Category: Dementia Care Planning

Navigating the Early Days of Dementia – Part II

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.

The key advisors in addition to the doctor and banker who can be invaluable when caring for a loved one.

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.

A Quick Way to Ensure You are Well-Represented What you need to be an effective advocate. Includes a free download.

Strokes, Free Will, and Frustration For All Some basic things you can do if you someone continues to drive when maybe they shouldn’t be due to medical concern.

Dreamwork Makes the Care Team Work I discuss the individuals that are key for keeping someone safe in their home.

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.

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.

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.

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.

Managing Through the COVID Lockdowns

The community where one of my clients has been living happily for over a year, sent me a note about new cases found and the process they were going to take to test everyone. This morning I learn that my client is one of 17 residents who tested positive today and my heart breaks. My colleague was going to visit because we have noticed she has been a little down lately.

No wonder. Many of us have seen the report that isolation is as harmful to us as smoking a pack of cigarettes’ a day. Forbes just shared the grim statistics of community residents across the county. “90 percent said they never left their campus, 60 percent said they never even went outside their building to take a walk, and more than half said they had no access to any activities within their facilities.”

In the beginning, we noticed that the forced lock-down actually benefited “Susan” because she was finally meeting and spending time with the other residents. However, when they went into full lockdown, where they have to stay in their rooms ALL DAY LONG, and eat their meals alone in their rooms, we can hear the sadness in her voice when we call.

This time I am going to start a silly postcard campaign so that she is at least getting a note and knowing that we miss her. We are all calling her too. Her family doesn’t live nearby so phone calls help. However, nothing is worse than being sick alone … AND too sick to even answer the phone.

My hope is that this former teacher will enjoy some silly postcards. Are there other ways to stay connected with someone who doesn’t use a computer, a smart phone, and for now, is too sick to talk on the phone.?

I sure hope that she ends up with a mild case. While she is in her 80s, she has very few other pre-existing conditions besides mild-cognitive impairment.

Please send me a note if you have any other ideas on how best to help those isolated during quarantine, and even worse, all alone as they fight COVID. Asked.

A Quick Way to Ensure You are Well-Represented

When my parents health started to fail, I was the adult child that was local and stepped up to help. While my parents had planned well, what I needed was information on their accounts, the locations of their personal documents, and access to their online accounts to help reset codes and update account information.

While I wrote a book that will walk you through this process, I am happy to give you a summary of what you need to collect and organize so you can do it yourself. Having a summary of this will help your spouse, partner, and loved ones that will step in to help should you need it.

Every adult should have a Durable Power of Attorney. It gives someone the ability to step in for you and pay bills, and manage your financial affairs if you are unable to do this — even temporarily. We did this for my son when he turned 18, and I used it to file his taxes one year when he was traveling.

For those of you caring for someone, you know how important, frustrating, and necessary it is to have this document in place. What many people don’t know is how difficult and time-consuming it can be to have a financial institution recognize the document. Many couples don’t realize until, it is a problem, that being married does not give you instant access to a spouse’s account if you are not named on it.

In hopes of giving you a simple guide to organize this information for yourself, I am releasing this free download.

Get a free copy of this guide at http://www.MemoryBanc.com/POA

Feel free to share it with everyone you love. Offered.