“You really love me, don’t you?”

“You really love me, don’t you?”

By Kerry Mills

My weekly visits to the Convent are where I can usually count on having at least one of the highlights of my week.  This Convent is where the retired sisters are living, and about eight months ago I started training the staff and creating a program for the sisters.  There is one part of the home that is set aside for those who need a bit more attention due to their cognitive impairment.  It is in here that my favorite little lady lives.  I will call her Sister Martha.  She is very witty, super sweet and full of compliments.  She can also be the first to resist care if she is approached the wrong way.   I think the meanest thing she ever said to a staff member was, “You bum!”  Her heart is so sweet, you just want to hug her!

Like many people who suffer with Sister Martha’s condition, she is very forgetful and often can become sad, or afraid of the whereabouts and therefore the safety of her parents and brother, who have long since passed away.  She can become suspicious of those who want to help her get ready for the day.  The moment she hears the word “shower” she becomes defensive and will not get up off her chair or out of her bed.  She loves to compliment the other sisters and the staff.  She loves to read whatever is put in front of her.  She loves to eat, and more than anything, she likes to laugh.

This week, as I walked into the living room and saw my sweet friend, I went over and kissed her on the forehead.  She looked up at me and said, with a serious face and eyes glued to mine, “You really love me, don’t you?”  “Of course I do!” was all I could say, as I sat down next to her and we held hands.  

Sister Martha was having a bit of a rough morning.  She thought that everyone was going to die.  Where this thought came from we don’t know.  She has many fears like this.  I assured her that I would keep her safe, and sat with her for a short while.  This led to some small talk, and then to big laughs about silly stuff.  The staff had already put on her favorite DVD, an Irish singer who Sister Martha felt she knew so well because, according to her, he visited every day!  When I returned an hour later, Sister Martha was singing along and was as happy as could be.  The staff, like every other day, knew how to assure her they would keep her safe; they knew how to engage her in things that would take her mind off of her fears, because they knew her.  They listen to what she says and therefore can provide more comforting responses.  

We cannot always fix the issues that our loved ones with dementia are dealing with, but we can certainly love them and make sure they know that they are not alone.  And with this as your aim, I am confident you will do more for your loved one than you can even imagine!

Living with Purpose

Living with Purpose

By Jennifer Brush, MA, CCC/SLP

Each and every one of us likes to feel that we are needed.  We like to help out, make a difference and be useful.  Helping others adds purpose and meaning to our life.  Completing a job-well-done gives a boost to our self-esteem.  People with dementia have the same desire to contribute to their household or the community; the need to be productive doesn’t end once someone has a diagnosis of dementia.  In fact, people in the early stages of dementia who are aware that they are having difficulties with word finding, memory, have an incredibly strong desire to be needed by others.  As they struggle to communicate and remember daily information they need to have tasks at which they succeed.  They require positive reinforcement that they are valued.  Although people with dementia may not be able to contribute in exactly the ways they could before, there are still so many things they can do.
My friends Angela and Jeff come to mind.  Jeff has moderately advanced dementia and his speech is very limited.  He has great difficulty communicating his needs to his wife Angela.  However, he still has a desire to do things for her.  He enjoys clearing the table and washing the dishes after meals.

Because this has always been part of their routine-she cooks and he cleans up-it’s familiar and comfortable to him.  One daily ritual they’ve had for years is a 10:00 AM coffee break and snack in the living room.  Jeff will put placemats on the coffee table, get out the cream and sugar, and fold the napkins.  Angela makes and serves the coffee and then Jeff cleans up.  In a life filled with daily challenges to communicate, being able to helpful and complete these tasks for his wife truly makes Jeff feel good.

If you care for someone who has dementia, try to think of small ways throughout the day that they can help you or others and make that part of the daily routine.  People with dementia will have less anxiety and confusion throughout the day if their daily routine is consistent.  Look for opportunities to involve others outside of the family unit so as friends, colleagues, or church members.  Being able to socialize has significant implications for quality of life.  Maintaining meaningful relationships with staff, family, friends, and visitors, in large part, is based on being able to communicate.  People with dementia who experience language impairment are more likely to become socially withdrawn unless caregivers help them to remain active.

Here are some ideas of helpful tasks you may want to incorporate into the daily routine of someone with dementia:
• Set and clear the table
• Wipe the table and wash the dishes
• Help prepare meal by washing fruits and vegetables or mixing ingredients
• Read to a child
• Read the mail to a spouse
• Teach child to play a game
• Walk or feed a dog
• Brush a dog
• Sweep, dust, vacuum
• Rake leaves
• Plant flowers
• Weed garden
• Fold laundry
• Take a meal to a friend
• Visit someone who is home bound

Make sure to say “thank you” for the help you do receive.  A hug, pat on the back, or praise for a job well done are all great way to acknowledge someone’s contributions.  Ralph Waldo Emerson wrote, “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”

The Joy of Discovering Preserved Abilities

In honor of Better Hearing and Speech month, I’d like to say a few words about communication and the relationships we have with our loved ones with dementia.   I’d like to share a story with you.  Last year I worked with a client who lived with frontotemporal degeneration.  I made a once weekly home speech therapy visit to help her with communication skills and to find ways for her to become engaged again with her family and friends.

Frontotemporal degeneration is a progressive deterioration of the temporal and frontal lobes of the brain. These areas of the brain play a significant role in decision-making, behavioral control, emotions and language. This degeneration of the brain can cause a language disorder called semantic Primary Progressive Aphasia (PPA).   The distinguishing feature of semantic PPA is difficulty generating or recognizing familiar words. Some individuals have difficulty recognizing familiar objects and faces as well.  Fluent, spontaneous speech is preserved, especially in early stages of the disease.  Word-finding and naming deficits are common.  Neuroimaging studies reveal loss of brain volume, blood flow, and/or neural activity in the left temporal lobe of individuals living with semantic PPA.

My client, Gina (name changed) had been living with PPA for several years and by the time I met her, she was speaking only automatic greetings and phrases such as “That’s okay.”  Gina was unable to answer even the simple yes or no questions that I asked.  Because Gina could not communicate her thoughts and needs to her family she became withdrawn and depressed.  She sat in her favorite chair for hours every day and her family took over all of the cooking and household chores that she used to complete on her own.

When I first met with Gina and her family, I asked them a few questions:
“What are some things that have always been important to Gina?”
“What did Gina enjoy doing most during the day?”
“How do you think Gina would like to spend her time now?”
I learned that Gina’s religious practices were central to her sense of wellbeing.  Her son indicated that each night the family took turns sharing their blessings of the day with each other and saying a meal time prayer of thanks.  Gina had not been able to participate for many months.
Next, I spent time with Gina to discover her preserved abilities.  During the speech-language evaluation, I learned that Gina could read and sing, and that she loved to do both!  When I work with clients, I learn about their skills, interests, and abilities and use those to compensate for their deficits.  I collaborated with the family to write blessings, prayers and favorite hymns in large print so that Gina could read them.  Through practice, repetition, and encouragement, Gina began participating in the dinnertime sharing of daily blessings by reading a preprinted note card of her choice.  She began singing with music the family played throughout the day and the expression of sadness gradually began to fade from her face.

As a result, the whole family dynamic changed.  After several weeks of educating the family about what Gina could do, rather than focusing on what she couldn’t do, Gina was participating in chores, singing throughout the day, and reading labels we made for common household items to express her choices and needs.

Communication takes many shapes and forms, just like us.  Throughout life, all the little things accumulate and make a relationship with our loved ones what it is. Don’t forget those little things; savor them. Find joy in the little things and your relationship will prosper.  Look for the person within, not the dementia.

© 2014 Jennifer A Brush, do not copy or distribute without permission