Like Kay, I am also an introvert (on the extreme end of the spectrum). I very much enjoy one-on-one or small-group interactions with deep and meaningful conversations, but even those suck up a lot of energy and I need recharge time afterwards.
Big groups of people, especially in non-business settings (for some reason, I can handle that better because it doesn’t require anything but me being a SME [subject matter expert], which doesn’t tax my energy reserves because what I need is automatically there and doesn’t require a great deal of effort] just overwhelm me – too much going on, too much noise, too much of everything. I get zapped quickly and easily and just want to find a quiet corner to regroup and be invisible in.
I also highly recommend Susan Cain’s book. There were points reading this where I suddenly felt tears running down my face because I realized that she was accurately describing me and that it didn’t mean I was crazy, odd, weird, or any of the other negative descriptors that the western world, which places a high value on extroversion, while considering introversion to be undesirable and abnormal – and changeable (it is not!) – ascribes to introverts.
Ironically, introverts understand extroverts (even if they drive us crazy), but extroverts, through no fault of their own other than temperament and personality, are pretty clueless about introverts. In their cluelessness, they can often be insensitive, offensive, and abrasive. Introverts will take all of that deeply to heart for life sometimes while extroverts (a) don’t even realize what they’ve done and (b) forget it as soon as they’ve done it and move on to the next energizing thing that catches their attention.
This book will help both extroverts who want to understand introverts and will help introverts understand themselves better.
To Kay’s question, I’d venture to say “yes” as long as they have an active social network and excluding all other health/life factors. Mama was more of an extrovert (although she had some introverted tendencies at times) and I’m glad she was able to have a big social network as long as she was able to handle it. However, too much of noise, people, activity as her vascular dementia, Lewy Body dementia, and Alzheimer’s Disease progressed as well as becoming even more hard-of-hearing made a lot of social activity way too overwhelming and confusing for her.
As an introvert, will I have a shorter life? If so, no complaints from me. The quality of whatever life I have left and the character I develop with God’s help is all that’s important to me, not a bunch of Ecclesiastes 12 years.
This post will discuss the next three most common stressors – communication, vision, and hearing – that our loved ones suffering with these diseases experience and practical, common-sense ways that we as caregivers can recognize them, address them, and minimize or manage them as a source of stress.
It is important to say at the outset that the stressors we’ll be discussing today require some creative solutions taking the guidelines listed here because of the integral link that each of these, standing alone without prior existence (which we’ll also look at) to the development and progression of dementias and Alzheimer’s Disease, has to each other and to the diminishing functioning of the brain itself.
The first stressor we’ll discuss is communication. Issues with communication are often among the first signs of cognitive impairment with our loved ones and those issues become more pronounced as dementias and Alzheimer’s Disease progress. Common manifestations of early communication problems include:
Extensive searching for words when speaking
Misidentifying common objects (e.g., calling a pen a knife or a boy a dog) both verbally and in writing
Omitting words both verbally and in writing
Speaking and writing sentences or phrases that don’t make sense
Not totally comprehending or misunderstanding what is being heard or read
As the diseases progress, so do the communication problems, often resulting in a total inability to communicate verbally. Losing the ability to read seems to occur after this, but comprehension of what is being read generally precedes the inability to recognize written words.
Losing the ability to communicate – to express oneself in an understandable way, to participate in interactive dialogue, to understand the meaning of words – is frustrating and isolating for our loved ones suffering from dementias and Alzheimer’s Disease (it’s also frustrating and sad for us as caregivers because we so badly want to find a way to open that door wide open again), and the result of that frustration and isolation creates stress in our loved ones.
While we as caregivers may not be able to completely eliminate the stressor of communication, there are things that we can do to minimize the stress associated with it.
In the early stages, we can exercise patience in listening. This is easier said than done, but it is vital because it shows that we are interested in and care about what our loved ones are trying to communicate, instead of cutting them off because they’re taking a long time and faltering, and either completing what we think they’re trying to communicate, often erroneously, or simply dismissing them by interrupting them and saying what we want to say.
Here are a few strategies for keeping the lines of communication open for as long as possible and minimizing the stress associated with it:
Break complex ideas and tasks down into simple, understandable steps that are easy to comprehend and walk through the idea or process one step at a time. Repeating this step-by-step approach using consistent language each time, being a guide for our loved ones with each step, and going through each step at their pace will establish a routine of habits that eliminates much of the stress associated with what is essentially information overload for our loved ones.
Limit the number of options that our loved ones are presented with and make the options concrete. An example of how this would look is instead of asking “What do you want for dinner?,” ask “Do you want baked chicken or roast beef for dinner?”
For those situations where it applies, ask “yes” and “no” questions. (A caveat may be that as dementias and Alzheimer’s Disease progress, “yes” and “no” will get flipped around, so they may become an unreliable way to communicate.)
Use gestures, such as the motions of washing hands, brushing teeth, drinking something, or eating something.
For difficulties finding the right words, often times the easiest thing is to ask our loved ones to point to what they are talking about.
For sentences or phrases that don’t make sense, we should listen for meaningful words or ideas and then take those and ask questions about them to gain understanding into what our loved ones are trying to communicate.
For misunderstandings of what is being heard or read, it’s important for us to stay calm and not get defensive or reprimandingly corrective, because that will escalate our loved ones’ stress in a heartbeat. The easiest way I found to minimize this aspect of communication was to repeat what Mama had said and then ask her why she believed that or thought that. Once I gave her the opportunity to express herself and be heard, then I could find ways to gently steer her toward an accurate understanding and that eliminated both the stress of the immediate situation as well as the stress of the misunderstanding.
In cases where our loved ones are completely nonverbal, stress can be minimized by reading their nonverbal language (discomfort, pain, fatigue, etc. ) and by anticipating their needs (bathroom, food, drink, etc.).
Hearing and vision problems are often stressors for our loved ones suffering with dementias and Alzheimer’s Disease.
We discussed in detail many of the vision problems associated with these diseases in “‘I See Dead People’ – Vision, Perception, and Hallucinations in Alzheimer’s Disease and Dementias,” and how those vision problems (and the vision problems normally associated with the aging process) can be proportionately more severe as neurological damage increases, and we discussed ways to eliminate and minimize the stress related to those problems, so I encourage everyone to go back and read that.
Hearing is directly tied to neurological functioning as well, so as dementias and Alzheimer’s Disease progress in our loved ones, even those with normal hearing will experience auditory changes. For our loved ones with impaired hearing already, these changes are often complicated and compounded by the existing hearing loss.
Most auditory changes are in the form of auditory hallucinations – hearing someone who isn’t there – or auditory misperceptions – believing they heard something said that wasn’t said or believing they heard words said a certain way.
This causes stress in our loved ones, mostly because – and neither I nor anyone else explain definitively why this is the case – what they believe they’ve heard is negative, dismissive, rejecting, and abandoning and the fear associated with these possibilities opens their stress flood gates.
This stressor is manifested by our loved ones in the forms of verbal anger and, at times, physical anger, extreme agitation, and extreme restlessness.
The keys to managing this stressor – the best outcome is to minimize it, because since it is the product of fear of losing the most basic of human needs, it’s virtually impossible to avoid or eliminate entirely – lie with us as caregivers.
We must manage our emotions very, very carefully in both our speech and our actions, and this is one of our toughest battles in this journey with our loved ones.
Projecting gentleness, kindness, tenderness, patience, and equanamity at all times, whether we are experiencing any of those at the moment or not, is critical to minimizing this stressor for our loved ones who are suffering from dementias and Alzheimer’s Disease.
The more we can do this consistently, the more reassurance our loved ones will have that nothing negative is coming from us and that we will not dismiss them, we will not reject them, and we will not abandon them and the less fear (i.e., stress) our loved ones will experience.
Here are some guidelines on how to accomplish this:
We respond in a way that lets our loved ones know that we understand they’re concerned or afraid. Examples would be, “I know this is upsetting for you” or “I know this is scary for you.”
We reassure our loved ones that we’re in their corner. Examples would be “I’m not going to let anything bad happen to you,” or “I’ll take care of you.”
We redirect our loved ones’ attention to something else that’s positive, if possible (this sounds good in theory, but it doesn’t always happen in reality – sometimes we just have to stop at reassurance, walk away for a little while, and be sure to come back and try again later, especially if our loved ones are so worked up that there’s no calming them down nor persuading them that we’re the “good guys”).
In our next and last post in this series on stressors for our loved ones suffering from dementias and Alzheimer’s Disease will look at how physical health can be a stressor and how we as caregivers can minimize and eliminate, within certain parameters, the associated stress for our loved ones.
I will be posting from time to time on activities that we can do with our loved ones with Alzheimer’s Disease and dementias, so today I decided to start with jigsaw puzzles.
I remember as we were growing up that Mom would start a 1000-piece jigsaw puzzle, putting it on the end of our incredibly long kitchen table, two or three times a year, and we, as a family, would work on it, sometimes together and sometimes one at a time, for several days until it was finished.
Those puzzles became the focal point of concentrated time together, no matter what else what happening in our lives. Even if – as was often the case as the three of us kids crashed at the same time into adolescence – we were all out of sorts in one way or another with each other, those puzzles would bring us together. And even if we weren’t talking or we were sulking or stewing or whatever else the teenage years brings with it, we’d all sit down and work together for a little while.
I have often marveled at Mom’s wisdom in doing this. She could be the hardest of us, at times, to get “unmad,” but somewhere along the way, she realized doing jigsaw puzzles was a way to rebuild bridges among us and reestablish lines of communication.
Once we kids left home, I don’t remember Mom ever doing a jigsaw puzzle again. It wasn’t something that Dad ever did with us, so when the time came that it was just the two of them again, they found other things they enjoyed doing together.
But after Dad died and Mom moved into a senior living community she chose, Mom started working on jigsaw puzzles again. The “ladies” had a table in the community living room where they’d work on a puzzle. Because I was there every day, Mom would often ask me to come down and work on the current puzzle with her and we’d spend an hour or two working on it together.
As Mom’s vascular dementia and Alzheimer’s Disease became evident and were progressing, I looked for things we could do together that would keep her mind active and not frustrate her. I discovered that jigsaw puzzles were one of the activities that we could do.
But not just any jigsaw puzzles. Because Mom’s eyesight was getting worse as well and because her ability to identify shapes was declining, I found that large-format, 300-piece jigsaw puzzles were the best fit for our need.
Buffalo Games and Ravensburger make the best-quality large-format 300-piece jigsaw puzzles. It’s best to stick with their jigsaw puzzles that don’t have a ton of detail (like the city jigsaw puzzles) to put these together with our loved ones with Alzheimer’s Disease and dementia. Too much detail is too confusing and frustrating.
There are several online stores that offer large-format, 300-piece jigsaw puzzles. The two that I used most often were Bits and Pieces and Puzzle Warehouse.
Jigsaw puzzles, interestingly, can give us a lot of insights about how the brains of our loved ones are functioning and the progression of dementias and Alzheimer’s Disease.
I always had Mom pick out the border pieces. As her dementias and Alzheimer’s Disease progressed, this was more problematic for her. The day we started our last jigsaw puzzle together in May 2012, she picked out some border pieces, but most of the pieces were just random.
The last jigsaw puzzle we completed together, a month or so before, I noticed how frustrating it was for her to do, even though she wanted to do it, and knew somewhere in the back of my mind that was probably the last one we would do together.
The strangest thing I noticed all along, though, was that she would always go for the interior parts that were a solid color. Like the sky. Rationally, I knew that would be the hardest part to do because it was all one color and, yet, that’s what she would start on. I would try to get her to help me find pieces for more doable parts of the jigsaw puzzle and most of the time that worked. But inevitably, Mom would always go back to the solid colors. I’m not sure why, but it always fascinated me.
I’m thankful we had the opportunities to do jigsaw puzzles together. It gave us quality time together away from the day-to-day medical stuff and “have-to-do” stuff that can get in the way, if we allow it to, of our relationships as family, as friends, as parent and child. When we were working on jigsaw puzzles, we were able to capture the essence of who we were to each and other and together before all of that and who we were to each other and together in spite of all of that.
We created good memories that I’ll carry with me the rest of my life. I’m including some of the jigsaw puzzles that Mama and I did together.
Momma and Me had a wonderful story today about bedtime kisses. And how the circle of life has the daughter kissing her mama goodnight, then comforting her with further kisses throughout the night to allay her fears, to calm her back to sleep, awakening at all hours to make sure her mama feels safe enough to go back to sleep. She draws the parallel between this and her own childhood when her mama did the same for her.
It’s a poignant post as I imagine the many nights Mama got up with us, especially as babies and small children, to make sure we were calm, unfearful, and safe enough to go back to sleep. And I did the same for her as her days came to an end.
I’ve always been a light and up-and-down sleeper. I suspect Mama spent more time trying to get me back to sleep in my early years (as I grew older, I just stayed in bed awake, only getting up if I heard her up with one of her migraines pacing the halls, and then – now – as an adult, just getting up and often doing the same pacing she did) than I spent in her later years doing the same with her.
I wasn’t afraid of anything. I simply have never had a good sleep rhythm or pattern and that continues to this day. But, as I became Mama’s sleep comfort over the years, I realize that was a blessing that I was able to give her when she needed it.
As Mama did with me when I was small, I was able to return a lot of kisses to Mama as our roles reversed. I never put her to bed or back to bed without a kiss, a hug, and an “I love you.” When the nights were filled with the symptoms of Lewy Body Disease, I’d lie beside her and with one arm around her, hold her hand with my other free hand. It never failed to help, even if it didn’t completely stop it.
It’s the little things that make the difference. With babies and small children. With loved ones suffering from dementia and Alzheimer’s Disease. They don’t cost anything but time and patience. This taught me about love in action.
I’m thankful I had Mama and Daddy to model this for me as a child so it came naturally to me as an adult.
Remember the gifts your parents gave you, the sacrifices they made for you, the love they surrounded you with as they grow old and need the very same things from you. Life is a circle and those of us who are younger – well, everything in the universe in counting on us to complete it.
“And so it was, whenever the spirit from God was upon Saul, that David would take a harp and play it with his hand. Then Saul would become refreshed and well, and the distressing spirit would depart from him.”
I Samuel 16:23 (NKJV)
Music universally touches the soul. There is abundant evidence of how effectively music calms, soothes, and relieves the frustration and anxiety of those loved ones among us who, because of neurology and/or biology, are unable to always fully verbalize their needs and responses to our desire to meet them.
We grew up in home filled with music. Although neither of my parents was a musician – and they had only a 33% success rate of their children becoming musicians – they loved music. They had an eclectic and surprising, at times, range of tastes and genres. So from our earliest memories, music became the a mainstay of our lives.
My mom was the musical adventurer in our family, embracing and exposing us kids to a rich landscape that remains for us even though Mom and Dad are gone. I think I was the inheritor of Mom’s legacy, though, because my musical journey has always looked and looks much like hers in its breadth and diversity.
I will never forget a little road trip that Mom and I took just after U2’s The Joshua Tree was released. I loved U2’s 1983 album, War, but had been disappointed with everything before and after that until the release of The Joshua Tree. I was playing it and Mom asked me to turn it up.
I turned it up loudly enough so that she could hear the music and the words – and handed her the liner notes so she could read the lyrics – and as she listened and read, she smiled and said “I like this. It reminds me of the music I heard growing up.”
As I thought about it, I realized she was right about the striking similarity in tone and content between The Joshua Tree and the Depression-era music she’d grown up with that juxtaposed the discouragement with the harsh reality of life then with the hope and optimism of faith and belief in God and I understood that we both appreciated the album for the same reasons in different time periods.
One of her favorite tracks was “In God’s Country:”
As Mom’s vascular dementia, Lewy Body dementia and Alzheimer’s Disease progressed, I turned back to music for her to calm her, to comfort her, and to bring back happier times and memories of her life. And, as Mom took her last journey out of this life, I also turned to the same music for the same reasons.
(Ironically, so far, it is really hard for me to listen to all of Mom’s music yet without a lot of sorrow except in small bits and pieces here and there where I don’t have the opportunity to linger over it and have the flood of memories of our life through the years come over me like a tsunami wave.)
With technology, building a customized musical library for our loved ones suffering from Alzheimer’s Disease and dementias have never been easier. I will list a few low-cost and free options for building these databases for playback at any time.
Spotify has one of the largest musical databases around and is an excellent choice. An unlimited subscription is only $4.99 a month and provides unlimited play time with no commercials (the free version gives you 10 hours of playback a month with a lot of commercials). The “shuffle” feature works well with mixing the music up and making each playback unique.
While Mom was alive, I had the unlimited subscription. I created several playlists for her that we listened to a quite a bit during the last year of her life. A lot of times I’d play them softly during her naps, which became more frequent and lengthy during the year.
But when she was awake, we’d talk about the music and occasionally, we’d sing along if we both knew the words or I would sing to her and she’d smile watching and listening to me.
If you’d rather build your own musical database, the easiest way is to convert YouTube videos to MP3 files and download them to your computer (I’d suggest storing them in your Music folder in the respective folders you’ll need to create for different types of music or artists to keep them organized and easily accessible), where they can be played back with Windows Media Player.
The steps to do this are fairly simple:
Copy the YouTube video link you want to convert to an MP3 file
Follow the directions for downloading the converted file
Double-click on the file to play it in Windows Media Player
Once you’ve got Windows Media Player open, you can create playlists there and drag the MP3 files from your Music folders into each playlist. Then the next time you want to listen to a playlist, simply open Windows Media Player and click on the playlist. Windows Media Player also has a shuffle feature, which I would suggest using just to keep the order fresh and different each time a playlist is played.
So, if we haven’t already tried music as a comforting and soothing part of caring for our loved ones with Alzheimer’s Disease and dementias, then we need to implement it today. The benefits are not just to those we love because this is a wonderful way to connect and spend time together and intersperse some happy memories for us to carry with us when our loved ones are gone.
My memoir about my parents – who were both orphaned at very young ages – and their life together, which included adopting my sisters and me, and then Mama’s journey to the end last August, Fields of Gold: A Love Story, has been published and is now available for purchase.
I wrote this memoir in about six weeks just after Mama died, first to preserve our family stories for my sisters and me and her grandchildren, but then it evolved into a full-length book that chronicled our lives from beginning to end – at least for my parents – and I hope will live on as a tribute to their legacy and a reminder to each of us of the legacy we are now responsible for carrying on and passing on to the next generations.