You Do Not Have to Navigate Alone

When a loved one needs your help, it’s easy to say “Yes” but then find yourself overwhelmed with choices or decisions you don’t know how to navigate.

I lived this journey and recognize how I could have made it easier for myself, and my parents if I had incorporated an Aging Life Care Professional earlier.

I seem families struggle with their situation, and they just don’t know what options there are to help. Unfortunately, your primary care doctor, nor any of the specialized medical professionals you visit, don’t have the time, or the practical knowledge to know how to navigate living choices and care options once a health condition is making life more difficult.

I used Aging Life Care Professionals to help me narrow down the choices for a memory care community for my Mom. She was living in a Continuing Care Retirement Community, but the care options for her didn’t fit her memory care needs. In our area we had over 30 memory care communities. The Aging Life Care Professionals I hired understood that my Mom loved to walk. They gave me and my siblings 3 places to visit so we could make the final choice and also gave us the pros and cons for each. We were very happy with the choice and the advice on how best to help make the move for my Mom. We paid them for a few hours of their time, which helped me save dozens of hours researching options and eliminated hours worrying about making the right choice.

I work with many families who are floundering to help find the right care and understand the care options in their area. I will always recommend they contact a local Aging Life Care Professional to help navigate these early choices. They can help understand:

  • The type of care that would be most useful
  • The terms and conditions in a care agreement with a home care agency
  • The amount of time you might consider having care support in the home
  • How to adapt your home to make it easier for them to stay there
  • When you need to consider a care community over caring for a loved one at home
  • Who are the best doctors to help address the health issues being faced
  • How to navigate what you believe to be your loved ones wishes with their health condition

Those are just the basics and I encourage you to consider contacting a professional in your area and letting them help you understand how they might be able to help you.

What I do know is that so often the caregiver fails because they are overwhelmed. I hope you will take the time to contact a local professional to see how they might be able to help you and your loved ones. Encouraged.

How can I get Mom to Move?

I have lived this journey. You know Mom/Dad are not safe in their home, but they have no interest in making any changes to their living arrangements.

First, recognize that your loved one may not recognize that they are not managing very well. Their eyesight might not allow them to see the dirty counters; a change in their cognition might make a messy room not seem like a problem; an inability to manage more than one step at a time may make picking up and sorting piles of mail seem less important.

A friend visited her mom and they were working on clearing out the closet. They had pulled everything out and sorted it and the day got too long for them to finish, so they left the project and went to dinner. They were all exhausted and planned on finishing the work in the morning. When my friend returned in the morning, she found her mother put everything back in the closet and was angry that her daughter had “rummaged through her stuff!”

It’s hard. You are worried for their safety and when someone is totally lacking short-term memory and having difficulty processing a simple project, it means they really should not be living on their own. Mom refuses to clean out the clutter and says she is not interested in moving.

My Advice? Tell your Mom you are worried and you want her to move (community, your home, siblings home, fill-in-the-blank). Have the conversation. Understand her feelings, fears, wishes. Don’t dictate, yell, admonish, but just have a conversation. After you have had the conversation, determine if you can come back on another day and implement what you discussed but approach it knowing what your Mom is worried about or afraid of.

When someone doesn’t have short-term memory you will just relive the same conversation. Remember that emotions are what usually get remembered, not the content of the conversation.

After struggling through a move from Independent Living to Assisted Living for my parents, my siblings and I had the conversation with our parents. We were afraid … as are many adult children … that the Assisted Living apartment was too small for them. However, we knew we had to make this happen or their community was going to evict them. One day, we took them out to lunch and brought them back to their new apartment. We spent time helping them decorate and patiently answered questions.

Within days, they had adapted and WERE HAPPIER. They loved being able to watch people come in and depart from the entrance. They had totally forgotten about their prior apartment. At this point, both of my parents were in a moderate stage of their dementia. The move can cause a step down in responses and thinking. They actually enjoyed having a smaller place to manage and enjoyed their new home. We were all surprised.

If there is a cognitive issue, you may never be able to talk them into the change. If they are truly unsafe and a change needs to be made, you might have to make it happen if there is no way to layer in safeguards where they are.

If you don’t make the change, you end up waiting for the crisis and then have fewer options and maybe now another health issue to manage. There is no right answer … just the right answer for you and your loved ones. Believed.

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

New Life Care Models

The devastating impact to the lives of those living in community care has made the discussion about finding new and better care models a priority.

For my clients that are still at home and living independently, and those who are in community settings and have been basically sheltering in place, the change in their cognitive and physical health is notable.

Heck, I think we have all felt the impact and worked hard to retool and find outlets to replace connections. However, for some this just isn’t easy to do if you don’t use technology, or you are unable to walk around freely in your community.

I wanted to share two interesting options that have been shared with me lately. I’m hopeful more of these multi-generational models will blossom.

Carehaus (Baltimore, MD) In a Carehaus, disabled and older adults, caregivers and their families live in independent living units clustered around shared spaces. In exchange for their labor, caregivers receive good wages, childcare, and various benefits. An additional team engages residents in shared meals, horticulture, art, fitness, physical therapy, financial literacy courses, and more.

Granny-Pods A granny pod is a modified ‘guest house’ that allows caregivers close proximity to aging loved ones. They are also called ADUs, or accessory dwelling units, and are designed with safety and accessibility top of mind (for example, slip-resistant floors, wide doorways, and rounded countertops). Some versions offer high-tech medical extras.

I have seen a few 3-D printed homes that integrate universal design and technology into the home and am hopeful more of these options will emerge in the coming years.

What I have learned is that I don’t believe a “forever home” is truly a practical option. At least for now, I see moving to a new setting can offer many more benefits to our emotional and physical health. I’m working hard to keep an open-mind. Hopeful.

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.

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.

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.

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.

What’s the best option now for my Mom with Dementia?

Everyone is growing stir crazy and the news seems to be so varied. I’m wondering how other families are navigating care.

My clients that have been aging in place either shut out all caregivers and have been managing on their own, or supported by hand-picked caregivers. The others that live in communities can’t leave without agreeing to a 14-day quarantine when they return — even my one client that had and survived covid-19.

I wish all generations grow old as magnanimously as the Silent (or Greatest) Generation. They are not complaining, but do look forward to regaining the ability to get out of the home. Many have shared this isn’t their first pandemic.

In both cases, it has been really tricky to close the gaps on those things that the family and the rest of the care team worked to smooth over. It’s given us a lot of new challenges to rise up to meet.

If covid-19 is now a regular part of our lives, how do we best manage to keep our loved ones at home, engaged, and supported? Some things that seem to work include:

  • Having select caregivers live in the home who are following social distancing guidelines (wearing masks out, avoiding crowded locations, washing hands frequently);
  • Minimizing outside services and vendors from entering the home and when they do taking the right precautions;
  • Layering in outside engagement with visits that occur outside;
  • Investing in new technologies to test to offer some additional engagement (Zoom calls, Alexa).

For my clients in communities, several of them are getting options and engagement which is a positive. Their biggest complaint is the limits on family visits (outside a window or through a plastic partition) and their ability to leave even through they know restaurants were not open and the grocery store was an adventure until itself.

Now that many states are reopening, and we know they are the most vulnerable population, how do we manage forward? These are a few things we are working through, what is your family doing? Asked.

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

Moving into a Care Community that Matches Your Current Need

The move discussion is difficult for many couples and families. I did a three-part series on the topic to help provide a quick overview into some of the key learnings I have discovered. Here are the first two:
1) The Angsty Discussion About Moving: Life Care Communities
2) Moving Choices: Aging in Place – Part 2 of 3
and today is a final consideration on planning.

I do recommend you consider hiring a local Aging Life Care Manager to help navigate these choices and the current community options near you or your loved ones. I worked with one to help with my Mom and have seen them help with this discussion and process over and over with many clients.

The One Client Story That Illustrates How This Can Work

I started to work with Marge when she was living in her home. She had missed some bills, overpaid others, and was giving out her credit card number over the phone to charities daily.

After a year, it was time that she moved into an Assisted Living Community because living at home was just no longer a safe choice at 89. The new community was a combination of Assisted Living and Memory Care residents. She initially moved into an Assisted Living apartment but after about a month would wake up in the middle of the night and wander the halls in her nightgown worrying and sometimes tried to leave. They moved her into the Memory Care community so she would have more support and she would be in a secure section of the building. However it was hard for her to get integrated into a group of women and eventually she managed to actually break out. The community was just no longer a good fit so the Aging Life Care Managers searched for a better fit.

In addition to not really finding companionship with other residents, Marge had to pay for additional personal care assistance. Her monhtly community fees with the extra staff support now rang in at over $20,000 a month.

Six months ago she moved into a residential setting. She lives in a home with 5 other women with moderate stages of dementia and it’s a great fit for her needs. While this was not the right place for her initially, it is right now given how her dementia has progressed and the type of personal care that is best for her.

There is an Aging Life Care Manager who has been helping the family along the way, and while everyone thought the first community move was a great choice – and it was a great fit for a while – eventually it just wasn’t the right place for her needs.

Now at 93, we hope that she has made her last move. However, considering a move to a better fit is still an option and if she ever needed Skilled Nursing care. Her new community is now a third of the cost and she has found a loving group of residents and caregivers that are helping her find some happiness daily. It is the ideal fit for her right now.

I’m in the metro-DC area and we now of dozens of choices. I’m amazed at how many communities are still arriving.

Please know that you will make the best choice you can with the information you have at the time you need to make a decision. It will be easy to look in the rearview mirror and second guess choices made. I hope this has given you some insight into how to look at living options if you have loved ones living with dementia. Hoped.