When our memories fail us.

As I was caring for two parents who had different types of dementia, I started to second guess my own memories. I started to worry that I was already failing cognitively and then I started to notice how often within my own household we would have conflicting memories of an event we had shared. It made me feel better … and worse.

Apparently, many emotional memories we are convinced we remember, turn out to change over time. In a story that ran in The New Yorker titled You Have No Idea What Happened by Maria Konnikova, it’s interesting to learn how our memories fail us … yet how sure we are that our memories are vividly correct.

simpsonchase

As I write this on the 25th anniversary of O.J. Simpson’s famous drive in a white Bronco, my husband asks me if I remember where I was eating. I immediately know where I was. It is a major restaurant chain that I haven’t entered since this night … but it had nothing to do with that car chase.  I’m looking forward to finding out how different my memory is from my hubby’s.

The research shows that “the strength of the central memory seems to make us confident of all of the details when we should only be confident of a few.”  In one study, they actually ask the participants how confident they were of their recall of memories they had recorded two years previously. Five was the highest level and they averaged a 4.17. However, “their memories were vivid, clear—and wrong. There was no relationship at all between confidence and accuracy.” Worse was that when they were told they were mistaken — they just didn’t buy it.

Knowing how fragile memory can be has made me much more sensitive to how it feels to have your ability to remember challenged. No one wants to hear their memory is bad, but we all need to recognize that sometimes our recall may fail us.

As a reminder, memory loss is not a normal consequence of aging. And apparently we all have problems remembering “flashbulb” emotional events in our lives. Humbled.  

When we can’t find the right words …

Cole&PoppopYesterday was my son’s college graduation. As I drove up, I struggled to shake the feeling of loss that swept over me as I faced another big event without my parents. Since they both battled different forms of dementia, it is a blessing they are no longer on this earth, but how I miss them being able to celebrate another engineer in the family bloodline. My Dad and Cole always ended up in giggles when the two of them got together and he would have reveled in the graduation. 

As I sat at the ceremony listening to the Valedictorian, it became clear that no matter what your age, education, or beliefs, we are all struggling to find the right words to enter into civil discourse. As she and her classmates are preparing to continue their quest to make our world a better place, the things she shared with her peers felt immediately valuable to me as I work with many who have lost the ability to handle the complications of balancing a checkbook, negotiating a contract, or even planning a meal. The added complexity in helping a loved one is that there are the familiar habits and patterns that may put your assistance out of the realm of ‘normal’ and cause discomfort. The best way for me to start a fight with my Mom was to ask if she wanted help with the bills and the checkbook. She didn’t sense any short coming in her abilities so my words felt like a betrayal when I reminded her of the missed water payment or the fact that she signed two contracts for the same home repair with two different vendors.

“Approach with humility and a desire to understand,” suggests Kate Hill. Give ‘space to silence’ and ‘don’t lock the doors’ — two ideas that I think can be applied simply to the role of caregiving.

I know the impatience I felt when I was working, raising two young kids, and also trying to help out my parents. I wanted to just take over and get things done. I needed to allow more time to cross the item off of the task list and include them in the process. So too must we apply this same approach to problems we are facing in our communities, states, and country. 

When our loved ones are already losing so much, the last thing we need to do is to add to the list of losses. I’m excited to see what this generation will do for all of us and appreciate the on words she used to suggest how to be better citizens, friends, colleagues, parents, children, and caregivers. Impressed.

Lying to the ones we love.

Two things that should be a part of every caregiver bootcamp:

  1. An introduction to the medical reality that our loved ones may not be able to recognize that they are having cognitive issues. It’s called Anosognosia and if someone in your life has had a stroke, or been diagnosed with dementia it is something you should understand. The individual is not purposefully dismissing you as I thought of my mother. I assumed she knew something was wrong but decided to ignore it and dismiss my concerns. However, the reality is that most likely she really had no idea that she was failing cognitively. One report cited that a “categorical diagnosis of anosognosia was made in 42% of patients with mild AD” (Alzheimer’s Dementia). Another report cited that over 80% of those diagnosed with varied dementia had anosognosia.
  2. There are times when honesty is painful for everyone when a loved one has dementia. When my mom wondered when Dad was coming home from the hospital, I initially walked her through his death and how we were all surrounding him. I still puddle at the memory of these conversations and it’s been more than five years since I had them with Mom. She relived the pain as did I. Why didn’t I just say that he would be home in a few days? I had a fixed belief that honesty was the best policy … but there were many times when it didn’t serve my Mom.

I wish I had learned and understood this much earlier in my journey as a family caregiver. It will take some time to understand and adapt. However, being armed with this information can help you be a better care partner.

When I finally learned this information and how to apply it, I promised myself that I would tell the truth once and after the initial conversation would find a kinder way to respond to Mom’s questions or demands.

Once I learned how to change, life for both of us got better. Shared.

Giving Back the Checkbook

You know the feeling of helplessness when you don’t have any cash in your pocket and the thing you want requires cash? Well imagine if your loved ones took away your ability to buy things when you feel like you are making good choices.

In my job as a Daily Money Manager, I work for individuals who have usually been diagnosed with mild cognitive impairment or even a specific form of dementia. Usually, at the request of a family member they call and invite me to come meet. They don’t understand why the family is concerned.

I start by asking them how they feel things are going. The response is usually more of “I am managing” and then they usually confess they know they have made “a few over/under payments.” I explain how my job is to help them feel confident in their bill payments and cash flow management. Ultimately, I work to help them feel empowered by continuing to pay bills together.

If I see there is a big concern over exposure to fraud or predatory service providers, I will set up a new checking account. It allows the individual to have a checkbook but the amount of money that is at risk is limited to the money in the account. NOTE: Do not set up overdraft protection but allow the checks to bounce.

A second option is the TrueLink Card. It is basically a funded gift card that you can apply protections to like turning off the ability to charge fees for jewelry, liquor, or phone charges (there are over 20 categories you can tweak). You can see what has been purchased. It does have some complications and limitations as I have seen. One client has had the card fail when he was trying to buy a watch battery (deemed as jewelry) as well as was not able to get his favorite local cheese at the Farmer’s Market because they were using a portable pay device (deemed as a phone charge). I have been able to customize the options and pre-approve that favorite cheese vendor, but when he is at the market, he needs the card to work and it doesn’t always.

At the end of the day, what we want is for our loved one to have meaning and purpose and often, taking away the money can strip them of some independence they deserve.

Is there a way for you to give back that power to a loved one and help them regain a sense of self? Hoped.

How often is a Doctor Available?

As the primary family care partner for my Mom, I was often taking her to a variety of medical appointments. While both of the communities she lived in had visiting doctors, they usually were unable to see her in a timely manner or did not have the type of expertise needed. For instance, after a fall sent my mom to the Emergency Room with a goose egg sized lump on her forehead, we were told we would need to schedule a visit to an Ear/Nose/Throat specialist. For that we needed to travel to a local provider.

A story in The New York Times, Where There’s Rarely a Doctor in the House: Assisted Living, dove into this topic and it is worth reading if you are in the process of looking at a community.

Getting to medical care can be both a time and monetary issue to manage for loved ones that are not addressed by many Assisted Living Communities.

The current communities are having to adapt to the changing demographics and health issues. Most of the Life Care Communities planned on having their residents span a few decades and start moving in when they were in their 60s.

Today, the average resident is over 85 and 70 percent of them have some form of cognitive issue. The community did not plan for their residents being unable to manage their own medical care needs due to cognitive issues. On top of that, there is a cost to get the resident to a doctor in both terms of staff time and transportation. In the metro-DC area, a trip to the doctor for just the transportation averages $110 and this is for individuals who can walk.

When you are visiting, be sure to ask how they deal with the minor health issues like a cold or flu. Do they have regular visits by a doctor and how often? What types of doctors visit? Most communities are going to be unable to handle these issues but it’s better to know before you have an issue than learn about the advocacy and transportation needs after you have made the move. While you may still need to leave to get to a specialist, it is helpful to know they have a robust option for on-site medical care for many of the minor issues that may faced a loved one. Advised.

P.S. Ask to speak with the families of other residents and ask them to share how they have found the doctor. One reader reminded me that you may need to verify what the community sales person tells you.

The road is rocky for all the travelers.

I remember the moments of joy when things felt normal. Whether it was taking a walk on a nature trail or having a conversation in which my mom shined through.

I also remember the moments when the loss was so noticeable I had to leave the room to avoid puddling into tears.

I was the daughter. I can only imagine the intensity of loss with a spouse. Finding a way to manage the journey for everyone is the most difficult challenge for both those diagnosed and those acting as care partners.

It’s easy to get distracted by trying to reach for a destination, but as I learned, I needed to be in the moment, not charting out what’s next. That can be difficult in our world that has evolved to an “always on” mentality. I still have to remind myself of this with my friends and family.

This is just a note to be kind to yourself. I made many mistakes, and most likely, you will too. However, there are many individuals that have no one by their side helping them. It’s not an easy road and your loved one is lucky to have you on this journey with them. Be kind to yourself. Reminded.

Be Kind to Yourself.

Named a Best Alzheimer’s Blog 2019 by Healthline

It’s nice to get recognition. For a fourth year, Healthline has selected Dealing With Dementia one of the Best Alzheimer’s Blogs. I started this blog for many reasons. One was to provide my siblings with insight into the issues I was facing as the only adult child living near my parents. But then it became a way for me to digest what was happening and dissect how I was dealing with it. I have lots of “mea culpa” blog posts. Turns out I finally figured out I learn by doing and I made a lot of mistakes.

Since I’m not one to miss a golden opportunity, I will use this to remind the readers that Alzheimer’s is just one of the five primary types of dementia’s — as shown in the image. It is the most common based on the number of diagnosed cases, but I also know that many individuals are never diagnosed.

Its been more than two years since I cared for a family member with dementia. Today I work with a variety of individuals and families who have been diagnosed and continue to learn how to be a better care partner.

For a full list of the winners, You can visit Healthline. I am honored to be recognized again for this honor. Encouraged.

Integrating into a Community is a Common Challenge

The topic of when to move and why is a common discussion as our parents are aging and our friends are starting to discuss downsizing. In general, most people want to stay at home. However, there are quite a few issues to address from predatory service providers, socialization, and fall issues.

70% of Assisted Living residents have cognitive impairment making it hard to make new connections.

The issue that concerns me most are the single individuals living at home who don’t consider how long they might go without someone knowing to call for help. I have heard too many personal stories of loved ones being on the floor for so long it creates an open wound (this can be in just hours in an older adult) or another complication develops that radically changes their health. A wearable pendant with a push button won’t help someone who has a head injury so I also ask those individuals to consider the ones that will call you if a fall is detected. Unfortunately, you many find you are getting called more than you would like, but too many calls is better than zero should you need assistance.

However, I also have a dear client who moved into a community and I see how hard it is for her to make new friends. It’s clear to me that she has lost some short-term memory which can make it difficult to form new friendships. A recent news I read cited that “70 percent of residents have some degree of cognitive impairment” in Assisted Living communities.

With the average age of most Assisted Living communities in the 80s, it’s no wonder that the transition can be more difficult if the majority of the residents are unable to make new friends.

My mother who was the ultimate hostess and always taught me how important it is to make the new person feel welcomed had a very tough time connecting with the residents in her community. As her dementia progressed, she was unable to make connections. The hardest thing to witness was how much the other residents in Assisted Living avoided those with cognitive issues. I get it, but still don’t like it. I think because I have cared for two parents with dementia, I will always be sensitive to the isolation that they must feel and will make an effort to connect. What I don’t know is if my own cognitive changes might make me less compassionate when I’m in my 70s.

So now I’m wondering if moving earlier is better for the individual so they can develop new friendships and be more familiar with the community before they reach the critical time when living at home is just no longer an option due to safely issues or the costs of bringing the care needed to you. I wish there was a better way to determine what is the best option. For now, I think we all work to find the best options for our individual needs Wondered.

I’d love to hear what your family did or how you are making these choices. There is no right or wrong answer I don’t believe.

Knowing the type of Dementia Helps Everyone

I didn’t handle the diagnosis of my parents well. I thought that hearing a doctor tell them they had dementia would suddenly make helping them easier for me. I finally realized that it was equally devastating to my Mom every time she was told.

For a large majority of individuals with vascular dementia – the type that comes after a stroke – they are unable to recognize their loss. My Mom had no physical changes, and for the first few months thought I was making up the fact that she had a stroke. The medical term is Anosognosia and I wish I knew and understood this when my Mom was diagnosed. She was medically unable to perceive that she had difficulty with her thinking and memory.

In the years since I lived through caring for two parents with dementia, I have found many individuals that don’t understand why a diagnosis mattered at all.

A recent story on NPR Is It Alzheimer’s Or Another Dementia? The Right Answer Matters reinforces the need to get a diagnosis. Apparently, most people default to the belief it is Alzheimer’s, and having some insight can also help the care partners manage better.

I have had a long-standing discomfort with the share of voice Alzheimer’s has taken. First and foremost is because most people don’t even know it is the most common form of dementia. I didn’t realize it until my Mom was diagnosed with Vascular Dementia, while my Dad was diagnosed with Alzheimer’s.

What I have learned is that the primary types of dementia all come with varied behaviors, risks, possible treatments and care plans. One form of dementia comes with symptoms that present more as a personality change than symptoms of dementia. In general, changes in behavior, mood, and memory should all be discussed with your primary care physician. Knowing more can help everyone and I hope you will help learn more should you be concerned about your own health changes or those in a loved one. Encouraged.

Working in Tandem as Dementia Progresses

I was really frustrated when I knew that my parents were having trouble managing their household but refused to accept any help. They did not recognize they needed help which is very common for people diagnosed with dementia. And I also recognize I probably came in too strong.

As the disease progressed, my parents started asking me to help. I had backed of and started visiting without an agenda. When asked, I would work in tandem with them or would accept the assignment and transition to a new topic depending on how they presented the task. If we started to work on a task and they grew fatigued or anxious, I would usually ask if we could take a break and go get a cup of tea or take a walk. I had to change so I adapted.

You have probably heard the expression “meet them where they are” but while it seems so simple a concept, it’s often hard to adapt a familiar pattern. As I adapted to be a better family care partner, I started to recognize all the things I was losing. That helped me recognize how difficult it was for my mom and dad as they were also loosing to the disease.

As I work with others diagnosed with varied forms of dementia, it’s much easier for me to meet them where they are. I now see how easy it is to work with them to pay a bill, organize tax papers, and even help them plan for an upcoming luncheon they have attended for years.

My hope is that they can enjoy where they are a little longer. Learned.

The allure of a ringing phone

Living in the DC metro area has made me numb to politics. However, stories like the recent one FCC threatens carriers with ‘regulatory intervention’ over robocalls are hopeful. However, that means there is still a lot of scammers out there making calls and reaching our loved ones. And too often they are very successful — which is why they keep calling.

The tools I implemented in my own home as well as for my clients no longer work. Many of the calls are sneaking through the protections that used to be so effective.

The reality is that now the ONLY defense is to NOT ANSWER THE PHONE. If you don’t recognize a call, let it go to voicemail. When you listen to voicemail, be careful to discern who is legitimate. That part is tough.

What I see in the homes of my clients that are isolated is how excited they are to hear a ringing phone. Regardless of my recommendations, they generally just answer. The insult to injury is how difficult it is to contest and win the credit card charges when we later find out which ones were successful.

If your loved one is still at home and you can, you might consider posting a note on or near the phone:

  • The phone scammers are smart and crafty.
  • Don’t answer unless you know the caller.
  • Never give out ANY of your personal information.
  • Don’t give anyone your Credit Card numbers over the phone.
  • Call me if you need some help following up on: _______________________

Sometimes, all you can do is work to help defend those that need help. Please let me know if you have any solutions that are working for you and your loved ones now. Interested.