. Experienced.

2. Don’t say “Remember when … “

rememberHave you ever had a friend say “Remember when …” and you have NO idea or recollection of what they just recalled? We can usually giggle about it with our friends. I have to say the worst are the times when my husband will say “remember when we … ” and my only response is “ummm, I think you did that with one of your girlfriends” and there is probably a little edge of jealously in my response.  After close to 20 years of marriage and several years dating before that, those stories don’t happen as much anymore, thankfully.

However, in some ways when we are talking to someone with dementia, the use of “remember when …” and “remember” is perceived differently since more often than not the person you are asking cannot remember. When someone asks me if I “remember” and I don’t, a little panic button goes off in my brain. How might that feel if you no longer have the ability to retrieve information and this happens to you all day long? When I started to consider that, I could easily understand why some discussions with mom ended up with her feeling anxious.

When I first heard the advice to avoid the use of “remember”, I realized I was using it more often to correct my parents or point out poor decision (see the list of 20 things to NOT say to someone with dementia). I was understanding they could no longer remember, but not really practiced at how to spend time with them. At first, I was trying to get them to recognize that they could not remember, which they never did and is very common. For more insight into this, read the blog on anosognosia.

Some recurring instances included:

  • After we would order dinner at a restaurant and the waiter took the menus, my dad would complain about the lack of service — I changed what I used to say which was “Remember dad, we already ordered”, to “Oh, I heard that chicken dish you ordered is very good, and I can’t wait to get the fried tomato appetizer.”
  • After my mom finished off  a box of peanut brittle and wanted to open up another box for dessert, while I used to say “You already ate half of box,” I would instead get up telling her that I was going to see if there was more and return with a cup of tea and a new subject.

In many ways, I was using “remember” to point out bad behavior or convince my parents that their decision was poor and to illustrate why they needed to let me help. It was really having the opposite effect. When I learned how to change my responses, I found my visits with my parents went much better.

I started to show up to visits with pictures, so while I shared a story and used someone’s name, I would point to the person in the picture. I did it to help enrich the story.

Recently, I read a news article where a caregiver would take pictures on her smart phone to show her mom that she had already enjoyed ice cream. With my mom, I know that would have made her unhappy. She would recognize that she didn’t remember it and suddenly, I became the buzz kill. What works with one person with dementia, doesn’t work with everyone. No matter how you choose to visit and spend time with them, think less about what not to say, and maybe think more about how what you say makes them feel. To someone who is lost their ability to “remember”, it might not be a good term to have in your vocabulary. Reminded.