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.
Imagine if your friends and family started to treat you like you needed help with your day-to-day life. All of sudden, your spouse is taking over and trying to get you to visit the doctor, or your brother is suggesting that you stop driving. You have been living your life and all of sudden it feels like people you love are picking apart your lifestyle and over-stepping their boundaries into your affairs.
You would be angry, appalled, frustrated and probably kick back.
Consider that if you are the family that is stepping in to help a loved one who doesn’t recognize that their behavior or thinking has changed. I frequently write about Anosognosia, which is the inability of someone who has a condition to recognize its existence. More complicating is if no doctor has even been seen to help diagnose the issue — particularly early on. The family and close network of friends are always the first to notice the changes.
If you do have a loved one that is having trouble managing their day-to-day affairs, assume they can’t recognize it. I always encourage families to get to the Primary Care Doctor and get a referral to a neurologist. There can be a host of reversible issues causing memory loss, and the earlier you see a doctor the better. The next steps are usually and MRI and a neuro-psychological evaluation.
However, you are already noticing a change in your loved one and are concerned. This is the toughest time to navigate. I feel like it’s human nature for the person to almost over manage their life and if there are truly memory issues then you often see a host of double paid bills or even what seem to be knee-jerk moves to manage their lives outwardly.
One client who was complaining of a tooth issue, scheduled and had her tooth removed and major bone graphing done. She was supposed to pre-medicate with antibiotics, which we know didn’t happen. Then, after the procedure, was given a prescription for a week of antibiotics and a daily oral rinse. Thankfully, a timely visit uncovered the hand-written prescription that could be fulfilled and now we are working to help ensure she completes the course of antibiotics.
I have been the one who stepped in. My parents would agree to something, a small change, and then undo any progress made within days. At first I was angry. Then I recognized that my parent’s were not doing it to minimize me or my help, but were doing what they believed was best for them. In most cases, I don’t believe they remembered the change made or why.
I see families and loved ones who feel thwarted and are upset. I get it. However, I just ask that you recognize that they are working very hard to manage on their own as they have for decades. I can now only imagine how frustrated they are to feel so challenged to do things they have always done for themselves and how it be hard to do. Considered.
“Both positive and negative emotions lingered for up to 20 minutes in both healthy adults and in participants with Alzheimer’s disease, whether they remembered listening to music or not, the team reported in November in the Journal of Alzheimer’s Disease.”
Caring for a loved one can be challenging as well as deeply rewarding. I am hoping this information provides you with another tool to serve you and your loved ones in the years ahead. Discovered.
The request started simple enough … “Kay, I’m overwhelmed at work, and trying to navigate my mother’s long-term care insurance claims is exhausting. Can you help?”
I hear this a lot. The promise that LTC Insurance will help cover medical expenses is very true and real. The act of starting claims, navigating billing, understanding denials, and advocating for what you are owed is often overwhelming for caregivers and incredibly convoluted.
To be fair, I do have several clients where the LTC plans work well, and there are only minor matters to chase. I even have a few that have reaped hundreds of thousands to pay for their care. Most of these plans were purchased decades ago and most were Federal Employees.
In this most recent case, the adult family caregiver was totally frustrated. The company had told them that they didn’t need to pay the annual fee any longer because they activated the claim and was receiving services for home care after being diagnosed with dementia. Most policies stop billing you for the insurance policy once you activate the claim. Then, a year later, they receive a bill for over $7,000 because the LTC Insurance company mistakenly waived the annual fee. Then they stopped paying the claims and sent a policy cancellation notice within a month of the notice receipt.
All of this happened before I got engaged.
When I called to ask about reinstatement, the LTC Insurance company said they could not reinstate the benefits because it had been 60-days since the cancellation notice was sent.
When I took the assignment, I read the policy and in it found a “Reinstatement Clause” that said if the individual was diagnosed with a cognitive issue they had up to 9 months to reinstate the policy. I mentioned this and was told they would “check with the manager” only to have them return to say there was no option around the 60-day period. I directed the agent to open the policy and read this clause — and all of a sudden I was given the steps we needed to take to have them review the request.
One week later, my client is told the policy is reinstated and now has hundreds of thousands of dollars available to help pay for mom’s care. Pleased!
Some key things for claims processing may include:
Medical forms signed by their doctor listing a diagnosis and care needs. These typically have to be done every 4 to 6 months.
Invoices, caregiver notes, and a license from the Home Care Agency. If you use a family caregiver there are other hurdles to traverse and often they reimburse non-agency caregivers for fewer hours. Typically you will want to do an “Assignment of Benefits” to allow the Home Care Agency to submit the claims and get paid directly. You will however be responsible for any fees not covered and should understand this WHEN you are starting services so you are not surprised with a huge invoice.
A policy in good standing. It must be paid up to date. Most plans waive annual fees once you start your LTC claim.
Most of the individuals I work with that are still in their home want to stay there. The ongoing COVID issues have made many individuals and their families second guess community care. Finding a good solution that works is harder than it might seem, but it is worth the effort.
For solo individuals with a cognitive issue the reality is that staying in their home can be more expensive than community options. It also creates a different form of stress on the family and care team as the risks of living alone create opportunities for major catastrophes. I’ve arrived and had to call 911, battled predatory vendors, and cleaned up identity theft. Had someone been in the home, the impact of these could have been minimized or even avoided.
An ideal solution seems to be having someone live in the home. Most of my clients have unused bedrooms/bath(s) that served the family when they were raising kids and enjoying early retirement. Early on, when intermittent help is needed, most do not like the assortment of personal care assistants that have come into their home to help them. However, if you don’t need more permanent home care, you often face a shifting stream of inexperienced caregivers. The experienced caregivers usually hold out and get assigned to regular and more permanent schedules. This makes it even harder to integrate care when it is needed.
I started wondering how to use the empty bedrooms effectively in the homes of client’s to benefit them. Could we find someone that could bring energy and socialization into the home, and create an intergenerational relationship that benefits both? Is there someone in your extended friends and family that could fill this role?
Most states have rules for domestic employees, which this agreement would fall under. Virginia laws encourage these arrangements. Key components of an agreement should include:
Creating key tasks and time needed to fulfill these duties
Setting an hourly rate for duties
Creating time off and plans for when the individual is not staying in the home
Finding a lawyer to put an agreement in place (most elder law attorneys can do this and you can find them here NAELA.org)
Rounding our insurance to cover your risks and employment law
We just implemented this solution at one of my clients and it has already been a huge relief to know that there is someone in the home on a daily basis. The ongoing engagement is also going to benefit the homeowner. The best part is that we will also have minimized the costs of care.
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.