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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
There are many times when it feels like it is imperative to make a change for safety or financial security. However, so often those transitions are so difficult to manage most often because the individual who is impacted doesn’t recognize the change needs to be made.
Waiting is the hardest part.
I have learned that patience and perseverance win the day. After living through forced transitions and the aftermath of emotions and anger when I was living through this with my parents, I found my shift to softer and supportive worked best.
Yes, working in tandem and going at a slower pace take more time. However, imagine if you were on the other side of the equation, isn’t that what you would want?
We arrive as caregivers with a variety of different baggage. The person that is living with cognitive impairment and dementia will have a harder time changing, so the reality is that this falls to the loved ones and support around the individual.
I am working with a client now who knows she has memory issues and a dementia diagnosis, but believes that she can manage the finances just fine on her own. To help, I’m building a monthly schedule to help her and asking the friendly visitor to put due dates on the calendar to remind her to get the bills paid. We will confirm in the background that the bills she needs to pay did indeed get paid.
I work with father/daughter team and over the holidays, the dad finally resigned as Trustee. We have had to fight predatory home service companies and this summer walked in to find a hacker had control of his computer and was starting to transfer money out of his bank account. Thankfully we stopped it in time, but then we spent nearly six months cleaning up the aftermath of the account and credit freezes we put into place. However, his daughter respected how much this meant to him and never pushed him. Over the course of the past two years, she has gently and kindly reminded him of the issues and on this visit, he finally agreed it was time to make the transition.
I know everyone doesn’t have the support and resources that some of my clients have, but I believe there are still ways to reconsider the threat and find ways to support your loved. Got an issue? I’m happy to help. Sending an email to me at Info@MemoryBanc.com. Supported.
Eureka! What I recognized anecdotally for years is now published research that concluded financial symptoms of cognitive issues are surfacing up to six years before a formal clinical diagnosis.
You are noticing changes in your own thinking, or you are seeing changes in a loved one that is concerning, but the primary care doctor just reassures you that you are “fine.” I witnessed this all play out with my parents for years. By the time we finally had a formal diagnosis, both of my parents were diagnosed with MODERATE forms of dementia. Dad they believed to be Alzheimer’s and my mother had primarily Vascular Dementia.
Many financial mistakes were made for many years preceding this, including the decision to stop paying for long-term care insurance. Most of my Dad’s retirement accounts were unattended and forgotten.
After living the journey with my parents, and now supporting individuals and families as a daily money manager, I have seen and cleaned up many of these issues. It is rewarding, but sometimes takes my breath away, when I calculate how much money was wasted or lost over the years that could have been used to help pay for their care.
The research primary looked at payment delinquency. If someone is missing bill payments, when they were prompt payers before, this change could be a sign of a cognitive issue.
If you are experiencing this, or are having trouble making your checkbook balance when that has been a lifelong habit, it’s time to share this with a loved one as well as your primary care doctor.
The earlier you identify an issue, the more options and control you can have over it’s future course. Believed.