Living with Dementia – Part 2

A woman living with dementia

Janice is living with dementia and talks to me about what that’s like.

Understanding what living with dementia is like is beneficial for all of us.  In this part 2 episode with Janice Swink, we continue our conversation about her life and struggles.  Janice is living with frontal temporal dementia. At the time of our conversation it was thought that she may also have Lewy Body syndrome. Her recent MRI has proven that not to be the case.

Having only one dementia is still a challenge however. Janice has scent and visual hallucinations along with good days and bad. Posting on her Facebook and Twitter Janice helps us understand what good days and bad look like.

Using her situation to teach people what it’s like to live with dementia is Janice’s purpose now. Using herself as a teaching tool allows her to help fight the stigma attached to a brain disease we cannot see. Janice has dealt with a lot of subtle bullying but is determined to do her part to change the world.

Recently Janice posted “LIVING WITH DEMENTIA: Have had trouble the last two mornings trying to figure out how to put my coat on and neck scarf. Hopefully this is not a new normal for me. Hugs to all!” This is inspiring because too many people with Alzheimer’s or dementia go into denial. They don’t talk about what’s going on with them, depriving friends and family a much needed understanding.

To sum up our conversation I would say that Janice is doing a great job helping the world understand living with dementia. Listening to this episode will greatly improve your understanding of the dying mind and help reduce frustrations.

Living With Dementia Part 1

Living with Dementia – Part 1

Living with dementia-what it's like

Janice Swink is living with dementia and tells us what’s it’s like to be a dementia advocate.

 

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 weeks 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.

 

Asking for $10M For Alzheimer’s

Asking $10M for Alzheimer's

Your favorite podcaster in Sacramento CA asking for $10M for Alzheimer’s.

 

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.

What’s Next?

Most noteworthy to me was the enthusiasm the advocates brought to this event. Seeing a sea of people dressed in purple wearing Alzheimer’s Association sashes was inspiring.  As the daughter of a woman living with Alzheimer’s I became an advocate to do what I can to help stop the rampant increase in people with this disease.  If and when this request is granted I will be helping our county supervisor lobby to be one of the pilot counties. Until then, it’s a waiting game.

Alzheimer's advocacy team

My team with Senator Dodds aide. She gave us an enthusiastic opinion so we have high hopes.

10 Warning Signs of Alzheimer’s

Alzheimer’s Association Website

 

Coping & Surviving as an Alzheimer’s Caregiver

Alzheimers caregiver

Coping & surviving as 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 audio book 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.

My Two Elaine's cover

My Two Elaines – Coping and Surviving as an Alzheimer’s caregiver.

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