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

Physical Touch Matters

Tactile has to do with the sense of touch. Dipping your hand into cool water is tranquil. Think of your favorite memories involving touch. I have many. One was walking barefoot through a freshly tilled field and digging my toes into the warm soft dirt. Another was sitting on the sofa and rubbing my grandfather’s head. He loved this and would often request it. I loved him too much to ever say I would rather be outside playing. That same love connected us as he lay in a hospital bed and made the same request. I pulled my chair close and wondered how many times will I have left to express my love in his love language.

Alzheimer’s disease often robs people of their fine motor skills. Activities they once enjoyed become a struggle. Opt to put together puzzle with larger pieces rather than small ones. I was able to find puzzles adults can enjoy with a smaller number of pieces and larger size. I avoided puzzles labeled for dementia. The person may still be able to read and feel ashamed or embarrassed. Be sensitive to this please.

Ask them to assist you and assign them simple task that don’t really matter. Let them fold towels and washcloths. Let them match socks. If they get it wrong no harm is done. They still feel needed and productive. Just consider what they can do safely, and ask them to help.

In prepping food let them tear the lettuce for a salad. You chop the veggies and let them arrange them in a salad or platter.

When presenting food, peel their orange before serving it. Just think of what you would serve a toddler. This can be done in a way that preserves their dignity. Prepare your own snack to look like what you serve them.

My mom loved pretty clothes. She struggled with buttons and zippers in the early stages. This ususally happens later for most people. It depends where plaque forms in the brain. We moved to pull on tops and pants without zippers. That was quite an adjustment for her. Thankfully, the local mall had a store that carried a line of beautiful clothing the she liked and it laundered easily. Then one day we had to replace the beautiful clothing with simple gowns that made life easier for caregivers who had to bath and change her.

When someone has dementia they may forget what to do with a hairbrush, comb or toothbrush. This is when you need to offer tactile cues. Please visit the following link to see this demonstrated. https://www.dementiacarecentral.com/video/hand_under_hand/#:~:text=This%20video%20clip%20shows%20how%20to%20use%20tactile,are%20also%20important%20%28time%3A%201%20minute%2030%20seconds%29.

Another thing you may face is how to handle inappropiate touchs. I was volunteering one day and had a new necklace on. It was a large flower and I was so grateful I had it on. A gentleman approached me with his hands extended toward my chest. I quickly took his hands, moved them to my necklace and asked if he liked it. The nurse who witnessed this action hid a smile but her eyes were dancing. Later she complimented me on my quick thinking.

Physical touch can be accomplished with ease once you observe and find what is comfortable for the person with dementia. I often take hand lotion with me on visits. No one refuses a massage of their hands and fingers as I talk quietly with them and rub the lotion in. Often a hug is appreciated. Hug from the side when possible. Ask if they would like a hug. Remember the above story and be careful! Many times a person with dementia and their caregiver need physical touch to remind them they they are loved.

Ladies love manicures. You never know how much your kindness means.

Touch sensitivity can be lowered. This can make it hard to sense pain or temperature, which can pose potential safety risks. They may not realize how hot or cold an item is. They may not feel pain from a small cut. Pay attention to their skin.

I know a man who refused to shower. His daughter questioned him about why he wasn’t taking a shower. He finally admitted that he could not adjust the water temperature right. The simple solution was for him to ask for assistance in turning the shower on. After showering he could step out and ask for assistance turning the water off. He could have been confused about how to control the shower handles or he could be sensing the water temperature differently than he had before. Sometimes it takes a little investigative work to discover the real problem. Others may refuse to shower because the water hitting their skin feels different.

I cannot discuss touch without mentioning how important spiritual touch is both to the caregiver and the person with dementia. Turning to God is a choice the caregiver makes. Reminding the person with dementia that God loves them is so important. Listen to music, read the Bible together. Pray together. Allow friends and family to be included in these activities.

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

Dear God,

It is good to sing your praise. We join hands today and reach for yours. Touch our hearts and reassure that your love is eternal.

Amen

Welcome to Our World

I read a news article today about what happened to our brains after living through the recent pandemic. Studies have been conducted about this and results are being presented. I just have to share a quote from the study with you.

“But we believe the cumulative stressors of the pandemic — such as prolonged isolation, disrupted routines, reduced physical and cognitive activity, and economic uncertainty — likely contributed to the observed brain changes,” Mohammadi-Nejad

We all know what it is like to experience all of the above for many years at a time as caregivers. How have we even survived? We have shown excellence in beating the odds and have God with us. We must be better equipped than most. ( Not judging…just observing).

Yes, this may sound snarky and uncaring toward those who struggle. I am venting and letting off steam for all of us who have learned to keep going when things are extremely difficult. Life can be very challenging and sometimes the ones who whine the loudest get all of the attention. Most caregivers I know are too busy to whine. We are equipped because we keep striving and learning. We fall on our knees when we are overcome and feel helpless.

Seriously, we do live in a world where isolation, stress, interrupted schedules and chaos can be the normal for many years as the person we care for is losing ground and we live in a state of flux where flexibility is critical. Please know that you are doing incredible things in a challenging situation. I would not wish this burden on anyone. Truly it is the heaviest one I have ever tried to survive. It was only when I chose to see caregiving as an act of love that I could see the positive side. It was only when I admitted that I didn’t have all of the answers that God became my guide in everything.

Our pandemic is known as Alzheimer’s disease. We have no vaccines. We sometimes feel abandoned because people fear the unknown. We do have others caregivers living in our situations. We are not alone! We have God and we have each other.

Word for Today

Ephesians 4:2

Be completely humble and gentle; be patient, bearing with one another in love.

Song for Today

Prayer for Today

Hello God,

It is me again just taking time to acknowledge you. When life is hard and I continue to press on, give me strength and people to stand with me. I thank you for allowing me to view caregiving as an act of love. You are my counselor, provider and comforter. You are the hope I stand on.

Amen

Inviting Help to the Caregiving Party

Communication has changed drastically and we still have not developed the skills to use it with effectiveness.

When I was younger we had a home phone that was on a party live. Due to limited resources in rural areas , Bell South provide service that connected several homes. Each family was assigned a certain ring. If anyone on the party line was talking, it prevented anyone else from using the line. Then any neighbors on your party line could ease their phone off the hook and ease drop. Gossip spread fast.

Prior to having our own line, my high school sweetheart, who later became my husband, would call and call only to get a busy signal for hours sometimes. When he finally was able to reach me, he would often detect someone picking up and listening. He would usually make weird remarks until they hung up. As I stated earlier, you have so many of avenues of communication now that my party line sounds like an extinct dinosaur. I gladly adjusted to new technology and appreciate the convenience.

This week I recieved a text with an evite attached. A cousin had sent it and asked me to send it to others for her. My phone then started getting texts with questions about the event. My thoughts were, “Hmm, I sent the evite as asked, but obviously no one paid close attention as they scanned one of their large number of text that day.” Had they carefully read the evite they would see I was just the messenger and not the host that could answer their questions.

People have so much communication flowing today that they often miss important details. Can you imagine how full the skies would be if everyone used a carrier pigeon for every text, call, facetime sessions and emails? Oh, I forgot to include instagram, tiktok and others.

Effective communication takes thought. Way too often, we fire off a quick text that gets taken the wrong way. The most effective communication is looking into someone’s eyes and watching their facial expressions. Men can be read easier if you know what to look for. A smile accompanied by tightened jaw muscles betrays their true feelings. Caregivers learn to calm themselves before talking to someone with dementia. We should practice this same hesitation and take time to phrase requests for help in a way that will be recieved correctly.

Caregivers find it neccessary to send invitations to join their caregiving party when overwhelmed. This invitation might be ignored. It might offend someone. It might lack the appeal to tempt some to accept. What would you even say? Let’s give it a try.

Dear Family Who Are Too Busy Too Care,

I am drowning over here. The dishes are piled in the sink. Laundry sits in baskets waiting to be done. The grass needs mowing. Mom has hidden my keys and her glasses today. She has 2 doctor appointments next week. We are nearly out of groceries and I am exhausted.

Would you like to drop by some day to help?

Wrong approach! Do not expect help from this invitation. This approach will not work. Expect criticism on your ability to handle things. Expect judgment about your complaining and whining. When communicating with family and friends, remember you will have to take a deep breath and carefully choose your words. Don’t just hint that you need help. When hints aren’t effective you will end up frustrated. Stating that you need help can make you feel guilty. It is hard to admit that you are struggling. It is hard for family to not get defensive because they feel guilty for not helping more.

After praying for wisdom and seeking God to prepare hearts, attempt an honest conversation with the person you are asking to help. Tell them your concerns and ask for possible solutions. Try something like this.

“Jane, mom has a cadiology appointment next Tuesday at 2 pm. My car needs an oil change and I really would like to get my hair cut. Could you please take mom for me? Even better, I will take mom and let you come for a visit on Friday from 1-4. She would love singing with you and I could schedule a haircut, get the oil changed and bring dinner home for all of us to enjoy. Which might work best for you?

It is alright to share that you are exhausted. Explaining the changes in behavior you are dealing with and a lack of sleep due to your loved one roaming at night might help your family have a clearer understanding of how difficult caregiving is.

Communication is vital for families who have someone with dementia. Find time to meet together. The quote below sums up effective communication.

“You can talk with someone for years, everyday, and still, it won’t mean as much as what you can have when you sit in front of someone, not saying a word, yet you feel that person with your heart, you feel like you have known the person for forever…. connections are made with the heart, not the tongue.”
― C. JoyBell C.

Take a break. Make a list of things you need help with. Decide who can help you. Carefully word your request and doing it over a cup of coffee may help. Choose your timing.

I know you are the one overloaded and should not have to make the request. I have been in your shoes. Don’t hold a grudge against others for not just seeing your need and offering their assistance without the ask. Everyone is wired differently.

Be blessed and pray for God to order the steps of others to come your way. Your most important communication will always be with God.

Word for Today

Moses had been given the task of being a leader over a nation of many. You have been given the task of leading someone on the path of Alzheimer’s and God’s words spoken to Mose can be applied to you.

Exodus 4:12 “Now go; I will help you speak and will teach you what to say.”

Song for Today

Prayer for Today

Dear Heavenly Father,

Here I am again feeling frustrated and exhausted. Forgive me for getting angry and hurt when family and friends abandon me in the task of caregiving. Teach me how to ask for their help. Prepare their hearts to hear my request. Let my communication be spoken with love and not sound like whining and complaining.

Amen

What Happens Now?

Graduating from being a caregiver is much like graduating from high school. The vast difference is you are wiser and well seasoned with life experiences.

When you graduate from high school you leave the close knit group of friends filled with hopes and dreams. A whole new world awaits for you to explore. You are excited and a bit afraid of stepping away from the familiar.

A caregiver has usually had their adventures of youth and is in the midst of following their dreams for the golden years.

Then unexpectedly your world shrank and your dreams were shattered by a disease called Alzheimer’s. Friends slowly faded away and your focus became narrrower and narrower. You found yourself in a new role of supporting someone who once was strong. One long day followed another as both of you adjusted. Sometimes you gave up hobbies and activities. Sometimes happiness was replaced with doubt, loneliness, heartache and confusion. Many days you answered the same question over and over.

You eventually made adjustments. You discovered your strengths you didn’t even know you had. You poured love out knowing the person you loved could feel it, but didn’t have much left to express their love to you. A smile or twinkle in their eye was enough on the rare days this occurred.

I know men and women who gave of themselves for years to their spouses. I am one of those children who had to become the caregiver of my parents even when they no longer recognized me as their child. Then the day comes that you say goodbye. Tears flow and hearts break. The life we have known ends and we are left picking up the pieces of our heart and trying to move on. Clothes and possessions have to be collected and dealt with. Small things trigger the waterfall of emotions. For me, I was cleaning out of my parents house . A guest room had a small bowl of potporri. As I poured it into a trash bag the scent of mulberry overwhelmed me. Mom’s favorite scent hit me hard. My husband came looking for me and held me as I sat down and cried. There is a season of readjusting.

Instead of being a senior in school you are a senior in life. You are dumbfounded in trying to process who am I now and where do I go from here. Finding your new role is not always easy. Take your time and pray about your next steps. Explore nature. Reconnect with friends. Try a new hobby.

Perhaps, a wiser and more mature you still has lots to offer to the younger generation. I thank you for the tremendous and valient effort you put into being a caregiver. You are worthy of being recognized as a hero. Only God knows your heart and only God can heal your pain. You will hear the words “well done my good and faithful servant” one day. While waiting, accept my virtual hug.

We will always remember the years of caregiving and the friends we made along the way. Much like climbers on Mount Everest, we struggled, we became stronger and have earned a rest.

Word for Today

Isaiah 49:13

Shout for joy, you heavens; rejoice, you earth; burst into song, you mountains! For the Lord comforts his people and will have compassion on his afflicted ones.

Song for Today

Prayer for Today

Dear God,

I thank you for the strength, compassion, and tender mercy you poured into my life during the caregiving years. Day by day you gave me the determination to be the best caregiver I could. You comforted me when the days were hard.

Today I ask that you give me opportunites to encourage caregivers around me. Remind them that they are loved and not alone.

Amen

Rest Relax Refresh

In theory these words are awesome. In reality as a caregiver they sound impossible.

I can relate. When I was a long distance caregiver for my mom, there were times that I longed for relaxation and fun. I had just returned from a couple of weeks with my parents. My grandchildren were in the backyard pool splashing and laughing. I longed to join them; however, exhaustion won over and I found myself on the front porch swing with tears flowing. Guilt prevented me from simply telling them that Grandma was not up for their visit and just wanted a good nap. After a few minutes of alone time, I dried the tears. I forced a smile and jumped into the pool with them.

I don’t consider those moments a pity party. I consider them honesty. I desperately needed a few moments of solitude before joining the real party going on at the pool. My little girls had a way of refreshing me with their silly and carefree play. Tension eased and I think their high energy restored mine a bit. I know their hugs refreshed my heart and soul.

We require rest. We have to find ways to relax and then refresh.

Financial and time constraints may prevent spa trips and reading a favorite book. Here are a few simple things all caregivers can do for themselves and with the one they are caring for.

Sniff an orange. Enjoy the citrusy aroma.

Take a walk.

Listen to music

Pet a furry friend

Learning to enjoy simple things rather than longing for bigger things is key to making the days easier to bear. Take a few deep breaths. Remind yourself that God has given you the ability to survive caregiving.

Word for Today

I will refresh the weary and satisfy the faint. Jeremiah 31:25

Song for Today

Dear God,

Sometimes I forget that the rest I need and the refreshing I long for can truly only come from you. Forgive me for trying to push on without turning to you. I come today to simply say I need you each and every day. When I am not able to go on, you carry me and then gently set me down renewed and ready to care for others. With a grateful heart I can go on. Thank you for your faithfulness that is new every day.

Amen

Shifting Tides

When you can’t change the direction of the wind — adjust your sails

H. Jackson Brown, Jr.

When I began this blog, I was in the midst of an incredible journey that tested me like no other. The winds blew in storms as I stood on shifting sand. The lightning strikes had names such as Alzheimer’s Disease, vascular dementia and cancer. Thunder rumbled in the distance whispering “this is more than you can bear”. A choice had to be made. I couldn’t control the storm, but I could change my reaction.

The storms finally abated leaving emptiness as I tried to process the heart wrenching pain.

You have walked with me as I shared part of my story. Most of it will only be known by my wonderful husband and closet friends. I have been open and honest. Writing has allowed me to work through grief and consider how all of the shifting sand made me stronger.

I stepped away from writing for a bit to enjoy life again. My decisions of what to do will be shared later in this post.

On our farm spring is a busy season. Nineteen acres abounds with wild blackberries, privet, weeds, fireants, snakes and opportunities to transform that chaos into lovely raised beds full of chard, lettuce, carrots, kale, herbs and garlic. We even used the chain saw and rediscovered our overgrown barn on the far corner near the woods.

The labor has been intense, but we know how rewarding it will be to enjoy the fruits of our labor. Only one grocey store sells chard. Can you believe even the farmers market doesn’t sell it? I am truly a southern girl, however my palette for greens is not limited to turnip greens and lettuce. I even saute lambs quarters and throw dandelions into salads.

A trip to the bay was enjoyed immensely. We set crab traps, fished and watched dolphins. On a whim, we stayed an extra week. It felt amazing not having to find someone to be on call if a parent had an emergency. That freedom helped me realize my role as caregiver had truly limited vacations and travel. Guilt tried to creep in as I reflected over the peace I now have. The tides have shifted and I am content knowing I have no regrets over the caregiving years.

As a seasoned caregiver, I can assure you that your hard work as a caregiver will be rewarded by small moments such as a shared laugh or hug when you know you have connected. I can assure you that you will survive. I can assure you that God walks with you. I can assure that life will change as you move on.

I am better equipped to offer encouragement, advice, comfort and education to others on the path of caregiving because of what I have experienced first hand. I have spent sleepless nights struggling with decisions or answering phone calls in the wee hours of the morning. I have answered the same question over and over and over again. I have watched a loved one cry out in pain when they can no longer tell you where they hurt. I have cried so many tears that I was numb by the time God called my parents, in-laws and cherished aunts and uncles home. I have been punched, hit and cursed at by a disease that robbed me of a loving parent. I get the demands and challenges you face.

My next adventure is beginning. I will be renaming this blog and will let you know when this happens. A pod cast featuring guests is in the beginning stages and two book ideas are in my head waiting to be on paper. I will continue to lead a local support group and am considering a google meet support group. This is the way my loved ones will live on in my heart and be honored. They instilled a faith in God in me and modeled a life of compassion, generousity, resilence and love that I now want to share.

I hope that each of you realize that you are amazing. You are able to meet the demands of caregiving. You didn’t seek this job. No one would. You aren’t perfect. Neither am I. Together we can encourage each other.

It is with excitement that I ask you to join me on my new adventures. You could be my guest as the podcast launches. You may want to join the google meet group. Leave comments if you would like to be a part of these.

Word for Today

Psalm 4:8

In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety.

Song for Today

Prayer for Today

Dear God,

I come to you with a grateful heart. You walked with me each moment as a caregiver. You spoke into my heart in the darkest moments when I felt helpless and afraid. I ask now that you do the same for caregivers aroound me. Reassure them that you have equipped them for the task. Let peace reign in their hearts and home.

Amen

Men Fix Things

Today I am addressing the men who are caregivers. Most men by nature are fixers. Give them a problem and they immediately begin making plans to fix the problem. Sometimes they don’t even stop to listen to the fine print details you need to express to them.

I am married to one of those men. He is amazing, He truly is a jack of all trades. He has a shop full of tools. He has backups for backups when it comes to being prepared. Now that you tube is available, he keeps expanding his knowledge. While I am inside writing, he is outside repairing pvc pipes on our rain catchment system.

I could continue to expound upon how much money we have saved because he doesn’t need to call a repairman. Having said all of this, even he had to face reality when he was caring for his mom with vascular dementia. He simply could not fix things for her. There were days that I observed as he applied every tool in his caregiver toolbox. He proofreads my blog. He listens to my lessons when I teach. He hears me counseling caregivers on the phone. He attends seminars with me. He has a vast amount of knowledge in this area. There are days that no tool works. You have to accept that it is in God’s hands and just be present and show love in any way you can.

Women, we face days that we just can’t fix it as well. I felt like a complete failure one day at my mother-in-law’s side while she was determined to get out of her hospital bed. She was a serious fall risk and was struggling with me as I blocked her way while calling for assistance. The dementia began to speak loud and clear in words I had never heard from her. She was kicking, shoving and doing her best to win this battle. She yelled this to me “you are the most demanding person I have ever met”. Instead of biting my tongue, I exhaustedly replied. “no, you are”.

Nurses arrived and I excused myself from the room and dissolved into tears. I tell all of you to remain calm and compassionate. There are times that it is very difficult. I knew she had always been used to getting her way. I didn’t expect the dementia to make determination her super power.

Men and women struggle. There will be days when you feel helpless and frustated. You have ridden and emotional rollercoaster that just never seems to stop. The ups and downs, the twists and turns have left you exhausted and hurting. You finally collapse into bed and tears fall. This is not the end. You must get up and go again tomorrow. The only thing I found that allowed me to keep going was to place the person I could not fix into God’s hands and then climb into those same hands so God could comfort both of us.

Each day of caregiving brings surprises through hearing words come out of a loved one’s mouth that shock you or losing your loved one who slipped out the door. Objects in your home may decide to hide in new places. A shoe may show up in the refrigerator. You are left with a choice to make. Try to correct the behavior or accept that today has brought a new adventure. Word of advice offered here. Trying to correct the new behavior is the wrong choice!

The only thing we can truly fix is our own reactions to the behaviors. If all dad will eat is ice cream, let him eat ice cream and try healthier choices later. If your wife refuses a bath, try again tomorrow. Choose your battles.

Word for Today

Isaiah 40:29

He gives strength to the weary and increases the power of the weak.

Song for Today

Prayer for Today

Dear God,

It has been one of those weeks where I tried to do things in my own wisdom and power. I so want to fix the behaviors and changes in my loved one. My heart is filled with pain while I mess things up and sit idly by. I need you to take control and give me the faith and peace to trust in you being in control.

Give me strength when I feel weak. I thank you for hloding me together when I feel as if I am faling apart.

Amen