A Caregiver's Journey to Deliver Purpose with Grace and Humor.
Author: Kay H. Bransford
The last of four siblings and the one that lives nearby, I am on the front lines of dealing with our parents as they move into varied stages of dementia. I wanted to document my journey , learn from and share with the rapidly growing community of children helping their parents age gracefully.
Bear with me ... in some posts I'm trying to make sense of things that have been going on for years. Hopeful.
I believe had I known how my parent’s care journey would end, I would have made some different choices. We all know hindsight is 20/20 and it’s easy to second guess decisions made, especially when you are making a decision for a loved one that is unable that choice for themselves.
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 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 recently lost a client who chose to control his own destiny. None of us knew he has been planning this end, but now his call to me to talk through the Estate Plans makes sense.
I reminded him that three years ago we had gone to the bank to provide them with his Trust and he made his checking account POD (payable upon death) to his Trust. The bulk of his wealth … his home and investment accounts … were already in the Trust. ** He chose to make the Trust the beneficiary after death, even though the lawyer had recommended titling the account to the Trust.
Last week I returned to his bank to provide them with the death certificate and transition his account into his Trust so we could pay his bills. The beauty of the Trust allows the Trustee (or in this case Successor Trustee) to carry on and avoid probate and additional taxes. However, the bank CAN’T FIND the Trust document or the POD instructions on his account! It is a big bank and they are going through a merger. Even the best-made plans can fail.
I am not a lawyer, but on a weekly basis run into all the ways great Estate Plans fail. Usually, it is because the people that paid to create the plans didn’t follow the instructions on how to implement those plans. Your work didn’t end the day you left the lawyer’s office after signing the papers … it really just began. Call your lawyer to find out if you are prepared.
Practically, what can you do to ensure you are prepared for when you need help? First, assume that you will need help before you die. According to the Department of Health and Human Services, 70 percent of all adults over the age of 65 will need 3 years of help to manage the activities of daily living. Don’t wait until you need help. It can take weeks and even months to work with financial institutions.
Get Estate Plans in place by working with an Elder Law Attorney. This includes a variety of legal documents they will discuss with you.
Follow the instructions you are given. For those people that have a Trust, you should receive a document that recommends which accounts you title to the Trust (instead of the account being in your name “Kay Bransford” it would be “The Kay Bransford Trust” and I would be listed as the Trustee). They will also provide information on which beneficiary updates need to be made for all of your asset accounts.
Monitor your mail to make sure the accounts are titled properly. Several years ago, I got a piece of mail from an investment account that was titled to “Kay Bransford.” Three years prior I had provided them with the Trust and for years, the mail was arriving titled to “The Kay Bransford Trust.” When I called to find out what was going on I was told they went through a computer update and somehow, it resulted in my account retitling. I was able to get it immediately addressed.
I hope these steps can help you understand the importance of truly implementing your Trust. Contact your lawyer when you have questions.
If you need some help monitoring and managing your accounts or your bill pay, you can contact a Daily Money Manager. They fill the void of practical actions needed when it comes to making sure you lead the rest of the life you envisioned. Summarized.
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.
Sometimes humans are terribly disappointing. I do not understand those people who are behind all the robo/scam calls. I know I am fortunate to live in the U.S. and had parents that provided a nice, stable life and opportunities to thrive.
Every week I deal with older adults who have fallen prey to a crook. Some of them hooked in over a phone call, while others walk into their homes and overcharged or stole money from their wallets. The most heart-breaking are those clients that have “friends” taking advantage of their good nature, good fortune, or inability to even recognize their “friend” is taking advantage of them.
If you have someone who is having trouble managing, but doesn’t recognize it, be ready to help when they ask for it. Sometimes you have to let someone fail before they will allow you to step up and help them.
Patience. It is one of the hardest skills I continue to work on honing. When it comes to helping out a loved one, it is one that could benefit you both. Suggested.
To learn more, check out this story from Equifax. You do not need to pay for their services to get your credit report. Every year they are required to provide one for free. If you set up an online account, you can usually get an updated version monthly.
While I was caring for my parents, I realized how difficult it was to be a caregiver and get a handle on and manage all of the day-to-day finances. It led me to write my best-selling book MemoryBanc: Your Workbook for Organizing Life and changed my career path. For nearly a decade I have been helping families navigate the financial issues that surround caregiving and have protected my clients against a variety of scams while helping them maintain their dignity.
If you have questions about how we can help you or a loved one, join us for this conversation on June 10th at noon. This is hosted by ProAging which is a network of professionals serving older adults, but will provide some valuable insight into how Daily Money Managers help individuals, and their families.
Meet the Daily Money Managers Join us for the first in our monthly series of discussions with members of the American Association of Daily Money Managers AADMM. A Daily Money Manager (DMM) is a financial professional who provides personal financial services to individuals and families, and who manages personal daily money matters such as bills, budgets, and record keeping and much more.
This month our panel features: Amanda DesBarres of Help Unlimited Kay Bransford of MemoryBanc
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 scammers are winning over and over again. They give attention, value, and even a mission. A recent New York Times OpEd “My Grandmother’s Favorite Scammer” clearly illustrates how much this woman desired to be heard, counted on, and involved. When we step in to help our family, we often forget to honor the human in front of us.
I often talk with adult children who want to know how to protect their loved ones. The most important way to help them is to listen, engage, and be available to them when they want it. Consider why they are continuing to answer the phone and get fooled by generic texts. They want to connect, which for many that stay at home all day, means conversations on the phone. The last year has made the phone the only life-line of human interaction and the scammers made the most of it … and don’t seem to be slowing down.
I have heard several individuals who I have worked with after they were scammed that they didn’t mind giving the “gifts” to the individuals that were giving them attention. One family friend was told by her sister that it was worth 10% of her wealth to have the interesting conversations and engagement she was having with her European “boyfriend.”
While I do recommend you consider spam blocking software and apps for email, the computer, and the home and or mobile phones, I just ask that you consider the emotions behind the interest in talking to a stranger on the phone.
Are there some other ways to help with engagement, purpose, and meaning when your loved ones goal is to live in their home alone? Contemplated.
I would love to hear if and how you have had success – whether it’s a roommate moving in or the use of some technology or apps.
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
While ANYONE can be at risk of identity theft, helping someone with cognitive impairment or a dementia diagnosis is an amplifying factor in considering risk.
I am a huge advocate of helping an individual maintain dignity, meaning and purpose, but want to suggest a few ways to minimize the risks of fraud and identity theft.
1) CREATE A UNIQUE EMAIL PASSCODE. The number of breaches to our online accounts means that if you use repeating passcodes, you need to make sure your email has a unique passcode. Some scams include monitoring your email and sending a message to your Financial Advisor or Mortgage Lender with NEW instructions and can lead to a major financial loss. I was surprised that some fraudsters are putting the work into this one, but after one client had over $40,000 wired out of her IRA to a new bank account, I learned how prevalent the threat of this occurring has become. The next time your financial advisor calls you to confirm you requested the money, be THANKFUL. They are doing this to protect you and your money.
2) DON’T USE THE COMPUTER FOR FINANCIAL ACCOUNT ACCESS. I recommend having the computer used to connect with friends online not have any financial access URLs saved or passcodes stored. Too often, I have had a client respond to a pop-up, or have someone call saying they are “APPLE SUPPORT” and get access to the computer. If you are using it to connect to financial accounts, there is an increased risk of identity theft and fraud.
One of my colleagues walked in to help a client to see someone in the online banking and trying to transfer money out of the account. Thankfully they shut off the computer before any money was taken — but that was too close for comfort. We had a sweep done of the computer and removed the saved links and discussed with him why we did this, and how we could help him access this information in other ways. He is happy he can still get email and access the Zoom calls with his church.
3) SET UP TEXT ALERTS FOR FINANCIAL ACTIVITY. I have done this for my own accounts, and have set this up for clients so I know when money is being spent from the bank and credit card accounts. It’s just a simple way to ensure we get a first alert on any fraudulent activity.
The best offense is a good defense and I hope this give you a few ideas on how best to support a loved one. Suggested.
A reader (thank you Debbie) reminded me how important it is to make a connection with the individuals surrounding your loved one. Thankfully, these days are behind me. However, the issues surrounding helping my parents reshaped my life plans. Nearly a decade ago, I launched my own business to help other families deal with financial confusion and disorganization and have learned who the key players are that you should have on your support team.
Debbie cared for her mom for ten years. Her mom would add her to the bank account, and within days revoked that permission. Most people don’t recognize dementia or notice memory issues when they don’t know you, so the bankers would follow the wishes of their client. Debbie kept a diary of her mom’s behavior and was able to provide that information to her mom’s long term primary care physician along with a letter of concern. This at least allowed the doctor to diagnose and recommend medications.
Debbie spent time meeting with the bank manager, social services, and lawyer so they were all notified of the situation. Sometimes it is all you can do. Similar to my family situation, guardian and conservatorship were recommended but for anyone who has witnessed this, it is often not something you want to pursue. You basically would be declaring your loved one incompetent in a court of law and in a public record. It can be very costly and if the individual hires a lawyer to fight it, the costs in our area are typically in the tens of thousands. There are many cases in which this is a necessity, but often it gets really messy when families end up in court.
When I was the caregiver, the financial advisor for my parent’s disregarded our calls. Most modern financial advisors know that incorporating the adult children into the fold early is a smart move. Most adult children will immediately move the money the moment they can when the advisor presented as more of a roadblock that a resource. I know we did when it was time to help organize my parent’s finances.
There are many others I recommend to help you along the way as illustrated in the diagram. If your loved one won’t let you help, spend your time building a bridge to other resources that may provide the support needed. For a few more posts related to this topic, follow the links below. Shared.