Category: Assisted Living and Dementia Care

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.

Moving Choices: Aging in Place – Part 2 of 3

The first in the series The Angsty Discussion About Moving: Life Care Communities is a general overview of of how they are structured, the reality of the choice, and some things to know and consider if you are looking into this option.

“I’m not gonna nove and you can’t make me.”

Now it is time to share some of the common issues and themes I see when a spouse is working to stay in the home with their loved one who needs more care as well as when adult children are helping a parent live at home alone.

In the beginning, it can be less expensive to layer in the care to support staying in their home. However, especially for a spousal caregiver, the care needs and isolation can become overwhelming in addition to the drain it takes on the health of the caregiver. According to the Family Caregiving Alliance, spousal caregivers ages 69 to 96 have a 63 percent higher mortality rate than noncaregivers in the same age group.

Often, the individual living with dementia doesn’t understand why their spouse is hiring outside help. Many living with dementia cannot recognize the necessity that someone help them through their day or the need for their spouse to be off the clock. The caregiving spouse starts to lose their outside connections and support in addition to skipping their own medical appointments and care needs.

Even though the couple is together, I am seeing that they both begin to feel isolated. The loss of a partner can also be more devestating since their partner might be their only engaging social connection. I saw this with my parents.

For those that choose to stay in their homes either with or without a spouse, there are engaging adult day programs for the individual with dementia. Isolation can actually lead to a faster cognitive decline and studies have likened the health risk to smoking a pack of cigarettes a day.

Generally, I see many couples and individuals supported by an adult child living at home alone resist outside support. Unfortunately, about half the time a critical incident occurs and blows up this option and a scramble to employ support occurs. If no prior plans are made, the available options are usually not the best fit. A little support layered in early can be an ounce of prevention and provide more options should care suddenly be needed after an event.

Living at home can also end if an individual living with dementia starts to wander or becomes combative.

The successful couples and families managing a loved one living at home have been able to integrate supports for daily engagement through personal care assistants or the use of an adult day program for the individual with dementia. I know how challenging it can be to start so just ask them to try it out for a few hours and days. Forced changes usually are met with solid resistance.

As a security measure, individuals and families that plan ahead have also selected at least one community that might be a fit if they need to make a change and gotten on the wait list. You can always decline the space when it becomes available but remain in the queue.

PROS:
– Familiarity in the home environment can help someone living with dementia stay independent longer since they have long-term patterns established.
– Expense. If you only need some part-time support or help, or even sign up for an adult day program, the total cost of living is less expensive.
– The individual with dementia wants to stay in their home.

CONS:
– Isolation impacts health and cognitive function in negatives ways. Even introverts (like me) will benefit from social engagement.
– Spousal caregivers have an increased risk of death.
– When something happens, there is no quick solution to provide support (unless you have already planned ahead or gotten on a wait list at a local community).
– Moving after dementia has been diagnosed usually means that learning new things will be more difficult. It can be tougher to make friends and engage within a new community.
– Expense. There is a tipping point when bringing all the services to you can be more expensive.

RECOMMENDATION:
– Make a plan for social engagement and find ways to make it happen. Call your county Area Agency on Aging to find out what resources in your community are availble to help.

There is no right or wrong choice when it comes to choosing the best option for your loved one and their primary caregiver — Just the best option for them and the caregivers when you need to make a choice. Advised.

Up Next, Moving As Needed …

The Angsty Discussion About Moving: Life Care Communities

The discussion about if to move, when to move and where to move is an inevitable topic if you are caring for loved ones with dementia. Most people want to “age in place” and view a move as a huge negative … initially. However, there are many times when moving is better for the individual living with dementia as well as their caregiver — especially for a spousal caregiver.

What I have seen playing out with my family, friends and their families, and clients is that the “move” that created so much angst and difficulty is generally not the last move.

My hope is that knowing that may help you discuss what is really just the best move to make for now.

I’m going to walk through some scenarios in hopes that it will help you and your family make better informed decisions about caring for a loved one. There are no wrong or right choices … just the best choice for your loved ones RIGHT NOW.

Buying Into a Life Care Community

My parents bought into a “Life Care Community” and handed over nearly a half a million so they would “never be a burden to their children.” The Life Care Community model typically offers Independent Living, Assisted Living, Memory Care, and Skilled Nursing options all on the same campus. The idea is that you moved through the system as needed.

The community helps with the activities of daily living (eating, bathing, walking, dressing …) but they do not help pay bills, manage lifestyle desires, cater to medical choices and preferences, or act as personal advocates. Because my parent’s had the belief that moving in meant their adult children would never need to be involved, caring for them was actually harder than it should have been.

At one point the community asked us to petition for guardianship because my parent’s were a danger to themselves and others. We refused and worked hard to manage through their needs while allowing them to retain their personal dignity.

My parent’s were eventually forced out of Independent Living and had to either move into Assisted Living or move out of the community. The smaller apartment and proximity in the community to the action was a big bonus and my parent’s were actually happier than I had seen them in years.

After Dad died my Mom struggled. In this community, the section for Memory Care only had people in very late stages of dementia. My Mom was always moving and needed a community that would give her space indoors and out to move. We moved Mom out of the community they bought into and oddly enough actually paid less monthly for a better care model for her needs.

The good news is that the “buy in” model is fading away. However, before you plop down a stack of money know that the community may not be the right fit for your loved one as their care needs change. In many communities, Assisted Living is filled with many individuals who have mild to moderate dementia. I watched as those that just needed help with dressing and bathing avoided my Mom who couldn’t remember their names or hold a meaningful conversation any longer. For a variety of reasons, the next level of care needs for your loved one may just not be a strength of the community care offered in a Life Care Community.

There are a lot of positives for these communities. Make sure you met with your Financial Advisor or run through the numbers if you can choose to either “buy in” or just pay a monthly rent. The unknown is if an when you may need to leave the community you are moving into. I know it’s a horrible wrench to throw into this difficult decision… but it is a very likely scenario that should be considered before a large financial investment is made.

PROS:
– Integrate and build friendships in Independent Living and have a place and connection for the rest of your life
– Some communities are now letting you move into your apartment and bring the varied level of care to you versus having to move through the different communities.

CONS:
– Have to move when your care needs change and the community doesn’t have the best fit for your needs.
– Expensive. Many now don’t require a lump sum payment. In our area we have a lot more choice and now they have different models for payment.
– It’s often hard to make new friends when you move into an established community.

RECOMENDATION: Ask if the community has a trial period so you can move in and see if it is truly the right fit for you now and can serve needs into the future.

I hope this helps you and your family as you are starting to have these discussions. Witnessed.

Up next, Aging in Place …

Tour the Local Adult Communities – #21

50plusadults

In my role as a caregiver, I learned that my own community had very few aging life care, memory, or assisted living communities. I toured all three at the time to understand what they had to offer. I learned that the one we liked the most had a really long wait list.

Now that I work with older adults and their families, I have seen that most of my clients are only moving in AFTER there is a critical incident. Sadly, that limits the choices since many of the best communities have long wait lists.

When I start to work with an individual and family because they need help with the day-to-day bill pay, medical care or home upkeep, I always suggest they tour and select one. You can get on a wait list and you never have to move in, but should something happen, YOU or YOUR LOVED one got to choose the place.

For many communities, the individuals on the wait list have the ability to use the community for any short-term rehabilitation or skilled nursing needs.

It is reported that one in three working Americans will become disabled for 90 days or more before age 65 (TMA) and the U.S. Department of Health and Human Services reported that at 65, 7 out of 10 American’s will need long-term care services. That information means that most of us are going to need some help and what we do know gives us more control over future events.

You may find a local 50+ community in the area that might be better suited your lifestyle. There are now a lot of choices you can make for living well.

You have probably received a postcard inviting you to a local community or heard about a nearby senior fair. It’s worth an hour of your time to get familiar with the resources for when someone needs them. Suggested.

Integrating into a Community is a Common Challenge

The topic of when to move and why is a common discussion as our parents are aging and our friends are starting to discuss downsizing. In general, most people want to stay at home. However, there are quite a few issues to address from predatory service providers, socialization, and fall issues.

70% of Assisted Living residents have cognitive impairment making it hard to make new connections.

The issue that concerns me most are the single individuals living at home who don’t consider how long they might go without someone knowing to call for help. I have heard too many personal stories of loved ones being on the floor for so long it creates an open wound (this can be in just hours in an older adult) or another complication develops that radically changes their health. A wearable pendant with a push button won’t help someone who has a head injury so I also ask those individuals to consider the ones that will call you if a fall is detected. Unfortunately, you many find you are getting called more than you would like, but too many calls is better than zero should you need assistance.

However, I also have a dear client who moved into a community and I see how hard it is for her to make new friends. It’s clear to me that she has lost some short-term memory which can make it difficult to form new friendships. A recent news I read cited that “70 percent of residents have some degree of cognitive impairment” in Assisted Living communities.

With the average age of most Assisted Living communities in the 80s, it’s no wonder that the transition can be more difficult if the majority of the residents are unable to make new friends.

My mother who was the ultimate hostess and always taught me how important it is to make the new person feel welcomed had a very tough time connecting with the residents in her community. As her dementia progressed, she was unable to make connections. The hardest thing to witness was how much the other residents in Assisted Living avoided those with cognitive issues. I get it, but still don’t like it. I think because I have cared for two parents with dementia, I will always be sensitive to the isolation that they must feel and will make an effort to connect. What I don’t know is if my own cognitive changes might make me less compassionate when I’m in my 70s.

So now I’m wondering if moving earlier is better for the individual so they can develop new friendships and be more familiar with the community before they reach the critical time when living at home is just no longer an option due to safely issues or the costs of bringing the care needed to you. I wish there was a better way to determine what is the best option. For now, I think we all work to find the best options for our individual needs Wondered.

I’d love to hear what your family did or how you are making these choices. There is no right or wrong answer I don’t believe.

Simple Steps to Safe Guard a Loved Ones Finances

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 the suggestion that she was unable to manage a checkbook safely was something that needed to be left unsaid. I found that out after I said it a few times. ; <

The biggest problem I faced was a lost purse that contained the checkbook. She thought she left it in a cab, a store, at a bridge game … I couldn’t manage the hours each week spent looking for her purse. Today you can at least get a tile which would have been immensely helpful in keeping track of her handbag, but it wasn’t an option yet.

There are options to consider if your loved one would like to continue to manage their purchases:

  • Open up a new checking account and fund it with a small amount of money that can afford to be lost. I did this for my Mom. She had her checkbook, and I could move money into her account in small amounts as it needed to be replenished. If the checkbook never turned up or she had a check stolen we could easily close the account.
  • Consider setting up a TrueLink card. It is basically a 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.

Unfortunately, I have recently had clients both at home and living in communities be 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 the past month, I have reported three caregivers for violating this condition of employment. Sadly, I know they will just turn up at another agency.

What I struggled with was that this was one of the few remaining freedoms for my mom. She could no longer drive, or run the bridge games she loved, and that checkbook gave her an empowered sense of self. Now as a Daily Money Manager, I see all the ways that people are trying to get at the money of my clients.

Ultimately, someone needs to be vigilant about minding the finances as well as considering how to layer in these protections. A few bad apples spoil the lot. Reported.

It’s time to show up and fight back against Elder Fraud

As this appears, I will be testifying in court against elder fraud. A personal care assistant in my client’s memory care community coerced her to write her a check. Her story is ridiculous and includes tasks sadly my client has been unable to perform for over a year.

This woman has been working in elder care for nearly a decade. Not only did a check get written to her but I also found that my clients credit card was missing. The problem is that most families faced with these issues just don’t have the energy to fight.

I know. I could have fought the many banks that were refusing to accept my power of attorney, but after all of the visits, and tasks to help mom, starting a law suit was the last thing on my mind.

I have pledged to my clients that any work done to fight against fraud is done pro-bono. Many Daily Money Managers donate their time to help out fight frauds and scams on behalf of their clients and I’m honored to be in such a stand-up group of professionals. It is in all of our best interests to get these creeps away from our loved ones and I’m always game for a good fight. Bring it.

The indignity of aging: Caregiver Exploitation

stealmemeIn the past few weeks, I’ve been involved with three older adults who have been the victim of fraud and exploitation and it’s both fueling my commitment to serving older adults and whittling away my belief in humanity.

It’s been distressing and discouraging on many levels.

Every year, the National Council on Aging predicts that $17 Billion is taken by businesses, individuals, and charities that use pressure tactics or misleading language to lead seniors into financial mistakes.

CAREGIVER EXPLOITATION: The first older adult lives in an assisted living community. She is unable to manage her affairs now and I pay the bills on her behalf. She’s been declining and a new caregiver coached her through writing a check for $100.  When I discovered it, I immediately reported it to the community and it resulted in the loss of her job.

I’ve been working with this client for more than two years and know that it would have taken at least ten minutes for her to write that check. She would have been unable to complete it without step-by-step coaching. We reported it to the police and hope they will be able to charge her for this crime. What I learned during this process is that she has been working in senior-living communities for almost a decade. YIKES!

Did she start small to see if anyone noticed the check?  Had we not found it, would she have returned for more money every week?

I’m not sure we will ever truly know.  What I do know is that she most likely made my client very uncomfortable and that makes me angry and sad.

I decided that what I could do was to let the owners of the local home care agencies know her name and what she did. Gotta admit that I made A LOT of phone calls. However, I hope that it can help avoid this happening to someone else. None of these agencies would want her on their payroll. I’m sorry that it’s not easier to prosecute those that pray on older adults.

This is just a reminder that being watchful and protective can make a huge difference for those you love. Fueled. 

How do I help Mom remember Dad is Dead?

cole indoor 2017 - ocean breeze 4x4The weeks after my Dad died were one of the worst transitional periods in navigating as a Caregiver for my Mom with Vascular Dementia. I was shocked and devastated at his quick decline and death, and my Mom, who no longer had any short-term memory, kept asking for me to take her to visit him.

I didn’t want to have her keep reliving his death, but I felt like I was always having to let her know he passed away. She was living in Assisted Living with him and really liked it there when he was alive. However, she didn’t do well after he died. She was out looking for him in the community and getting into fights with the other residents.

What I realized was that there were many things I could do to help her know about his death and help her try and process the grief. First, and I’m still not sure why we did this, but after dad died, we all gathered around his body and had the hospice nurse take a picture. I printed out copies and put them in her apartment with the date so she could see we were all there at his death and had said our last good-bye. Remarkably, this really helped her process his death. She could see all the kids were there and by her side.

Once the obituary ran, I put those copies up along with the final picture. After the burial service at Arlington Cemetery, I added more pictures of the service and all of us together. I wanted her to know she wasn’t alone in her grief.

Dementia is such a cruel disease.

I remember talking with my mom over a year later and telling her about watching my son at a track meet. My Dad was a hurdler for West Point. She had one of those out of the blue clarity moments and says “Oh Vald, would have loved to be there to see him run!” I hadn’t heard my Mom talk about Dad for months. I was elated and gut-punched with grief all at once. Remembered.  

Is keeping Mom at home the right choice?

homesweethomeI know how often I second-guessed the choice of where my Mom lived. My siblings and I often discussed how we could better use the money being spent on their care community that never seemed to be the right fit for them once their dementia really changed their thinking and behavior.

Now that I work with families who are usually not in the metro-DC area and want someone to help their loved one who is still living in their home, I wonder when is it the right time to consider moving them into a community.

In general, the earlier the move for someone with cognitive issues, the better. They can make friends, find activities they enjoy, and benefit from the social activities that can keep the cognitive decline at bay by staying engaged.

However, I understanding viewing the move from their beloved home as a major issue that most older adults decline and often fight against.

I battled with myself the last year of Mom’s life. Should we move her into our home, even though she made it clear over decades that she never wanted to live with one of her children? I knew it would be a major ask of my family to move her into our home. She would have needed someone at the home to help her when we were working. I realized later that she also would not have had the benefit of all of the activities for engagement within the community. I wish I could have played out both options and reported back to you.

Every family needs to make the best choice for your circumstances. Please know that the fact that you are involved and engaged is more than most adults with dementia receive. Many families detach, others fight over the choices, and for dozens of other reasons, their loved ones don’t have the benefits of an advocate who is watching out for them. Weigh your options but be satisfied that you are making the best decision you can with the information you have right now. Considered.