Category: Managing Parent with Dementia

Start the LTC Claim ASAP

In working with individuals who have Long Term Care (LTC) Insurance, I have one of our many who used it all up. Sadly, I have walked into situations where the individual has passed away before they used half of the benefits.

Initiate your claim as soon as you qualify.

I am still waiting to figure out why you wouldn’t start your claim as soon as you possibly can. What you should know is that:

  • Once your claim is approved, you NO LONGER PAY your LTC premiums.
  • While many state they are for two years, that is how they calculated the full benefits, but they continue to pay as long as your policy still has money left to cover your LTC qualifying expenses.

If it were me, I would rather use up all of the LTC insurance money before I paid for the services needed out of pocket.

Many of the policies have a distinct mention of cognitive impairment which is separate and distinct from qualification by needed help with the Activities of Daily Living (ADLs) to include bathing, walking, toileting, dressing, and eating.

I hope this might spur a few people to look into this and get the benefits flowing as soon as you or a loved one qualify. Hoped.

Praying on Those Who Would Help

The number of COVID scams continues to grow. I got this email yesterday and wonder how many people immediately jump to volunteer — we have more time (seemingly) and we all want to help kick COVID to the curb.

What bothers me about these types of messages, besides just being poorly executed (not my email address; the “From” email address that is goobly-gook behind the name of “Clinical Research”, what is it a “Verification” of?) is that I know many people are interested in helping. The fact that a good deed gets punished by a scammer bums me out.

For those of us with loved ones that we know are feeling more isolated, the phone and computer can be a source of entertainment … and danger. I have had several clients fall for pop-ups and they called and gave out login and banking information to the bad people. Thankfully, we could shut down and recover quickly and no money has been lost — but to have it happen so frequently now tells me it’s important to be more vigilant.

For several clients, we have created a “white list” so they get their messages from the people they know, but all the others get either blocked or filtered. When we visit (or when family visits) they can go through the other messages together. Some family members do a daily check-in and filter out the bad messages. A little more vigilance can go a long way. Protected.

Yes, And …

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

My Dad got quieter, and my Mom grew suspicious.

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

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

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

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

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

Strokes, Free Will, and Frustration For All

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

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

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

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

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

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

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

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

Some other suggestions from other care managers include:

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

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

Dreamwork Makes the Care Team Work

Caregiving was already hard, but I feel like Covid and the isolation has made things twice as difficult. I hope you are all managing to adapt and have resources and options to help best serve those you are caring for now.

So many things seem to go wrong and fall through the cracks. I have two clients that are alone in their homes and the effort and care of the team is the only way they can safely stay in their homes. These clients are lucky to have the money to afford these resources. I don’t think most people really understand that aging in place brings with it different costs that can be as much (and even more) than a care community.

I’m lucky to have passionate individuals on these care teams that contribute insight and truly care about how we can best serve their needs.

My Aging in Place Dream Team includes:

  • Aging Life Care Manager: Someone needs to be the lead on medical appointments, follow-ups and health care needs. I tried to manage all of this for my parents and wish I had brought them in sooner than her last year to help. I regret the lost time managing her health care needs when I visited her memory care community versus just being able to sit and spend time with her as a daughter.
  • Friendly Visitor: There are a variety of individuals who are able to engage, help, and guide through hobbies, shopping, and setting up and helping with Zoom calls to socially distant friends and family.
  • Home Care Team: Whether it is an individual or an agency with a deep bench, having someone that can help with the activities of daily living as well as ensure they are safe in their home 24/7 has been a necessity.
  • Daily Money Manager: Someone to pay the bills and manage the home maintenance.

In the past two months, we have experienced an Identity Theft (he gave his banking information to someone that he thought was Apple Support even through he has a Dell); a flooded apartment; phone service outage; a failed car inspection (he has a car that family can use when visiting that was his wife’s and is important to him); yard care needs (this rain has really helped the kudzu grow).

There are many handoffs and follow ups needed to keep the team in synch. We share a digital calendar for one client and the other one has 24/7 in-home care that updates the schedule of visitors.

For both clients we have talked about having them live in a care community. Right now it’s a hard transition with required 14-day isolation and difficult to decide to move someone into a care community where we know Covid wreaked havoc. We recognize that we are the ones helping them lead their lives in spite of all the Covid barriers.

The reality is that you will make the best choice with the information you have. I just realized how much I valued the team of individuals helping support these individuals in their homes lead the lives they had planned. While we are all feeling so isolated lately, I am happy to be part of these thoughtful care teams. Appreciated.

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

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

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

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

Savoring Your Time as an Adult Child

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

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

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

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

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

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

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

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

Dealing with Dementia in the Family

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

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

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

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

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

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

Helping Celebrate the Important Life Dates

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

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

Celebrating 60 Years of Marriage

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

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

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

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

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

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

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