Remember: Living With Dementia

Trying to remember. One of the symptoms of living with dementia. Daily visits with my own Mother has become a journey of remembering and prayer. Together we read the scriptures and ask God to help us remember.

“But I will remember the Lord’s deeds; yes, I will remember your wondrous acts from times long past.” (Psalm 77:11 CEB)

Stories of the past flood the brain in waves, until one moment, she reaches into childhood, then next moment she knows her location only to experience, a few minutes later, she has no idea who you are or the location of her house, not to mention her own bed in a long line of beds in the hospital. How to make it back to bed from the bathroom, which is just around the corner, becomes an impossible task. The simple task of spatial orientation becomes distorted.

That’s devastating to the dementia patient most importantly, but also to the people around them.

I wonder what would a brain look like when a person with Alzheimer’s tries to put thoughts together in some logical way?

Photo credit to Salvatore Vuono via freedigitalphotos.net
Photo credit to Salvatore Vuono via freedigitalphotos.net

The medical workings of the brain disease are too complex for me, but the scriptures shed a little light and imagination as to what could be happening.

Apparently confusion is a symptom of dementia frustration makes one unable to speak, at least for a minute or two. I’ve watched my own Mother try to remember, and how excruciating painful it is to see that she’s trying to remember, but just can’t formulate the words. I’m sure thinking far back into the past seems like an eternity ago.

Yesterdays are gone.

She keeps searching for the words to express herself. Sometimes they come a few minutes or hours later, but other times, it’s totally lost.

Maybe if I just wait in silence, it would come easier? She can’t seem to grasp new ideas so I find it’s better to repeat words and stay on topic. I talk about things that are familiar to avoid confusion. Like the time when she was back in Finland as a young girl and her father taught her to plough the fields with the work horse. She had worked like a man. Education was not important. She does remember going to the village school for three or four years.

During our visits, we laugh at the simplest things. Mom speaks in old riddles from the old country. Then joy comes, and we all laugh whether we understand the meaning or not. Sometimes I translate them to my siblings, even when they don’t make sense. Finding humor in the cutest things. One such line of an old song goes like this, “A little bird sings in her happiness.” Mother, like the little bird, bubbles into song spontaneously. The spirit is alive even with a brain damaged by dementia.

Emotional and spiritual health makes her life joyful in the midst of sickness and loneliness.

Although articulating ideas seems like a strenuous exercise for people with dementia, their personalities, for the most part, remain intact, at least that is the case for my mother right now.

She’s still there.

Suddenly when clear thoughts come, it’s a small victory when Mother suddenly remembers a childhood event, name of person, or where she is at the moment. Projecting thoughts to the future bring on new hope, and a release of more happiness.

We are fortunate as a family to have our Mother with us even with her brain disorder, and she’s still happy every time she sees us. Actually, the presence of her family and friends keeps her more vibrant than if she had been left alone, I’m sure.

Photo taken May 11, 2015 at TBRHC
Photo taken May 11, 2015 at TBRHC

Although I’m not the sole caretaker, I find healing in sharing my personal experiences of living with Mother, who has had Alzheimer’s disease for years, and lately the last few months as the disease progresses from moderate to severe.

Acknowledging the diagnosis is the beginning to my own journey of strength. When discouragement comes, I write a journal entry and rationalize it. It’s okay to try to understand it, but often there is little one can do except accept it, and trust God to work out the rest.

It’s a daily journey.

Recently as I visited Mother in the hospital, she tried to remember one of her grandchildren, she kept saying it will come later. Maybe it will, maybe not. I really think it’s not so out of the ordinary that she doesn’t remember all her nine grandchildren, especially since they don’t live in the same city, not even in the same country, and seldom sees them. We’re so hopeful that in a few months when all her seven children and ten grandchildren come to visit that she would remember when she sees them in person.

Trying to remember.

Learning to live with dementia twinges the core of the heart when it’s your own Mother, but we’re all there for her bringing happiness every time we walk into the room.

If you or anyone you know has a family member suffering from Alzheimer’s please get knowledge and support along the way. A novel, Still Alice, by Lisa Genova gives a practical glimpse of the disease.

Another day at her bedside in the hospital, and we say our goodbyes, and I remind her, “Today is a good day. Let’s live for one day.” Mom’s face extends into a smile first, and then bursts into hilarious laughter as she pulls on the cover ready for her afternoon nap. She’s tired.

I walk out, thankful for another day with our loving Mother. Trying to remember.

 

Lord, help us to remember your good deeds and the joys of our salvation. May your loved one also experience the joy that comes from recognizing a loving family. Would you bring peace in the midst of confusion, and disappointments. May we always reach for the loving arms of our Father God who loves us with an everlasting love.

What are your thoughts on dementia, and the discouragement that comes with it?

 

 

Pirkko Rytkonen

Wife, mother, and grandmother. Christ follower and seeker of truth. Blogging to inspire and encourage others.

10 thoughts on “Remember: Living With Dementia

  1. Thanks, Pirkko, for writing this message about your Mom. It brought tears to
    my eyes because it reminded me of my own Mom. Even though she stopped
    talking toward the end, her eyes would light up and she’d smile when we
    visited her. It’s a sad illness, but God does bring sweet memories and He is
    faithful as He promises.
    Blessings!

    1. Thanks for stopping by. Since the cure hasn’t yet been found we do our best to make life more comfortable for her. I also see the smile and light in her eyes when I walk into the room, and that’s the same for all visitors, whether family or not. We live one day at a time in God’s loving care and cherish the memories.

  2. Kiitos! I wish you all well and am so happy to see you going through this together. Anita, from down the road

  3. Nicely said you two,yes living with dementia must be hard for mom and family but knowing one day she will have eternal life with no illness gives me comfort.

    1. Yes Saul, mom remembers some scriptures and knows that heaven waits for her one day, but forgets a lot of stuff and can’t always remember her children’s names. She’ll get to meet most of her great grand children for the first time. Her struggles are real, but still she’s happy most of the time.

  4. That is an accurate description of dementia and your personal experience with mom is similar to what I’ve experienced with her. The one true phrase you used, “she is still there” is what I’ve experienced with her and others who suffer from dementia. Even when the disease brings violence and acting out to people who have never been violent, they are still there. Even at its very worst, there are still glimmers of the person being there. They are never lost completely even when their brain is being eaten because their soul is who they really are and that is in Gods hands. Nothing can destroy that.

    1. Hyvä kirjoitus, Pirkko, ja hyviä kommentteja. On surullista ja haikeaa kun ihminen kadottaa muistonsakin, elämä on joskus käsittämätöntä, vaikeaa ymmärtää. Äitinne on kuitenkin onnekas kun hänellä on vielä omaisia lähellään. Läsnäolon hetket ovat tärkeitä silloin kun kaikki muu alkaa kadota ympäriltä. Rakkaus jää jäljelle kun kaikki muu lopulta häviää. 1 Kor 13:8-

      1. Kiitos kauniista komentista. Uskovaisena aidin ilo on sydamessa joka viela loistaa ulospain sairauden keskellakin. Rakkaus peittaa kaiken. Aiti viela muistelee Suomesta asiota, siskoja erikoisesti. Hanen jokapaivainen sanonta on “En mina voi menna Suomeen enaa”. Perhe on aidille hyvin tarkea, ja viela elaa hyvissa muistoissa.

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