Category: My Dementia Caregiver Story

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.

Yes, And …

It took me a while to adapt to how best work with my parents and support them through Vascular Dementia (Mom) and Alzheimer’s (Dad).

My Dad got quieter, and my Mom grew suspicious.

I participated in a program recently and our trainer discussed how using the simple sentence starter of “Yes, and …” can help validate the person you are speaking with and help create a collaborative solution to what that person just told you. It was a general business training … not one for caregiving, but I immediately saw the value in how it might help me work better with my clients and loved ones.

I’ve already used it with a client diagnosed with dementia and it has been a helpful tool to manage through some conversations that could create fear, suspicion, or worry.

As an example, here is the conversation I had with a client who has a broken front door that we are in the midst of getting repaired. While it is still minimally functional, we want to keep it closed, locked and use it as little as possible. It is possible that the handle breaks and we won’t be able to keep the door closed … or lock it. The homeowner is ignoring the note that is posted on the door and using it to let in cats and visitors.

When I mentioned the next step for the repair, he commented that “The door has always been this way. It’s alright if I keep using it.” So I responded “Yes, it has been tricky to use for several years, and the last time we got it fixed, the locksmith said if it fails again, we will need to get replacement parts. Until they arrive, we need to keep it locked and use it as little as possible. Can you help me make sure that happens?” He answered “Yes” in response and we talked through how to best do that (update signs on the door and a note to the next few days of visitors). I let him know I would help communicate the door issue to the rest of his care team visitors.

Together, we came up with a solution on how best to move forward that we both believed would work. Solved.

Strokes, Free Will, and Frustration For All

I am working for a gentleman who had a stroke. He is challenging every tool I have as well as frustrating his family who is very concerned for his safety and fiscal well-being. It’s hard to help someone that can’t recognize they need the help. While he saves up the mail and is happy to have us manage his bills and medical claims, he is taking cash out of his ATM regularly and has no recollection of where his cash went.

He left the rehab facility after his stroke and returned home where all daily living rules have changed. His habit of eating out could no longer be met. The doctor told him he should not drive, yet he is driving all over. His friend is bringing in meals for the two of them and now he is spending way beyond his means but has no awareness of money management.

I walked into this account while he was in rehab to find he was already $70,000 in debt and no longer had any credit on either of his cards.

The family members are beyond frustrated. I fully understand. You try to help and then your loved ones undo all the help you layered in not recognizing or appreciated the help. Then they usually get mad at you for butting into their lives.

A caregiver is coming in daily to help, but “Mike” keeps getting in his car and driving around. He doesn’t understand the need for social/physical distancing. He also doesn’t believe that he needs to stop driving. The doctor told him he had to go to the DMV to get assessed and put in a request to suspend his license. He still has a license with a valid date in his wallet and is continuing to drive. That is the biggest challenge – what are some options to stop the unlicensed driving?

When my parents were driving on suspended licenses, I quickly ensured that we first followed the need that caused the driving. Do they need groceries? Do they need to get to a medical appointment and aren’t used to calling cabs?

Once we knew those basic needs were met and this was more about control and freedom than need:

  1. I made sure they had umbrella insurance. If they were in an accident, my guess is that their auto insurance would not cover them since they were driving on suspended licenses.
  2. I calmly conveyed the possible consequences that they could harm themselves or others (they poo-pooed this idea); that their insurance didn’t cover uninsured drivers and an accident could consume their savings (they pulled out a valid license … they had torn up the notes from DMV suspending their licenses and requiring they turn in the driver’s licenses); that they could be taken to jail.
  3. We unplugged the starter (a neighbor helped to reconnect it after they told them what their horrible children were doing to them).
  4. My brothers came into town to help once things got REALLY bad and hid their cars. This is the one that finally worked.

Some other suggestions from other care managers include:

  • Offer to schedule defensive driving lessons. There are specialists that work with individuals who have lost their license and help coach positive skills behind the wheel.
  • Call the local police and see if they will visit the driver and offer a friendly warning. One family that did this put a boot on the car following the visit from the police.

The balance of free will and safety with love and family dynamics can make all of this so frustrating. I hope some of those suggested might help you. Experienced.

What is the Right Deci$ion for Mom and Dad’s Care?

For those podcast fans, please check out Rodger That a weekly podcast focused on the caregiver. Here, skilled caregivers, Bobbi and Mike Carducci offer their personal and practical insights on caring for a loved one with dementia, as well as tips to help caregivers prioritize their own emotional and mental well-being.

Bobbi & Mike interviewed me on how caregiving can be emotionally & physically challenging, but also a rewarding, selfless act. However, it shouldn’t come at the expense of your financial health & well-being.

We discussed a few things I learned as the adult family caregiver for two parents for 5 years, as well as have used to help dozens of families as a Daily Money Manager in the metro-DC area. #Honored.

Savoring Your Time as an Adult Child

I had a conversation today with a woman who is a Certified Caregiving Consultant named Bobbi Carducci. She and her husband Mike cared for Rodger Carducci (Mike’s father) for 7 years. Bobbi and Mike host thought leaders on their weekly podcast who share invaluable insights and helpful tips on the challenges caregivers face.

It’s easy to look back on your time as a caregiver and imagine all the places you could have managed differently. I let that baggage go in the middle of my own caregiving journey because I wanted to keep moving forward. The second-guessing of my choices started to paralyze me.

Today, I can freely admit the one thing I wish I had done, and considered, was how to better be the daughter. I spent countless hours of my time in my parent’s community chasing down medical team members, making calls about insurance, banking or tax matters.

I wish I would have used that time to just hang out with my parent’s.

Thankfully, my parent’s had planned well and had the resources for me to hire these individuals. Maybe the additional interaction with others would have also provided them with more engagement. I will never know, and can’t change the past for myself, but I can share with you now how I look back on my time as the primary family caregiver.

You don’t know what you don’t know. Trying to figure it out is exhausting. You can start by listening to a few episodes of Bobbi and Mike’s Podcast Rodger That.

I frequently and adamantly recommend you schedule a call* with a local Aging Life Care Manager. In minutes they can help you navigate the maze of medical options and choices for your loved ones. Lastly, if you need help figuring out how your loved ones finances are structured, or if you have concerns about fraud or abuse, contact* a Daily Money Manager. Encouraged.

* Please use the tools on the sites to find these professionals to INTERVIEW them and make sure they are a good fit for you and your loved one. Some people like high-energy while others find a calm demeanor a better fit. The best place to start is to ask your Estate Lawyer, Financial Advisor, and even your Accountant. They will most likely have other clients who have used these resources.

Dealing with Dementia in the Family

I was interviewed about how to deal with dementia in the family and how to prepare for the worst on Profit Boss® Radio with Hilary Hendershott. What I failed to mention was that helping your loved one maintain purpose and meaning maybe the most important consideration.

It was posted on the anniversary of my parent’s marriage. I was the primary adult family caregiver to my two parent’s who were nearly simultaneously diagnosed with vascular dementia (mom) and Alzheimer’s (dad).

There are many things to know and consider if you have a parent with dementia. Recent studies continue to promote that:

  1. Be physically active and enjoy regular physical activity. Cardio helps both mind and body.
  2. Consider following a mediterranean diet and eat healthily.
  3. Don’t smoke.
  4. Drink less alcohol.

I believe the MOST IMPORTANT element is to consider your brain a muscle you need to exercise. Meaning and purpose and working toward a task and goals is a great way to exercise your mind.

You can hear the interview and some simple tips on how to navigate this phase of life if you are facing this situation here. Shared.

Helping Celebrate the Important Life Dates

My parent’s got married 67 years ago today. When I was the adult family caregiver, I worked to find unique and fun ways to celebrate with my parent’s when they could no longer plan or manage these life events.

I went back to read my post from 7 years ago, I openly admitted that slight effort felt overwhelming to me at the time. What I recognize now is that I didn’t have to manage everything. I could have asked a sibling to help, but none of them were local which brings some extra hurdles to both financial and medical task management. (I recognize I’m still making excuses for not giving up CONTROL ; > )

Celebrating 60 Years of Marriage

What I learned on the journey was that there are resources that I could have hired to help manage the medical needs of my parents (Aging Life Care Managers), and handle the day-to-day finances (Daily Money Managers).

What I regret now that both of my parent’s are gone was that I didn’t focus on being the daughter and find the joy in planning and celebrating these events with my parents. I got mired in the management and coordination of their care and finances. If I could do it again, I would manage things differently.

On their 60th anniversary, I did enjoy a nice visit. At this point they were in a two room apartment in Assisted Living. We had all dreaded moving our parents from their 3-bedroom apartment in Independent Living just a few months prior, but the community said we either moved them into Assisted Living or they would be moving them out of the community.

My parent’s were so happy with their new, smaller apartment. Neither myself or any of my siblings would have believed this to be true until we witnessed it.

I noted on this day we talked about how few couples make it to their 60th wedding anniversary. My Mom shared how lucky she felt they made it this far and was with their current life. At this point, both of my parents were living with dementia that was progressed enough that they could no longer manage their daily activities without assistance and cueing.

I’m honored I was able to celebrate this day with my parent’s. I hope you are able to find the joy when they are still on this earth here with you. Reflected.

The value of multigenerational family living $$$

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 we could have done it way better had we not tried to directly follow my Mom’s wishes.

I’m going to first share the cost of their care using the CCRC.

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 my Mom would couldn’t learn their names and my Mom stopped going to the dining room for meals. As you may know, there is no kitchen in Assisted Living and my Mom was unable to prepare her own meals. She became very agitated and so they required we hire a personal care assistant for 12 hours. The memory care community in the CCRC was only for end-stage individuals with dementia 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. So much for the HALF A MILLION they paid to move into this 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.

As I sit here today with many of my clients in communities cut off from family and at a higher risk of getting covid, I realize I need to start having a discussion with my children. When we or one of us needs help, I hope my children will be able to make the best decision for us at the time they need to make it. No preset conditions because our world and how we will care for older adults is also changing.

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 gobs of ways to stay engaged and active and we could have used that money to pay for the personal care assistants to help them lead their lives when they needed it.

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.

This is the first time I sat down to add it all up. What I do know is that the current care solutions, whether in their own home or in a community, are not ideal for most of my clients right now. They are all very isolated and we don’t see this ending any time soon.

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

Might it be time for us to move back to multigenerational homes and return to a personal model of caring for our loved ones? Advocated.

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

Help with Healthcare is a Great Place to Start

Staying at home has given me a lot of time for Spring Cleaning. I finally went into the last box of my parent’s papers this weekend and found this note from my Mom.

When my parent’s were still coming over for dinners on Friday and we recognized something was amiss, but were unsure what, my Mom asked if I would join her for the annual physical. She had mentioned that they were having trouble keeping up with the medicines and she was worried about my Dad … would I join? This was the note she gave me summarizing all of their medications. I attended and sat quietly and watched as concerns were raised and then mostly dismissed.

Within a year, my mom had a minor stroke and she readily accepted my rides to the doctor. However, this was the beginning of the trouble in some regards. My Mom was in disbelief that she had a stroke, and started to challenge that I was making it up. She began to debate me on the way to the appointments when I would simply report that we were going to see the neurologist. When she asked “why” and I reported it was because of her stroke, she would guffaw in disbelief. At the appointment, she argued with the neurologist. Good times. ; <

I wish I had know about Anosognosia. From the Stroke Connection: “Anosognosia (pronounced an-a-sog-NO-sia) refers to a person’s lack of awareness of their own motor, visual or cognitive deficits. It can happen in people with stroke, traumatic brain injury, multiple sclerosis, Parkinson’s disease, Huntington’s disease and Alzheimer’s disease.”

Looking back, I realize that even just stating that she has a stroke created an emotional response in my Mom that left her feeling like I did not have her best interests. She became very protective of her information and in return, insisted that she could manage her own affairs.

I learned over time that my parent’s responded with emotion to information or events. Any information citing they were unable to manage their own health and welfare pushed them into a defensive mode. If I arrived for a visit stressed, they would absorb my anxiety and we would have a terrible visit.

During this time my siblings and I watched as:

  • Their licenses were revoked and they continued to drive their cars;
  • They failed to pay their bills regularly and ran into issues with water and electricity;
  • Ultimately, their retirement community threatened to kick them out if they would not move from independent into the assisted living community.

I was ready in the wings when it was time to act, but it was more than two years before I was allowed back in to help. When I did re-enter I had learned a lot about how best to support and respond to my parent’s needs.

The current state of affairs may be a bridge that opens to invite you in to help. While many families are isolating themselves from their loved ones to protect them, others are including them in the shelter in place orders.

May you and your family find peace, joy, and common ground on which to move forward. Wished.

Will the bank accept your Power of Attorney?

As the adult family caregiver named as power of attorney, I had an incredibly difficult time getting my Mom’s banks to recognize her power of attorney so I could officially support her. It was less than 2 years old, I provided the original, but since my Mom was alive, they wanted her to come with me to the bank and to sign their power of attorney documentation.

My Mom was so unsteady on her feet she needed a wheel chair. It was difficult and uncomfortable for her to go out. She never wanted to be in a wheel chair and half our journey’s out were battles over getting her to sit down. She was also incredibly frail and the task of just getting into the car would wear her out.

Wasn’t that the point of the Power of Attorney (POA)? I was very frustrated when the banks just failed to recognize my POA. In Virginia I could have pursued a legal suit … but I was already busy enough as my Mom’s family caregiver.

I am not alone as The New York Times story “Finding Out Your Power of Attorney is Worthless” confirms. Sadly, it is not just an issue of the Power of Attorney, but family members are still reporting difficulty getting banks to release funds after death. Here is a recent NBC News story about how difficult it was for Maggie Mulqueen when working with Citibank.

For years, I just used the online banking access to manage my parent’s finances. When I ran into issues, I would either have my Mom sign checks to move the money or just shut down the accounts. When USAA wouldn’t recognize the POA, I didn’t pay to renew my parent’s insurance and moved the account to a new insurance provider. There are some ways to end-around the roadblocks, but it seems ridiculous to have to out- maneuver the bank.

This past week, I walked into two banks to establish myself as Power of Attorney for a client. I need to get her past banking history since no taxes were filed since 2017, and need to be able to sign checks on the days when she is too weak to help. Remarkably, both banks (SunTrust and Wells Fargo) were extremely accommodating. I even had a note from the doctor stating she was unable to manage her own affairs, but did not have to provide it.

I learned two things:

  • You can’t have an active credit freeze. As Power of Attorney, they will create a new bank profile (requires a credit check) for you that is attached to the individuals bank account(s).
  • They view adult children differently than professionals that act as Powers of Attorney.

My logical brain understands this, but my journey as the adult child who was trying to help my parents DETESTS this varied treatment.

Maybe things are changing? Adult family caregivers … what are you finding? Curious.

THANKS to Ashley — Good food for thought and was a tactic I used when I was caring for my parents. Her lawyer suggested she not disclose the information to the bank. Thankfully, her parents added her to their bank account. After I hit a few roadblocks, I just set up online access to most of my parents accounts and did as much as I could digitally and in the spirit of their Power of Attorney. When I hit roadblocks and went to the bank with my POA was when I learned how difficult it was to get them to honor it.

Simple Ways to Protect Finances.

While likely under-reported, the National Council on Aging estimates elder financial abuse and fraud costs to older Americans range from $2.9 billion to $36.5 billion annually. Older American’s that have been abused have a 300% higher risk of death when compared to those who have not been mistreated.

After caring for two parents with dementia, I remind myself how much the checkbook meant to my mother. She had always managed the household finances and pointing out to her that she was failing to manage the finances was something that needed to be left unsaid. If you are concerned, first work with the person to support their efforts before suggesting they hand over the checkbook and finances. Some easy ways to help may be:

  • Create a monthly schedule of bills and maintenance due dates
  • Log in to the banking websites and credit card sites to monitor spending and confirm no fraudulent or suspicious transactions and fill in the bill pay gaps
  • Set up a checking account they can use that has a minimal balance to keep in their purse or wallet for writing checks and use a different account for bill pay needs

My mother kept losing her purse that included her checkbook. So dealing with that was very time consuming. My Dad recognized this and took me to the bank to set up a new checking account for my Mom. We funded it as she needed money but no longer had to worry that the account that received their retirement funds and paid for the mortgage was at risk. We automated many of the home bills (mortgage, utilities) and I would monitor the spending behind the scenes.

Utimately, I wanted to help but not be invasive or diminish my parent’s ability to manage their finances.

Some other tools to consider include:

  • Get a tile and insert it into the wallet so you can easily find it if it get’s misplaced. You can use their online portal to track it’s location.  
  • Set up a TrueLink card. It is basically a pre-funded credit card where you can set up limits on how much can be charged as well as products and services that it won’t fund. There is a fee for it, but the small expense is worth the money it will most likely save in potential losses.

If you have a variety of personal care assistants coming into the home, or your loved one is in a community, I hope you will consider some of these options.

I have worked with families both at home and living in communities that have been a victim of caregiver exploitation. One got my client to write her a small check, one purchased some face cream for my client and asked her for repayment of $85, and another apparently kept asking for gas money. Most agencies and communities require their caregivers agree to never accept money or gifts from clients. Should a client give them money, it needs to be reported to the community or agency. In one month, I had to report three caregivers for violating this condition of employment. Sadly, I know they will just turn up at another agency.

Managing the finances for many may be one of the few remaining freedoms that offer a sense of control. Some are giving up car keys, volunteer activities they love, hobbies they can no longer maintain and the checkbook can offer an empowered sense of self.

If you have been diagnosed, or are a family member and unable to do this for your loved one, you can contact a Daily Money Manager who can fill this roll.

With billions at risk, take some time to ensure someone is minding the finances. I hope these options help you and your loved ones. Suggested.