Hiding the Stress and Pain

Some of us carry pain and stress inside. Others see a smiling face and admire our strength, especially those in our church. They know our trust and strength are in God alone. We do have peace, but even those who have faith and strength hurt.

Yesterday I saw a woman hugging and smiling as she entered the sanctuary. When I asked how she was, I saw a tiny hole in the “everything is ok” mask. A few questions coming from a fellow caregiver opened that hole and I saw weariness, tiredness and pain.

God began to remind me of the many times someone had not only prayed for me but actually put their arms around me and gave me a safe place to let the raw emotions escape as tears. I approached her and did just that. She sobbed as I prayed.

I know her faith in God is solid. I know she has a beautiful heart and spirit. I walked in her shoes not too long ago. I walked by faith as she does. I tried not to complain and assured others I was ok. That is all very true for me and my friend. We can be strong Christians and still feel things intensely. We feel guilty for not being all we can be to our family when caregiving takes so much of our time. We need to rest and have little time for it.

Do yourself a favor and confide to a close friend that you need prayer and to just be held for a few minutes.

“When you receive or give a (consensual!) hug, your brain releases a flood of mood-boosting neurotransmitters and hormones, including endorphins, dopamine, serotonin, and oxytocin”. neuroscientist Dave Rabin, MD, PhD.

Isolation and loneliness are common when you are a caregiver. That hug may be just what you need!

Men need hugs as much as women. We all hurt and need comfort at times.

Caregivers get caregivers. We all face similar problems. Some see this as expressing their love. Some see this as a burden. Some feel stuck with the job that no one else wants to do. We all have our reasons for being a caregiver. We all understand the heaviness of our job. That commonality allows us to share our stories and encourage each other.

As supportive as my husband was, he didn’t truly get the load I had been carrying until he was providing care for his own parents. I had to show grace and not hold it against family who had not walked in my shoes yet.

Friends of caregivers don’t wait until others ask for a safe place to talk and really be heard. Watch for signs of weariness or anger and offer to listen or give them a break. Helping provide care will open your eyes to how much is involved day by day in your caregiving friend’s life.

Caregivers don’t attempt to bottle up your emotions. Find a trusted friend, family member or support group where you are heard and understood. Take that mask off and shed a tear or laugh. God is the place we lay our burdens down. Friends can help us do this. Go find a place to shout if you need to. I have been known to do this in my car traveling home after caregiving.

Word for Today

Matthew 11: 28-30

“Come to me, all you who are weary and burdened, and I will give you rest. 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. For my yoke is easy and my burden is light.”

Song for Today ( My husband sent me this link when I had just left my mom’s side. I had to pull over and cry. Little did I know my mom would be in heaven less than 2 weeks later. 2 days from now will be 10 years since I said goodbye. Miss her all the time.)

Prayer for Today

Dear God,

Forgive me for the times I try to do this job of caregiving all by myself. I thank you for sending Jesus to assist me when I am weary and burdened. I thank you for people in my life that came by my side to encourage me.

Open my eyes to other caregivers that need someone to hug them and pray for them.

Amen

Merry Christmas!

Two posts for one today. I just wanted to add this post before the end of the year. This is a time I have set aside to celebrate the birth of Christ and the upcoming anniversary with my husband. My mind is racing with what the future holds.

We were so young when we began this journey of life together. Reflecting over the years we realize there have been too many times we put things off until later. At our age, later is here. Leading a caregiver support group means hearing a lot of stories that ring true for us. Too many of my caregivers talk about the plans for their retirement years that unraveled due to Alzheimer’s invading their life.

We are choosing to do a few of the things we enjoy that we can afford to do.

slow down and enjoy sunsets
sit by the firepit and watch meteor showers
fish on a pretty day
garden
tend our sheep
visit with our friends
take a drive in the country
volunteer
eat when hungry….sleep when tired

You get the idea. We have a lower income now so we are learning to be content with what we have. All of us look ahead and face a question. How long do we have? Make the most of your time.

Caregivers have an uncertain future with their spouse. My dad learned to put my mom’s makeup on. Another man I know bought his wife who was in the late stage of Alzheimer’s a doll. Every night he tucked the “baby” in after she kissed him goodnight. Your love for each other will not die. You just learn to express it in a different way.

Sometimes the unexpected changes hold hidden blessings. Look for your blessings.

Word for Today

Proverbs 3:5-6

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

Song For Today

Prayer for Today

Dear God,

We are so blessed by you. We praise you for the many blessings you have given us.

Amen

Excited to See Love in Action

Recently, I spoke to my own church about how they could become more dementia friendly. This included information on how to come along side families and meet their needs as well as learning how to communicate and relate with the person who has dementia.

This type of training allows people to visit someone with dementia in their home without being afraid of the unknownand feeling uncomrtable. Isolation is not good for the person with dementia or the caregiver. They need to have people in their lives to comfort and encourage them. They need friends who can step in and offer respite care. Offering to stay with the one with dementia requires taking time to understand where they are in their journey and adjust to meet them where they are. True love is stepping up to the plate even if it makes you uncomfortable.

Do not ask a caregiver ,”What can I do for you?”. Use your observation skills. Does the lawn need mowing? Do light bulbs need changing? Think of practical things that they may need assistance with. Bring a meal over. Offer to change their car oil. Plant flowers in the flowerbeds.

We can all find a way to help.

The second part was about how we can meet their needs when they attend a church service. It takes a huge effort for the caregiver to actually get someone with dementia ready to go anywhere. Often there are clothing changes due to accidents. You only cause behavior issues if you rush to get ready. Confusion and crowds play into the equation as well. Both people will arrive tired.

Can someone who has served as an usher still serve with mild cognitive decline? Can this person still sing in the choir? Can this person still teach a Sunday School class? The answer to each of these questions is yes! They may need an assistant, but they can still find a purpose as long as possible.

Yesterday I watched an elderly gentleman follow a group onto the stage for a music special. He was seated and given a paper to follow along and he sang. I was moved to tears because I am pretty sure he had mild dementia.

If someone is on a walker, offer to visit with them at the door while the caregiver brings the car to the door. When friends come over to speak to the caregiver after service engage the person with dementia while their spouse shares a few moments with friends. If you notice a caregiver step out to go to the restroom, move over and sit with their loved one so they do not get afraid.

We can be the love that enters someone’s loneliness.

Word for Today

Luke 10:27

He answered, “‘Love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind’; and, ‘Love your neighbor as yourself.’”

Song for Today

Prayer for Today

Heavenly Father,

Show me how to love as you love. Open my eyes to the needs around me and give me the compasssion to meet those needs.

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

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

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