Category: A Day in the Life of Dementia

How can I get Mom to Move?

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

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

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

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

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

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

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

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

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

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

Fending off the Fraudsters

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.

The best way to help is to just be available to your loved one. Listen, watch, be curious. Most people have myriad systems to manage their financial accounts, personal information, and online usernames and passcodes. For an easy way to open the door, you could buy them a workbook to get organized on Amazon for around $20 or direct from the author for less than $15 plus shipping. It is one way you can start the conversation about all of the information that you might need to be able to help a loved one.

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.

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

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

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

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

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

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

Why the Scammers are Winning and What you Can Do to Help

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.

Feel free to punk this scammer who tried to phish me into responding to the offer.

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.

The last year of life is the most expensive

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

The Costs of the CCRC Path:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Managing Email and a Dementia Diagnosis

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.

woman in pink sweater sitting on bed
Anyone can be a victim of email fraud.
Photo by Ivan Samkov on Pexels.com

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.

Navigating the Early Days of Dementia

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.

man busy using his laptop
Photo by Marcus Aurelius on Pexels.com

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.

New Life Care Models

The devastating impact to the lives of those living in community care has made the discussion about finding new and better care models a priority.

For my clients that are still at home and living independently, and those who are in community settings and have been basically sheltering in place, the change in their cognitive and physical health is notable.

Heck, I think we have all felt the impact and worked hard to retool and find outlets to replace connections. However, for some this just isn’t easy to do if you don’t use technology, or you are unable to walk around freely in your community.

I wanted to share two interesting options that have been shared with me lately. I’m hopeful more of these multi-generational models will blossom.

Carehaus (Baltimore, MD) In a Carehaus, disabled and older adults, caregivers and their families live in independent living units clustered around shared spaces. In exchange for their labor, caregivers receive good wages, childcare, and various benefits. An additional team engages residents in shared meals, horticulture, art, fitness, physical therapy, financial literacy courses, and more.

Granny-Pods A granny pod is a modified ‘guest house’ that allows caregivers close proximity to aging loved ones. They are also called ADUs, or accessory dwelling units, and are designed with safety and accessibility top of mind (for example, slip-resistant floors, wide doorways, and rounded countertops). Some versions offer high-tech medical extras.

I have seen a few 3-D printed homes that integrate universal design and technology into the home and am hopeful more of these options will emerge in the coming years.

What I have learned is that I don’t believe a “forever home” is truly a practical option. At least for now, I see moving to a new setting can offer many more benefits to our emotional and physical health. I’m working hard to keep an open-mind. Hopeful.

Parents Resisting Family Help?

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

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

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

They were are really good pair!

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

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

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

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

How to Get LTC Reinstated

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.

LTC Insurance can help pay for years of care services.

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!

If you are the one working to initiate the claim or navigate the claims process, be sure to read the policy. If you need help, there are many daily money managers like me that can help you. To find one near you, visit www.AADMM.com.

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.

Finding a Live-In Arrangement That Works

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.

Here is copy of the agreement the state of Virginia offers to help put an agreement together. You can see if your state offers this resource, on your favorite browser, type in “live in caregiver agreement” and see what may find.

I am happy to get on the phone and tell you more about how we made this work. Use this option to book a time on my schedule.

I’m hopeful that this solution might work for you. Provided.