Deciphering Dementia Speak

Deciphering dementia speak

Deciphering dementia speak requires serious detective skills.

One of the biggest struggles of communicating with a person living with Alzheimer’s or dementia is repetitive questions or comments. I’ve been struggling with this with my Mom more lately and I think I understand why she asks a particular question over and over.  Now I have to figure out how to deal with the underlying cause.

It took awhile to realize that the question wasn’t an actual question. This is one of the challenges of Alzheimer’s or dementia.  Her question came up organically although it wasn’t natural to Moms’ core personality. I assumed that was part of the changes caused by her Alzheimer’s.

Mom has always been an independent person, almost to a fault.  Her recent habit of repeatedly asking if “her husband” knew where she was (was going) was kind of odd. Honestly, she was the type of person who may or may not have left a note when her schedule deviated from the norm. She also rarely cared if no note bothered you.

It’s this background that made this particular question, her insistence on making sure he knew where she was was, troubling. I would answer every time and try to help her move on. Lately, the question comes even if we don’t leave her care facility. Sometimes the questioning escalates into her accusing him of dumping her on me, a statement that I find troubling.

Does she really think her oldest daughter, wouldn’t visit unless Dad insisted?  That’s a painful thought to consider especially because it’s untrue.

Becoming A Dementia Speak Detective

Lacking understanding of why she’s more insistent with this question has been causing me a lot of mental anguish.  I like to know the “why” of something, how to fix something, how to help.  Most of those things are impossible to accomplish with someone with Alzheimer’s.

Deciphering her question isn’t just for me, it’s also for my listeners. I started a caregivers support podcast to help people like me. Not being able to help myself makes me doubt my effectiveness in helping others. This is why I seek out people who have “been there, done that”.  I think that’s what finally led me to a breakthrough.

Possible Reason for Moms Question

Dad has been gone 2 years and 10 days (3-2-2017). Mom doesn’t remember he died which sometimes seems to be a blessing and other times a curse.  I’m a lot like my Dad but never considered that to be a factor in any of my interactions with Mom. That may still not play a role but it got me to thinking.

Mom hasn’t seen Dad since the day he died. I’m not sure how she processed his being in a hospital bed because you couldn’t talk to her about that. She simply didn’t understand (or seem to understand) what was going on with him. She didn’t understand he was on Hospice, his wish.

Reflecting on my own loss is how I got to my A Ha! moment.  I don’t think Mom is concerned that he know where SHE is, I think she misses him. She’s concerned she doesn’t know where he is and THAT is the reason for the insistent questioning I get from her.

What to Do With this Info?

Frequent, repeated questions or comments are how a person living with Alzheimer’s or dementia tries to communicate with us. It’s up to us to be detectives and determine what is at the base of the question. That isn’t easy. Thinking about what could be the underlying “reality” behind a questions will help. Moving past our frustration and finding ways to help them articulate their needs will help them communicate better. It will certainly help us.

On my next visit with Mom when the question comes up I’ll ask her if she misses him. This might be dangerous. I don’t want to upset her by opening her up to grief.  I have a couple of days to plan out how my end of that conversation can go.  

Dad travelled to Africa twice so I can pretend he’s there and not gone. I’m not sure yet what the right path my be, I may have to make decisions in the moment. That makes me nervous. Keeping the question light should help Mom answer without reliving the loss of her husband. That’s what I hope will happen.

As I tell most of the guests on my podcast, I’ve been on this journey with my Mom for a very long time. My best recollection is it’s been close to 20 years. That’s pretty much my entire adult life.  One would think that I’d be an expert by now but no., I’ve learned more in the last year talking to others who have been on this journey than I thought possible.

Moving Forward

My advice to those on this journey, be as patient with yourself as you are with your loved one.  Caregiving is not the same as raising a child, the journey gets tougher every year.  The need for our detective skills increases at the same time our ability to read uninterrupted, go to a support group or take a long walk in our own thoughts, decreases.

Surround yourself with as many people on this journey as possible. Ask as many questions as you can. Read as much as you can. Listen to podcasts, whatever it takes to become as educated about this disease as possible.  The more you understand, the easier the journey can be. Considering this journey is one of the toughest that anyone can take, that’s a big deal.

What Do You Remember Episode

Caregiver Confessions

Caregiver confession is something we all have but don’t usually want to discuss.  Wouldn’t it be nice to be a caregiver who never gets frustrated and is an eternal optimist?  If that describes you, I applaud your emotional strength and resilience. However, many of us providing care for a cognitively impaired loved one, do not fall into that category; I know I don’t.

Similarly, most caregivers struggle with negative emotions, frustrations and the uncertainty that comes from caring for someone with memory loss.  Helping people navigate this treacherous journey was the reason I started my podcast.

For instance, wanting to help ease the burden of having negative emotions sent me on a quest to find the right person to talk with.  Subsequently, I found Kate, the host of the podcast, Ignorance Was Bliss. For example, she started her podcast because she had things she wanted to say and conversations she wanted to have. Kate is also a trained psychologist and a person living with serious health issues. Naturally she was an ideal person to talk to.

Difficult Caregiver Thoughts (AKA Caregiver Confessions)
  1. I’m sick of having no life of my own.
  2. Dad tries to control everything I do—it’s exhausting.
  3. How much longer can I continue caregiving? It seems like there is no end in sight.
  4. My loved one has no clue what I give up to care for them. They think this is a normal routine.
  5. Everybody constantly wants a piece of me, and there’s nothing left for myself.
  6. Nothing I do ever pleases them.
  7. Mom is suffering so much, and has no quality of life. Why can’t she just let go and die?

As a result of some of my negative feelings about Mom I wanted to find ways to see the positive in our interactions. Searching for ways to turn that negative narrative in my head around has been something I’ve worked on for many months.  Consequently, my conversation with Kate gave me some terrific insight that I’m sure will help you.

Meanwhile, check out the other part of our conversation on Ignorance Was Bliss.  As a result of our 2 plus hour conversation both of us got exactly what we wanted for our individual podcasts. Kate talked to me about my journey with Mom and moreover, I got insight into dealing with my negative thoughts.

To sum it all up, talking through some of our negative thoughts and feelings can be a huge help.  Certainly, it can’t hurt even if we don’t come up with any answers. In addition, you might feel better just for having the conversation.

 

Sharing Knowledge Between Caregivers

Sharing Caregiver Advice

Sharing advice, one caregiver at a time.

Starting this podcast was all about sharing my knowledge with other caregivers. That was the plan with Francey, to have a conversation where we shared resources. As many of my recorded conversations go, we ended up talking about our shared journey.

That’s okay, because I feel that hearing other caregiver stories, them sharing their knowledge is helpful to all of us. Knowing we’re not alone, that we have similar struggles can be truly beneficial. I like to think of episodes like this one as a way to get support without having to leave your home. We all know what a struggle that can be.

Francey bounced all over the country for 25 years chasing her career in airport operations and management, She moved to Sarasota, Florida in 2015 to take care of her mother. Not long after this big change, she started her blog as a way of sharing her knowledge with others.

Becoming a full time caregiver came with a steep learning curve. Having never been married or raising any kids, Francey never had to care for anyone but herself!  Her blog is about her challenges and also the joys and rewards. It’s a way for her to keep her Mom forever alive in cyberspace. It’s a place to vent, and , hopefully, to lend support, experience and knowledge to others who are or will soon be a memory loss caregiver.

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

#YouGiveACare? – Millennials Caregiving Community

Millennial caregiver

More than 10 million Millennials are also unpaid caregivers.

Millennials are often accused of being a selfish generation focused solely on getting their own needs met. However, this is not a complete picture. While trying to achieve their own goals, millennials play a much bigger role in caregiving for older adults than any other generation. Sadly, they don’t get credit for this.  One out of four family caregivers in the U.S. is a millennial. As Baby Boomers age and need more support, this young group is becoming an increasingly important part of the caregiving workforce

One in three young people in America provide unpaid care to an adult friend or relative. They do this while pursuing educational goals, career advancement, relationships and social connections.  Another third of Millennials, ages 18-39 believe they will be providing this kind of support in the next five years. Nearly three quarters of millennial caregivers are employed and 53% work full time. Millennials also spend an average of 21 hours per week on caregiving. This is the equivalent of a part time job. More than one in four millennials spends over 20 hours each week providing care, and roughly one in five provides care for at least 40 hours each week.

Recasting the “me-first” Millennial image with a more accurate one, the SCAN Foundation has launched a campaign called Do You Give A Care?  Creating a community of Millennials and Get X’ers who are empowered by knowledge and taking on the responsibility of caring for a loved one is their goal.

Talking To Millennial Caregivers

On this episode of the podcast I talk to two Millennials. The first is Rachel Hiles, who cares for her grandmother. The second, acting as co-host is my daughter Laura. The conversation is very interesting when you compare it to all the past guests who are older than myself. Many of them have also completed their caregiving journey. Most of my past guests have been female baby-boomers and I am a Gen X’er.

Rachel’s Blog

SCAN Foundation  -#YouGiveACare Website

Why I Care (Video)

An Alzheimer’s Love Story

An Alzheimer's Love Story

An Alzheimer’s Love story with a timely message we all should heed.

Blue Hydrangeas is an Alzheimer’s love story. It’s probably not what you think you’d like to read, but trust me, it is. It’s a beautifully written book with a very timely message is exactly what all of us, young and older need to read.  This is a story of many living with dementia.  It was important that their stories be told in a way that readers could relate to.

Speaking with the author, Marianne Sciucco was interesting and informative.  Marianne is a writer who also happens to be a nurse. She has an extensive background in elder care as well as an extensive background caring for family stricken with Alzheimer’s or dementia. She brought her two passions together and writes about the intricate lives of people struggling with health and family issues.

The underlying message in the book is timely.  Many of us will face the reality of what tp do when we can no longer care for our loved one at home.  Many spouses, and even adult children make a promise that can’t be kept.  As much as we’d love to allow our loved ones to stay in their home forever, most often this isn’t possible. People make this promise when the symptoms of Alzheimer’s are at their most manageable.

The characters in the book are in this exact predicament. Her memory issues coupled with his health issues make staying together in their home impossible.  His solution is one that most people never consider but should.

When To Consider Assisted Living

Staying independent may require rethinking our living situation.  For most senior American’s living in a large home in the suburbs presents many problems. If we are no longer able to drive how do we get where we need to go? Is public transportation a viable option? How far away is a bus stop? Can we rely on family or neighbors without causing them significant inconvenience?

How will we maintain the home and yard? Can we rely on hired help? How safe is the home as we age and become more frail?  Are there stairs, steps or other tripping hazards? If we’re caring for someone with memory loss how do we keep them safe?

There are as many questions as there are people facing them.  Completely eliminating the idea of moving to an assisted living community is common, but unwise.  Taking care of someone with memory loss is a full time job. Maintaining your own health is equally important but frequently neglected in this situation. Add in maintaining a home and yard and you can see how quickly overwhelmed someone will become.

Hopefully, reading Blue Hydrangeas, and listening to this conversation will give you insight into why the decision to “stay home at all costs” might be too costly.

You can also listen to the informative episode dedicated to assisted living here .  Our senior years need not be filled with stress and overwhelming responsibilities.  Three are many ways to care for your loved one.

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