Category: My Dementia Caregiver Story

Engagement Brightens the Day

On a recent visit with a loved one that is diagnosed with Younger-onset Alzheimer’s, I was happy to see that over my visit, they got more communicative, and emotions began to emerge back to familiar patterns.

While I have many clients that have been diagnosed with varied health issues, the concept of the long goodbye is a very apt description as you engage with a loved one diagnosed with most forms of dementia. While I regularly interact with clients diagnosed with dementia, when it’s someone that has been in my life for decades and I see the loss, it is emotionally more difficult.

I try to never forget this with I am working with a spouse or family member. I know the pain of loss as your loved one is sitting right next to you.

While I was worried about my visit, my stress/loss/sadness lifted as walked, shopped, ate, worked alongside, and built an outdoor porch swing … simple tasks that she could participate in and work in tandem. We laughed at familiar jokes, discussed likes and dislikes, and had what felt more like a traditional visit.

She was very quiet on day one. I wasn’t sure if she knew who I was and there were some odd moments when I could tell she was on-guard. By day two she was sharing thoughts on things and during one conversation mentioned that she was frustrated when her brain betrayed her. Always one that liked shiny things, we had fun at the mall and she got to pick out a new sparkly belt for her favorite pants.

There is still life to be lived. However, it takes more time and consideration on how to help a loved one navigate their days. In my local area, there is a nonprofit that runs a day program called Insight Memory Care. They work to guide individuals with memory loss through their day and time-and-time again I have seen how more engagement brightens the day, and the working memory for those diagnosed with memory loss.

I hope that if you are caring for a loved one, you can find local programs or resources that might provide both physical and cognitive stimulation which can make a difference for both you and your loved one. Encouraged.

I know caring for someone you love and navigating forward is overwhelming. They are lucky to have you in their life to support them. THANK YOU! They may not be able to tell you but they do appreciate your love and care.

Some places to look in your area for resources include:

  • Contact the local government for services. You can use this government website to find your local agency: Eldercare Locator (acl.gov)
  • Hire an Aging Life Care Manager. They are professionals dedicated to support health interests and have experience and knowledge with the local care services. They are an invaluable resource to get solutions for your loved ones. You can find one in your area here.
  • Contact your local chapter of the Alzheimer’s Association. While Alzheimer’s is just one type of dementia, the same resources and programs being offered can benefit you and your loved ones.

PNC Stalls to Accept DPOA

The length of time it takes to get a Durable Power of Attorney (DPOA) accepted at a bank seems to only get longer and more frustrating every year. In our work at MemoryBanc helping clients navigate forward when estate plans need to be put into action a large portion of upfront time is explaining that getting recognized as POA takes time.

It sounded so easy when you sat with the lawyer.

Two weeks ago, I took in the power of attorney and the local banker sent it in to the back office. Two full weeks and 10 business days later, they still haven’t responded or recognized me in the banking division. At the same time, I got an affidavit notarized and sent in my POA with that form to PNC Investments, and I was recognized within days. However, AFTER doing that, they say they can’t help because AIG manages his IRA so I now have to file my POA with them.

My client is receiving care services and has limited resources and cash available. I need access to help manage paying overdue bills, preventing a tax lien on his property, and to plot out his care for the next few months.

I hope this serves as a warning to you to consider:

  • Discussing your finances with the individual who will serve as your POA.
  • Give the person who you want to serve as your POA your online usernames and passcodes if you want them to be able to help you in a timely manner.
  • Considering setting up the POA designation with the bank BEFORE you need it.

I have contacted the lawyer who drafted the document to help. In my state there is a statute that was implemented so that banks accept the POA documents. However, it requires lots of work to still get recognized since the “legal” team in another state.

When did it become acceptable to stink at customer service? I say NEVER.

PNC joins a growing list of banks I would never personally use. DISAPPOINTED.

Do you want your parent to move in?


The isolation experienced during COVID has made most of us reconsider how we want to care, and be cared for when we need it. Many of us had to watch as loved ones declined during the long isolation. I noticed it the most for clients that I worked with who were in retirement and assisted-living communities. It was a tough road and we are still navigating how to balance safety and engagement.

My mom and I after her community had a tie-dye party. I liked hers much better!

Had I known how my parent’s care journey would end, I would have made some different choices. I see families facing these choices every week, and it’s never an easy or simple choice to make. Sometimes you are having to make a choice for someone who is unable to understand why their living situation needs to change.

Sometimes the person caring for the individual needs more support, and sometimes the person receiving the care might not like the arrangement. I am sharing this story that quotes a local professional that I met years ago on a panel discussion. I was immediately drawn to her practical advice and wisdom, and also witnessed her support when we both worked for the same client.

I believe the more you know, the better you can feel about the decisions and choices you may need to make with or for someone else … as well as consider what you might want when you are the one needing a little more help. When mom or dad wants move in with you: How to decide and what to say if the answer is no.

The earlier you can have these discussions, the better for everyone. Hoped.

My Fight Against Charity Fraud

Early in my caregiver journey with my parents, I recognized that my mother was writing checks to charities that they had never previously supported. I didn’t realize how prevalent it was for older adults to change giving habits until I started helping another older adult and saw her giving in ways that didn’t line up with her prior habits.

I knew it made my mom feel good to write those checks. However, what I didn’t know at the time was that that first donation turned my mom into a charity magnet and it resulted in a magnitude of mail NO ONE wants to manage.

Sadly, many good charities have turned over the solicitation to for-profit companies that get and sell your name. It turns out that is why giving to one charity can often create a cascade of new mail solicitations.

My experience and telling my story resulted in me being interviewed on The Perfect ScamSM — a project of the AARP Fraud Watch Network, which equips consumers with the knowledge to recognize and avoid scams.

You can reach a summary of the podcast here as well as follow the link to hear more about our experience. It is a common experience. You show up at your loved ones’ home and see the piles of mail. In this podcast you will learn why this happens and how to fight back. Told.

Assume Appreciation

For anyone who has stepped up to help a loved one, you know how hard it can be.

Your loved one is fighting for independence, purpose, and typically has no recognition of the help they need. It took me a year to really figure out how to better navigate the support my parents needed but didn’t recognize.

I learned that I had to be the one to adapt. For someone with a cognitive issue that they most likely don’t fully recognize, they are going to be unable to adapt.

Years ago when I was still working in Corporate America, we had a consultant come in to help the company function better. One of the things we learned was to always give your team mates the assumption they are working to help you. As you can imagine, we had some internal struggles and this idea did help us start to have dialogue around where we were trying to go and how to get there now assuming we were all going to the same place. It was a game-changer, at least for me, and I still carry on this philosophy in all I do.

One of the things I did learn on my caregiving journey was to sit with my parents, and mostly my Mom, and do things in tandem. While early on the first thought was to take away the checkbook, I changed to a system where I would come and sit with my Mom to help her with the bills. Eventually, she just handed over the checkbook and asked me to take care of the bills for her.

That first year was REALLY difficult and I don’t think I ever cried so much in my life. It was frustrating, heartbreaking, and thankless.

After I changed to approach my role differently, things went a lot smoother.

YES. The time I needed to spend with my parents to help them DOUBLED. It takes way less time to do things solo, but the reality was that my parents wanted to participate.

One day, I walked into my parents apartment, and found the note I have included in this post. “Dear Kay, So thoughtful and loving for you to take us on — as if you don’t already have enough to do.” My Mom was not a gushy lady. Reading this still brings tears of joy and grief to my eyes.

There were some things I could have done differently but I did the best I could. I operated on the assumption that it was an honor and duty to help my parents. In the end, I was surprised to find that my Mom recognized the love behind my support for them.

Even if they are unable to tell you, assume there is appreciation for the support you are offering.

I meet many older adults today who hire me and my agency to help them because they don’t have family to help. The stories I hear are often heart-breaking and they feel very alone.

I wanted to remind you that the people you are helping are lucky to have you. What you do might not always be the perfect option, but it’s okay because you are working on finding the best path forward together. Appreciated.

You Do Not Have to Navigate Alone

When a loved one needs your help, it’s easy to say “Yes” but then find yourself overwhelmed with choices or decisions you don’t know how to navigate.

I lived this journey and recognize how I could have made it easier for myself, and my parents if I had incorporated an Aging Life Care Professional earlier.

I seem families struggle with their situation, and they just don’t know what options there are to help. Unfortunately, your primary care doctor, nor any of the specialized medical professionals you visit, don’t have the time, or the practical knowledge to know how to navigate living choices and care options once a health condition is making life more difficult.

I used Aging Life Care Professionals to help me narrow down the choices for a memory care community for my Mom. She was living in a Continuing Care Retirement Community, but the care options for her didn’t fit her memory care needs. In our area we had over 30 memory care communities. The Aging Life Care Professionals I hired understood that my Mom loved to walk. They gave me and my siblings 3 places to visit so we could make the final choice and also gave us the pros and cons for each. We were very happy with the choice and the advice on how best to help make the move for my Mom. We paid them for a few hours of their time, which helped me save dozens of hours researching options and eliminated hours worrying about making the right choice.

I work with many families who are floundering to help find the right care and understand the care options in their area. I will always recommend they contact a local Aging Life Care Professional to help navigate these early choices. They can help understand:

  • The type of care that would be most useful
  • The terms and conditions in a care agreement with a home care agency
  • The amount of time you might consider having care support in the home
  • How to adapt your home to make it easier for them to stay there
  • When you need to consider a care community over caring for a loved one at home
  • Who are the best doctors to help address the health issues being faced
  • How to navigate what you believe to be your loved ones wishes with their health condition

Those are just the basics and I encourage you to consider contacting a professional in your area and letting them help you understand how they might be able to help you.

What I do know is that so often the caregiver fails because they are overwhelmed. I hope you will take the time to contact a local professional to see how they might be able to help you and your loved ones. Encouraged.

How can I get Mom to Move?

I have lived this journey. You know Mom/Dad are not safe in their home, but they have no interest in making any changes to their living arrangements.

First, recognize that your loved one may not recognize that they are not managing very well. Their eyesight might not allow them to see the dirty counters; a change in their cognition might make a messy room not seem like a problem; an inability to manage more than one step at a time may make picking up and sorting piles of mail seem less important.

A friend visited her mom and they were working on clearing out the closet. They had pulled everything out and sorted it and the day got too long for them to finish, so they left the project and went to dinner. They were all exhausted and planned on finishing the work in the morning. When my friend returned in the morning, she found her mother put everything back in the closet and was angry that her daughter had “rummaged through her stuff!”

It’s hard. You are worried for their safety and when someone is totally lacking short-term memory and having difficulty processing a simple project, it means they really should not be living on their own. Mom refuses to clean out the clutter and says she is not interested in moving.

My Advice? Tell your Mom you are worried and you want her to move (community, your home, siblings home, fill-in-the-blank). Have the conversation. Understand her feelings, fears, wishes. Don’t dictate, yell, admonish, but just have a conversation. After you have had the conversation, determine if you can come back on another day and implement what you discussed but approach it knowing what your Mom is worried about or afraid of.

When someone doesn’t have short-term memory you will just relive the same conversation. Remember that emotions are what usually get remembered, not the content of the conversation.

After struggling through a move from Independent Living to Assisted Living for my parents, my siblings and I had the conversation with our parents. We were afraid … as are many adult children … that the Assisted Living apartment was too small for them. However, we knew we had to make this happen or their community was going to evict them. One day, we took them out to lunch and brought them back to their new apartment. We spent time helping them decorate and patiently answered questions.

Within days, they had adapted and WERE HAPPIER. They loved being able to watch people come in and depart from the entrance. They had totally forgotten about their prior apartment. At this point, both of my parents were in a moderate stage of their dementia. The move can cause a step down in responses and thinking. They actually enjoyed having a smaller place to manage and enjoyed their new home. We were all surprised.

If there is a cognitive issue, you may never be able to talk them into the change. If they are truly unsafe and a change needs to be made, you might have to make it happen if there is no way to layer in safeguards where they are.

If you don’t make the change, you end up waiting for the crisis and then have fewer options and maybe now another health issue to manage. There is no right answer … just the right answer for you and your loved ones. Believed.

My Mom repeats herself. Is that a symptom of dementia?

stylish women leaning on pillars on station
Photo by Daria Sannikova on Pexels.com

We have all done this at some point in our lives — and we either realize it mid-sentence or are told by our conversation partner. If this is a common occurrence and the person repeating themselves doesn’t recall having the conversation before, then it is time to bring it up with the primary care doctor. 

Any change in behavior by a loved one should start with a visit to their doctor. There are a variety of things that could cause changes (medication, lack of sleep,  a urinary tract infection) and not necessarily dementia. However, I do advise you start with the primary care doctor and discuss the changes. The more specific you can be the better so consider starting a journal to help you recall how often this is happening as well as help define exactly what is occurring.  My mom dismissed my concerns when I went to the doctor with her, and she focused on my Dad’s forgetfulness. I didn’t have specific details and facts to frame my concerns. 

Time and time again I know of many families that recognize something is off, but it is not something a primary care doctor can easily identify. Often, dementia won’t be diagnosed until later in the disease progression and early treatment could help slow the advance of the disease. So be persistent. Ask for a referral for a neuropsychological examination. Even after my Dad was diagnosed, he would score 28 on the mini-mental exam out of 30 — push for more nuanced testing.  

Looking back, I now recognize so many issues and signs that alerted us to mom’s dementia, but it was a long difficult road to even get to a diagnosis for a variety of reasons. The biggest one being my mom and dad fought to keep their independence fiercely. I arrived when I was given the opportunity to help them. I just hope that I won’t repeat history if I end up with the same condition. Prayed.

The last year of life is the most expensive

For twenty years, my Mom told me she never wanted to live with her children. They bought into a Continuing Care Retirement Community (CCRC) also referred to as “Life Care” Communities so they would “never be a burden” to their children. For those of you that have seen the first few years of my blog … helping my parents was a very complicated affair. I won’t say it was a burden, but I wish knew then what I learned over the course of her care.

The Costs of the CCRC Path:

Non-refundable deposit to get into the CCRC $500,000 (1999)
This was in 1999 when that was how it worked.

Annual “rent” for their Independent Living apartment $ 38,400
This was the average cost from 2000 to 2012 for a total of $499,200.

At the end of 2012, the community required they move from Independent Living into the Assisted Living community. These were their “discounted” rates for their community since they paid the half of million to move in.

Annual cost for Assisted Living (for two) $117,600 (2013)
Dad passed away in 2013.

Annual cost for Assisted Living (for one) $ 94,800 (2014)
Annual cost for the required personal care
assistant for my Mom $ 98,208
Assisted Living was not the right place for my Mom with dementia. The residents didn’t want to eat with someone would couldn’t learn their names. She no longer wanted to eat in the community dining hall. As you may know, there is no kitchen in Assisted Living and my Mom was unable to prepare her own meals.

After my Dad passed away, my mom became agitated and they required we hire a personal care assistant for 12 hours each day. The memory care community in the CCRC was only for end-stage care, so neither the Assisted Living or the Memory Care were the right fit. We made the choice to move her to a Memory Care community outside of their “Life Care” community.

Annual cost of Memory Care community $ 81,600 (2015)
Annual cost for the necessary personal care
assistant for my Mom $111,600
My Mom was unsteady on her feet after a medication put her in a state of delirium in 2015. She kept falling and ending up in the Emergency Room (ER). We hired someone who could help her use her walker and assist her and keep her out of the ER.

Me with my Mom on our way to the Grocery Store.

So at the end of this journey, my parents spent over $1.5 million. They saved and invested well so they had the money to pay for their care. But knowing what I know now, we could have used that money better to manage the last fifteen years of their lives.

After watching many clients in communities cut off from family during COVID, several had a marked decline. They didn’t have many people to talk with because they were locked in their rooms and their physical stamina decreased from little movement.

For $1.5 million, I would have preferred to have a home where my parents could have lived with us, but still had the freedom to be independent. When they needed care, we could have arranged to bring it in. Thankfully, our community has many programs to stay engaged and active. We could have used that money to maybe deliver a higher quality of life to their final years. Would it have been better? I will never know.

From 2012 through 2015, I was spending more than 20 hours a week helping them in one form or another. The last three years of my Mom’s life cost over $500,000. Had she been living with us, I could have spent more time being a daughter instead of a family caregiver, bill payer, medical support and care manager. I now know how to bring in the support to help fills these roles and that would have been much less expensive and I believe more joyful for me and my Mom. Imagined.

The reality is that things change and what is important today, may not be important tomorrow. So leave some space for adaptability.

To learn more about my journey and the tool I created to help families manage and coordinate the personal information to be a great advocate, get a copy of MemoryBanc: Your Workbook for Organizing Life

Parents Resisting Family Help?

I recall my Dad calling to ask me to come over and help Mom pay the bills. When I got there, she said she didn’t need any help as was just offended. When I turned to my Dad he acted like he had no idea why I had shown up.

It was at least a year later before my Dad was diagnosed with Alzheimer’s and my Mom was diagnosed with Vascular dementia.

I now realize my Dad probably had no recollection that he called me.

They were are really good pair!

There were many instances when my parent’s were very clear that they didn’t need the help of their adult children, they were doing just fine on their own. But they really weren’t. I had helped turned back on utilities that never got paid, cancelled duplicate agreements with contractors, and showed up every time they did call to ask for help. When I would arrive 20 minutes later, they had no memory of the request and then just grew suspicious of me like I was making stuff up.

What I realized later was that my parents were trying very hard together. They wanted to protect and help their spouse and weren’t going to rat the other out to the kids. OK, OK, my mom actually ratted out my Dad, but she was the one failing to get the bills paid and he just forgot where he parked the car.

Now that I help other individuals, couples, and families pay bills and manage the day-to-day finances, I realize that couples can be harder to help than just one parent.

There are usually some creative options if you are concerned and continuing to run into roadblocks. If you want to talk some through, use this link to schedule a call. Offered.

When Dad Got Lost Driving

Nearly 9 years ago I started to share some of my caregiving stories on this blog. As the local family member who was watching her parents fail and behave in new and unusual ways, I was horrified and amused.

Some things were so odd that I couldn’t control my laughter when they happened. Thankfully, my parents would usually join in. We had a great relationship. As the baby of the family, I benefited from my older siblings being teens in teh 70’s and breaking in mom and dad. I was also the only one that stayed around after college. We shared many meals, they were around for two grand-kids, and I often tagged along on my mother’s trips to auctions for her antique’s business.

On this one day, my Dad seemed to finally acknowledge that something was wrong. He had been driving to my home for ten years and we lived a few miles away. Instead of arriving early, he showed up half an hour late and filled with anxiety — two things no one would have associated with my dad.

Driving with cognitive impairment is a risk. Now there is a huge variety to term “cognitive impairment” and in general, any noticeable loss of short-term memory could really put a driver, their passenger and others on the road at risk. Changes to the brain that result in memory loss can change thinking and behavoir.

For someone who is already losing, being asked and expected to give up something by choice, that may not seem like a risk, is a much bigger deal than we often consider. Here are a few tips from Mayo Clinic on how to bring up the subject, include them in the discussions, and incorporate their doctor to understand how their cognitive issues could impact driving.

This is usually one of the first big battles. Approach it softly, identify your concerns plainly, and listen openly to help walk this early road and maybe find a silver lining in how you resolve it. Experienced.