Category: Dementia and Family Dynamics

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.

Guilt: The Hidden Emotion carried by Adult Family Caregivers

For those of us caring for or having cared for a loved one (dementia or major health issues that require you as the family member to step up and advocate), we know that guilt is a constant companion and lingering emotion long past death. What could I have done better, different? Why didn’t I do X, even though Mom made me in clear she wanted Y?

Since I help with the day-to-day finances, home upkeep and am often named as the Power of Attorney and Trustee, I am finding I’m very sensitive to the language used by other professionals on the care team. While I am not involved in managing the home care or medical choices, I am usually copied on the discussions about the medical needs since they usually impact the finances.

I still have crazy dreams every once in a while where I have failed to visit my Mom in her memory care community. It’s almost been five years since she had her heavenly departure, but I guess these are similar to the dreams I used to have where I forgot to show up for my final college exams.

If you serve in a capacity as a:

  • Friendly visitor
  • Care Manager
  • Financial Advisor
  • Personal Care Assistant

Please recognize that the adult family caregiver is already grieving, probably feels the constant companion of guilt for NOT being involved enough, and focus on sending positive reports and using the care team in place to manage those things that need addressing that you can resolve without the family caregiver. Of course you should absolutely speak up if you feel the individual is in danger or could harm someone.

What I believe after living this journey with my parents is that “You don’t know what you don’t know” — which is perfectly OK. However, if you have not ever lived as an adult caregiver, recognize that the person that is living this journey, what you share with them matters and I hope you will just consider that filter when you send them updates on visits with their loved ones. Suggested.

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.

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

Managing Medication and Pill Aversion

There seem to be two kinds of people in this world. One that uses medication and appreciates the benefits, and the other that has a general aversion to taking medication.

I fall in the second category and was happy when the one prescribed medication I was taking (a baby aspirin/day) fell out of favor. Well, I suppose there was the science to it, but when my doctor said to discontinue taking it, I was happy to comply.

I see many people struggle with medications, including those with no cognitive issues. I think it’s too easy to miss a dose and think pill caddies are helpful solutions.

A reader asked if there were any simple books for medication management for someone diagnosed with Alzheimer’s. While I’m not trained in health management, from the brain health training I have done, I do know that starting a new habit is difficult for someone diagnosed with any form of cognitive issue, include all dementias.

The bubble packs are dated and have time stamps that are easy reminders to follow and track.

There are two simple options to help manage medication as well as see if and when someone has missed a dose. The first is the pill caddy and the second is bubble packs. For anyone with more complicated medication scheduling or a lot of pills, the doses are packed with dates and times and come on a roll or in a blister pack.

I always consider options that give an individual more control over their life. I think those two options are helpful in managing medication and provide simple cues on when to take and if a dose was missed.

For those that are averse to medication, but diagnosed with something that medication can prevent or abate, I hope family and loved ones will speak up and help the individual understand the choices they are making and the potential risk to their health. One of the entitlements of being American is that we are given the opportunity to make really bad choices for ourselves. However, when it comes to our health, sometimes our spouses, siblings, and friends need to recognize that someone diagnosed with a cognitive issue might be unable to make a reasonable choice. The act of not taking that medication might result in a need for a higher level of care or other health complication that requires medical intervention or nursing care.

I hope if you have someone in your life in this second category, you will at least share your concern and give them the opportunity to explain their choice. Once diagnosed with any form of dementia, I see many deal with loss after loss. They have lost friends who fell away, the ability to perform at a job they loved, and even just manage the simple act of cooking a meal. Is the refusal to take the medication one place that gives them a sense of control? Wondered.

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.

Gaining Mom’s trust.

Many of us have been seeing a parent struggle with their memory and ability to manage their own affairs long before there is ever a diagnosis.

It took time for my Mom to adapt to having me pay the bills and help her. She felt that she was managing just fine. My Dad recognized she was having trouble and asked me to help. When I started I had trouble learning how to assist without offending my Mom. My Mom never recognized that the stroke she had impacted her memory or her ability to manage. She would tell me her “brain is bad today” but that wasn’t impacting her ability to manage her life (in her own mind). When I reminded her that she did have a stroke, she would accuse me of making it up.

I slowly worked to gain her trust by doing things in tandem that she asked for help on. I found the less I pushed, the more opportunity to help I was given.

When it came to the mail and the bills, I would take the piles of mail that were lying around and triage issues as I uncovered them. Thankfully, my parents added me to the bank account so I could reverse engineer many of their household finances. I visited with a large purse that allowed me to easily drop in piles that were dispersed around their home.

One day I walked in to visit, and my Mom had created a mail pile for me that included a bill and a check. She even put a label on the pile for me. Earned.

Just because I’m having trouble with my short-term memory doesn’t make it OK to exclude me from discussions about me

I’m writing this post recognizing that I’m really kinda angry. I know I can get a little “righteous” but I’m seeing families work around their loved ones instead of with them.

I know often, it’s easier to to just do things for someone. Please imagine how you would feel if you suddenly found yourself on the outside when choices about your health and finances were made for you?

Maybe you had a discussion about the topic, but for someone with short-term memory loss they won’t remember that, so are there other ways to help include and remind them of the discussion and decisions made? A notebook, email or texts?

I’m working with a new client and she told me she went to the bank to get a copy of her last statement and her daughter and POA had changed her statements to paperless. She knows she can’t recall the amount of money in the bank and is having trouble managing the finances, but I could only imagine how awful it would make me feel if my loved ones were doing this around me. To be fair, they may have had the discussion and she didn’t remember. However, she was expressing how frustrating it was to be left out. She can still make good decisions and had managed to care for all these things for more than five decades. She wants her daughter to help her do it, not take it away from her and manage it for her. Short-term memory loss on it’s own doesn’t mean you can’t make good decisions or understand their consequences.

Don’t discount your loved ones ability. It is their life and if you love and respect them, assisting them when they need help navigating difficult choices is how you can show it.

I know I didn’t do this well when I started to help my parents. However, now that I have worked with so many families and individuals with varying stages of mild cognitive impairment and diagnosed dementia’s, I see a how devastating it can be to suddenly lose so much for the individual with a memory issue.

For those individuals just starting out, I always talk about us working in tandem. I will help with them organize and schedule, and they will review the bills and sign the checks. Usually, by the end of our first meeting they are breathing a sigh of relief. They see they are still involved and have control, and now have help to manage the components of paying their bills that was challenging.

You can apply this to the scheduling of medical appointments and follow ups as well.

Walk alongside, support and give your loved ones the opportunity to be involved. You might be surprised how much better things can progress when you do it together instead of “for them”. Advocated.