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 you, plans 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

Lewy Body Is Different

Alzheimer’s disease has many early signs such as memory issues. The mental cognition has a slow decline over time. Lewy Body is not so predictable. I experienced this first hand. My mother had Alzheimer’s disease. We thought that my mother-in-law had vascular dementia and no one tested for Lewy Body disease. As I educate myself about LBD, I tend to lean heavily to the thought that she had it.

Lewy Body Disease (LBD) is a progressive briain disorder. Alpha-synuclein is a protein found in the brain. When these clump together it is known as Lewy bodies. Cells normal function is interrupted resulting in cognitive decline, hallucinations, delusions, sleep disturbances and motor issues.

I saw signs of cognitive issues but they were vastly different than Alzheimer’s. Her memory was pretty much intact. She would appear perfectly normal one day and confused the next. Her essential tremors ramped up. Most of the families members did not see symptoms in the early stage.

She would insist that someone had told her they would take her shopping and be upset when they did not show up. She would attempt to bake a cake and leave the flour out. She developed paranoia. She loved football and watching her favorite team. She would cheer over a play and then cheer again over the replay or go to the kitchen and never return to finish watching the game.

Then when her spouse passed away things escalated quickly. A huge delusion caused us to have to move her to an assisted living facility. Once there she often called to give me detailed accounts of visitors who were never there. Her hallucinations were described in full living color. She would be very convincing in her stories.

We experienced capgas syndrome. This is a psychiatric disorder where she held a delusion that we had been replaced with imposters. We would go visit and she would tell us who we were supposed to be but we were not real. We were imposters who looked, acted and sounded like us. Try explaining that one! Some day the chef or nurse were imposters as well.

A bouquet of flowers brought her joy. One day a lion was in the flowers. The next day monkeys were in the flowers. When I went to visit, a dancing lady was in the flowers. Before we all got stressed out, I decided the flowers were wilting and needed to be disposed of. A nurse smiled as I deposited them into the trash. Apparently she had be informed of the busy bouquet.

Falls became more common.

She became less social.

The whole experience was very different than the one with my mom. I truly wish I had known more while my mother-in- law was alive. We did the best we could.

I highly recommend a book if you suspect your loved one may have LBD.

Living with Lewy’s by AmyJ Throop and Gerald S Throop. It opened my eyes to many things. Hopefully, you can get information that helps you. Don’t give up when seeking a physician that can give you a diagnosis other than mild cognitive decline.

Don’t give up. You are learning and improving as a caregiver each day.

Word for Today

Proverbs 2:6

For the Lord grants wisdom! From his mouth come knowledge and understanding.

Song for Today

Prayer for Today

Dear God,

I thank you that I can rest in you on the days that are hard. Give me wisdom as I help my loved one struggling with reality. Give me courage. Give me strength to trust you.

Amen

Amazing Caregivers

It is a joy to be able to interact with amazing caregivers. They can be young, old and in betweeen. Their time is given freely or they may be paid. The amount of pay is usually not why the job is accepted. It is accepted because they have beauitful caring hearts.

When I ask a man I know how things are going, he almost always responds with a smile. He loves his wife dearly. As the conversation lasts a little longer. He admits that today his wife knew him but on many days she doesn’t. Her lastest thing is to move and hide things so he is always searching for misplaced items.

This morning I spoke with a paid cargiver. She said that during the night the woman she takes care of awoke and cried out because her room was on fire. The caregiver looked around and realized the glowing face of a clock had set off the panic. She turned the clock and reassured her. The lady then asked her to please lay down by her side. With a smile she did just that and the other one fell fast asleep.

I am a part of an organization that has a board consisting of several people who are employed as nurses, social workers, and nursing home administrators. Often I overhear how they have bought food for a family, picked up prescriptions for someone, allowed a visit to turn into much more as they changed a person and helped bath them while there. This world is full of people that know how to love and show love to families that need them.

If you are reading this and feeling like a forgotten person who is overloaded, I get it. Too many times you must bear way more than a light load. You are amazing as well. This job is never easy. There are few rewards other than knowing you are doing your best under trying circumstances. Please know that God is with you. He can give you wisdom, courage and strength to continue to be amazing. He amazes us and enables us to amaze our loved with with compassion and tenderness on the most demanding days.

My applause goes to you amazing caregiver!

Word for Today

Galatians 6:4

Pay careful attention to your own work, for then you will get the satisfaction of a job well done, and you won’t need to compare yourself to anyone else.

Song for Today

Prayer for Today

Dear God,

Shape me and mold me into a better person. Give me compassion and shower my soul with love that you pour into me so I can pass it on to those you have placed in my care.

Amen

God Does Not Forget

We lose hope, get worn out, become discouarged and forget we cannot do it all. Our frustration snowballs into a large mound of guilt and helplessness when we cannot penetrate into the mind and soul of a loved one who is trapped. They live in a body with a mind that can no longer express itself. We can try to meet them but only God can go there sometimes.

God has known our loved me since knitting them together in their mother’s womb. He knows their heart and soul. His spirt can penetrate through the fog and reach them.

I have sat in my mom’s room when all she could do was moan and groan. It felt as if a knife was stabbing me in the heart. The only way I could stay with her was knowing the God was with us.

In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. Romans 8:26

God’s spirit not only groaned with mom, but God hears our groaning.

Exodus 2:24

God heard their groaning and he remembered his covenant with Abraham, with Isaac and with Jacob.

Exodus 6:5

Moreover, I have heard the groaning of the Israelites, whom the Egyptians are enslaving, and I have remembered my covenant.

We are living in a time when groaning is slipping from all of our lips. Life here is winding down and we are seeking an eternal home. The bible tells us the following:

Romans 8:22

We know that the whole creation has been groaning as in the pains of childbirth right up to the present time.

I do believe that my mom was looking to heaven. Perhaps her groaning was her crying out to God to welcome her home. This brought me peace on the days there I hurt the most.

My husband and I have been traveling over the last couple of weeks. During our travels God allowed us to meet random people who mentioned they had just lost a grandfather to Alzheimer’s or were living with a uncle who has Lewy Body disease. This was at an outdoor homestead expo. As we talked a small group gathered around us and joined in. Most of them either had a family member with Alzheimer’s or had lost someone close to them who had dementia. The phrase we heard again and again was that God is the only way they got through this.

Later, we attended a wedding. There was a memory table with photos and Bibles that had belonged to the couple’s grandparents. I looked at these and knew how much these grandparents loved their grandchildren and modeled a life of love for them. I looked at the pic of my mom and dad and hoped God could let them see a glimpse from heaven of their growing family. As much as I would have loved to have them with us, I had rather know they were in heaven where disease and age not longer caused them to groan.

As you continue to serve as a caregiver, know that God is with you on the good days and the toughest of days. He will never abandon you or your loved one. We can continue on in His strength until one day when God hears all of our groanings and calls us home.

Have a blessed day filled with peace and comfort.

Word for Today

2 Corinthians 1:3

God Offers Comfort to All

All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort.

Song for Today

Prayer for Today

Dear God,

Thank you for the peace and comfort only you can bring. Thank you for hearing the groaning and cries from our heart when the pain hits hard. When we feel helpless, you step in. You understand our pain because you sent your son to die on a cross for us. We look forward to the day you call all of us away from the suffering and pain. Give us courage to carry on until then.

Amen

Rediscovering Yourself After Caregiving

My husband and I are fencing acreage on our farm to raise sheep. After years of ministry and secular jobs, we are excited to begin this adventure. Many lessons have been learned as we served in churches and as our own family members caregivers. How did we decide that adding sheep would be the thing we both wanted to do?

Reflecting on the bible verses below helped us arrive at this decision.

Psalm 23:1

“The Lord is my shepherd; I shall not want.” – Psalm 23:1

Isaiah 40:11

“He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.” – Isaiah 40:11

John 10:11

“I am the good shepherd. The good shepherd lays down his life for the sheep.” – John 10:11

Psalm 78:52

“But he brought his people out like a flock; he led them like sheep through the wilderness.” – Psalm 78:52

We both know that depending on God fully is the only way to live a life with peace. When we look out over the fields we will remember how God has been our good shepherd. We will shepherd our sheep and be grateful for all God has done for us.

Our goal is for our farm to be a place where people feel God’s peace and love. Visitors can sit on our porch or around the fire pit we plan to build and share life. Needs, hurts and heartaches will be discussed. Prayers will be prayed and we can share our story of God’s goodness and love.

I challenge you to look at the things you have laid aside to be a caregiver. Even if you are still a caregiver, you can evaluate where you are. What skills did you gain? What did you do well? What do you look forward to later?

For us, farming helps us slow down to rest and let our bodies and emotions heal from the 15 year marathon we ran taking care of our parents. We frequently pause now to watch sunsets, hummingbirds and butterflies. We listen to doves and quail. Our rogue rooster gets out and follows us like a puppy. Our hens gift us an abundance of eggs. We fish, garden, read, listen to music and breathe fresh air.

Writing is something I dreamed of doing as a child. Books were my friend. Finally, I am beginning to step into the waters as a writer. I enjoy teaching others about Alzheimer’s and how to be a caregiver. I have developed a deep love for connecting with people with Alzheimer’s disease.

Prior to being a caregiver there were several things I would never have believed. One was that I would love moving back to a country home. Two was that I have the confidence to lead. Three was that God would allow me to be tested with fire and come out safely on the other side. This leaves me assured that even unanswered prayers are heard by My Good Shepherd and He has a plan bigger and better than any I have ever had.

Trust God with the plan for your life. He is chiseling away rough edges. He is allowing pressure to shape you. You are a diamond that He is polishing. It hurts. It is lonely, but you are never truly alone. Sometimes God is silent, but He is there. One day on the other side of caregiving, you will understand what God was doing in you as you poured your life out to others.

God has a plan for the remainder of your life. Trust Him.

We will protect our sheep just as God protects us. Read the verses again and let your soul and faith be renewed.

Word for Today

Proverbs 3:5-6

Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take.

Song for Today

Prayer for Today

Dear God,

I praise you for being my shepherd. When I stumble and flounder around, you guide my steps. When I am afraid you are here. When I feel inadequate, you remind me that your strength is perfect. Humbly I follow you knowing that your path is the right one.

Amen

Make the Most of Your Time

Alzheimer’s disease erases many memories for the person living with the disease. Memories for family members will live on and be cherished. We have technology now to save voices, laughter, stories and visuals of our family and friends. If you have a family member in the early stages of dementia please use that technology. I left messages on my phone for years just to hear my parents voices.

Even if you do not have Alzheimer’s in your family now, you may someday. Listening to the spousal caregivers talk about what they miss the most is causing me to be more deliberate about making and saving memories that I and my husband can hang on to should one of us be left alone.

I changed phones and lost a video that I treasured. My mom was dancing and laughing with her youngest grandson. Prior to having Alzheimer’s she would never have acted this silly. We all sat watching in awe. We were in awe over the fact that she was truly happy and in the moment with him. I was pondering about how much longer we would be able to hear her laugh.

Years later I watched that same grandson see my dad wiggle his ears. Every grandchild, niece and nephew loved watching dad do this little trick. Dad had been so busy taking care of mom that he hadn’t thought to show this youngest grandchild his ear wiggling. My nephew sat trying his best to master this for himself while dad smiled. Dad passed away one week later.

Don’t put off taking small trips, watching sunsets, sharing hugs and expressing love to each other. Make the most of your time. Life moves at a fast pace and it is way to easy to get caught up in the busyness. My heart hurts when a senior citizen is the sole caregiver for their spouse. They look at me and tell me they cannot ask their children to help. They have their own lives and are busy.

Allow me to speak for these caregivers. Find the time to honor your parents. You are robbing yourself of something you can never get back. You can find time to meet a friend for coffee or attend a sporting event. You can find time for social media. You can find time to check on mom and dad.

“Family is not an important thing. It’s everything.” —Michael J. Fox

A huge excuse we often hear is “It’s Complicated”. When someone has Alzheimer’s their life and their caregiver’s life are complicated. Family can find a way to work through all of the complications and help each other survive. Asking God to make a way for you to do life together is a great first start.

Personally, there was a lot of travel and expense involoved during our time as caregivers. I gave up a job. God has abundantly blessed us along the way. It was an honor to be with my parents in their final days.

Caregivers, speak up. Give your children an opportunity to find ways they can help. Give them opportunities to make memories while they can.

Word for Today

1 John 3:18

Dear children, let us not love with words or speech but with actions and in truth.

Song for Today

This song refers to when we allow walls to form between us and God.

Prayer for Today

Dear God,

We need you to tear down walls and heal our hearts so that we can share life with those in our family. Show us how to build bridges instead of walls. Draw us closer to each other as we draw closer to you. Teach us to find balance in this life. Give us moments of genuine love as we show compassion and grace to those around us.

Amen

Alzheimer’s Language

I am far from being bilingual. This makes it difficult when I am around someone who’s native language is not the same as mine. Caregiving for someone with Alzheimer’ disease has forced me to face the stark reality that I had no choice but to learn to speak and understand a language that my parents now spoke. One parent lived in a new territory that I refer to as Alzheimer’s World. My other parent was residing in a territory I will call Mild Cognitive Decline World. To travel to their world, I sometimes felt like the one who was confused and lost. The most challenging part was having two parents living in different worlds at once. While neither was fun and exciting like Disney World, both provided excessive amount of adventure.

Once upon a time, I lived in “Normal World” with my parents. They were great parents and did their best to provide a nourishing and loving environment for my brother and I. They were active in their church, jobs, Lions club, Band Boosters and Atheletic Boosters. Steady and dependable are words that describe them the best. No family is perfect, but we grew up thinking ours was close. My brother and I were busy with our own families after becoming adults. Life was good.

Skip ahead several years and we began to see cracks in the armor of our parents. This happens as we become adults. This was different though. Slight personality changes were obvious in our mom. Dad was doing a wonderful job of hiding this from us in the beginning. Eventually, it could be hidden no longer. We were faced with seeing that “Happily Ever After” was not going to be the ending of their story.

Dad needed help navigating the progression of Mom’s Alzheimer’s. Stress was mounting as he floundered. He was giving a major effort to care for her. This once young athletic guy with no sisters even learned how to apply her makeup and assist with her hair. He cooked, cleaned and gave it his best.

That is when my quest to learn all I could about this disease began. I bought books, searched online and found a caregivers support group. In a sense immersing myself in this was a boot camp. Much was learned quickly. I want to share a brief amount of helpful information to help you learn Alzheimer’s language.

Rules for the Caregiver

Do not argue.
Do not try to talk them out of anything.
Do not try to make them remember.
Enter their reality.
Do not try to reason with them.
Stay calm

The disease is in control and not the person you are caring for. Try to separate the two.

Speak slowly and give them time to process short sentences
Rather than give an order, ask for a favor
Monitor your own emotional state
Redirect and distract with music and other activities such as snacks or taking a walk
Release your expectations of them to be who they were in the past.
Remember that their new reality is just as real to them as yours is to you

Facial expressions and your tone of voice speak volumes!

When dad began to have unexplained falls I suspected mini strokes. While he was mom’s primary care giver, he was beginning to show a loss of judgement. I would observe and make suggestions. Dad would get upset and walk away from conversations. I learned to let it go and wait. He would call me a couple of day’s later with a wonderful idea of how to handle a situation. I would listen as he told me the exact idea I had given him. I would then let him know that I thought it was a wonderful idea. This preserved his dignity and it worked. One day he ws mad and informed me that my brother and I were trying to control his life so were no longer his power of attorney. The next day he called wanting me to come and explain insurance papers to him. I told him I was no longer his power of attorney. He replied, “Oh, yes you are”.

Learning the best way to communicate with him was to allow him to think everything was his idea. You will learn to speak a language that they understand through trial and error. It can occur though if you are persistant.

You can do this! God will be your constant help when you feel anxious, sad or ill equipped.

Word for Today

Colossians 3:12

Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.

Song for Today

Prayer for Today

God,

I praise you for the love and kindness you show to me. Give me the ability to share that kindness as I learn to communicate with others, especially those with dementia. Help me to listen more and speak to them in a way they understand. My greater desire is for you to continue to speak to their hearts and souls through their confusion.

Amen