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

Circadian Rhythm and Alzheimer’s

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

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

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

Restlessness

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

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

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

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

Word for Today

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

Song for Today

Prayer for Today

Dear God,

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

Amen

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

Are You Even Listening?

Did you think I was addressing almost everyone who has earbuds in or maybe teens with messy rooms? Oh, it could be applied so easily to these. My husband listens to podcast while working on our farm. He walks into the house and ignores me because he forgets to turn the podcast off. Nothing is more frustrated than feeling unheard.

When a person has Alzheimer’s disease they can still hear. It takes their mind longer to process the information. When speaking with them you should slow your speech down. Use simple language with words that are easier to understand. In a conversation wait and let them attempt to reply to you.

This will take an effort on your part to restrain yourself from moving at the pace you are used to. Many of us are already thinking of our response when someone else is speaking. Perhaps, having to break that habit will help us become better listeners. The person you are now communicating with deserves your full attention.

Spouses are guilty of answering for their husband or wife when with others. This is their attempt to protect their spouse from embarassment. It becomes second nature. It happens especially when other family members are around. That is why children are shocked when they finally realize their parent has mild cognitive impairment. Often a caregiver passes away first and the children scramble making decisions about the other parent’s care. They got blind sided because the disease had been hidden so well.

Pay attention when you sense the smallest mental decline. Take the parent you are concerned about out for a walk or drive and pay close attention to their communication with you.

It is a wonderful gift that hearing is not the first sense to go with Alzheimer’s because music becomes an amazing tool. Please watch this video clip. It shows you what words have a hard time explaining. Grab a tissue.

Music can be extremely effective with people who have Alzheimer’s. Choose the music you use carefully. Remember to use their preferred songs and artists. Make selections from decades ago. My mom was nonverbal. I taught my granddaughter a song that mom had listened to as a teenager. When my granddaughter got to the chorus my mom said a few syllables while smiling. We had a breakthrough and they connected. I will always cherish that memory.

Many pianist still have muscle memory and can sit down and play. While volunteering in a memory care unit one day, I heard hymns coming from a baby grand piano. I turned to see one of the residents playing with total contentment on her face. The director of the facility informed me that her husband moved their piano there when she moved in.

Loud noises will startle someone with dementia. It is absolutely vital for you to stay in the hospital room when the patient has dementia. Constant voices in the hall, staff going in and out, beeping machinery, and sirens outside create fear and only add to the confusion of being in a strange place. Your touch and voice can be reassuring.

They are always listening. Do not talk about them and their condition in their presence. Show respect and honor them. Never ask them a do you remember question. Instead, you could say I loved our vacations with the children to the beach. We had long strolls as the sunset and collectied seashells. The seagulls surrounded us when the kids threw them snacks. Just hearing the story may spark a memory in them. They may then join in the conversation. Taking a photo to share while you recall the memory would be nice.

Even when they tire and their eyes close, they may be listening. Just the sound of your voice brings comfort. Talk about football, dancing or whatever topic they once enjoyed discussing.

When giving directions keep it simple.

Wrong Way –

We are going for a walk. Put your socks and shoes on then, grab a jacket from the closet.

Right Way –

Here are your shoes and socks. Put your socks on. Now put your shoes on. Let me help you get a jacket because it is cold outside.

When you ask them to make a choice keep it simple.

Wrong Way –

What doe you want to wear today?

Right Way –

Would like to wear the blue shirt or the red shirt?

Keep in mind that mutiple auditory inputs at once definitely become noise pollution. You may be able to hear two conversations at once, but they just hear lots of noise and struggle to keep up. Avoid crowds and parties when this becomes an issue. Each day is a struggle in processing all they hear. They get exhausted. Be patient.

Word for Today

Luke 8:15

But the seed on good soil stands for those with a noble and good heart, who hear the word, retain it, and by persevering produce a crop.

Song for Today

Prayer for Today

Dear God,

I praise you for giving us the gift of music. Help us to use it to brighten the lives of our family member with dementia. Help us to create moments for them that produces joy and they still feel vibrant and alive.

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

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

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