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.

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.

When to claim Social Security?

A report released estimates that “almost all American retirees claim Social Security at the wrong time … which means they will miss out on a collective $3.4 trillion in benefits before they die.”

Oooaaaaffff. That hurts.

Especially when we are living longer and care costs are escalating. Most American’s don’t realize that many care costs are not covered by their medical insurance. Help in the home (dressing, bathing, eating, toileting) is not covered by medical insurance, but is why long-term care policies are offered.

The last year of my Mom’s life cost over $200,000 in 2015. That included the memory care community she lived in (it wasn’t super fancy, it was just the right community for her) along with the additional costs for a personal care assistant added up quickly. Unfortunately, my Mom was unsteady on her feet so we had to pay for additional care when she was awake so she didn’t keep trying to walk and then fall and end up in the Emergency Room.

Social Security offers a retirement calculator which I recently used with my sister. It made it easy to see when to turn on her benefits.

If you work with a financial advisor, I would contact them to learn how and when turning it on makes the best financial sense for you. Talk to you friends and family to learn how they made their decision. This is a situation in which talking about money and the choices we make can be great learning experience.

Let me know what you decided to do!

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.