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.
Years ago when I was the adult child watching my parent’s cognitive abilities dim, I ended up reading some things Kate Swaffer posted. She was diagnosed with dementia before her 50th birthday and has been a thoughtful, passionate educator for the years I have been watching her in action. She recently posted Today, I hate Dementia.
In caring for my parents, I read her words to help me better understand what my parent’s might be experiencing. What I thought was a mean rebuke of something I was doing to be helpful, was a personal affront I had initiated without realizing my impact. Dementia is cruel. It steals things from all of us.
I hope you will read her post and check out her book and other posts that may offer you a peak into the lives of those we are living with that might not be able to tell us what and how they feel. Appreciated.
There are many times when a family member calls to share that a loved one was initially diagnosed with “Mild Cognitive Impairment” (MCI) but they are now facing some difficult situations and do not know what to do.
Usually a few years will pass and the behavior, thinking, or habits they are seeing in their loved one have changed and now they wonder “What can we do”?
I will start at the beginning and hope that many families had a discussion early on about what this means and how the individual diagnosed would like you to consider any progression in their condition.
Unfortunately, most individuals don’t recognize the changes but their loved ones do. I find some people easily accept and listen while others dismiss and debate.
There are many Aging Life Care Managers that can provide assistance in navigating these choices. In general, early on is when you want to have a discussion about:
When might it not be safe to continue to drive?
How much care am I expecting my spouse/partner/child to provide?
Could the role of Caregiver create health issues for the person I am counting on to provide it?
While most people want to stay in their home it can be an expensive choice as well as create other complications like socialization with others. Can you afford to stay at home? What kind of socialization (person visits and companionship) would make you happy? When might it no longer be safe to stay at home?
What if I can’t manage my medication any longer? What are some options to consider?
What if I become a victim of identity theft or fraud? Who and how can those around me help?
What is most important to the individual if they progress into moderate and late-stage dementia.
There is much to consider. There is a document on the Alzheimer’s Association called “COGNITIVE IMPAIRMENT CARE PLANNING TOOLKIT” which is written more for professionals, but is a helpful guidebook to navigating medical visits and planning.
It gives you more than you asked for, but is an excellent primer on the conditions, the land of diagnosis codes, as well as tools and questions to help you consider many of these matters.
IF you have already moved past this stage and are now in the land of “what can I do”, my next post will speak to that familiar landscape. Witnessed.
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.
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.
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.