As a caregiver, sometimes the frustration associated with trying to understand why Mom does what she does is overwhelming.  I know she has a brain disease, I do everything I can to learn everything there is to know. However, there are many days knowledge just doesn't help end the frustration.

Listening to someone living with dementia and what it's like is a window into understanding. It's the closest we can get to complete understanding of what it's like to live with memory loss. That's why my conversation with Janice Swink, a woman living with mixed dementias was so powerful.

Janice described symptoms I'd not heard of and detailed some I had. I was unaware of the possibility of scent hallucinations until Janice told me about hers. I was aware of visual hallucinations, something she also has to live with.

In addition to the challenges that come with living with dementia Janice details some of the social stigmas, she has to put up with. People who tell her she doesn't look sick (she refrains from telling them they don't look stupid). Using her walker gets her understanding and patience but the electric cart does not.

One challenge Janice described was the inability to remember that she was having symptoms of a urinary tract infection. This caused an unnecessary delay in being treated and another day or two and she would have been hospitalized. If you listened to last week's episode on my state advocacy day, this is the challenge the state of California is trying to address.
A Dementia Warrior
Janice is a warm and funny woman and our conversation was terrific. She makes videos for Facebook and Twitter.  She posts about what it's like to live with dementia, dancing videos, and even what bad days are like.

Listening to this episode will greatly increase your understanding of what living with a dying brain is like. Hopefully, it'll also help the normal feelings of frustration be a little less overwhelming.

Living With Dementia Part 2

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Jennifer is also available for speaking engagements.

 

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Sitting in a state senators office is not where I would have thought I'd find myself 4 months ago. However, on Tuesday February 5th, 2019 that's exactly where I was. I was part of a team of 5 people asking our state government to support legislation that could save our state millions of dollars. There were 250 advocates at the capital that day, all asking for the same thing.

Exactly what was this “thing” we were asking for?  We were lobbying our representatives to support a bill that was being brought to the floor that afternoon. This bill is to approve funding for a pilot program to educate the population about the warning signs of Alzheimer's. Additionally, this funding will also help achieve early diagnosis of the disease.
A Bold New Approach
Alzheimer’s is the 3rd leading cause of death in seniors in my home state of California. Estimates from the Alzheimer's Association state, quite conservatively, that the average cost of care for seniors living with Alzheimer's, is $341,840. That’s a really low figure, especially in California. Additionally, costs to tax payers and the state are astronomical.

Diagnosis by a clinician happens with only 45% of people affected with this disease, Many people will not understand what’s wrong with them and end up in the emergency room. We know that emergency rooms are the most expensive place to receive health care. Understanding that many people living with Alzheimer's end up in an emergency room unnecessarily is the reason for the push for early diagnosis.
Introducing the CDCs Healthy Brain Initiative
At the end of the federal congressional budgetary year, the Center for Disease Control came out with a healthy brain initiative. This initiative is a roadmap for local county health departments to roll out an early diagnosis campaign. This campaign would help improve patient outcomes and reduce costs.

Reducing costs and keeping people from receiving health care in the emergency room are two primary goals of this plan.  Getting an early diagnosis allows someone living with Alzheimer's to get financial and legal papers in order and plan for the rest of their life. Not knowing you've got a terminal brain disease can cause serious financial hardship because of lack of planning. While a diagnosis of Alzheimer's is devastating it is still better than not knowing and being able to plan accordingly.

As a family member of someone who didn't plan well enough I can assure you that this approach is important. Doctors need to understand why an early diagnosis is important just as much as families.
Implementing the BOLD New Approach
California can lead the way on finding the best way to tackle this challenging issue. As a large, diversely populated state many, of our counties are ideal for this pilot program. The first step would be to develop a coordinated statewide public awareness campaign focused on those at risk of cognitive impairment.

After developing the awareness campaign, local health departments would explore community-based solutions and innovations. Then, assessing local health needs and addressing those with public health interventions comes next. Following this assessment, health departments would target their outreach to at-risk populations and communities.  These communities include people of color, Hispanics and women. Keeping the whole person healthy is important so collaboration across the patients life span to include other chronic and disabling conditions is part of the plan. . Finally, the health departments would evaluate and replicate the best practices statewide.

This doesn't seem that difficult an undertaking. Obviously, there will be challenges, but I think they can be easily overcome with knowledge, creativity and just a little money from the state.  My team got positive reactions from both legislators aides, the second one was wildly positive. Now we wait and hope the state grants us the money and we can implement the plan and help families.

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No one decides to become an Alzheimer's caregiver. Alzheimer’s disease creeps slowly into a person’s life but never retreats. Eventually, the individual’s memory fails in too many important areas, and someone must keep watch. Round-the-clock care is needed, and that invariably falls to the ones who care most—one’s partner or children.

Becoming a caregiver to your partner of many decades is difficult. Speaking to the former governor of Wisconsin Marty Schreiber helped me be a better caregiver. Marty has seen his beloved wife, Elaine, gradually transform from the woman who had gracefully entertained in the Executive Residence to one who sometimes no longer recognizes him as her husband. Candidly counseling those taking on this caregiving role is the main message in his book, “My Two Elaines.”

Sharing his knowledge by writing the book has been Marty's late-in-life career.  “My Two Elaines” is more than an accounting of Marty’s struggles in caring for his wife. Offering sage advice that respects the one with Alzheimer’s while maintaining the caregiver’s health is the primary message of the book. Because two-thirds of those with Alzheimer’s are women, he offers special guidance for men thrust into an unexpected job. With patience, adaptability, and even a sense of humor, Marty shows how love continues for his Second Elaine.

Reading My Two Elaines is an enjoyable way to help you in coping and surviving as an Alzheimer's caregiver. I listened to the audiobook and felt as if I knew Marty before our interview. Marty is a warm and friendly person whose main goal in life is to support caregivers.
More Information
Fading Memories is sponsored by I'm Up. I'm Up is an app that gives you independence, security, and peace of mind. Fit it in your favorite app store. Use invite code 006 when you sign up.

Another Interview with Marty (Dementia Matters Podcast)

Caregiver Struggles

Why Senior Care Needs to be a Team Effort

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Talking to kids about Alzheimer's is easier when you share the book “Weeds in Nana's Garden” with them. A beautifully illustrated and child inspired story that allows you to help them understand in a kid friendly way.

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More than 10 million Millennials are providing unpaid care for a friend or relative. The SCAN Foundation has launched the campaign, #YouGiveACare? to assist them with a community of like minded people who are empowered by knowledge and taking on the responsibility of caring for a loved one.

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Blue Hydrangeas is a beautiful novel with a truly important message. When a spouse has Alzheimer's we want to do everything we can. Sometimes, that requires rethinking our lives and getting creative.

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We've all had the experience of not remembering. As we age some of us dismiss this as part of aging and some of us fear it's the first sign of Alzheimer's. How do we know who is right?

Experts say that mild memory loss is normal as we age. Occasional forgetfulness does not mean you're developing Alzheimer's. If we're concerned about developing the disease, have normal memory lapses we easily focus on what we're forgetting.  Knowing the difference between normal memory issues and memory loss we should worry about is tricky.

Our brains are capable of creating new brain cells at any age so significant memory loss is not normal. Brains are like muscles and need to be kept strong just like the rest of our bodies.  Lifestyle can have a huge impact on the health of our brains. What we eat, and drink, how much exercise we get, how well we sleep are all important factors into brain health. The other is to regularly challenge our brains by learning something new. Anything that forces you to “think hard” or forces you to really concentrate are good for your brain.
Normal Forgetfulness VS Dementia
Occasional lapses in memory are normal, not a warning sign of Alzheimer's or dementia. If you find yourself with some of the following memory issues you'll want to get checked out immediately.

Forgetting names of people you just met or calling one person by another name?
Do you occasionally forget where you left things like glasses or car keys?
Occasionally forgetting an appointment or walking into a room and not remembering why?
Are you easily distracted or have trouble remembering what you just read or the details of a conversation?
More frequently being unable to retrieve information that's on “the tip of your tongue”

It's time to consult a doctor when memory lapses become frequent enough or sufficiently noticeable to concern you or a family member. This is not the time to pretend all is well.  Early intervention may allow you to have more good years than not so call the doctor and have a FULL workup scheduled. The traditional pen and pencil memory test which usually takes less than 10 minutes may not be sufficient to detect a problem.
Reversible Causes of Memory Loss
Memory problems don't automatically mean you have dementia. There are many reasons why you may be having cognitive problems. Some reversible causes include stress, depression, poor sleep or even vitamin deficiencies.  Some prescription medications may also have side effects that cause memory issues. This is why seeing your doctor is so important.

The 10 Warning Signs of Alzheimer's

On this episode of the podcast I talk to Vicki Tapia about acknowledging when our parents need help  Her experiences as a caregiver to her parents and how she coped led her to writing a book. “Someone Stole My Iron” offers useful information from experts in the field of Alzheimer’s research, personal lessons learned along the way, and ideas/tips for managing the day-to-day ups and downs of dementia. It is a story of holding on and ultimately learning to let go, transcending the pain and turmoil to discover love and compassion.  “Someone Stole my Iron” chronicles her Mothers determination to navigate the confusing and terrifying world of memory loss.

You'll find our conversation full of personal struggles that are universal and our approach to them educational.  Together we cover a lot of ground on caregiving challenge.

My Favorite Things Page

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A common caregiver struggle is the lack of support from family members.  Author Irene Olsen and I discussed potential solutions during our conversation on this episode.  Irene survived to be an Alzheimer’s caregiver…twice.  Her father, to whom her novel is dedicated, was the first family member. Then, Irenes' sister-in-law, diagnosed with mixed dementia a month after her father’s death, became the second.
Why An Alzheimer's Novel?
Feeling her experiences as a caregiver were meant to go further than the confines of her own heart and using her background as a care group facilitator and a state Ombudsman Irene created a supportive novel Requiem for the Status Quo.

Irene's goal in writing Requiem was to encourage and educate those called to take on the role of the family caregiver.  Irene's brother was an extraordinary caregiver for his wife. Irene was the go-to person for advice, direction, and the occasional caregiving day. Having been front and center on her father’s three -year Alzheimer’s path gave Irene an “edge” on experience.

Family caregivers are often ruthlessly challenged by uninvolved family members who are quick to condemn, but reluctant to offer assistance. Caregiver struggles can be devastating when their decisions are challenged or questioned.  Family members not actively participating in caregiving sometimes give advice as a way to “help”.

Fearing getting “sucked in” is a common reason others don't help more when caregiving is needed. Find out what each person feels they can help out with, giving them an active role in caregiving.  Physically caring for an aging person is not something most of us are “hard-wired” to handle. Thus, allowing families who can't participate in hands-on care to tackle other tasks is a huge benefit to all.
 Involving Reluctant Family Members
Involving family in caregiving can be quite a challenge. It's an issue that's been discussed before on my podcast but worth revisiting regularly. Many family members, feeling they are not cut out to handle day-to-day care, opt-out of helping altogether. Lacking nearby proximity is also a common excuse. So, how can we help them help us?

First, ask them what tasks they can comfortably tackle.. Are they good at making phone calls to doctors, specialists, etc?  Can they handle deciphering insurance paperwork?  Maybe they can handle things like yard work or managing paid care providers.

There are more tasks to be done than 1 or 2 people can handle. Finding one that each person is best suited will go a long way in maintaining caregiver health. Being the “lone caregiving more solid” is putting yourself on a dangerous path.

Assuming the responsibility and full burden of care, many people march forward disregarding their own health.  Eventually, this badly wounded soldier is no good to anyone.  In reality, it takes an army to effectively manage the care of an older adult.  Failing to let others help with the practical burdens, results in a health and wellness declines.

Not anticipating how overwhelming tasks will be handled is a major source of caregiver stress. Having others who can help anticipate and find solutions to things like incontinence, heavy lifting and wandering are important.  Both urinary and fecal incontinence are among the leading causes of nursing-home placement. A small or frail wife of a big man who needs help is another tough scenario.
Tips for Caregivers Who Lack Family Support
Lacking proper support, caregivers have more difficulty ensuring their loved one receives the care they need. Regardless of why there are ways to help yourself in your caregiving.

First, find out what resources are available.  Before I started this podcast I was unaware of how much support is available.  Connect with your local Area Agency on Aging. They can familiarize you with the available options.  Also, check the many options listed on my resources page.  Start with the Alzheimer's Association. They are a wealth of knowledge.

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Holidays are especially challenging for families caring for someone with Alzheimer's. Don't let holiday stress cause you issues this season. Read on for holiday survival tips for those caring for someone with Alzheimer's or other dementias.

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Seniors and technology may be something you're unaware of but no longer!  Options for preserving your legacy and maintaining communication are discussed in this episode.

Passing down material items with a Will and taking care of our loved ones' finances with Life Insurance are normal practices.  NOW you can take care of the whole person. Using Legacysphere℠ you have the ability, while still alive, to compose personal messages for your survivors.

This seemed a little bit morbid at first but our conversation turned my thinking around. Now I'm a fan. Hearing our conversation you'll understand why I wish my Dad had known about and taken advantage of Legacysphere℠ .  Leaving me with lots of unanswered questions and confusion might have been avoided.

To compose a message your loved ones will appreciate considering the following idea may help. To provide a unique and personal history, detail some of your normal days. You may think that your day-to-day life isn't interesting, but it may be in the future.

Check out Legacysphere!
Timeless App
Timeless is an app specifically created for those in the early stages of Alzheimer's.

Creating an app for people with early to mid-stage Alzheimer's or dementia has been Emma's focus for 2+ years. Emma Yang is a very young tech entrepreneur. She created Timeless, a first-of-its-kind, simple, easy-to-use app for people living with Alzheimer’s. Helping them to remember events, stay connected, and engaged with friends and family is its goal.  People are also aided in recognizing family and friends through facial recognition technology. Emma's got more ideas once the app has launched which is scheduled for early 2019.

Making the most of every resource will help our loved ones live better longer. Using her personal experience with her Grandmother, Emma created something that will help thousands of people living with Alzheimer's.  Using this app as a person living with Alzheimer's may help through the stimulation it gives their brain.
UPDATE!
Timeless 2.0 is now available worldwide. Timeless is a first-of-its-kind, simple, easy to use app for Alzheimer’s patients to remember events, stay connected and engaged with friends and family, and to recognize people through artificial intelligence-based facial recognition technology.

 

Check out Timeless Care!

Join Fading Memories On Social Media!
By all means, share this podcast with other caregivers!  You can find us on social media at the following links.

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Also, make sure to subscribe to our YouTube channel. There you can see me in “action” and watch the bonus videos I share.

Jennifer is also available for speaking engagements.

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