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
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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.

Music and Emotions

Music evokes positive and negative emotions that last long after the song has played.

Most of us have heard that music can provide positive engagement and responses from individuals living with dementia. However, a report from The Washington Post today shared that it can elicit both positive and negative emotions that last even after the music is no longer playing.

“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.

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.

When Dad Got Lost Driving

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.

For someone who is already losing, being asked and expected to give up something by choice, that may not seem like a risk, is a much bigger deal than we often consider. Here are a few tips from Mayo Clinic on how to bring up the subject, include them in the discussions, and incorporate their doctor to understand how their cognitive issues could impact driving.

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.

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.

Successful Transitions and Dementia

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.

Start the LTC Claim ASAP

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.

Initiate your claim as soon as you qualify.

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 Link between Dementia and Mismanaged Finances

Eureka! What I recognized anecdotally for years is now published research that concluded financial symptoms of cognitive issues are surfacing up to six years before a formal clinical diagnosis.

SIX YEARS.

You are noticing changes in your own thinking, or you are seeing changes in a loved one that is concerning, but the primary care doctor just reassures you that you are “fine.” I witnessed this all play out with my parents for years. By the time we finally had a formal diagnosis, both of my parents were diagnosed with MODERATE forms of dementia. Dad they believed to be Alzheimer’s and my mother had primarily Vascular Dementia.

If you are having more difficulty with bill pay and managing the checkbook balance, it is time to share that with a loved one and your primary care physician.

Many financial mistakes were made for many years preceding this, including the decision to stop paying for long-term care insurance. Most of my Dad’s retirement accounts were unattended and forgotten.

For more insight into this visit this Washington Post Story.

After living the journey with my parents, and now supporting individuals and families as a daily money manager, I have seen and cleaned up many of these issues. It is rewarding, but sometimes takes my breath away, when I calculate how much money was wasted or lost over the years that could have been used to help pay for their care.

The research primary looked at payment delinquency. If someone is missing bill payments, when they were prompt payers before, this change could be a sign of a cognitive issue.

If you are experiencing this, or are having trouble making your checkbook balance when that has been a lifelong habit, it’s time to share this with a loved one as well as your primary care doctor.

The earlier you identify an issue, the more options and control you can have over it’s future course. Believed.

Just say NO to Memory Supplements

While we all hope there is a quick fix to memory or cognitive issues, Consumer Reports confirmed that “By avoiding memory supplements, consumers can both save money and avoid unnecessary health risks.” You can learn more in this recent Washington Post story.

If you are noticing issues, the place to start is with your Primary Care Doctor. Are you taking drugs that might be impacting your memory and recall? Are there other factors that could be contributing to what you are noticing?

If you see your Primary Care Doctor, and are not satisfied with the recommendation or response, get a second opinion. I watched as my parent’s had issues that went unaddressed for years. It was frustrating to know something was wrong, but have their doctor’s just dismiss concerns.

Yes, it could have made a difference. If diagnosed early, individuals can be involved in planning for their future instead of us having to make our best guess on choices that had to be made for them. It was during the time we knew something was wrong that they also decided to stop paying for the long-term care insurance they been paying for nearly two decades. They have since required policy holders to designate a reporting contact so this doesn’t happen to others.

While my parents thought they had thoroughly planned everything, plans need to change when health and key members of your plans are unable to fulfill their obligations. So often spouses assume their spouse will be able to speak for them. In our case, both parents failed simultaneously. Other families report the spouse is in denial and sadly the result is the same.

I encourage you to be diligent in helping find a provider who can help you if you are noticing changes in your memory, or for a loved one if you are seeing changes in thinking and behavior.

My brother in law sent me a link to a website with resources by Biogen called CatchItEarly. They share while Alzheimer’s disease is usually diagnosed in people 65 and older, it starts earlier with subtle neurological changes occurring years or even decades before symptoms appear.  Many people are experiencing early, often unrecognized, signs of mild cognitive impairment and this site offers educational resources about the signs and resources for several drugs in clinical trials.

We still don’t have a cure, but hope the information provided is helpful to you and your family. Recommended.