Navigating the Early Days of Dementia – Part II

A reader (thank you Debbie) reminded me how important it is to make a connection with the individuals surrounding your loved one. Thankfully, these days are behind me. However, the issues surrounding helping my parents reshaped my life plans. Nearly a decade ago, I launched my own business to help other families deal with financial confusion and disorganization and have learned who the key players are that you should have on your support team.

The key advisors in addition to the doctor and banker who can be invaluable when caring for a loved one.

Debbie cared for her mom for ten years. Her mom would add her to the bank account, and within days revoked that permission. Most people don’t recognize dementia or notice memory issues when they don’t know you, so the bankers would follow the wishes of their client. Debbie kept a diary of her mom’s behavior and was able to provide that information to her mom’s long term primary care physician along with a letter of concern. This at least allowed the doctor to diagnose and recommend medications.

Debbie spent time meeting with the bank manager, social services, and lawyer so they were all notified of the situation. Sometimes it is all you can do. Similar to my family situation, guardian and conservatorship were recommended but for anyone who has witnessed this, it is often not something you want to pursue. You basically would be declaring your loved one incompetent in a court of law and in a public record. It can be very costly and if the individual hires a lawyer to fight it, the costs in our area are typically in the tens of thousands. There are many cases in which this is a necessity, but often it gets really messy when families end up in court.

When I was the caregiver, the financial advisor for my parent’s disregarded our calls. Most modern financial advisors know that incorporating the adult children into the fold early is a smart move. Most adult children will immediately move the money the moment they can when the advisor presented as more of a roadblock that a resource. I know we did when it was time to help organize my parent’s finances.

There are many others I recommend to help you along the way as illustrated in the diagram. If your loved one won’t let you help, spend your time building a bridge to other resources that may provide the support needed. For a few more posts related to this topic, follow the links below. Shared.

A Quick Way to Ensure You are Well-Represented What you need to be an effective advocate. Includes a free download.

Strokes, Free Will, and Frustration For All Some basic things you can do if you someone continues to drive when maybe they shouldn’t be due to medical concern.

Dreamwork Makes the Care Team Work I discuss the individuals that are key for keeping someone safe in their home.

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.

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.

The Link between Dementia and Mismanaged Finances

Eureka! What I recognized anecdotally for years is now published research that concluded financial symptoms of cognitive issues are surfacing up to six years before a formal clinical diagnosis.

SIX YEARS.

You are noticing changes in your own thinking, or you are seeing changes in a loved one that is concerning, but the primary care doctor just reassures you that you are “fine.” I witnessed this all play out with my parents for years. By the time we finally had a formal diagnosis, both of my parents were diagnosed with MODERATE forms of dementia. Dad they believed to be Alzheimer’s and my mother had primarily Vascular Dementia.

If you are having more difficulty with bill pay and managing the checkbook balance, it is time to share that with a loved one and your primary care physician.

Many financial mistakes were made for many years preceding this, including the decision to stop paying for long-term care insurance. Most of my Dad’s retirement accounts were unattended and forgotten.

For more insight into this visit this Washington Post Story.

After living the journey with my parents, and now supporting individuals and families as a daily money manager, I have seen and cleaned up many of these issues. It is rewarding, but sometimes takes my breath away, when I calculate how much money was wasted or lost over the years that could have been used to help pay for their care.

The research primary looked at payment delinquency. If someone is missing bill payments, when they were prompt payers before, this change could be a sign of a cognitive issue.

If you are experiencing this, or are having trouble making your checkbook balance when that has been a lifelong habit, it’s time to share this with a loved one as well as your primary care doctor.

The earlier you identify an issue, the more options and control you can have over it’s future course. Believed.

Whatever it Takes to Keep Our Loved Ones Safe

COVID frustration and fatigue. I am most frustrated that we don’t have clear information, guidance, and an understanding of what is safe or uniform protocols for managing the risk of spread. I don’t go anywhere without a mask because that much seems clear to me. I can’t fathom being the reason someone else is exposed to COVID.

Zoom and phone calls have had to do to stay connected with family, friends, and clients. Given the uncertainty, I’m gonna fall on the side of caution.

I know … I look MARVELOUS in a hair net.

I was happy to finally get to visit my client in person in their new community. During the screening process at the front of the community, I was asked if I had left “Virginia” in the past 14 days, I shared that I had been in Washington, DC — which is less than one mile from my home. It’s also less than 7 miles from the Adult Community I was visiting. Because I had been “out of state” I was given a hair net and a plastic smock.

I had never heard of these “covid precautions” but was fine to do whatever I needed to do so I could visit.

I’m a rule follower but find it hard to understand the rules. If it means it will keep someone else safe, I’m gonna do what is asked of me.

I hope you and your family are finding ways to stay connected and support your loved ones. I’m seeing how the isolation is impacting several of my clients and hope we have a clear way forward soon. Prayed.

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.

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.

Tips to Organize Your Personal Information / A Loved Ones Information

There are many of us that have lived or are still living as a caregiver for someone with dementia. Lori La Bey who founded Alzheimer’s Speaks invited me to her radio show to discuss getting organized as a tool to help give more control to caregivers as well as a how to get it done and connect with your loved ones.

You can view the interview on YouTube, or listen to the podcast on blogtalkradio, or visit her blog that includes the video and many other resources.

It took me a year to get a handle on all of my parent’s information so I could be a good advocate. While your loved ones may not be able to recite the information, now that we have more time on our hands … I hope you might use it to connect with your loved ones who may need some help getting organized. Here is a free copy of a collection checklist and guide to what you need to save and what you should shred. Shared.

After the Alzheimer’s Diagnosis: A Simple Checklist

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

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

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

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

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

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

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

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

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

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

You have been diagnosed with Dementia. Now What?

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

When the outcome wasn’t quite what you wanted.

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

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

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

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

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

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

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

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

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

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.