The last year of life is the most expensive

For twenty years, my Mom told me she never wanted to live with her children. They bought into a Continuing Care Retirement Community (CCRC) also referred to as “Life Care” Communities so they would “never be a burden” to their children. For those of you that have seen the first few years of my blog … helping my parents was a very complicated affair. I won’t say it was a burden, but I wish knew then what I learned over the course of her care.

The Costs of the CCRC Path:

Non-refundable deposit to get into the CCRC $500,000 (1999)
This was in 1999 when that was how it worked.

Annual “rent” for their Independent Living apartment $ 38,400
This was the average cost from 2000 to 2012 for a total of $499,200.

At the end of 2012, the community required they move from Independent Living into the Assisted Living community. These were their “discounted” rates for their community since they paid the half of million to move in.

Annual cost for Assisted Living (for two) $117,600 (2013)
Dad passed away in 2013.

Annual cost for Assisted Living (for one) $ 94,800 (2014)
Annual cost for the required personal care
assistant for my Mom $ 98,208

Assisted Living was not the right place for my Mom with dementia. The residents didn’t want to eat with someone would couldn’t learn their names. She no longer wanted to eat in the community dining hall. As you may know, there is no kitchen in Assisted Living and my Mom was unable to prepare her own meals.

After my Dad passed away, my mom became agitated and they required we hire a personal care assistant for 12 hours each day. The memory care community in the CCRC was only for end-stage care, so neither the Assisted Living or the Memory Care were the right fit. We made the choice to move her to a Memory Care community outside of their “Life Care” community.

Annual cost of Memory Care community $ 81,600 (2015)
Annual cost for the necessary personal care
assistant for my Mom $111,600

My Mom was unsteady on her feet after a medication put her in a state of delirium in 2015. She kept falling and ending up in the Emergency Room (ER). We hired someone who could help her use her walker and assist her and keep her out of the ER.

Me with my Mom on our way to the Grocery Store.

So at the end of this journey, my parents spent over $1.5 million. They saved and invested well so they had the money to pay for their care. But knowing what I know now, we could have used that money better to manage the last fifteen years of their lives.

After watching many clients in communities cut off from family during COVID, several had a marked decline. They didn’t have many people to talk with because they were locked in their rooms and their physical stamina decreased from little movement.

For $1.5 million, I would have preferred to have a home where my parents could have lived with us, but still had the freedom to be independent. When they needed care, we could have arranged to bring it in. Thankfully, our community has many programs to stay engaged and active. We could have used that money to maybe deliver a higher quality of life to their final years. Would it have been better? I will never know.

From 2012 through 2015, I was spending more than 20 hours a week helping them in one form or another. The last three years of my Mom’s life cost over $500,000. Had she been living with us, I could have spent more time being a daughter instead of a family caregiver, bill payer, medical support and care manager. I now know how to bring in the support to help fills these roles and that would have been much less expensive and I believe more joyful for me and my Mom. Imagined.

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

To learn more about my journey and the tool I created to help families manage and coordinate the personal information to be a great advocate, get a copy of MemoryBanc: Your Workbook for Organizing Life

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.

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.

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.

Two things you can do today if no power of attorney is in place.

Please know that I am not a lawyer, but was a caregiver to my parents for over five years and offer this advice as a practical end-around to frustrations I faced trying to use the legal tools to help them.

While my parents listed me on their power of attorney, I had a devil of a time getting banks, insurance companies, and financial services firms to recognize it. It was less than 2 years old and Virginia has a statute in place that frees them of liability if they do recognize it (my simple non-lawyer explanation).

There are simple ways to set up a safety net
for loved ones.

Instead of spending more hours fighting them (they received it but then didn’t do anything and then I would languish in their phone trees on hold), I worked with my parents to set up online access. In most cases I could do most things for them online.

As we enter this next phase of novel coronovirus and state and federal mandates, I am worried for the large numbers of older adults who don’t have someone who can step in and pay bills should they become sick.

Some things you can do today to prepare include:

  1. Go to the bank with your loved one, and sign their power of attorney. It will put you on the account immediately. They may also offer to add you to the account, but this could be an issue since then you become a “joint account holder” that brings other possible complications and risks.
  2. Set up online access to the account. You can do many things with online access and at minimum it will allow you to monitor the account or step in and help pay bills if your loved ones needs help.

It’s a shame that so many American’s do not have powers of attorney (POA) in place. I believe it should be a right of passage upon turning 18 to set up your first POAs. I did pay for my son to set up a Durable Power of Attorney, and a Medical Power of Attorney for his 18th birthday. I do hope I never have the cause to use them.

We are in strange times. I hope this gives you some ideas of how you can help should you need to step in and help a loved one who doesn’t have their estate plans in place.

If you have the time, now is a GREAT TIME to create POAs, and get a Will in place and have a discussion about the finances. To find a local elder care attorney, you can visit the National Academy of Elder Law Attorneys. Recommended.

How are you dealing with “social distancing” and caregiving support?

I’m involved with many families who have a single adult parent with mild to moderate cognitive issues who wanted to stay at home. Now we are trying to manage care and minimize risk. What are you doing?

After the Alzheimer’s Diagnosis: A Simple Checklist

Kate Swaffer who was diagnosed with dementia over a decade ago, and before she was 50 sent me a link to a story she wrote Diagnosed with Dementia: What’s Next? wrote back in 2015. I hope that one sentence shares the many ways that even after a diagnosis, there are years, and even decades of productive life — she was diagnosed in 2008. See the bottom of this post for links to her books for purchase.

In the hopes of making this simple, I am going to summarize and layer in some thoughts from other readers, and the research, on things you can do to help drive your future. For several tasks, I hope you will collaborate with loved ones who will listen, support, and follow through on the plan you are working to create. Creating an action plan early can help you feel more control, and provide the tools to those around you to feel confident that they are doing what you want.

Ask your doctor(s) for and collect the following:

  • Your diagnosis. You should get this information from the physician who made the diagnosis. What is it? What are some symptoms? What are effective symptom management techniques? What might you expect in 1 year, 5 years, 10 years? What changes might you expect and how might you address them?
  • Clinical trial resources. Because so little is known and we don’t have a cure, would participation in a study offer benefits to you physically and emotionally?
  • Referrals to local support groups, programs, and day-programs for engagement. Learn and ask your doctor(s) about staying engaged both physically and intellectually and it’s impact on brain health maintenance.
  • Is there rehabilitation that would benefit you? From Occupational Therapy (OT), Physiotherapy, Speech pathology, Walking/mobility rehabilitation, Dietician, Psychologist, Social worker, Specialised fine motor skill rehabilitation, to counselling, including grief and loss as well as support groups.

Create your own care plan based on the recommendations and discuss with your loved ones:

  • How to help. Make it clear to those around that it’s important they recognize you in meetings where your health, your assets, and your living choices are being discussed.
  • What you like. Do you like walking? Playing games? Going to Yoga? What are some physical activities that you enjoy doing. If you stop driving, is there a way to help you maintain this activities?
  • What do you want to be known about your diagnosis? If you are still working, how might you discuss and how do you continue in a job if you have noticed some of the symptoms of dementia are presenting in your personal and professional life?
  • Who do you designate as your personal/financial and medical advocates. They may not be the same person. While many people designate a spouse, you need to have a plan B since the spouse could very-well predecease you. Sorry, I know that is a little grim. : <
  • Would you be open to engaging in local classes, workshops, and programs knowing that exercise and engagement can help minimize your cognitive decline?
Try out the Alzheimer’s Navigator (See Red Arrow).

I found this site that can help you navigate a host of questions and issues related to Alzheimer’s, but it will help with other forms of dementia. I was surprised to find an action plan they offered that was for the caregiver … not the individual diagnosed. However, the toolkit may be a great way to have a conversation that is difficult to begin. You can do the General Assessment as a “guest” — just look in the bottom right corner of the page (see red arrow) for that option.

One of things Kate Swaffer has done is help advocate for the rights, and abilities, of those diagnosed with dementia. Now is a good time to understand what you can do to best advocate for your future. Encouraged.

What the Hell Happened to My Brain? by Kate Swaffer (Amazon)

What the Hell Happened to My Brain? by Kate Swaffer (Google)

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.

You have been diagnosed with Dementia. Now What?

I am guessing that many of you share my fear of dementia. For those of us with loved ones who have lived with it, we know how devestating it is for the individual as well as the loved ones that surround them. But it doesn’t have to be. Once diagnosed, you have so much opportunity to direct, manage, and guide your life.

When the outcome wasn’t quite what you wanted.

I believe that the numbers reported are low because many people just don’t pursue a diagnosis. It is important to get a diagnosis for many reasons. The first is planning. If you know what you are facing you will be better prepared to plan the rest of your life.

As a Daily Money Manager who works mostly with individuals who have cognitive impairment or dementia, I know that not planning ahead or documenting personal wishes about future care and life choices most often results in guilt for those around you that will help. How will they know what you want if you are not explicit?

I know this after being the local adult child caregiver to my two parents with dementia. My parents had advanced care directives, but the most valuable guide for me in their care was the conversations we had around the dinner table. I knew that my parents wanted QUALITY of life over QUANTITY.

When my Dad was diagnosed with a tumor on the back of his tongue and in a moderate stage of Alzheimer’s, nothing in his care directives spoke to such an unusual situation.

When my mother broke her hip and the Doctor wanted to lift the Do Not Resuccitate order at the hospital to operate on her, I knew she would want me to tell them to let nature takes it’s course.

Ohhhh, but I still have guilt plaguing me about my decisions. I made the best decision I could at the time with the information I had.

The best way to ensure you get the care and support you want as you are living with dementia is to provide written (or video) of your specific care wishes. Use real-life sceanarios around you to tell someone what choice you would make if you were in a similiar situation.

Even if you have estate plans in place, now is the time to visit an attorney to update your plans. There are a variety things you can do to be an active driver for the rest of your life.

There are a wide variety of adults living well with a dementia diagnosis. Check out my favorite champion (who has gotten 3 advanced degress since being diagnosed more than a decade ago under the age of 50) Kate Swaffer https://kateswaffer.com/. Awed.