Dementia and Covid

I think we all know that this experience will change how we live, work and play. For many of us that work primarily with older adults, we are seeing how some of the changes may make growing older better for all of us. I look forward to these changes with hope, even though right now, things are more challenging to manage as we adapt to physical distancing.

In the past two weeks, my neighbors and I have all realized that a couple living on our street is in dire need of support. The woman has been knocking on my neighbors door (she is a doctor) at all hours of the day asking for her to check her heartbeat. There has been an EMT visit (the man fell down the stairs), and someone also called the police.

The reality is that none of us can help someone who doesn’t want or recognize they need help. There have been calls to their son who at least helped them set up support from a home care service. There is only so much you can do for your parents who believe they are fine and decline help. The son lives states away.

Yesterday, the home care assistant didn’t know when the woman left the home. When my neighbor took her back home, the home care assistant yelled at her about leaving.

For those of us who are caring or have cared for someone with dementia, we recognize that while they may not remember a conversation, they do seem to hold onto emotions. I am guessing it won’t be long before my neighbors insist the home care assistant gets fired. Who wants someone coming into their home and yelling at them?

We are in a difficult time and many of those performing the duties of home care are not paid well and are putting their lives at risk. However, we also need to find ways to ensure the person in our loved ones homes are trained to help them and I’m afraid that some families are not getting the right support.

So what can you do if your family is in this situation?

  1. Randomly call your loved ones and even have them just leave the call with the line open* so you can hear what is going on in the home and how your loved one(s) are being treated … and how they are responding. If you hear something of concern, reach out to the home care agency and ask for them to address it with the caregiver. I cycled through a variety of individuals before we found the right fit for my mom.
  2. Contact an Aging Life Care Manager. These professionals are trained to help find the right care and be the onsite advocate if you are unable to travel to your loved one. They are not inexpensive, but when it comes to the service and support, I have found they are worth every penny.
  3. Move your loved ones in with you, or move in with your loved ones. There are a few families that have made this choice because they felt it was the best decision for them. This can be a huge hardship and commitment.

    Just know you will make the best decision you can with the information you have. Be at peace with the difficult choices you are and will be faced with. Your loved ones are lucky to have someone in their life watching over them when they need it. Reassured.

*Your loved one doesn’t understand your request? You could ask them to put down the phone and go get something, like an Aunt’s address or phone number because you want to send them a note. Be creative.

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.

Create a Roadmap to Your Important Information

The “Save It or Shred It” guide has been updated 2020 and you can download a free copy of this white paper to help understand:

  • Why it is important for every adult to organize their personal information
  • Which papers are important to gather
  • What information you should document/record
  • Which papers to keep and which documents you should shred

The reality is that MOST of us will need someone to have this information so they can help us. Many of you have probably already experienced this. You need to step in and help someone, and the hardest part is getting a handle on the information you need to help them.

When you are done, I promise you the roadmap you create will save you TONS of time and frustration.

Get your free copy here. Offered.

If you want a tool that will walk you through this process, you can order MemoryBanc: Your Workbook for Organizing Life on Amazon or visit my company page to learn about the other format options to include a digital version and binder edition. 

Aging in Place and Social Distancing

I am thankful that right now I don’t have to balance my children’s needs, my client’s needs, and my aging parents. My parents have both taken a celestial departure from this earth, but in just imaging them being around now … I feel my chest tighten.

I am working with several families who have a loved one that someone from my company works with in the metro-DC area. Our goal is to support our clients by assisting, managing in tandem, or by just handling the day-to-day financial matters (bills, home maintenance, long term care and insurance claims). After caring for two parents who had different types of dementia, I am very attuned to how much it means for them to live their life and manage their affairs.

So here we sit with several clients who still live alone in their homes. Some have stopped all external visits from health care managers, cleaning services, and personal care assistants while others doubled down and now have 24/7 help and care in their home.

There is no right or wrong. There is just right for each individual.

The initial two week social distancing came and went. Now we are looking at near isolation for some or escalating care expenses for possibly three months. I am curious to see how we all emerge and adapt after this experience.

What I have noticed in working with adults with cognitive disabilities is that the more they interact with others, the higher they function when we sit with them to do basic bill pay tasks. However, most of those isolated at home are now getting regular calls from the family, and are having to manage in their home all on their own. In calling many of them regularly, they are doing fine and have managed to adapt to our virtual support.

Will any of us win this experiment? Will those on their own emerge stronger after showing us all how they can manage? For those that could not manage on their own, will they do better than those in communities when it comes to exposure to Covid-19?

All I know is that we are all doing the best we can with the information we have at this time, and within the resources we have at our disposal. We may just see how well our American ingenuity shines at a time when modern medicine can’t protect us.

I’m looking forward to being able to see this one in my rear-view mirror. Wondered.

The Covid-19 Scams Begin

The Office of the Attorney General in Virginia just sent out a notice warning the community of coronavirus in-home testing scam.

A resident of Virginia Beach contacted their health care company to verify that it was them offering in-home visits for coronavirus testing. The scammer called the resident and told them they may have been exposed to someone with coronavirus (COVID-19). The caller then asked to come to the resident’s home to conduct a test.

The resident was appropriately suspicious and contacted her health care company. They confirmed this was not something they are doing. It was then reported to the police.

As we are adjusting to many changes in our own lives, we need to still be on alert that the scammers seem to be swift and nimble adapting. My 17-year old said she almost fell for an online shopping site with styles she loved and prices she could not believe. Before she started to order she googled the business and found no reviews or ratings — but then found a story about how many “online retailers” are popping up in hopes of a quick scam from unsuspecting online shoppers. Warned.

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.

Help with Healthcare is a Great Place to Start

Staying at home has given me a lot of time for Spring Cleaning. I finally went into the last box of my parent’s papers this weekend and found this note from my Mom.

When my parent’s were still coming over for dinners on Friday and we recognized something was amiss, but were unsure what, my Mom asked if I would join her for the annual physical. She had mentioned that they were having trouble keeping up with the medicines and she was worried about my Dad … would I join? This was the note she gave me summarizing all of their medications. I attended and sat quietly and watched as concerns were raised and then mostly dismissed.

Within a year, my mom had a minor stroke and she readily accepted my rides to the doctor. However, this was the beginning of the trouble in some regards. My Mom was in disbelief that she had a stroke, and started to challenge that I was making it up. She began to debate me on the way to the appointments when I would simply report that we were going to see the neurologist. When she asked “why” and I reported it was because of her stroke, she would guffaw in disbelief. At the appointment, she argued with the neurologist. Good times. ; <

I wish I had know about Anosognosia. From the Stroke Connection: “Anosognosia (pronounced an-a-sog-NO-sia) refers to a person’s lack of awareness of their own motor, visual or cognitive deficits. It can happen in people with stroke, traumatic brain injury, multiple sclerosis, Parkinson’s disease, Huntington’s disease and Alzheimer’s disease.”

Looking back, I realize that even just stating that she has a stroke created an emotional response in my Mom that left her feeling like I did not have her best interests. She became very protective of her information and in return, insisted that she could manage her own affairs.

I learned over time that my parent’s responded with emotion to information or events. Any information citing they were unable to manage their own health and welfare pushed them into a defensive mode. If I arrived for a visit stressed, they would absorb my anxiety and we would have a terrible visit.

During this time my siblings and I watched as:

  • Their licenses were revoked and they continued to drive their cars;
  • They failed to pay their bills regularly and ran into issues with water and electricity;
  • Ultimately, their retirement community threatened to kick them out if they would not move from independent into the assisted living community.

I was ready in the wings when it was time to act, but it was more than two years before I was allowed back in to help. When I did re-enter I had learned a lot about how best to support and respond to my parent’s needs.

The current state of affairs may be a bridge that opens to invite you in to help. While many families are isolating themselves from their loved ones to protect them, others are including them in the shelter in place orders.

May you and your family find peace, joy, and common ground on which to move forward. Wished.

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.

How are you dealing with “social distancing” and caregiving support?

I’m involved with many families who have a single adult parent with mild to moderate cognitive issues who wanted to stay at home. Now we are trying to manage care and minimize risk. What are you doing?

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)

Will the bank accept your Power of Attorney?

As the adult family caregiver named as power of attorney, I had an incredibly difficult time getting my Mom’s banks to recognize her power of attorney so I could officially support her. It was less than 2 years old, I provided the original, but since my Mom was alive, they wanted her to come with me to the bank and to sign their power of attorney documentation.

My Mom was so unsteady on her feet she needed a wheel chair. It was difficult and uncomfortable for her to go out. She never wanted to be in a wheel chair and half our journey’s out were battles over getting her to sit down. She was also incredibly frail and the task of just getting into the car would wear her out.

Wasn’t that the point of the Power of Attorney (POA)? I was very frustrated when the banks just failed to recognize my POA. In Virginia I could have pursued a legal suit … but I was already busy enough as my Mom’s family caregiver.

I am not alone as The New York Times story “Finding Out Your Power of Attorney is Worthless” confirms. Sadly, it is not just an issue of the Power of Attorney, but family members are still reporting difficulty getting banks to release funds after death. Here is a recent NBC News story about how difficult it was for Maggie Mulqueen when working with Citibank.

For years, I just used the online banking access to manage my parent’s finances. When I ran into issues, I would either have my Mom sign checks to move the money or just shut down the accounts. When USAA wouldn’t recognize the POA, I didn’t pay to renew my parent’s insurance and moved the account to a new insurance provider. There are some ways to end-around the roadblocks, but it seems ridiculous to have to out- maneuver the bank.

This past week, I walked into two banks to establish myself as Power of Attorney for a client. I need to get her past banking history since no taxes were filed since 2017, and need to be able to sign checks on the days when she is too weak to help. Remarkably, both banks (SunTrust and Wells Fargo) were extremely accommodating. I even had a note from the doctor stating she was unable to manage her own affairs, but did not have to provide it.

I learned two things:

  • You can’t have an active credit freeze. As Power of Attorney, they will create a new bank profile (requires a credit check) for you that is attached to the individuals bank account(s).
  • They view adult children differently than professionals that act as Powers of Attorney.

My logical brain understands this, but my journey as the adult child who was trying to help my parents DETESTS this varied treatment.

Maybe things are changing? Adult family caregivers … what are you finding? Curious.

THANKS to Ashley — Good food for thought and was a tactic I used when I was caring for my parents. Her lawyer suggested she not disclose the information to the bank. Thankfully, her parents added her to their bank account. After I hit a few roadblocks, I just set up online access to most of my parents accounts and did as much as I could digitally and in the spirit of their Power of Attorney. When I hit roadblocks and went to the bank with my POA was when I learned how difficult it was to get them to honor it.