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.

A Quick Way to Ensure You are Well-Represented

When my parents health started to fail, I was the adult child that was local and stepped up to help. While my parents had planned well, what I needed was information on their accounts, the locations of their personal documents, and access to their online accounts to help reset codes and update account information.

While I wrote a book that will walk you through this process, I am happy to give you a summary of what you need to collect and organize so you can do it yourself. Having a summary of this will help your spouse, partner, and loved ones that will step in to help should you need it.

Every adult should have a Durable Power of Attorney. It gives someone the ability to step in for you and pay bills, and manage your financial affairs if you are unable to do this — even temporarily. We did this for my son when he turned 18, and I used it to file his taxes one year when he was traveling.

For those of you caring for someone, you know how important, frustrating, and necessary it is to have this document in place. What many people don’t know is how difficult and time-consuming it can be to have a financial institution recognize the document. Many couples don’t realize until, it is a problem, that being married does not give you instant access to a spouse’s account if you are not named on it.

In hopes of giving you a simple guide to organize this information for yourself, I am releasing this free download.

Get a free copy of this guide at http://www.MemoryBanc.com/POA

Feel free to share it with everyone you love. Offered.

Strokes, Free Will, and Frustration For All

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

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

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

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

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

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

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

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

Some other suggestions from other care managers include:

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

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

Guilt: The Hidden Emotion carried by Adult Family Caregivers

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

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

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

If you serve in a capacity as a:

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

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

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

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.

Helping Celebrate the Important Life Dates

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

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

Celebrating 60 Years of Marriage

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

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

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

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

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

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

The value of multigenerational family living $$$

For twenty years, my Mom told me she never wanted to live with her children. They bought into a Continuing Care Retirement Community (CCRC) also referred to as “Life Care” Communities so they would “never be a burden” to their children. For those of you that have seen the first few years of my blog … helping my parents was a very complicated affair. I won’t say it was a burden, but we could have done it way better had we not tried to directly follow my Mom’s wishes.

I’m going to first share the cost of their care using the CCRC.

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

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

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

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

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

Assisted Living was not the right place for my Mom with dementia. The residents didn’t want to eat with my Mom would couldn’t learn their names and my Mom stopped going to the dining room for meals. As you may know, there is no kitchen in Assisted Living and my Mom was unable to prepare her own meals. She became very agitated and so they required we hire a personal care assistant for 12 hours. The memory care community in the CCRC was only for end-stage individuals with dementia so neither the Assisted Living or the Memory Care were the right fit. We made the choice to move her to a Memory Care community outside of their “Life Care” community. So much for the HALF A MILLION they paid to move into this community.

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

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

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

As I sit here today with many of my clients in communities cut off from family and at a higher risk of getting covid, I realize I need to start having a discussion with my children. When we or one of us needs help, I hope my children will be able to make the best decision for us at the time they need to make it. No preset conditions because our world and how we will care for older adults is also changing.

For $1.5 million, I would have preferred to have a home where my parents could have lived with us, but still had the freedom to be independent. When they needed care, we could have arranged to bring it in. Thankfully, our community has gobs of ways to stay engaged and active and we could have used that money to pay for the personal care assistants to help them lead their lives when they needed it.

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

This is the first time I sat down to add it all up. What I do know is that the current care solutions, whether in their own home or in a community, are not ideal for most of my clients right now. They are all very isolated and we don’t see this ending any time soon.

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

Might it be time for us to move back to multigenerational homes and return to a personal model of caring for our loved ones? Advocated.

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

Top Resources for Dementia Care

I started this blog to keep my family and friends up to date on my caregiving journey and primarily to avoid having to tell the same story over and over. I quickly realized it was a great way for me to digest and analyze how I could be a better caregiver. I started to include some practical solutions to common situations.

Today, I work with adults diagnosed with dementia and their families and continue to learn and navigate the caregiving journey.

This year is the fifth year this blog has been named to Healthline’s list of Best Alzheimer’s Blogs. Check out the list of winners and find a host of valuable resources. You don’t have to figure this out on your own. Those of us walking this journey are more than happy to help. Believed. 

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Now it’s Time to Get Organized

While our social lives are slowing down, now is a good time to work with your spouse, partner, family, and friends to build a roadmap of your important personal documents, asset details, and account information.

You can download a free checklist here to get started.

While I initially created this checklist for caregivers, I found it was incredibly useful to organize all of the information that surrounds my family. I also went from two drawers in a filing cabinet to one 2-inch three ring binder.

You can download a free copy of the checklist (and get a simple guide on what to save and what to shred) to put together a binder of your information. In my house it sits on the desk in our home office so everyone can find the information when it is needed.

I hope you will find it useful for you and your loved ones. Feel free to share this PDF. Given.

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.