I know I shouldn’t give to door-to-door solicitors

On a visit with a client whom I help manage the checkbook, we found a charge on the credit card we couldn’t identify.  When we called to find out what it was, it was for a political group that championed the environment. Knowing my client loves the environment, but is also a card-carrying Republican, I asked if she could tell me which party the group most affiliated with. She replied “we are Democrats.” I could see my client straighten his back as he adjusted uncomfortably in his seat.

I asked how they got his credit card information and she shared that they had canvassers in the neighborhood and my client gave his credit card and offered a monthly donation of $100.  We requested to remove him from the monthly donation program and all future solicitations. I asked my client if he wanted to contest the initial charge and ask for a refund, but he declined.

When we hung up, he stated “I know I shouldn’t give to door-to-door solicitors.”

We all know it. But it’s easy to get caught up in the exchange. My client lives on his own,  no longer drives, so having a passionate individual knock on his door and talk about how we can help the environment can be incredibly appealing. He also has cognitive impairment and too easily writes a check … as we have experienced with several service firms that overcharged him lately.

The reality is that there are many service companies that have predatory practices. I have seen lawn companies in our area charging thousands of dollars for lawn care, plumbers that charge $500 to unclog a toilet, and HVAC firms that scare clients into replacing equipment before it’s needed.  This isn’t just an issue for individuals living with cognitive impairment, but for all adults.

If you are concerned your loved ones are being taken advantage of, I hope you will step in to help.  For this individual, we have set up approved vendors who know that we require an estimate and joint approval from his daughter in advance of any work. I will stop by on those visits with new vendors or during the visit to estimate the costs.

If you know someone who has been victimized, you should report it to the police as well as contact Adult Protective Services. Advised. 

Decisional Capacity and Dementia

NAELA version 3 16A diagnosis of cognitive impairment or even dementia does not mean that the individual has lost their ability to make or change estate plans. Start with the doctor who diagnosed them and ask if they can write a letter documenting their assessment.

We had an awesome geriatrician that got involved with my parents. He told me to get their plans updated immediately and wrote a letter stating that they still held decisional capacity. My parents did know and understand that we needed to update their plans.

Because we did not know how long we would need to care for them we insisted that all four of the adult children were named in the Durable Power of Attorney. The lawyer suggested against it stating that we should name one and have secondary, tertiary … However, we had that initially, and since my sister was listed as the primary, and me as the secondary, trying to get it recognized was headache inducing. I was the local adult child so needed to be the primary. I had to bring her resignation, then they often wanted to contact her. It just created more work when I was already overwhelmed.

We also had the benefit of caring for our parents in a unified capacity for nearly two years and have navigated a variety of bumps in the road. Should I move or die, I wanted to make sure one of my siblings could easily step in to help my parents.

Estate planning for incapacity is difficult and there are many landmines. I hope you find that you still have options even when dementia has been diagnosed. I also suggest you get a referral to a lawyer that specialized in Elder Law. You can do a search on NAELA.  It’s complicated and should your loved one lose the capacity to make decisions, the last thing you want are plans that fail. Recommended. 

44 Million Unpaid American Caregivers

taskoverwhelmingYup, those of us doing it are often surprised to find out our friends and colleagues are in the same situation. Most of us step in and do it quietly. We may share the critical events as they occur, but often our feeling that this is a family duty usually means we don’t share the many ways that caregiving impacts us.

I was recently interviewed about the experience and am honored to be included in the stories that appeared in the NY Post, and Moneyish.

For those of us that have lived it, we know it’s overwhelming. My wish is that more employers will start to recognize and consider programs to help those stepping in to help their loved ones. Hoped.

Herpes Vaccine Fighting Alzheimer’s?

herpes virusSo, not that anyone is going to opt for herpes, but several recent studies reported that taking herpes medication lowers your risk of Alzheimer’s. The study published in Medical New Today reported that Alzheimer’s risk is 10 times lower with herpes medication.

“In the herpes group, the risk of dementia was over 2.5 times higher
than in the control group.”

Two articles (Tsai et al., published in PLoS One in November 2017; Chen et al., published in the January/February 2018 issue of Journal of Clinical Psychiatry) demonstrate an increased risk of subsequent senile dementia (SD) development in patients with acute varicella zoster (herpes zoster) infection. 

I found this to be a fascinating read and who knows where the cure might originate? Here’s to a cure. Intrigued. 

I’m Overwhelmed and my Siblings Are Not Helping

SanDeigoERH
With my siblings and parents.

The local adult children will generally carry the larger load. They probably have spent more time with a parent and also see changes in their behavior that won’t be noticed on a phone call.  Often, the real test is spending time with the person.

Early cognitive issues just don’t get diagnosed very often. Of the those I know that were diagnosed early, the individual noticed and often had loving friends and family mention changes, and they pursued it. I will say when I went to the doctors with my parents and I asked about changes, the doctors all shut me down. It wasn’t until my parents showed up in two Emergency Rooms in two days and ended up seeing the same doctor that a doctor finally addressed what to me where very obvious cognitive issues in my parents.

What happened with my siblings was totally separate. I had noticed the issues and told my siblings. They didn’t see it. I visited often and tried to put my finger in all the dyke holes to help and was driving myself mad. I tried to illustrate to my parents the ways they were failing. While my Dad seemed to listen and even offered to go get cognitive testing, my Mom refused and debated every point. More often than not, I would leave my parents with both of us sad and angry. I eventually gave up.

As I was giving up, my siblings started to see and understand that our parents were failing. They came to town and we staged our first intervention. They had to talk me back into helping. Thankfully, we all got along but we still had many issues to address.

Set up Conference Calls on a regular schedule. 

I started this blog in part for my mental health, but also to document what was going on and not have to tell 3 siblings and extended friends and family what was going on. However, my siblings and I really needed to have a dialogue about what was happening and how we might help our parents. I set up the calls using a free service called TalkShoe. One of my brothers would set the agenda. We started to talk through ways they could help.

Give each Sibling a Job

We didn’t do this right away, but having the conference calls helped me share key issues and allowed my siblings to ask questions and be involved. As we had issues, we started to figure out who could step in to help on key tasks. We needed to sell their townhouse, review the contract at their retirement community, arrange to clean out/auction off the furniture they no longer needed … among managing the day-to-day.  They also started to rotate on regular visits since living with them helped understand what was really occurring since they could no longer accurately share news on their day.

Take on the Onerous Tasks

When my parents kept driving after their licenses were revoked. I tried to hide the cars. They found them. It was one of the many times their resourcefulness and ability to do things astounded me and my siblings. My brothers came to town and took the car keys away. They told them why they were doing it and drove the cars away. They stepped up and for once, I wasn’t the rotten kid.

Over time, my siblings saw how much I was doing to help my parents. They knew I left my corporate job because the strain of raising kids, caring for them, and being a full-time employee was wiping me out. At some point, they suggested that I get paid for my time. It wasn’t going to replace a salary, but it was welcomed as I transitioned and started working on building MemoryBanc to help other families be better prepared for the rest of their lives. What I know now is that many estate plans now include provisions to compensate family members who step up to help. We were sure to include it in our updated plans.

I do know that not talking is a great way to foster frustration and hurt feelings. What we did recognize is that we were losing our parents, the last thing we wanted to do was lose our sibling relationships too. I hope that you and your family will start by scheduling regular calls to talk about how to help your loved ones as well as each other. Suggested. 

A Calm Demeanor is Infectious

breathing.GIFEarly on, when I knew something was wrong with my Mom’s thinking, but there was no medical diagnosis and my siblings didn’t see it was the most challenging. I would try to point out my Mom’s inconsistencies or “incorrect” memories to help here see that something was not right with her brain. That NEVER went well.

She would just get angry with me and a fight would erupt.

What I would learn years later is that a high percentage of  individuals that have a stroke have Anosognosia which is a deficit of self-awareness; a condition in which a person with some disability seems unaware of its existence. Mom had a minor stroke that left no physical reminders, but impacting her cognitive abilities. But she could not recognize it.

I eventually learned that the attitude I arrived with when I visited my Mom was quickly absorbed and returned. If she was in a cantankerous mood and I found myself loosing my cool, I would excuse myself to get a drink, take a few deep breaths, or go to the bathroom — anything to break the pattern of where we were.  Eventually, she would usually transition to calm.

On those days that I arrived stressed or frustrated, I would only feed her anxiety. It took me a while to practice and get it right, but I learned how to better meet my Mom where she was … and even help her find calm on those days that her dementia wanted to take her elsewhere. Learned.  Continue reading “A Calm Demeanor is Infectious” →

Cognitive Life Expectancy and Women

dealwithitIn 2010, a 65-year-old woman could expect to live 14.1 years with good cognition, 3.9 years with mild cognitive impairment and 2.3 years with dementia — according to Eileen Crimmins, AARP chair of gerontology at the University of Southern California’s Leonard David School of Gerontology. I love data, and a recent article has many key facts that should encourage us to better plan for the rest of our lives.

The generation above us is failing. I saw it with my parents who planned well conventionally, but had no idea their bodies would outlast their brains. The stats sometimes lead us to believe it is not happening at the level of frequency I see it happening to my friends families.

We all should prepare for the worst, be it our bodies outliving our brains, or our brains outliving our bodies. Most likely, we are all going to need assistance before we take a celestial departure from this earth.

The stats on what a 65 year old woman can expect, were one of many key facts in an article by Judith Graham Research find seniors seem to enjoy longer brain health than in the past.

Other notable key facts:

  • Of Americans 65 and older, about 20 to 25 percent have mild cognitive impairment while about 10 percent have dementia, according to Kenneth Langa, an expert in the demography of aging and a professor of medicine at the University of Michigan
  • Notably, college graduates can expect to spend more than 80 percent of their lifetime after age 65 with good cognition, according to a new study from researchers at the University of Southern California and the University of Texas at Austin . For people who didn’t complete high school, that drops to less than 50 percent.
  • A new study from researchers at the Rand Corp. and the National Bureau of Economic Research finds that 10.5 percent of U.S. adults age 65 and older had dementia in 2012, compared with 12 percent in 2000.
    • The percent of people affected is declining which is great news, but the bulge in those over 65 means that more people in total will have dementia.

A few facts can go a long way. I hope these facts will help you and those you love plan well for the rest of your lives. Shared. 

How do I help Mom remember Dad is Dead?

cole indoor 2017 - ocean breeze 4x4The weeks after my Dad died were one of the worst transitional periods in navigating as a Caregiver for my Mom with Vascular Dementia. I was shocked and devastated at his quick decline and death, and my Mom, who no longer had any short-term memory, kept asking for me to take her to visit him.

I didn’t want to have her keep reliving his death, but I felt like I was always having to let her know he passed away. She was living in Assisted Living with him and really liked it there when he was alive. However, she didn’t do well after he died. She was out looking for him in the community and getting into fights with the other residents.

What I realized was that there were many things I could do to help her know about his death and help her try and process the grief. First, and I’m still not sure why we did this, but after dad died, we all gathered around his body and had the hospice nurse take a picture. I printed out copies and put them in her apartment with the date so she could see we were all there at his death and had said our last good-bye. Remarkably, this really helped her process his death. She could see all the kids were there and by her side.

Once the obituary ran, I put those copies up along with the final picture. After the burial service at Arlington Cemetery, I added more pictures of the service and all of us together. I wanted her to know she wasn’t alone in her grief.

Dementia is such a cruel disease.

I remember talking with my mom over a year later and telling her about watching my son at a track meet. My Dad was a hurdler for West Point. She had one of those out of the blue clarity moments and says “Oh Vald, would have loved to be there to see him run!” I hadn’t heard my Mom talk about Dad for months. I was elated and gut-punched with grief all at once. Remembered.  

How do I help from far away?

LetmemakemistakesA good friend called and wanted to know how often she should be visiting. Her sister and brother live near mom but she’s trying to chip in and do her fair share.  Is visiting every month, or every other month enough?

There really is no right or wrong answer. There is just the answer of what is right for your family.

My friend has been hiring and screening caregivers, and picking up extra projects (like getting a hospital bed at home). It turns out that her sister is overwhelmed and mom is only getting more prickly. She doesn’t want the help. She fires everyone that shows up to help for everything–from cutting the grass to helping get out and go grocery shopping.

I let her know it might be time to step back and let mom try and manage on her own. Sometimes you have to let them succeed or fail. She probably doesn’t believe she needs the help she is getting. It’s hard to do.

What if it were you? How might you like it if other people were making these choices for you–much less your own kids?

I know that she and her sister and brother are doing it out of love. They very much respect their mom. However, what you do thinking it is welcomed might not always be.

I also shared how I changed the language I used when my mom needed help, but didn’t recognize it. Could she suggest the person showing up to help around the house is one of her high school friends that wanted to visit with her mom? Could the person cutting the grass suggest he is neighbor home for the summer and just noticed that the grass needed a mow?

It took me a while to adapt and create situations that my mom could accept. Might something like this work to get her mom the need she helps but maintain her sense of self worth? I reminded her of all the things her mom lost. Her husband is gone, her sister took over her checkbook, she had to give up the car keys after the fall and hip surgery … what does she have that gives her purpose and meaning?

It’s easy to arrive and offer help, but we often neglect to recognize the need for our loved ones to maintain a sense of self-worth.

The question about how often to visit isn’t the real issue. But I know she is visiting her mom and talking with her siblings frequently. That is on top of her full time job … and her 7 children! I commend every adult child who is working to be involved. Their loved one is better off than the majority of the seniors in the United States. Appreciated. 

What Happens When You Fail to Plan

For those of us caring for loved ones, we know what happens EVEN WHEN YOU PLAN REALLY WELL!

I have a personal mission to make sure every adult over the age of 18 is in the habit and knows the value of Power’s of Attorney. These are legal powers you should set up that will help you while you are living. Please visit with a local estate lawyer do this — since Consumer Reports found that several of the online tools would fail to work in several cases. It’s a few hundred dollars, but WORTH it.

John Oliver (HBO) recently covered the story of a couple that was impacted by Guardian proceedings and that bleed their retirement plan dry. For some hilarity … and scarity that will make you think more seriously about planning, check out this segment.  Stay to the end for some awesome cameo’s!

JohnOliver

Giggled. 

Is keeping Mom at home the right choice?

homesweethomeI know how often I second-guessed the choice of where my Mom lived. My siblings and I often discussed how we could better use the money being spent on their care community that never seemed to be the right fit for them once their dementia really changed their thinking and behavior.

Now that I work with families who are usually not in the metro-DC area and want someone to help their loved one who is still living in their home, I wonder when is it the right time to consider moving them into a community.

In general, the earlier the move for someone with cognitive issues, the better. They can make friends, find activities they enjoy, and benefit from the social activities that can keep the cognitive decline at bay by staying engaged.

However, I understanding viewing the move from their beloved home as a major issue that most older adults decline and often fight against.

I battled with myself the last year of Mom’s life. Should we move her into our home, even though she made it clear over decades that she never wanted to live with one of her children? I knew it would be a major ask of my family to move her into our home. She would have needed someone at the home to help her when we were working. I realized later that she also would not have had the benefit of all of the activities for engagement within the community. I wish I could have played out both options and reported back to you.

Every family needs to make the best choice for your circumstances. Please know that the fact that you are involved and engaged is more than most adults with dementia receive. Many families detach, others fight over the choices, and for dozens of other reasons, their loved ones don’t have the benefits of an advocate who is watching out for them. Weigh your options but be satisfied that you are making the best decision you can with the information you have right now. Considered.