What do you do when your spouse is diagnosed with Alzheimer's disease? Do you run for the hills or plan a 10,000-mile trip? Thankfully, today's guest planned the trip, blogged about it and turned her experiences into two books!

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Research has linked social isolation to higher risks of physical & mental conditions; Alzheimer's & death are just two of them.  Becoming isolated frequently happens “naturally” and there are many ways to combat this issue.

Discussing senior isolation came naturally with my guest, Rebecca Graulich. She's a past guest who started a foundation to cope with senior issues. Recording this episode of the podcast was originally intended to be an update but turned in to much more.

During our conversation, we discussed ways to prevent senior isolation. Some of them are easier than others. Regardless, we need to do what we can. The first prevention is something we all need, a sense of purpose.

Having a sense of purpose makes us less likely to succumb to the negative effects of social isolation. Hobbies are an easy way to have a purpose in our senior years. Volunteering is another method of preventing isolation by giving back.

Having access to transportation is also important. If driving is no longer an option there are many options in addition to relying on family. Public transportation is one option but it's not always convenient.  Many communities have volunteer organizations that can drive our loved ones where they need to go. It may take some creativity to solve this issue but it's worth the time it takes.

Caring about someone or something else will always give us purpose. There are many things to keep in mind when considering a pet.  

If a pet isn't practical, perhaps volunteering at a shelter or helping a neighbor with their pets is an option. Pet therapy can actually lower blood pressure and stress. Caring for a pet is fun and rewarding for anyone who needs companionship.
More Ways to Avoid the Isolation Danger Zone!
These are just a few ways to avoid the dangers of loneliness. This blog post lists many others.

 

A Fuzzy Way to Prevent Isolation
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When it comes to eldercare we frequently need a partner. Even for those who plan ahead, making decisions for our loved one is a huge challenge. For those living with memory loss, it's nearly impossible to know what they'll need, when they'll need it and how we'll provide the care.

Enter and eldercare consultant.  What does an eldercare consultant do?  They provide a professional assessment of the needs and strengths of seniors and their families. They also provide immediate solution option so you get relief and support. Additionally, they can provide guidance about the most appropriate and affordable options. Lastly, they can then arrange for your chosen services to begin saving your hours of time.

Frequently, eldercare planning becomes a priority when an emergency has occurred. Obviously, this is not the ideal time to undertake such serious decisions. Additionally, for many of us, we aren't even aware of what services may be needed or what's available.

This podcast episode will introduce you to a consultant, what she can do and why you should consider hiring one.

Eldercare Consultant Website

When & How to Choose In-Home Care

 
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“You're too good looking to have Alzheimer's.”  Imagine hearing this from your doctor. The disbelief that someone could actually look vibrant, strong and healthy yet have Alzheimer's makes diagnosis more difficult.

Early-onset Alzheimer's is an uncommon form of dementia that strikes people younger than age 65. Of all the people who have Alzheimer'sdisease, about 5 percent develop symptoms before age 65. If 4 million Americans have Alzheimer's, at least 200,000 people have the early-onset form of the disease.

Imagine being in the prime of your life, close to the top of your career when suddenly you're having issues at work. Your boss is upset that you didn't follow through on the action items that were assigned to you. You're certain that this assignment was never discussed.

Now imagine being tested for depression, hormone imbalances all kinds of issues and not getting the answers you need. What is wrong? Is it you, the world, are you going crazy? That's the world that some people with early-onset Alzheimer's experience.

It's commonly assumed that it's the elderly who end up with Alzheimer's. While that is normally the case, there are many people living with the disease who may still have children at home. Due to the rarity of early-onset, we are less aware of this version of the disease.
Inherited Alzheimer's
The movie “Still Alice” (released in 2014) portrays Alice Howland, a 50-year-old professor of linguistics. Alice discovers that she has a rare form of Alzheimer’s disease. She has to think about what her future will be like with diminished cognitive capacities, and must face difficult conversations with her children, who might have inherited the disease.

In the movie, Alice has Familial Alzheimer's disease (FAD).  This a rare form of Alzheimer's that is entirely passed down through genetics. FAD accounts for 2-3% of all cases of Alzheimer's and usually has a much earlier onset than other types of Alzheimer's, with symptoms developing in people in their 30s or 40s

Alzheimer's disease isn't fully understood. Scientists believe that for most people, the disease has genetic, lifestyle, and environmental factors. There may be a hereditary component to Alzheimer's. People whose parents or siblings have the disease are at a slightly higher risk of developing the condition.

Regular listeners know, my Mom and Great grandmother had dementia or Alzheimer's. It's possible that my maternal grandmother had Alzheimer's as well. That puts me in a higher risk category. I cannot change my genetics so I focus on making the best lifestyle choices I can.
Doing What We Can to Avoid Inherited Alzheimer's
Lifestyle choices, all the things we know we should do but somehow manage to avoid doing. I exercise regularly, eat as cleanly as possible and I make getting the best sleep I can. Other lifestyle improvements include stress management.

Some examples of stress-management techniques include:

Meditation
Guided Imagery and Visualization
Hypnosis
Deep Breathing
Massage
Prayer

Trust me — it is not necessary to lock yourself into any of one of these stress relaxation techniques. Rather, it’s best to feel free to explore any or all of them to see which technique works best for you. Simply start with any of these techniques for a few minutes a day and you’ll quickly begin to experience better brain function. Then, find the techniques you tend to enjoy the very most and you’ll begin experiencing a whole new and improved — and less stressed — you!

With this in mind, my main sources of stress management are exercise, playing with my dogs and focusing on the beauty around me. As a result of producing this podcast, I am able to talk to many people who also help me with my caregiving journey.

Fading Memories is a place where you can get stress relief. Each guest offers a lot of inspiration and practical ideas. Best of all, there are a lot of laughs despite the serious topic.

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When should we consider in-home care for my loved one? How do we find the right help and where do we start?

First, if your loved one is struggling to perform basic activities of daily living it's probably time to get help. Part-time help to start might be the best way to go in the beginning.

Basic ADLs consist of self-care tasks that include, but are not limited to:

Bathing & showering
Personal hygiene & grooming (including brushing/combing/styling hair)
Dressing
Toilet hygiene (getting to the toilet, cleaning oneself, and getting back up)
Functional mobility, often referred to as “transferring,” as measured by the ability to walk, get in and out of bed, and get into and out of a chair; the broader definition (moving from one place to another while performing activities) is useful for people with different physical abilities who are still able to get around independently.
Self-feeding (not including cooking or chewing and swallowing)

Asking why the owner is in the caregiving business is a great place to start. You can train people on caregiving but you can't teach them how to care. The next place to look at is third party review sites.
Specific Questions to Consider
What specific services do you offer?  Some agencies do personal care as well as companion care but you may need nursing services. Caregivers can't administer medications. Knowing exactly what you need in terms of help will help guide you to the right company.

Additionally, other questions to ask could be; ” What is the minimum number of hours of care provided?  Is there a daily minimum? What are the rates, are they different at night or on weekends?”  It's helpful to know that the shorter number of hours makes it difficult to get a high-quality caregiver. Finding other chores they can do might be useful for you to have completed.

When you're working with an agency it's their responsibility to;

cover a shift if a caregiver is sick
provide insurance coverage for the caregiver
replace a caregiver if they aren't a good fit
Conducting background checks, etc.

Even though you're doing your best having in-home care allows you to maintain your relationship. As much as you want to be able to do as much as possible, getting help is likely to become necessary.

In-Home Care Self Assesment

Private Caregiver Site

Related Information (Long Term Care Insurance episode)
Where Else To Find Fading Memories
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Providing caregiver help isn't easy. Asking for help is just one more task in a long list of tasks.  Learning how we can provide help is the topic of this podcast.

Because of their ever-increasing workload, 65% of caregivers are hospitalized or die before their loved one. For that reason, finding ways to provide help that works for them is crucial.  Many caregivers don't ask for help for lots of reasons. Certainly, we can offer assistance without robbing them of their sense of self-reliance.

Help is frequently refused when adult children are offering. Although this is true, we can see that help is needed. Providing help in a way that will be accepted is our challenge to solve.

My conversation with Barbara Ivey was very insightful. Here are some of her tips.

Always make explicit, direct requests for help
Be reasonable
Take what you can get
Respect your potential helpers
ALWAYS let your helpers know how much you appreciate them

How To Offer Help
Finding ways to offer support starts with observing. Equally important would be listening. Hearing and seeing tasks we can help with should make acceptance easier. Many of the easiest ways you can help will mean the most to an exhausted caregiver.

Once an assessment of needs is made, make a list of who you can call on for help. You can find the right person for each task when you keep this list in mind. For example, I am not good at dealing with bureaucracy. Two minutes of “this is how it's done” and I am ready for murder. Thankfully, my husband has much more patience than I do and can tackle bureaucratic phone calls for me.

Handling tasks that a caregiver isn't good at can be a lifesaver. Certainly, it helps keep caregiver stress under control. Another method would be to find ways to allow a caregiver time to do what they enjoy. Barbara's Dad liked to do yard work. Visiting her Mom while he worked in the yard solved two problems. Dad was able to tackle the yard work without the worry that Mom would have a problem.
If You Know a Caregiver that Needs Help
Call or stop by rather than sending an email. Bring along something that will jump-start the help, like a meal. Instead of saying “let me know what I can do” ask “what can I do right this minute to improve your day?”.

Set up a time to work with them on an exhaustive list of everything they do on a daily basis. Prioritize the list then ask if they know anyone who could tackle some of the tasks listed.

None of us plan ahead for the day we'll become a caregiver. Many times this happens because of an emergency, leaving us unprepared.  Knowing ahead of time what services are available will make reaching out for help much easier.

When Your Parent's Won't Ask For Help (Article)

Reinforcements – How to Get People To Help You (book Barbara recommended)

It Takes A Village – (Senior Social Program with Kids)
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When is it Time to Take Away the Car Keys?
Driver safety is important. When to take away the car keys is a difficult yet important decisions.  It's not to do and should not be made lightly. Most seniors see giving up their cars as the total loss of their independence. Solving this concern will go a long way in aiding them in maintaining driver safety.

The ability to drive helps older adults stay active and independent. However, the risk of being hurt or hurting someone else in an accident increases dramatically as we age.  According to the National Highway Traffic Safety Administration, an average of 500 older adults are injured every day in crashes.
According to the NHTSA here are 20 signs we should watch out for.

Drifting into other lanes.
Straddling lanes.
Making sudden lane changes for no reason.
Ignoring or missing traffic signals or stop signs.
Becoming confused in traffic.
Braking or stopping abruptly without any reason.
Hitting the accelerator suddenly without any cause.
Coasting nearly to a complete stop in the midst of moving traffic.
Presses on the brake and the accelerator at the same time while driving.
Difficulty seeing pedestrians, objects, or even other vehicles.
Getting more and more nervous when driving.
Drives at a significantly slower speed than the posted speed or the general speed of surrounding vehicles.
Backs up after missing an exit or road.
Has difficulty reacting quickly as they process multiple images or sounds.
Has problems with neck flexibility in turning to see traffic on the left or the right.
She gets disoriented or lost easily, even if she is in familiar locations.
Fails to use turn signals or even keeps the signal on without changing lanes.
Has increased near misses on the road.
Has been issued two or more traffic tickets or warnings in the past two years.
There are dents or scrapes present on the car or on fences, mailboxes, garage doors, or even on curbs and very little understanding of how they got there.

How do we begin monitoring driving behavior?
Here are some questions you can ask your parent to help determine if they need to stop driving;

Can you read the street signs easily?

Do you have trouble looking over your shoulder?

Do you have difficulty moving your foot from the gas to the brakes?

How well do you see at night?

Are you comfortable with passengers or are they distracting?

Being honest with our loved ones goes a long way when determining if their driver's safety is questionable. Services like Uber and Lyft will allow our loved ones to stay independent. Help them learn how to navigate these apps.

Sometimes, we have to be the “bad guy” and physically take away the car. If our loved one is determined to drive despite our serious concerns it may be necessary. Other options are to get a letter from their doctor stating that driving is no longer safe. You can also contact your local DMV and let them know a driver is unsafe.

My Dad told Mom one day that they were giving her car to my brother-in-law. For a long time, despite Alzheimer's, Mom was still pretty angry over this “injustice”. Because of her Alzheimer's she saw no logical reason she couldn't drive anymore. It's unfortunate that she was unable to enjoy the Karma when we took Dads' car away.

Ensuring driver safety isn't easy. A willingness to do all we can to aid in this transition is important. Having a discussion about their fears, struggles and how to address them might go a long way in getting compliance. Keeping in mind that losing even some independence is difficult is also important.

 

Assisted Living – Good Things To Know
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Walk to End Alzheimer’s is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. The walk is held annually in more than 600 communities nationwide, In talking to Ginny Roth, walk coordinator for a Northern California walk, I learned about the importance of the fundraising in helping find a cure.

In the United States, someone develops Alzheimer's every 65 seconds. Currently, there are more than 5 million people living with the disease. Additionally, there are over 16 million unpaid family caregivers supporting them. In 2019, Alzheimer’s disease will cost the United States $290 billion. This number is projected to rise to more than $1.1 trillion in 2050.

Tune in to this conversation, you'll learn exactly what is done with the money raised. Fundraising is important, checking out this podcast is even more important.

Getting involved with the Alzheimer's Association started with joining one of their support groups. I had attended a grief support session after my Dad died but that group didn't cover everything I was going through. A Google search for support groups led me to the Alzheimer's Association.

After I started my podcast, I interviewed Pam Jarvie, one of the legislative advocates. She persuaded me to join her advocacy team and it's been a whirlwind ever since. Attending my first state advocacy day this year (2-5-2019) was an interesting eye-opener.

Having very little interest in politics, I found it odd that I was now lobbying politicians on behalf of people like my Mom. Alzheimer's is no way to live the last years of your life so I do all I can to help find a cure. Lobbying politicians for money is one of the most important activities we can do.
Why I'm Walking
However, not everyone can take the time to go to their state capital and spend the day telling their stories. For those that would rather do anything else, the Walk to End Alzheimer's is an easy way to help. Early autumn is prime “walk season”. Most walks are easy enough that everyone can manage one. The walk I'll be attending is flat, allows dogs, and has ample parking so even mobility challenged folks can easily attend.

After my talk with Ginny, I decided on a modest fundraising goal. I'm also going to do as much recording and live streaming for the podcast as possible.  Generating as much awareness as possible is part of the mission statement I have for my podcast.

Feeling ashamed with a diagnosis of Alzheimer's is a stigma that needs to end. Interviewing guests living with Alzheimer's or dementia allows me to knock down some of that shame. Showing the joy and camaraderie that people at the Walk experience will help grow my local walk.

We must find a cure for this disease. Alzheimer's disproportionately affects women, and I'm sure women will find the cure.  Please make a donation to advance the care, support and research efforts of the Alzheimer's Association. Thank you for joining the fight against Alzheimer's!
Where Else To Find Fading Memories
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Be sure to tune in to our YouTube and Facebook pages for live streaming of this great event.

 

 

Learn more about the Alzheimer's Association

Living With Alzheimer's

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Lewy-Body dementia is very different than Alzheimer's. While physical changes are similar, cognitive changes can be vastly different. Equally challenging, Lewy-Body dementia can present with a range of symptoms. These include problems with thinking, memory, moving, sleep and/or changes in behavior.

To better understand the unique challenges of LBD I spoke to Nance Tobar. Nance is caring for her father who has LBD. A misdiagnosis caused severe changes in his cognitive abilities due to the unique pathology of Lewy-Body.

Nance's dad, Joe, fell and became hospitalized. As a result, his medications were changed. Notably, they took him off of one medication that was stabilizing his memory. Consequently, the family lost 2-3 good years with their Dad.

Early and accurate diagnosis is important because LBD patients may react to certain medications differently than other memory patients. A variety of drugs can worsen LBD symptoms. Joe was prescribed an anti-psychotic. Thankfully, Nance was warned of the danger before she gave him any. Anti-psychotics can be fatal to a person with LBD.
About Lewy-Body
Notably, LBD is the second most common form of dementia.  Generally, LBD can have three common presentations; movement issues, cognitive impairment or neuropsychiatric symptoms, which can include hallucinations. Joe had hallucinations.

Regardless of the initial symptom, over time all three presentations will develop very similar cognitive, physical, sleep and behavioral features.
The most common symptoms of LBD include:

Impaired thinking, such as loss of executive function (planning, processing information), memory, or the ability to understand visual information.
Fluctuations in attention or alertness;
Problems with movement such as stiffness, slowness, and difficulty walking
Visual hallucinations
Sleep disorders, like acting out one’s dreams while asleep
Depression, apathy, anxiety, agitation, delusions or paranoia
Changes in body functions, such as blood pressure control, temperature regulation, and bladder and bowel function.

 

To emphasize the lack of understandings of differences between LBD and Alzheimer's I talked to Nance. Her story illustrates the struggles that can happen as a result of not having a proper diagnosis. Nance and I are in the same caregiver support group. During the time just after her Dads, hospitalization was a rough time for her.

The changes due to the medication trials make her feel very guilty. Caregiver guilt is common but Nance has nothing to feel guilty about. She's caring for her father the best way she can. Sharing their stories is her way of helping other families.

Even if you are not caring for someone with Lewy-Body you'll find this conversation insightful. Understanding all we can about senior health issues makes us all more compassionate. Realizing what challenges people are facing also makes it easier to provide help.
Podcast Housekeeping Notes
Some quick podcast housekeeping! Make sure to check out our new YouTube channel. We're still creating it but take a look anyway. In addition to weekly video podcast episodes, there will be unique content specifically for YouTube.

Also, if you're not following us on social media, please do! We're on Facebook under Fading Memories podcast. Our Instagram account is Alzheimer's podcast. Twitter is here. We post lots of interesting and fun content on all the channels. Can't wait to see you there!

Want to suggest an episode topic? Go to our website and click on the voice memo icon. We wouldn't mind it if you used this to send us some praise too! Don't forget to rate & review us on Apple Podcasts. Reviews are how new listeners find us. Don't keep us a secret! We're here to help as many caregivers as we can.

Until next week, hang in there!

Learn More About LB

Other Insights on Dementia
Where Else To Find Fading Memories
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Not only have  200+ trials looking for a cure for Alzheimer's failed, a cure in my life doesn't look likely. What if we have had one all along? According to Dementia Care Central the dementia-related conditions that can be helped by CBD include; Alzheimer’s disease, Vascular Dementia, Lewy bodies dementia, Parkinson’s, Frontotemporal dementia and Huntington’s.

Additionally, according to researchers at California’s Salk Institute, their 2017 study has found evidence that cannabinoids such as CBD could help remove dementia from brain cells. At the same time, we're looking for a cure for Alzheimer's, we're ignoring a potential natural ally. At the very least it could be a preventative treatment.

In the hope that we can avoid developing the disease, or at the very least reducing its effects, are we missing out?  Why are we afraid to investigate this option?

In light of this idea, I spoke to Chela of AlzNotes about her experience with her Mom and her use of medicinal cannabis. Coupled with her personal experience, Chela has done more than her share of research on this topic. Given that I have a family history of Alzheimer's I thought it was important to learn more on this topic.
Has There Been Research Into Cannabis & Alzheimer's?
Notably, there has been a lot of research on cannabis as medicine. A 2014 study published in the Journal of Alzheimer’s Disease showed that small amounts of THC can slow down the progression of Alzheimer’s in patients. Additionally, the right balance of CBD-THC can greatly reduce dementia induced anxiety or aggression.

Another key point is that THC is known to be a powerful antioxidant with neuroprotective properties. However, the 2014 study reported that the compound directly affects Alzheimer’s pathology by decreasing amyloid beta levels. Obviously, this is a mind-blowing result. Additionally, as you'll hear, Cannabis has many other potential healing properties worth looking into. Natural cures come with far fewer side effects so they're worth researching.

In short, I'm sure you'll find this episode as fascinating as I did. Researching this topic further is definitely on my list! Don't you owe it to yourself to do the same? Here are the links discussed during our chat.

PubMed.com

ProjectCBD.org
Past Episodes on Alzheimer's Prevention
Move It or Lose It – Exercise & Brain Health

This Is Your Brain on Nutrition – Diet & Brain Health
Where Else To Find Fading Memories
Be sure to share this podcast with other caregivers! Thanks. You can find us on social media at the following links.  Facebook    Instagram    Twitter

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