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.