Talking Through a Veil of Cobwebs...

Living 1,500 miles apart, I really looked forward to the weekly phone calls with my mother, who was nearing her 80^th birthday.  Our conversations were sprinkled with news of relatives and mutual acquaintances, our herb and flower gardens, and outings to the theater or symphony.  She repeated her stories every now and then, but who doesn’t lose track of who has already heard which story?  However, Mom was beginning to recall fewer and fewer details about people and events.  It didn’t really bother me much until she told me that “Steve stopped by the church for a visit.”  It startled me because Steve, my father, had been dead for ten years. 

I was so taken aback by this that I must have sounded like a water sprinkler trying to turn on and could only sputter, “Oh… well,… how was he?”

“He looked grand in his Scout uniform.  I hope the pastor lets him start a troop here,” she said very sweetly with a hint of shyness in her voice.

I was stunned.  Mom and Dad met when he called on the church pastor to talk about getting a Boy Scout troop started.  She was the church secretary and, apparently, caught his eye.  After a whirlwind courtship, they were married a few months later.  That was fifty-five years ago.

The silence on my end of the phone must have jarred my mother back to the present because she continued the conversation talking about the Texas governor’s race, as if there were no time lapse at all between the two events.  

In thinking back over the last few months, I noticed that her memory of things was becoming more confused, but the depth of it had crept up on me.  Over a long period of time it had not been so noticeable, until all of a sudden strange comments and questions started jumping out that made me wonder if I had heard her correctly.  The next two years were filled with many garbled conversations, like she was trying to talk to me through a veil of cobwebs.  At first she would repeat the same story from week to week; and then sometimes in the same conversation she repeated herself several times; until finally she couldn’t remember what she was talking about halfway through a sentence and ended it with “and so forth and so on.” 

Finding the correct words to use became more and more difficult for her.  She searched her memory bank for simple words like fork or table.  When the word for toothbrush escaped her mind, she referred to it as the thing that you clean your teeth with.  Words, mostly nouns, were substituted for other words and I quickly learned not to correct her and to just go with whatever she managed to say.  During that time of change in her speech patterns she tried so hard to express herself and I tried to refrain from picking at the incorrect grammar or fuss over the oddities in word choice.  It was good just to hear her voice and I treasured the fact that she wanted to reach out to me, for I had been warned that the time would come when she would make no effort to communicate at all.  

Topics of conversation became fewer and sentences eventually consisted of mismatched phrases and tenses, leaving me exhausted trying to figure out what she was trying to say.  I desperately wanted to fill in the blanks and help the conversation along, but knew that would only frustrate her further.  My replies became more and more noncommittal in an effort to encourage her to continue speaking.  The topic did not matter.  If she wanted to recite the alphabet to me or try to sing her favorite childhood songs, I let her freely speak.  We laughed often – not sure what about, but if she found some unknown topic amusing, we had a good chuckle over it.

Eventually, talking on the phone across all those miles consisted of yes and no questions on my part and “uh-huh” and “uh-uh” on her part.  I cried those days when the nurse at the Alzheimer’s center conveyed to me that my mother had heard the question, but only nodded her head.

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With every change in a person’s speech comes another adjustment for their caregiver.  The sensitive caregiver will sit quietly and listen to Mom or Dad and encourage them to talk at their own pace about any topic they choose.  A non-judgmental and unhurried setting gives him or her a sense of security and encourages them to continue expressing themselves as long as they are able. 

The conversation may be nonsensical, which your parent may or may not realize.  One common change in communication is confabulation where Mom may put bits and pieces of several stories or events from differing timeframes all together into one story, which she completely and emphatically believes to be true.  Alzheimer’s individuals live in their own time and sense of reality.  They talk of things from fifty years ago as if the events happened yesterday and combine details from completely unrelated parts of their lives, including news broadcasts, the weather, and something they heard from a neighbor.  Reacting as if this new reality is totally plausible reassures your parent that you are there for them and enjoy listening to their stories. 

Listening is only one part of the equation for communicating with someone who has memory loss.  Responding in a caring manner with your own voice is another part.  It is the rare individual who upon hearing an inaccuracy in a statement does not want to correct it, but to do so with an Alzheimer’s person often invites an indignant or hostile reaction.  An appropriate response to the story about the monkey who came into Dad’s bedroom last night and stole his shaving cream would be something like, “Well, we will have to add shaving cream to the grocery list.”  Positive affirmation of his world with a calm and matter-of-fact reply offers much needed stability to his world.

Touch is the third part of the communication equation.  Sometimes there just are not words to adequately calm a distressed elder who cannot recall who that was that just came to visit.  A reassuring hug or hand on Mom’s arm may be all that is needed to tell her everything will be alright.  Sitting beside her while watching her favorite cartoon on television, touching elbows, holding hands – it all communicates warmth, love and security.

As the disease progresses, the Alzheimer’s person may not be able nor desire to enter into a dialogue with you.  Their world becomes smaller and the political news of the day no longer interests them.  Basic feelings of discomfort and frustration, wellness and contentment take over.  The observant caregiver looks for different kinds of communication as verbal speech fades away.  When Dad begins frowning and rubbing his forehead or vigorously scratching his forearm, he may be telling you that he has a headache or his skin is dry.  He may not be able to differentiate between whether he feels cold and needs a sweater or needs to use the bathroom.  Non-verbal gestures and behaviors become his language.         

Acting out is a common term used for children when they throw a tantrum and lose control of their emotions.  Your Mom may display similar tendencies and emotions when upset.  A sensitive caregiver sees this as the language of someone who is communicating frustration, anger, pain, or some other distress, and the appropriate response from the caregiver is to redirect Mom’s attention elsewhere while translating the message she is trying to convey.   

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A Bandaid for the Caregiver is dedicated to all those families who journey with memory loss in their lives and the sharing of hope and joy and new possibilities.  In each difficult moment there lies an opportunity for love.

Journey with courage,
Elaine   

THE BANDAID BOX…

Trying to maintain a conversation with a memory impaired parent takes strength, energy, and patience. No one gets it right every time.  The more you practice active listening, compassionate responses, and reassuring touches, the easier it becomes.  Every day brings new opportunities to connect with your loved one.  Actively listen, respond with compassion, reassure with a touch and both of you will be rewarded for your effort.         

“A gentle answer deflects anger, but harsh words make tempers flare." Proverbs 15:1

“The best and most beautiful things in the world cannot be seen or even touched - they must be felt with the heart.” ~ Helen Keller  (1880 – 1968)

STAYING ACTIVE…

Word recognition is a communication skill that can be practiced.  Buy two sets of word flash cards with pictures of the object and play “Concentration” (matching like words and symbols) or “Go Fish” (card game with flashcards instead of playing cards).

Make signs to place on familiar objects around the room, such as door, chair, lamp and make up games using those signs.

As long as your parent can read, establish a daily routine of him or her reading out loud to you and discussing the storyline as much as they are able.  At some point the reader and listener will switch roles as your parent loses the ability to recognize and pronounce words, but the tradition of being together to enjoy storytime will continue.

For long distance caregivers, talking to Mom and Dad on the phone is precious time well spent.  As long as they are able to, let your parent take the lead in the conversation and you follow it wherever it takes you.  Use nonjudgmental words and phrases in reply, avoid asking concrete questions that require answers they may not be able to recall, and listen to every story as if it were the first time you have heard it.  Following the progression of the disease, be sensitive to how his or her communication skills change and adapt your comments and questions accordingly.  When responses become few on the other end of the line, continue to let your loved one hear the sound of your voice, for they may not remember your name or relationship to them, but he or she will remember the warm feeling conveyed in your tone and words.

 

TREAT YOURSELF…

Take time to enjoy one of your favorite forms of communication by attending a concert, going to a play, or listening to a political debate.  Set aside time for yourself every week to read.  Make it your time to escape to some faraway fanciful place, dive into a murder mystery, or revisit a biography.

Keep up with friends and family through social media.  Find out what others are doing on Facebook , Google+, or Twitter and enter into their conversations. 

Gentle Reminder:

Conversation with others outside of your daily routine with Mom or Dad is important for your own wellbeing.  Actively engage in conversations those that lift you up and make you laugh.

SAFETY TIPS…

As we are discussing how better to communicate with our Alzheimer’s parent, we must remember that some communications need to be discouraged, including phone calls from solicitors and mailings asking for contributions. Other communiqués should be protected from being thrown out, such as bills and financial dealings, letters and cards from friends and family, and legal notifications.  For in-home caregivers screen phone calls, remove the phone from easy reach of Dad, sort the mail and give him flyers and other appropriate pieces.  For those not living with Dad it may help to have the mail forwarded to your address and arrange for phone calls to be forwarded to your cell phone number.

https://www.usps.com/manage/forward-mail.htm

ABOUT ALZHEIMER’S…  

Every stage of this disease carries its own effect on a person’s ability to communicate.  Early on the individual makes up words or phrases, substitutes words, or mixes up the order.  More time is needed to form a thought and to find the appropriate words to convey that thought. 

In the mid-stages, sentences become particularly garbled and make no sense to the listener.  The person, however, believes that they are making perfect sense.  The fact that others cannot understand them is bewildering. The later stages find the individual unable to complete a sentence, and eventually he or she speaks only rarely.

To facilitate communication, remove as many distractions as possible, maintain eye contact, and speak in friendly non-judgmental tones. 

http://www.livestrong.com/article/11539-need-alzheimers-affecting-speech/