We have all done this at some point in our lives — and we either realize it mid-sentence or are told by our conversation partner. If this is a common occurrence and the person repeating themselves doesn’t recall having the conversation before, then it is time to bring it up with the primary care doctor.
Any change in behavior by a loved one should start with a visit to their doctor. There are a variety of things that could cause changes (medication, lack of sleep, a urinary tract infection) and not necessarily dementia. However, I do advise you start with the primary care doctor and discuss the changes. The more specific you can be the better so consider starting a journal to help you recall how often this is happening as well as help define exactly what is occurring. My mom dismissed my concerns when I went to the doctor with her, and she focused on my Dad’s forgetfulness. I didn’t have specific details and facts to frame my concerns.
Time and time again I know of many families that recognize something is off, but it is not something a primary care doctor can easily identify. Often, dementia won’t be diagnosed until later in the disease progression and early treatment could help slow the advance of the disease. So be persistent. Ask for a referral for a neuropsychological examination. Even after my Dad was diagnosed, he would score 28 on the mini-mental exam out of 30 — push for more nuanced testing.
Looking back, I now recognize so many issues and signs that alerted us to mom’s dementia, but it was a long difficult road to even get to a diagnosis for a variety of reasons. The biggest one being my mom and dad fought to keep their independence fiercely. I arrived when I was given the opportunity to help them. I just hope that I won’t repeat history if I end up with the same condition. Prayed.
For twenty years, my Mom told me she never wanted to live with her children. They bought into a Continuing Care Retirement Community (CCRC) also referred to as “Life Care” Communities so they would “never be a burden” to their children. For those of you that have seen the first few years of my blog … helping my parents was a very complicated affair. I won’t say it was a burden, but I wish knew then what I learned over the course of her care.
The Costs of the CCRC Path:
Non-refundable deposit to get into the CCRC $500,000 (1999) This was in 1999 when that was how it worked.
Annual “rent” for their Independent Living apartment $ 38,400 This was the average cost from 2000 to 2012 for a total of $499,200.
At the end of 2012, the community required they move from Independent Living into the Assisted Living community. These were their “discounted” rates for their community since they paid the half of million to move in.
Annual cost for Assisted Living (for two) $117,600 (2013) Dad passed away in 2013.
Annual cost for Assisted Living (for one) $ 94,800 (2014) Annual cost for the required personal care assistant for my Mom $ 98,208 Assisted Living was not the right place for my Mom with dementia. The residents didn’t want to eat with someone would couldn’t learn their names. She no longer wanted to eat in the community dining hall. As you may know, there is no kitchen in Assisted Living and my Mom was unable to prepare her own meals.
After my Dad passed away, my mom became agitated and they required we hire a personal care assistant for 12 hours each day. The memory care community in the CCRC was only for end-stage care, so neither the Assisted Living or the Memory Care were the right fit. We made the choice to move her to a Memory Care community outside of their “Life Care” community.
Annual cost of Memory Care community $ 81,600 (2015) Annual cost for the necessary personal care assistant for my Mom $111,600 My Mom was unsteady on her feet after a medication put her in a state of delirium in 2015. She kept falling and ending up in the Emergency Room (ER). We hired someone who could help her use her walker and assist her and keep her out of the ER.
So at the end of this journey, my parents spent over $1.5 million. They saved and invested well so they had the money to pay for their care. But knowing what I know now, we could have used that money better to manage the last fifteen years of their lives.
After watching many clients in communities cut off from family during COVID, several had a marked decline. They didn’t have many people to talk with because they were locked in their rooms and their physical stamina decreased from little movement.
For $1.5 million, I would have preferred to have a home where my parents could have lived with us, but still had the freedom to be independent. When they needed care, we could have arranged to bring it in. Thankfully, our community has many programs to stay engaged and active. We could have used that money to maybe deliver a higher quality of life to their final years. Would it have been better? I will never know.
From 2012 through 2015, I was spending more than 20 hours a week helping them in one form or another. The last three years of my Mom’s life cost over $500,000. Had she been living with us, I could have spent more time being a daughter instead of a family caregiver, bill payer, medical support and care manager. I now know how to bring in the support to help fills these roles and that would have been much less expensive and I believe more joyful for me and my Mom. Imagined.
The reality is that things change and what is important today, may not be important tomorrow. So leave some space for adaptability.
To learn more about my journey and the tool I created to help families manage and coordinate the personal information to be a great advocate, get a copy of MemoryBanc: Your Workbook for Organizing Life
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.
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.
I recall my Dad calling to ask me to come over and help Mom pay the bills. When I got there, she said she didn’t need any help as was just offended. When I turned to my Dad he acted like he had no idea why I had shown up.
It was at least a year later before my Dad was diagnosed with Alzheimer’s and my Mom was diagnosed with Vascular dementia.
I now realize my Dad probably had no recollection that he called me.
There were many instances when my parent’s were very clear that they didn’t need the help of their adult children, they were doing just fine on their own. But they really weren’t. I had helped turned back on utilities that never got paid, cancelled duplicate agreements with contractors, and showed up every time they did call to ask for help. When I would arrive 20 minutes later, they had no memory of the request and then just grew suspicious of me like I was making stuff up.
What I realized later was that my parents were trying very hard together. They wanted to protect and help their spouse and weren’t going to rat the other out to the kids. OK, OK, my mom actually ratted out my Dad, but she was the one failing to get the bills paid and he just forgot where he parked the car.
Nearly 9 years ago I started to share some of my caregiving stories on this blog. As the local family member who was watching her parents fail and behave in new and unusual ways, I was horrified and amused.
Some things were so odd that I couldn’t control my laughter when they happened. Thankfully, my parents would usually join in. We had a great relationship. As the baby of the family, I benefited from my older siblings being teens in teh 70’s and breaking in mom and dad. I was also the only one that stayed around after college. We shared many meals, they were around for two grand-kids, and I often tagged along on my mother’s trips to auctions for her antique’s business.
On this one day, my Dad seemed to finally acknowledge that something was wrong. He had been driving to my home for ten years and we lived a few miles away. Instead of arriving early, he showed up half an hour late and filled with anxiety — two things no one would have associated with my dad.
Driving with cognitive impairment is a risk. Now there is a huge variety to term “cognitive impairment” and in general, any noticeable loss of short-term memory could really put a driver, their passenger and others on the road at risk. Changes to the brain that result in memory loss can change thinking and behavoir.
This is usually one of the first big battles. Approach it softly, identify your concerns plainly, and listen openly to help walk this early road and maybe find a silver lining in how you resolve it. Experienced.
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.
In working with individuals who have Long Term Care (LTC) Insurance, I have one of our many who used it all up. Sadly, I have walked into situations where the individual has passed away before they used half of the benefits.
I am still waiting to figure out why you wouldn’t start your claim as soon as you possibly can. What you should know is that:
Once your claim is approved, you NO LONGER PAY your LTC premiums.
While many state they are for two years, that is how they calculated the full benefits, but they continue to pay as long as your policy still has money left to cover your LTC qualifying expenses.
If it were me, I would rather use up all of the LTC insurance money before I paid for the services needed out of pocket.
Many of the policies have a distinct mention of cognitive impairment which is separate and distinct from qualification by needed help with the Activities of Daily Living (ADLs) to include bathing, walking, toileting, dressing, and eating.
I hope this might spur a few people to look into this and get the benefits flowing as soon as you or a loved one qualify. Hoped.
The number of COVID scams continues to grow. I got this email yesterday and wonder how many people immediately jump to volunteer — we have more time (seemingly) and we all want to help kick COVID to the curb.
What bothers me about these types of messages, besides just being poorly executed (not my email address; the “From” email address that is goobly-gook behind the name of “Clinical Research”, what is it a “Verification” of?) is that I know many people are interested in helping. The fact that a good deed gets punished by a scammer bums me out.
For those of us with loved ones that we know are feeling more isolated, the phone and computer can be a source of entertainment … and danger. I have had several clients fall for pop-ups and they called and gave out login and banking information to the bad people. Thankfully, we could shut down and recover quickly and no money has been lost — but to have it happen so frequently now tells me it’s important to be more vigilant.
For several clients, we have created a “white list” so they get their messages from the people they know, but all the others get either blocked or filtered. When we visit (or when family visits) they can go through the other messages together. Some family members do a daily check-in and filter out the bad messages. A little more vigilance can go a long way. Protected.