How Do Couples Cope With Dementia?

As a couple, my husband and I can communicate with each other with a certain look or touch. We have honed these skills during our 45 years of marriage. Just snuggling together or holding hands doesn’t always require words. When we first began dating we were with a group sitting around a campfire. He snuggled close and put his arm around me. Instantly, I felt at home. This was just the very beginning of moments, days, months and now years that wrapping an arm around me and holding me close have been home.

Should either of us ever develop dementia and roam around repeating, “I just want to go home” what will we really mean. I know most people just want to go back to what feels safe and familiar. Maybe our home will continue to be snuggling together where it has been safe and familiar our entire adult life.

Daily I praise God for allowing both of us to still have strong minds. Muscle strength has weakened, hairs have grayed and we search for our reading glasses to prevent eyestrain. We may not be able to recall someone’s name, but then it comes to us so normal aging is happening.

This afternoon as I write my hubby is strumming his guitar and writing a new song. Our hobbies keep our minds active. We love being outdoors with the dogs, chickens, bees and sheep. We are building a firepit area to entertain friends.

Our hope is that living in the moment intentionally and trusting God with our future will mean we never have to face dementia. We know that God will continue to be faithful. He has seen us through deep dark valleys and allowed us to rejoice from the highest of mountain tops. Should dementia come, we are assured that God will never forsake us.

Some of you have had to face dementia in a spouse. I hear your stories in our support group. I pray for you to still find moments each day where you and your loved one can still connect. Maybe a favorite song will draw you close. Perhaps a drive to one of your favorite spots will bring peace. Take every opportunity to have physical contact. This can be holding hands, hugging, or giving a gentle massage.

During the upcoming Christmas season play carols, eat Christmas cookies, drive around and look at the lights. Rediscover the simple joys. Large gatherings should be avoided but quiet visits with a few people at a time can still bring happiness.

Never quit saying “I love you”.

Most people my age made vows to love and cherish their spouse in sickness and in health until death. As a young couple we make that promise. Life happens and those promises are not so easy to keep. We make a choice to keep that promise and discover God has to give us the courage and strength to walk it out. The greatest honor you can have is to be the one who stands by that promise.

God sees your loneliness and struggles. He sees the tears shed when no one else is looking. Trust him to walk beside you in sickness and in health.

Word for Today

John 13:34

“A new command I give you: Love one another. As I have loved you, so you must love one another.

Song for Today

Prayer for Today

Dear Heavenly Father,

May I always find my home is being with you. When my spouse doesn’t remember my name please let them know my love. Show me how to express my love ina way that they can feel. Help me to keep the promise I made on our wedding day.

Amen

Every Day Heroes

It was an honor to spend the day with every day heroes last week. I work with a group that hosts an annual symposium for Alzheimer’s and Related Disorders caregivers. This group includes amazing home caregivers and workers in the field who come to earn continuing education units. This photo was taken during a presentation on music therapy.

My assigned task at registration and check in is with the actual home caregivers. This is where I make new friends and hug old ones. Some walk in looking exhausted and needing a break from caregiving. Others walk in as couples and it is evident that one is the other’s caregiver. Siblings come in together to learn and support each other.

Our goal is for all to learn new information and leave encouraged. Our amazing volunteers and sponsors make homemade cinnamon rolls, provide lunch, set-up and break down, donate beautiful floral centerpieces and love on those who attend. Each vendor provides great door prizes for the caregivers.

A knowledgable caregiver is a better caregiver. I call them every day heroes because they give their all each and every day. My heart breaks when they are overwhelmed with little support. Many have given up income to be a caregiver. Many sacrifice finances to hire help. All are on duty 24 hours a day.

When these heroes complain, they almost always tear up and apologize. Guilt of not doing better weighs heavy on their shoulders. Many have expressed at the support group I lead that they feel ill equipped as a caregiver. They truly want to be amazing at what they do. One was battling with cancer while being a caregiver. Another walked in and announced she had suffered a mild heart attack. The group has bonded through sharing their stories and encouraging each other.

Are you one of these heroes I love so much? Do you have a support group to build you up and encourage you? I encourage you to seek one out. Perhaps your church would sponsor a day for caregivers.

If I could be with you I would share a cup of coffee or hot tea and then send you off for a nap while I became the caregiver for a couple of hours. Since I can’t be everywhere for everyone I pray that God will send a friend or family member to do this for you.

Word for Today

Isaiah 41:10

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Song for Today

Prayer for Today

Dear God,

Lead me as I lead those around me. They now need me more than ever before. Show me how to connect with them so that they feel my love as well as yours. Thank you for the wisdom and grace you have given me as I serve as a caregiver to someone I hold dear.

Amen

Laughter Lightens the Load

Caregiving comes with tears. Before you drown in those tears, take a few minutes to reflect on the times you had to laugh.

Have you ever received a phone call from a parent telling you that their phone is not working?

Dad “I just called to tell you my phone isn’t working”

Me “Whose phone are you using now?”

Dad “Mine.”

A caregiver called one day to tell me my mom was having a yard sale. I asked how she knew this and was informed that mom had been throwing things into a closet all week for the sale. I asked about which closet and realized it was not a closet. It was a rear staircase that led to their garage. When I checked it, the entire staircase was full!

A friend left a large cup in her car with her dad. Later that day when she retrieved the cup, it was full of urine. Her dad had used it while she ran into a business. When asked about it, he informed her that a strange man hopped into the car, used her cup and left.

Another caregiver I know left his wife in the kitchen. When he returned he entered an “I Love Lucy” episode. She had poured liquid detergent into the dishwasher and turned it own. Bubbles were everywhere.

Some dementia patients have a lingered guilty conscience they have to clear. An 86 year old woman pulled me aside one day and insisted she had something she had to tell me. She led me to a corner and lowered her voice. She once again insisted I had to hear this. I calmly told her she could tell me. She leaned in and lowered her voice. I then listened as she informed me that she had a thing going on with my husband. It was very difficult to control my laughter as I thanked her for telling me. I approached the facility director with this information. She laughed and said the woman had a thing with her husband and most of the employees’s husbands.

Sometimes you can’t truly laugh until later, but you will have things to amuse you on this journey.

Humor is a gift. God gave us emotions and reassured us that they will change…

  a time to weep and a time to laugh,
    a time to mourn and a time to dance,

I wept. I laughed. I mourned and am still learning to dance.

A new rhythm is emerging as I assist others on their journey of caregiving. I still weep when they weep. I still laugh when they are able to laugh. I wrap my arms around them when they mourn. I am now able to walk away and focus on looking forward and making memories in the moment during our retirement years. Maybe the days on our farm playing with dogs and tending sheep will bring joyful dancing.

Just remember the emotional ups and downs are temporary. Don’t hold back the emotions. They may explode at the wrong time and place if you don’t release them when you can. Step away when angry for a few moments to regroup. Laugh privately at the funny moments and with a person when they see the humor too. Never make them feel as if you are laughing at them.

Just this morning a friend who is a caregiver sent me a funny text that had brightened her day. I was thankful that she is taking time to do this for herself.

Go ahead and smile as you read the quotes below.

“My job has made me a pro at finding things I didn’t lose.”

“Leftovers? I prefer to call them ‘meal prep for the next week’.”

“I argued with Mom for a half-hour to wear matching socks only to discover I went shopping with my shirt inside out.

All of you could add your own moments of humor. Go ahead and comment me with yours so I can laugh with you.

Word for Today

Psalm 126:2

Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, “The Lord has done great things for them.”

Song for Today

Prayer for Today

Dear God,

I am so thankful that you understand the many emotions that I am experiencing as a caregiver. Sometimes I struggle with these emotions but I know you stablize me and encourage me through all of them. Help me to find my joy in you.

Amen

The Perfect Caregiver

“Perfection is not attainable, but if we chase perfection we can catch excellence.” ― Vince Lombardi

There is no perfect caregiver. We all will miss the target. As Vince Lombardi stated we can chase perfection and catch excellence. If someone or something has the quality of excellence, they are extremely good in some way. If you are chasing perfection, you are discovering what your strengths and weaknesses are. Caregiving demands are high and varied. The tasks can change daily.

I think a perfect caregiver is someone who is striving to learn all they can about Alzheimer’s and preparing for changes that are inevitable. You make adjustments as circumstances and behaviors change. You find a balance of letting go of dreams and accepting the new future you face.

You acknowledge that God is the only perfect one. You will learn to rely on him to carry you when your load is too heavy for you to bear. I witnessed a man this week as he struggled to help his wife through some difficult days. The stress I expected to see was replaced with tear filled eyes and trembling hands. This man has a soft heart and the new situation he is in has taken quite a toll. Those are the days that break my heart as well. It was taking every bit of courage, patience, unselfishness and kindness he could find to survive. He was using all he had within him to show excellence as a caregiver.

My hope is that he has friends that will wrap their arms around him, pray for him and help him with practical things so he can rest. Caregivers want to get it all right. There are some things you can’t fix or get it right. Tiredness and frustration can make you hangry! I know that is usually used to describe an angry person who is very hungry. A hangry caregiver gets grumpy and irriatable. They are hungry for many things!

  • the normal they used to have
  • friendship and fellowship with others
  • assistance with chores
  • compassion from family members
  • meals someone else prepared
  • peaceful sleep
  • time to enjoy a hobby
  • hope that life will become easier

People can help with most of this list. Neighbors may offer assistance. Other family members may offer to provide care. Not eveything on this list will be met by people. These unmet needs have to be turned over to God.

Personally I remember times that I had to stuff pain, resentment, anger and grief aside to function. Imagine a large box that was packed to the brim. Then I would have to tearfully dump that box at the feet of Jesus. He would wipe away my anger. Comfort my pain and strengthen me to pick myself up and keep going refreshed and renewed. This cycle repeated itself often. I came to realize I could never be a perfect caregiver. I could catch excellence and be a better one.

You too can provide excellent care. Perfection is never going to happen. Look at your failures as learning experiences and improve or adjust your methods. You will find yourself growing in confidence as the journey continues. Be bold and be strong!

Word for Today

Jeremiah 29:11

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Song for Today

Prayer for Today

Dear God,

Thank you for always having a plan even when I don’t understaand it. Give me the ability to trust you to carry the load when I can’t. Give me answers when I don’t know what to do. I choose to trust you and not myself.

Amen

Circadian Rhythm and Alzheimer’s

The cicadian rhythm is the name of your body’s internal clock. Most of us know that it tells our body when to sleep and when to wake up. Many things can effect our circadian rhythm such as daylight savings time, food intake, stress, travel, night shift jobs and mental health condition. You know how you feel with jet lag or on the morning after daylight time changes. Everything seems sluggish and a little off for the normal person. Someone with declining cognitive abilities feels it in an amplified way.

According to the Cleveland Clinic your body sets your circadian rhythm naturally, guided by your brain. If your brain is impaired, then you can expect a little bit of turbulance in your circadian rhythm and you can expect unusual behavior.

Since we will be setting our clocks back an hour in November, you should be prepared for behavior changes such as listed below.

Restlessness

  • Pacing
  • Sundowning
  • Jumpiness
  • Irritability
  • Repetitive mannerisms and questions
  • Wandering
  • Hoarding
  • Sleep disturbances
  • Sleeping more during the day

In the fall as we have fewer daylight hours, take advantage of being in the sunlight as much as possible. Turning the home lights on and closing the blinds in the late afternoon may help with sundowning. This allows a transition from day to night with a little control.

Alzheimer’s causes sleep changes. These suggestions may help with those. Play soothing music during dinner. Try to relax and spend time doing quiet activities as bedtime approaches. Keep a bedtime schedule and routine. Treat any pain. Keep the bedroom temperatue comfortable.

Next week may be difficult due to trick or treaters so if possibe protect the person with dementia from scary scenes. They may have difficulty distinguishing real from costumes. You have the time change the same weekend. Plan ahead to make it easier on you and the one you care for.

Word for Today

 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. Matthew 11:28-29

Song for Today

Prayer for Today

Dear God,

I thank you for always being there for me. I don’t always know what to do or say as a caregiver but you know my heart. You know the pain and see me struggle. Give me peace so that I can rest when I lay my head down tonight.

Amen

I’ve Got That JOY JOY JOY down in my heart!

Enjoyment can be defined as the process of taking pleasure. I have pondered this a bit while being a young mother, a wife, a caregiver and then an older person who is no longer needed as a caregiver. During the stages of life, I have taken pleasure in many things. The circumstances around me have forced me to find new ways to find enjoyment.

If you are in a season of caregiving, you may have days you longed for something to enjoy. Maybe you have had to give up golf, tennis, travel or other activities. This is when you have to find new things to do together that both of you enjoy. Perhaps watching videos about travel is something you can enjoy. We do this because our budget as retirees limits us on travel plans. We have learned to enjoy and explore local places. Take a drive this fall and enjoy the color and cooler air. An apple orchard is always great for an apple cider. If you and the one you care for are mobile, rake leaves. Make sure to snap pics to record your memories.

My mom loved working crossword puzzles. We went to simpler puzzles with larger pieces when she could no longer work her old ones. Sitting there was not enjoyable at first. Seeing how content she was made just being with her enjoyable. When volunteering at a memory care unit, I found just watching the beautiful faces light up when we played games made it very enjoyable for me. It reminded me of watching a child learn to read. The sparkle in their eyes warms your heart.

You will make sacrifices during the entire time you are a caregiver. Keep looking and you will find ways to find joy in new things. After my mom passed away, my dad was lonely. He had given up a lot and was showing signs of cognitive decline. He found great enjoyment watching Alabama Girl’s softball and Alabama football. To be with dad, I would drive over and settle in to watch softball games and tournaments. Eventually, I got interested in the games as well.

The true source of my joy is God.

Romans 15:13

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Some days were extremely difficult as a caregiver and losing my parents. My husband and I did what we could for our parents. There is a scripture that I believe is true for my life.

 “Honor your father and mother”—which is the first commandment with a promise—  “so that it may go well with you and that you may enjoy long life on the earth.” Ephesians 6:2-4

We are now in a new season as some of you are. You honored the ones in your life who needed you. Now it is time to rediscover things on this earth that you can enjoy.

I am enjoying the farm life. We just added sheep and these beautiful livestock guardian dogs to our animals. We now schedule our days around feeding animals, gathering eggs, and grinding wheat to bake bread. It is quite a change from living in a metro area for over twenty years.

It is a wonderful change. As a child I longed to live in a subdivision like my friends did. Now,I am very content with the sounds of nature such as waking up to the rooster crowing and birds singing, growing our own food, and breathing in fresh air. It has plenty of adventure as well. In the last week I have been shocked by a hot wired fence, searched for a lost ewe who fell into a hole and herded sheep to a new area of the pasture. I had joked that as youth pastors we had herded teens. Sheep had to be easier… not true!

I share today to reassure you that new sources of joy can be found.

Helpful hint for October:

Halloween can be very nerve wracking for someone with dementia. Do not make the mistake of thinking someone loves children so they will love Halloween. The disturbance of the constant doorbell ringing will be startling. Seeing masked and costumed people can be frightening. Try to make plans for a quiet and sheltered evening.

I once advised a woman that taking her mother to a party at Chuck E Cheese for her great grandchildren was not a good idea. She ignored me and did it anyway. Her mother was frantic when they returned her to her assisted living facility. She even tried to jump out of a moving car. The poor woman was way too over stimulated and terrified by the characters and noise. Please realize that a person with dementia cannot process loud and active situations like you do.

Word for Today

Psalm 16:11

You make known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.

Song for Today

Prayer for Today

Dear God,

I thank you that you can give me contentment in whatever situation I find myself in. Sometimes it is a struggle as you know. I want to find my joy in you and trust you to open my eyes to the things you have given me to enjoy. Forgive me when I long for things I have had to sacrifice to be a caregiver.

I will praise you because the joy of the Lord is my strength.

Amen

What I Learned By Being A Caregiver

The sun comes up every morning and goes down every evening. I learned to appreciate the simple things. Some days were wonderful and some were difficult. God was with me every step of the way. I trusted him as I walked each step. I tiptoed at first but soon learned to boldly step into motion when it was needed.

I made many new friends and was so thankful for special friends who listened to me without complaining or telling me what to do. They became sisters that I love dearly. We laughed, cried and prayed together. They reminded me not to lose myself in the process. Life would go on after my caregiving season was over.

Seeking answers to questions helped me prepare for changes before they happened. Educating myself taught me to plan for the unexpected and sometimes shocking events that unfolded. The power of knowledge was critical to have in my toolbox.

I decided that setting boundaries protected me at times. Avoiding social media was a strong boundary I had to set. My life had to be focused on my parents and in-laws. They needed me to make them the center of my life. My circle included them, my husband and few others. If I tried to explain how challenging caregiving is, those who have not walked in those shoes could offer comments that hurt and were critical. Bitterness could take root. To keep my heart free to love, I had to walk away knowing that I was doing the best I could.

My awareness of how prevalent Alzheimer’s and other dementias is in senior citizens is acute. I find myself recognizing it almost every time I am out and about our community. Defensive driving takes on a whole new meaning when you see how many drivers continue to drive after being given a diagnosis of mild dementia. You never know the moment that cognition will decline and an accident will occur.

I discovered that I am much more resilient than I thought I would be. Introverts don’t speak out sometimes, but being an advocate demanded a boldness that was awkward at first. By the end, I had no issue speaking out when it was necessary.

My faith is stronger than it has ever been. God alone empowered me to be a caregiver. He gave me wisdom, peace and hope on the darkest days and nights. He reminded me that I was not alone. He was my comfort when I said to say my final goodbye.

I used to worrry about what if this happens or that happens. Worry doesn’t do anything but rob me of time that can be spent on better things

Having trouble believing in myself has been an issue for me all of my life. Surviving 14 years as a caregiver has shown me a few things.

What I look like should not hold me back.

Having a degree in a field unrelated to what I do now doesn’t limit what I can or cannot do.

If I have a dream, money should not hold me back.

God has given me a voice and I can use it to share with other caregivers.

I must be bold and step into new adventures with confidence.

Naysayers will always criticize, offer unsolicited advice and rain on my parade. I can apply the words my husband’s grandmother gave us when we were young. She quietly pulled us aside and said, “Just smile and listen, then let their words go in one ear and out the other”. Heeding her advice has usually worked well. She was an amazing woman who loved God and us deeply. She knew that we loved God and would trust him to be our guide.

The rain may try to shut down my parade, but I have the power to dance in the rain and think about how amazing my flowers will be afterwards.

Word for Today

Jeremiah 29:11

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm youplans to give you hope and a future.

Song for Today

Prayer for Today

My Heavenly Father,

i praise you that I can cry out to you and trust you to work everything out for my good. Sometimes I don’t recognize what is for my good and get ahead of you. Forgive me and teach me to slow down and trust you more.

Amen

Caregiver Anger

Anger is real. How you react is what matters the most. It is not always a person that makes you angry. It can be the disease itself. It can be insurance companies, Medicare, Medicaid or the medical community. You can be angry at the person you care for. You can be angry with friends and family that don’t help carry the load. You can be angry with yourself because you feel like a lousy caregiver.

Anger is normal and can be expected when facing circumstances that are out of your control. You may be as fearful as you are angry. It would be a good idea to write a list of who and what you are angry about. No one has to see this list, however, you may feel better expressing your angry and asking yourself if any of the people or things you are angry about can be changed.

If there is a way to safely address this list, in a calm manner talk with who you need to. If there is not a way to change circumstances, ask God to help you accept this. Ask yourself what triggered this episode of anger and what condition you were in when it happened.

Physical and mental fatigue are very likely culprits when you are easily angered. Getting enough sleep may mean napping when the one you take care of naps. I can remember being pregnant with my second child. I had an active one year old. When she took a nap, I napped with her so I could be patient and loving instead of grumpy and tired.

Eat healthy. Keep fruit and vegetables handy for you and the one you care for to grab when hungry. Use the crockpot or instant pot to prepare meals on busy days.

Go for a walk. Take time to enjoy nature.

Listen to your favorite music.

Pray.

Step away from a stressful situation and simply breathe a few slow breaths.

Address the fears you have. This may mean preparing for the what if moments before they happen. I knew my mother had Alzheimer’s and it was prgressive and eventually fatal. When my dad was unable to take care of her, I researched memory care assisted living facilities and put her name on the waiting list of those I liked. I did this in their city and in the city I lived in. This was because I knew that should dad pass away, I would have to move mom to me.

Financial and legal planning took place early on in my family. My brother and I were involved together with our parents. We never had to worry about them losing their home. We understood their medical directives. Deal with these items now, not later.

Learn to appreciate help when you can get it. Keeping a grateful attitude is better than simmering in resentment when help is not given.

If there is any pain in your past relationship with the one you care for, please find a way to forgive when you can no longer have a meaninful conversation with them. Forgiveness opens room in your heart for love, compassion and kindness. Forgive siblings or children who don’t step up to the plate and assist you. Focus on making the most of the time you have because you did step up to the plate.

Lastly, forgive yourself. This is the toughest job you will ever encounter. There is a learning curve and you will get better each day. When fear and anger try to overshadow the goodness, try to take the thoughts captive before they grow out of control. Trust God to give you peace.

Word for Today

Ephesians 4:26

“In your anger do not sin”: Do not let the sun go down while you are still angry,

Song for Today

Prayer for Today

God,

Thank you for giving me emotions. Sometimes I get frustrated and allow them to overwhelm me. Help me to stop and reflect on how my actions could hurt others. Help me to trust you to handle the people and circumstances that I cannot control. Guide me to take peaceful actions rather than lash out. Heal my heart from hurts and fears so that I can love the way I should.

Amen

Parkinson’s With Dementia

Parkinson’s dementia is closely related to Lewy Bodies dementia.

Studies have found LBD and Parkinson’s disease may be linked to the same underlying abnormalities in the brain processing of alpha-synuclein. LBD and Parkinson’s disease dementia are similar except for the order in which the symptoms develop.

The timing of when symptoms occur may determine which diagnosis a person receives. If thinking problems appear within a year of movement difficulties, doctors diagnose Lewy body dementia. If dementia develops a year or more after Parkinson’s disease symptoms begin, doctors diagnose Parkinson’s disease dementia.

Common symptoms of Parkinsons with dementia include:

Sofly spoken muffled speech

Misnaming objects

Trouble understanding complex sentences

Difficulty focusing

Memory loss

Confusion

Moodiness

Change in appetite

Delusions

Change in energy level

Sleep disturbances ( vivid dreams)

Vision issues like difficulty spotting objects in a cluttered space.

Trouble planning and staying on task

Language challenges

This list may be alarming at first. Remember that changes occur over time. Always remember that the person is not acting out; however, the disease is. Here are ideas to assist in caring for someone with these behaviors

  • establish and follow a routine when possible
  • being extra comforting and patient
  • limiting distractions and avoid crowds
  • try to maintain a consistent sleep schedule
  • declutter your living space
  • learn all you can about Parkinsons dementia
  • Join a support group

Keep a journal of behavior changes, dels]usions, nighttime disturbances, etc. This will help you when speaking with physicians. Log all medication changes as well.

I know a family dealing with this dementia and have watched them make adjustments. Their family members have had police show up in the night because he called and reported someone had broken into their home. Now, he has taken to roaming around partially clothed. Recently he heard my voice as someone was listening to me speak on a recording. He told them that sounded like someone I know. He then tried to remember my name but could only come up with my husband’s name. He referred to me as his person.

Be calm. Be patient. Allow them to try to communicate and try to interpret what they are trying to say. As far as the police calls, most law enforcement departments now have a data base that contains information you provide alerting them that a family member at your address has dementia. This can allow them to have a mental health officer available. For the other issue, just close your blinds.

Take a deep breath. You can do this. When things become difficult, step away for a few minutes and try a new approach. If you read through previous posts you will find other helpful information. Many of the behaviors and symptoms are similar with all forms of dementia.

Word for Today

Psalm 31:24

Be strong and take heart, all you who hope in the Lord.

Song for Today

Prayer for Today

Dear God,

Thank you for being faithful. There are days I feel like the battle will not end. On those days that I struggle to stand on hope, hold me as I wait on you to move on my behalf. You are the only thing I have that is always true. Help me to be able to say “It is well with my soul”.

Amen

Life With a Diminished Brain

Today I read a prompt to write about what life without a computer would be like. Immediately, I thought about what life would be like without a fully functioning brain. If I had no computer, I could find a work around. As a child I researched by reading real books. I wrote with pen and paper. Truly, being without a computer would simply be a huge inconvenience.

Trying to live my life with a diminished or diseased brain is extremely frightening. Just imagine losing your ability to control your own life day by day, then year by year. The lose of dignity and independence would feel as if you were in a small room with the walls and ceiling closing in on you. Eventually, you would be lying in a bed breathing shallowly as you waited for your last breath.

I watched my mom do just this. She lived a full life before Alzheimer’s disease began to steal her abilities to continue to be a loving person dedicated to her family. A loving family, successful career, beautiful home and amazing marriage had been dreams fulfilled. If a painting by a master artist could have portrayed her life it would have been a treasured masterpiece. No one would have allowed it to be hung where the sun could cause it to fade away.

Then this horrific disease, Alzheimer’s, caused her memories to fade We were left straining to hold on to all we could about her laugh, her smirk of a smile, her little love pats she gave the grandchildren and even her fear of mice. Many days I long to just hear her voice.

I know that she loved God and that he was her comfort in her final years. Hymns playing in her room brought peace. When we prayed, she would squeeze my hand. Even though she didn’t recognize me as her daughter, she knew we belonged together.

Perhaps every child of a parent with Alzheimer’s disease has a little nagging thought of getting this disease. I know that I do. Just last night I was in a booth with other volunteers for our city’s First Friday event. We were distributing pamplets about Alzheimer’s and related dementias. We were letting people know about our upcoming symposium for caregivers. Each of our group is experienced personally and professionaly with the burden caregivers carry.

We had a few people stop and talk. We had many slow down, look over our materials and quickly turn away. We watched as spouses walked past guiding their husband or wife through the crowd. At the end of the evening, all of us knew that many who had passed our booth are already showing signs of cognitive decline. This made me even more aware of how prevalent it is.

That nagging fear of knowing that could be me sometime tried to surface. I refuse to live my life controlled by this fear. I want to live a full life engaging with friends and family as often as I can.

I choose to exercise my body and mind while making healthy food choices. I choose to trust God with my future. The following scripture is my verse I choose to stand in faith on.

Isaiah 46:4

I will be your God throughout your lifetime— until your hair is white with age. I made you, and I will care for you. I will carry you along and save you.

My soul will be saved when my body fades whether that is mentally or physically. None of us live forever on this earth. When we face trouble and suffering, we often complain that life is not fair. Only God sees the complete picture. We have to trust that his plan is for our best.

Word for Today

 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. 2 Timothy 1:7

Song for Today

Prayer for Today

Dear God,

You amaze me when I watch you order my steps and give me peace of mind when those steps are challenging. I trust in you when fear tries to come in. I know that you have an army of angels that surround me. The trials here do not compare to the glory I will see one day when I stand at your feet and you open my eyes to your plan. Give me strength and hope as I trust in you.

Amen