Category: Early Signs of Dementia

What to do if my siblings won’t help?

barney-stinson-self-five
Do what you can to support yourself.

A reader made a fair point when I posted I’m Overwhelmed and my Siblings Are Not Helping (Thank you Monique).

My siblings helped … eventually. I felt very alone the first few years when they didn’t see the issues I was seeing regularly because I was the only one that lived near my parents. I start from the premise that if you try, you may find that your siblings may join you. So first, I hope you will give them the chance to step up by over-communicating and for asking for specific help.

I had given up before my siblings stepped in and bonked me on the head to reengage.

Should your siblings fail you, do the best you can and move on. We can only control what we do, and the job you have is difficult enough. If you are in this place, my suggestions are to:

  1. Find a local caregiver support group. Go online and search and you will be amazed to find support groups for children, spouses, and even by diagnosis.
    • Try the Alzheimer’s Association, they usually offer all types of support groups and you search by zip code.
    • Contact your county Area Agency on Aging. They should know of some local resources.
    • Contact the local retirement communities, assisted living, and memory care communities — they usually host the support groups and know what is offered locally. Usually someone in the sales department can help you.
  2. See if there is a local village that can help your loved ones and provide recommendations for local vetted resources.
  3. Contact an Aging Life Care Manager.  Nurses and social workers by training, these individuals can help navigate health issues and find quick solutions to care needs. While they do have an hourly rate from $150 to $200, they might be able to find a solution to something that might take you days and weeks to navigate. You don’t know what you don’t know and it’s nice to have an expert on aging in your back pocket.
  4. Meet with a Daily Money Manager. They typically specialize, and you will want to find one that serves seniors. I have been doing this service for other families after my caregiving journey ended. I focus on the financial issues like paying bills, reviewing invoices, and maintaining the home and reporting back to adult children who aren’t near mom and dad.  I find that within the first month I find a variety of ways to eliminate robo-calls, save hundreds of dollars on unused services, and even access unused benefits for care services. I can also make a direct introduction to the right solution, be it a personal care assistant, elder-law attorney, or auction house.
  5. Tell your siblings what you are doing and offer a summary of accounts … and oh, yeah, compensate yourself for your time if you are able to do so. The reality is that caregivers on average give up over $324,0044 in lost wages and retirement compensation. My husband and I added in compensation for those individuals who are supporting us a DPOA and trustee — and are working toward ensuring that we can afford to compensate our loved one for stepping up because we know it not only can result in lost wages and opportunities, and is a job that would be compensated if we hired someone to do it for us. Thanks for your comment DW, I can’t believe I forgot to include this!

Whether you are an only child, or your siblings have let down mom and dad and aren’t stepping up to help, find ways to support yourself in helping your loved ones.

I regret not bringing in more help when Mom was alive. Instead of spending time following up with the community nurse, I could have been out enjoying a meal or and event with my Mom.  Hindsight is 20-20. Reflected. 

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. 

No good deed goes unpunished

kaywparents2013The first year of my nearly daily involvement to help Mom and Dad was horrible. I wanted to help them, but they could not recognize that they needed help. They could see that their spouse was not doing well, but they did not recognize it in themselves. While my Mom would complain about Dad’s memory, they never betrayed each other.

I would try to offer logic and reason, and inevitably, I would leave frustrated, and often in tears.

One day, my mom called to ask me to come over to help with the checkbook. When I arrived, she looked at me like I had grown a second head and berated me for suggesting she needed help with the checkbook. My Dad sat in his armchair watching the entire heated exchange. I felt like a teenager again getting lectured. To examples I gave, my Mom would deny and suggest that I was making it all up. I was so angry and frustrated. How could I have believed my Mom really wanted my help. I left in tears.

That evening around 9:30 PM, there was a knock on my door. My Mom was there with a gift. She told me they were sorry that I was so upset and had been driving for hours. She told me somehow, they ended up in Baltimore, MD. Their home was in Arlington, VA and I lived 15 minutes away in McLean, VA. We hugged and at that moment, I realized that the advice the Psychiatrist gave me to “be sneaky” was the only way I would truly be able to help them.

I had to work even harder to help them without it being noticed. When I visited, I would pick up the piles of mail and stick them in my bag to review later. At that point I started to copy account numbers and information to get a better handle on their finances and cash flow. That pain and anguish lead me to create the MemoryBanc Register and transition to a career as a Daily Money Manager.

Things got easier and eventually, my Mom would thank me for helping take care of the bills and finances. That would be more than two years later and after my Dad passed away.

I would later recognize how much I missed the Mom that would debate me. The dementia stole away my parents bit by bit, even the parts that drove me crazy. They were unable to change, so I learned how to adapt to meet my parents where they were — even when I was trying to do a good deed that would never be recognized. Recalled. 

 

When off-label use goes bad

SeroquelI remember when they recommended this drug for my Mom a few years back. She had vascular dementia and was getting very agitated. The staff was having a hard time redirecting my Mom. They thought this medication might help.

A recent story in The Washington Post covers some of the issues as it related to off-label use — One of America’s most popular drugs — first aimed at schizophrenia — reveals the issues of ‘off-label’ use. This is just one of a number of stories I have seen about using varied drugs to “temper” (for lack of a better word) the behavior of residents in care communities.

Before this, when Mom was still with Dad in Independent Living, the doctor suggested and prescribed Ativan. It is at least prescribed for anxiety. However, my Mom would refuse to take it so when I knew events might bring on anxiety for Mom, I would put it into her Coke. I must admit that I’m not sure that was any better maybe than prescribing off-label uses for different drugs.

I do know that the one time my Mom freely took Ativan was before my Dad’s funeral. On that one day, she wanted a pill to help with the anxiety she was feeling.

Over time, I learned to better interact with Mom and could usually redirect any pre-anxiety events. After the first year of adapting, I never even considered the need for any behavior medication.

Did I change?

Did Mom change?

Did moving her to a community focused on caring for individuals with dementia eliminate the circumstances to bring on the anxiety?

I will never truly know. However, I do feel that the first year as you and your loved one is adapting to the changes in your relationship, and they are feeling in their lives is the most challenging stage.

Just know that they need an advocate, and the more you know the better. Confessed. 

There is no bottled miracle for memory

vialofpillsBeauty products have been referred to for decades as “Hope in a Jar.” I feel that same desire for memory loss cures and prevention. However, the scientific studies continue to find time and time again that none of the promises made by the supplements are working.

What a recent story from Consumer Reports suggested to do instead:

  • Brain Workouts.  Do something that will “enhance reasoning and memory-abilities” like learning a new language. They report that training can help processing speed and reasoning, but made sure to exclude “computerized brain games” from this recommendation.
  • Exercise Your Body. Physical activity can delay or slow cognitive decline, but not prevent it. I noticed for my Dad with Alzheimer’s how much better he did day-to-day when we got him to the racquetball court.  I think most of us recognize the feeling of well-being we get from exercise, even though we may curse it while we are in it.
  • Manage Blood Pressure. Reducing your risk of heart disease and stroke help since they are major risk factors for memory loss.

However, I do see reports and hear from my colleagues how some new treatments are showing some promise with their clients. As I interpret it, the idea is to basically clean your body of toxins that might be impacting your memory. After seeing the number of kids with nut-allergies mushroom in the past two decades, I have been wondering how the ways in which we package and store food and the products we use on our skin might be impacting our health.

I’d love to hear from caregivers if you have seen good success with one of these newer treatments for your loved one. Curious. 

Impostor Scams Net $328 Million

scamalertA girlfriend just shared how her mom, who is in good health and of sound mind, received a call that she (my girlfriend) had been kidnapped. They wanted her mom to immediately drive to a check cashing place and wire money for her release. Her mom tried to text and call on a second phone, by her daughter was in an appointment with her phone off.  Thankfully, her mom navigated it well but it was a quite a traumatic event. Her mom lives in a condo and kept the people on the phone while she went down to the concierge who called the police and helped. However, she was wondering if her mom was really of sound mind if she fell for this.

I confirmed to her that really smart people can be victims of this scam because the fraudsters are so good. In fact the FTC reported that the kidnapping scam is the top “Imposter Scam” for 2017 and cost Americans at least $328 million.

For those of us caring or concerned about loved ones that live alone, I hope you will consider how you can implement a call screening service or device to help eliminate these callers. I implemented this system in my own home and never answer an unidentified call at home or on my mobile phone.

As a Daily Money Manager, I work with older adults in their homes and one of the first things I do is implement a call screening solution. In metro-DC, I can implement Nomorobo which is free service from Verizon. The Nomorobo website can help you find out if you can get their free service in your area.

If you can’t get a service like Nomorobo, you can purchase a call blocking device like Sentry 2 that lets you blacklist numbers. It does require that you tag calls to the “blacklist” to block, and you can also add numbers and only get calls from those on your “whitelist”. It can fill the need but does require assistance to be effective.

Two other simple options include:

  1. Sign up for “Anonymous Call Rejection” with your local carrier. This service rejects calls from anyone that has blocked their caller ID information. It is usually something you can enable using *77 but varies by provider.
  2. Suggesting they never answer the phone if they don’t recognize the number.  A doctor, or friend will leave a message and they can easily call back

For many, the comfort of home and the costs can make aging in place the best choice. However, there are many things to consider to make sure our loved ones are safe. Advised. 

For more on this topic, check out this story:

How to Avoid Becoming a Victim of a Virtual Kidnapping Scam The Washington Post

Another reason to eat our veggies!

leafygreensResearchers at Rush University Medical School in Chicago found that “one serving of leafy greens a day may slow brain aging by 11 years.”  I initially read the story in The Washington Post that reported “eating as little as one and one half cups of lettuce daily — or a bit more than half a cup of dark leafy greens — may delay the decline in memory and thinking skills that occur with age.”

For those of us with family members with any form of dementia, any and all proven methodologies are gladly received.

The report from Rush states that “cognitive abilities naturally decline with age” which is not the same as the wording in the The Washington Post story that gives you the impression that our memory will decline with age. I see and hear people buy into this belief too often.

In general, our processing speed does slow down staring in our 50s, but memory loss is not a normal consequences of aging. To quote Dr. Green of Total Brain Health, most of us have a “getting problem, not a ‘forgetting’ problem.” There are many things we can do to rev up our recall, and lots of reasons why we might not remember something which doesn’t mean we are showing early signs of dementia.

If you are having memory concerns, go see your doctor. If they don’t take your concerns seriously, ask for a referral to a neurologist. There are many mild cognitive issues that are reversible.

I watched as the doctor’s dismissed the overwhelming number of early warning signs for my parents and hope everyone has a better chance to battle and weather the life-stealing  beast of dementia.

Now off to the store to buy me some greens. Hungered. 

For more on the full report, you can visit: Neural and behavioral bases of age differences in perceptions of trust.  In summary:

“Older adults are disproportionately vulnerable to fraud, and federal agencies have speculated that excessive trust explains their greater vulnerability.

Two studies, one behavioral and one using neuroimaging methodology, identified age differences in trust and their neural underpinnings. Older and younger adults rated faces high in trust cues similarly, but older adults perceived faces with cues to
untrustworthiness to be significantly more trustworthy and approachable than younger adults. This age-related pattern was mirrored in neural activation to cues of trustworthiness. Whereas younger adults showed greater anterior insula activation to untrustworthy versus trustworthy faces, older adults showed muted activation of the anterior insula to untrustworthy faces. The insula has been shown to support interoceptive awareness that forms the basis of “gut feelings,” which represent expected risk and predict risk-avoidant behavior. Thus, a diminished “gut” response to cues
of untrustworthiness may partially underlie older adults’ vulnerability to fraud.”

It’s a “Nothingburger”

NothingburgerIn the early phase of my parents slide into dementia, my dad would use this term a lot. As I flipped through The Washington Post this morning and saw the word in a headline, I smiled as my stomach clenched. I grew to hate this word. It felt so dismissive of my concerns.

While the entire caregiving journey is a tough road, I found the early phase the most difficult. Everyone is uncomfortable as you figure out how the dance will flow. In some families, I see as they freely ask for and accept help. In others, especially when the couple is still together, the adult children are usually shut out.

My parents knew something was wrong with the memory of their spouse, but neither recognized that they too had problems. My dad would usually listen, but my mom would take each statement and debate each point–in most cases I was told to stop lying or making up these horrible stories.

To keep the peace, my dad started to just truncate anything I said by stating “It’s a nothingburger.”

I had to wait for the failures to be called in to help. There were several times they would call me to come help and when I showed up my mom didn’t remember calling and thought it presumptuous of me to think she needed help.

When my mom started repeatedly calling to help get dad off the floor, I would run over. Until the day my husband asked me if I realized that I was prioritizing my parents over my own kids quite often. I was taking my kids to get flu shots and decided that could wait. With that one question, I realized I was enabling my parents by showing up and the next time mom called, I told her to call 911. That trip to the hospital made it clear to all of us that our parents were really unable to navigate through their day. The hospital recognized that both parents had cognitive issues.

Everything did not by any means become easier, however, that incident helped my siblings and I to navigate the next few months. It was at least two more years before my parents were in Assisted Living, but sometimes you have to hit bottom before you can start figuring out how to move forward. Revisited.

Do your loved ones have an Umbrella Insurance policy?

pexels-photo-100671.jpegThanks to Barbara who asked about concerns she had with wording in a renewed insurance policy. I suggest that all families who are helping or caring for someone with mild cognitive impairment or dementia consider the addition of an “Umbrella” policy.

In a Kiplinger article titled Why You Need an Umbrella Policy, they share that “adding extra liability coverage to your auto- and homeowners-insurance policies can protect your finances from expensive lawsuits.”  Umbrella policies are designed “to help protect you from major claims and lawsuits and as a result it helps protect your assets and your future. It does this in two ways: Provides additional liability coverage above the limits of your homeowners, auto, and boat insurance policies.”

One of my super-powers that I used to my advantage during my parents journey into dementia, was a sense of possible future landmines. My parent’s had auto- and homeowners insurance, but I had a major concern that the might do something that would jeopardize their retirement savings because of their cognitive status. Thankfully, I suggested to my dad that he add an Umbrella policy to their insurance and he agreed that it would be a smart protection given how litigious the world had become.

There was a period of about 3 months when my dad was driving without a valid license. Their doctor had submitted the paperwork to have both of their driving licenses revoked. However, they let me read, then ripped up the notice from the Division of Motor Vehicle that notified them of the license revocation and acted like it never existed. For some reason, they thought only my dad had his licenses revoked, even though they both received the letter (just a week apart). My mom would tell me that if the police pulled them over she would tell them “I was driving but got a cramp in my foot, so my husband took over so he could get me home to take my medication.” Yeah, my parents got really crafty in trying to maintain their status quo.

I was pretty sure the auto-insurance wouldn’t cover them since their licenses were revoked, so I prayed that nothing would happen. If it did, I hoped the umbrella insurance would help protect their assets to pay for the years of care they would be needing.

Later, at a happy hour at my parent’s retirement community, my dad fell over onto a woman and sent her to the ER. Thankfully, she knew my dad and she nor her family pursued a lawsuit. However, I could only imagine how quickly all of their assets could disappear in legal fees and an award.

Two things to do to protect your loved one and their assets:

  1. Contact your insurance agent and have an open discussion about your concerns to find the type of policy that could best protect you and your loved ones.
  2. Contact your estate lawyer. A Trust might be a solution to help protect your assets …. but I’m NOT a lawyer …. so please find a local elder care attorney who can help you navigate the coming years.

Dementia is a cruel beast and it steals so much from the individuals it preys upon, and the loved ones caring for them. I hope the suggestion on how to deal with practical issues to protect your loved ones will help you and your family. Experienced.