Looking into a Caregivers Eyes

Each month I sit with caregivers and try to listen with my ears and feel with my heart. This is always done as I look into their eyes. Sometimes their eyes tell me much more than their words do. Pain, exhaustion and grief are difficult to put into words. At the same time, they are hard to hide when someone takes the time to look into your eyes.

I understand the hesitation to express your concerns, fears and heartache. Making yourself vulnerable is not always easy, especially when are usually the strong. It opens the door for judgement. People may make you feel like a failure. You are not a failure. You should not fear judgement. Anyone who has never walked in your shoes cannot comprehend your situation. Anyone who has walked in your shoes can totally comprehend your situation.

I asked a caregiver “How has your week been?”. He hesitated, gained composure over his emotions and said “alright”. I saw the hesitation and heard the soft reply and recognized myself from earlier that morning. I had prayed for peace and courage to show up that day. My mom’s birthday would have been this week. It has been ten years since I said goodbye to her. I have been missing her and my emotions have surfaced as tears for several days. Sometimes you just feel the loss.

How do you overcome the struggles and losses?

Find a support group near you or online. As I watch the group I lead, I can see people begin to relax and drop their guard when they realize they are not alone. Someone else is experiencing the same thing. Someone will listen and not judge. Just this week a man was upset with himself for getting frustrated with his wife. His love for her was very evident. Most of the group acknowledged that they too had said the wrong thing or did something that only made matters worse.

Find me a perfect caregiver and you will have found a person that I do not believe exists. I see ordinary people attempting to do extraordinary things that they never thought they would be doing. A husband who had a wife that cooked the meals, cleaned the house, remembered and acknowledged birthdays and made it look easy may not be prepared to take on those tasks.

Find me a woman who never knew how to change a tire, repair a leaky faucet, or navigate finances with ease because those were her husband’s job and I assure you that these things are tough.

This use of humor explains the many little things that a spouse does that are not so little when they can no longer do them.

I am five foot tall and my husband is six foot tall. He hands me things off the top shelf and laughs as he reaches around me at the washing machine. I have a top loading machine that is deep. I reach all I can and then reach for my reacher grabber tool to get the last of the load. He walks in takes my grabber and hands the clothes to me to put into the dryer.

Our truck has side rails to help me get in. When we rented a truck recently, it had no side rails. We bought a small stool. He would get out, go around and place my stool for me to get out. It beat tying a rope to it for me to lower and pull back in. Don’t laugh. A group of women coming out from a home decor store had a good time whispering as they watched me perform that very act one day.

My tall handsome and very competent husband is also my best friend. Should I ever lose any part of him, I will be suffering and floundering. I hope I will have the courage and compassion I see in other caregivers should I ever be a caregiver for my spouse. I have taken care of my parents, but I had a spouse to lean on.

You are overwhelmed with demands for your time while struggling to learn new skills. As the disease changes, you have to learn how to stay one step ahead. You carry this load while isolated from other humans sometimes. A package delivery allows you to hear a voice saying hello as you open the door.

Find someone you can lean on. A caregiver support group offers friendship, information and connection with people who understand. In person is preferrable but inline through zoom is another option.

Faith in God and fellowship with other caregivers is where I poured my heart out and felt safe. If you just need to vent, please leave a comment. I can take it. I do not pubish comments for others to see. I do pray for you. I cannot see into your eyes but I do care.

Word for Today

2 Corinthians 9:8

And God is able to bless you abundantly, so that in all things at all times, having all that you need, you will abound in every good work.

Song for Today

Prayer for Today

Dear God,

I praise you that I always have Jesus. When I need someone to lean on I know I an turn to you. On the days that are the hardest, I would love to have a person to simply be there with a hug, a smile or a prayer. I ask that you guide my steps to interact with someone who can be that for me.

Amen

Making A Connection

Connections are the threads that weave our lives together, enriching our experiences and deepening our understanding of one another.

WARNING! This is a lengthy blog. During the time between when my parents passed away and when I began taking care of my in-laws, I volunteered three days a week at a nearby specialized care assisted living facility. The connections I made with the residents were amazing. My aching heart was healed as I loved on them. Through games, story times, one on one visits and meeting their families, I learned about their lives.

If you are reading this and interact with individuals with dementia in any job, volunteering or simply being an aquaintance, please take the time to listen, observe and interview family members. The knowledge you gain helps you focus on seeing them with your heart and treating them as an important individual you interact with and not someone to tolerate.

When an activites director was hired where I volunteered, I decided to give her a headstart on knowing these residents. I wrote a story about the residents for her. I read it to the residents on her first day. They all listened intently and got excited when they heard their names. Some of even asking when would their name be heard as I read.

At the conclusion, the new director told me I was a good writer. I thanked her and handed the story to her and explained that these were her residents and this was for her. She looked puzzled. I told her that this story mentioned their actual occupations and interests. Then I asked her to use this information to make connections as I had.

Here is the “Letter” that tells the story. I hope it motivates you to see the person as a whole when you are a caregiver.

Letter to friend about Green Oaks

Dear Serina,

So much has happened since we left Atlanta that I just had to write to you. We have met so many wonderful people that I know you will love hearing all about them and our life here. Our farm is only minutes away from the small village called Green Oaks.

This spring was so lovely that we often strolled through tree lined streets and lovely lanes. Residents sat on their front porches and seemed to know all their neighbors. Each porch looked inviting and we longed to meet each person we passed. That longing quickly turned into reality. Now we walk by and call out greetings. Many evenings we get invited in for a glass of tea or fresh baked cookies.

The main street has a beauty shop where Dot and Oma stay busy keeping all of us ladies looking our best. Beth is their receptionist. She has a great sense of humor and everyone has fun while there. We girls often tease about running away to the beach.

The pet store is run by Bud. He is a nice man but he really loves his snakes and you know how much I dislike snakes, so I just go look at the fish and birds. The perfect place to shop for wood toys is Howard’s. When you visit me this year we can shop together for gifts. He does occasionally hang his gone fishing sign in the window so we will have to time it right.

There is a lovely puzzle shop with an amazing collection of puzzles. A man named Lawrence is very helpful. He usually has a puzzle on a table he is working on. We met our insurance agent, Donald, there. He is a puzzle enthusiast and full of tall tales. Next door to the puzzle shop is a craft store run by Johnnie and her twins. We are talking to her about spinning yarn from our sheep’s wool. Wouldn’t my granddaughters love a sweater made from it?

Speaking of the girls, they came to visit at Thanksgiving. We had a wonderful time. When we went into the village they all were convinced that Santa was wearing overalls and hanging Christmas lights and garland all over town. They were so excited we just didn’t have the heart to tell them it was Larry from the town council who is in charge of the decorations every year. He is very hands on and insists on doing it himself. I have to admit he could pass for Santa.

The girls are coming again in May. We have a special day trip planned with our neighbor Martha who used to live in Decatur,. We are going there with her and taking the girls to the hot air balloon festival. Doesn’t that sound like fun?

I have been volunteering at the elementary and high schools. I made good friends at both. Dottie teaches English at the high school and Sandra teaches at the elementary school. They do an amazing job engaging with their students. Dottie shared a wonderful lobster recipe with me that we will make when you come.

There is a ladies Bible study I enjoy. Julia and Carol are sweet ladies I have met there. We get to go out for coffee sometimes afterward. It feels good being able to share this time with them. They can never replace you but they help fill the void I have from missing you.

We have befriended an older couple at church named Ron and Wanda. They are a little quiet and keep to themselves. I have invited them and Betty to lunch next Sunday. I will be serving chicken delight using your recipe. I will let you know if they like it.

You have to come visit this fall. We will have our new barn built and plan to throw a party. Bring your singing voice and dancing shoes. Roberta is bringing her group to sing. On Tuesday afternoon you can hear them practicing if the windows are open at Roberta’s house. They are very talented. Betty Jo plans to teach us all how to square dance. She is from our bowling team. Brenda will be singing some Reba McEntire songs.

During the same week, the community theater will be doing a musical. Our friends BA and several of the others I have mentioned are in the cast. BA plays the trumpet and leads our community band. Doesn’t it all sound like fun?

Before I forget, when you come please obey the speed limits. Billy, our police chief, takes his job seriously. I am not suggesting you normally speed, but this is definitely not the traffic you are used to. You can’t change lines and hide like you can in Atlanta.

I am sitting in the park while writing this letter. The beautiful bench I am sitting on was made by Marie and her husband. They also make lovely furniture. She has a degree in home economics so you too would get along well.

Across the way is another friend Shirley. She is showing her grandchildren her initials carved in one of the trees. When she was younger she was in love with someone with the initial J.T. One of her friends, yet another Marie, also has her name carved in the tree with a heart. This must have been where all the couples dated at the park. I know Marie loves plants so I see her at the park often.

Our nearest neighbor is Jack. He has a putting green in his yard and loves being outdoors. At night he enjoys playing cards. We need to invite him over to play soon. Faye lives across the street. She comes over for game night once a month. She wins most of the word games.

Margaret loves to come over and watch Alabama football. She is a more avid fan than us. It makes game days even more fun. She owns the local florist.

A new lady moved down the road from us last week. Her name is Carolyn. She moved to be near her granddaughter who goes to the local college. They seem to be close because I have seen her visiting often.

The town’s mayor of Green Oaks is Anita She and her assistant, Teresa, keep everything running smoothly. It has turned out to be the perfect place for us to live. Our community center keeps a full schedule. We have bingo, volleyball, sing- a- longs and food.

There is so much to share but I have to go soon. Paul is meeting me here. He flips houses and has asked me to stage them. This place is keeping me busy.You really must come this fall! I miss you and am excited to introduce you to our new friends. Their stories about their lives, jobs, children and travel are enjoyable. They have traveled from

the Swiss Alps to the North pole. Our lives are so much richer because of them. You will love them as much as we do.

With love,

Donna

The information I used for this story was collected over three months. When you are determined to make a connection, God will allow it to happen.

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

As this blesses you, remember those with dementia who need to know they are not alone.

Prayer for Today

Dear God,

I praise you that I am not alone. Help me to look at people who need me and show compassion and remind them that they are not alone.

Amen

Caregiver Overload

Athletes train for years to be able to lift heavy weights. They watch their diet and are disciplined. Their physical strength is amazing. They have a goal in sight and strive to accomplish it.

Caregivers often are blindsided with a heavy load to bear. There have been no times of intense training to prepare them for their task at hand. Their only dream is to provide the best care they can. They feel as if they were run over by a fast moving train with little or no warning.

A lack of knowledge about dementia may lead them to overestimate the patient’s abilities.

The reality is that when the hard truths reveal themselves you realize just how much is expected of you. There is a book entitled The 36 Hour Day. Caregivers pack 36 hours worth of tasks into a normal 24 hour day. Caregiving overload can occur. This results with the caregiver being in a state of physical, mental, emotional, and spiritual exhaustion. The demands of caregiving exceed the caregiver’s capacity to cope effectvely.

Some common signs are as follows:

Physical – chronic fatique, disturbed sleep, headaches, weight changes, and lowered immunities

Mental and Emotional – Depression, Anxiety, Loneliness, Guilt, Irritability, Anger, Sadness

When you are so focused on taking care of someone else, you neglect your own needs. Sacrifices will be made, but you need to take care of your own needs such as medical appointments.

I had been taking care of my parents and handled their doctor visits and filling out their forms for many years. I went to a physician for myself soon after my last parent had passed away. The receptionist handed me a new patient form. Out of habit I started checking boxes of everything that was wrong with my parents on their visits. About half way through the list, I laughed at myself and went to get a new form. What would their reaction have been if I had diabetes, Alzheimer’s disease, high blood pressure, urinary incontinence, a heart murmur, swallow issues, a replaced knee and mobility issues?

Yes, caregiving had been a little stressful. There were many times I felt the fatique and frustration. I sometimes wished I was a well trained athelete. That would have made running easier when I felt like a hamster on a wheel.

Today I talked with a caregiver who is older than me. Her spouse has Parkinson’s disease with dementia. She has a heart condition herself. A couple of years ago, she collapsed in the floor from pure exhaustion. Her husband started shaking and crying. Her daughter walked in and rushed her to the hospital. Someone had to be called to stay with her husband while she was at the emergency room. No one wants to end up in that situation.

Sometimes we can lighten the overload by asking for help. Finances can become strained and you simply cannot pay someone to help. I encourge you to look into the GUIDE program with medicare. This funding enables you to hire in home assistance. Check with government agencies in your area. Contact the veterans agency if this applies for you.

In the past many families shared the load of caregiving. Extended families live far apart today. The whole family can adjust to provide the primary caregiver a short time of respite. Communicating your need without trying to place a guilt trip can be tricky. Provide them will some ideas of how they can help. Even teenage grandchildren can become involved. They can pay for services to help you and your loved one survive.

Here are a few suggestions.

Order and pay for a meal delivery

Pay for an in home caregiver 1 day a month

Come and be the caregiver for a weekend

Hire someone to clean every other week

Take the car to get an oil change

Hire someone for lawn care

Depending on your own social connections, you may have friends, church family or neighbors who would be willing to help you. Do not let pride or embarassment deter you from seeking help. Even the strongest people can begin to limp along when carrying a huge load.

When the symptoms of overload begin, reach out for help.

Don’t wait until you are sinking!

Word for Today

Psalm 68:19

Praise be to the Lord, to God our Savior, who daily bears our burdens.

Song for Today

Prayer for Today

Dear God,

Some days I struggle under this load of caregiving. I am tired and weary. I need a good night’s sleep. I make myself keep going because I am the only person my loved one has daily to meet their needs. I need you to bear my burdens today. Give me peace, comfort and meet each of our needs.

Amen

Denial about Alzheimer’s Diagnosis

My dad worked in the cast house of a plant that produced huge aluminum ingots. The heat was intense. He wore fire resistant clothing to protect himself. He was knowledgeable about the danger. A blast from the furnace held intense heat. It would have been foolish to let a new employee face this danger without educating him first. Late one night there was an explosion. My dad had already clocked out and was on his way home.

When you hear Alzheimer’s disease or other related words come from a physician’s mouth, you mind reels from the impact. You feel numbed by the words. Then your mind screams “no”. It is much like the explosion at my dad’s plant.

Denial serves as a buffer while you try to process the truth. Processing this truth is emotionally draining. Your whole world has just been turned upside down.

For a while you will feel as if you are living in a snow globe that some hyperactive child is shaking. Finding a way to adapt to an ever changing environment is not easy. When you are ready to accept the diagnosis, keep in mind that the person with the disease is trying to accept it as well. Allowing yourself time to grieve the current and future losses is necessary. You will be able to move forward. The timing of moving forward varies from person to person.

The caregiver will likely accept the diagnosis first. It is very important to talk with the patient about the disease. Be sure to reassure them that you are in this together.

Sadness will surround you. Try to focus on what you can still do. When you are ready to share the information you may find some relationships become stronger and friends and family are willing to help you. There may be some who are frightened and unwilling to accept the news. They may distance themselves from you.

I was not shocked when my mom’s diagnosis came. I was familiar with Alzheimer’s and had already seen the cognitive decline. My dad struggled with it. He had been covering for mom without even realizing it. He hid his emotions and would not tell friends. That was not best for them. They had a huge circle of friends in their church that would have stepped up to help. Instead, they did not understand why my mom would not say hello or acknowledge them. Everyone assumed that she was upset with them. I went to church with them when I was visiting. Their friends noticed that I was in town much more often. They approached me and asked me to forgive them. Someone had gone over to sit with mom and realized instantly that she was not herself. They were shocked and guilt ridden for not seeing it sooner.

I have since had an opportunity to speak to a senior group at their church. I talked about normal aging and when to be concerned. This gave me a chance to share how important it is to have support as a caregiver. I concluded by telling them I would stay for a few minutes to answer questions. A line quickly formed. I noticed a couple who kept getting out of line and then joining the back of the line. When it was just me and a janitor they slowly approached. A humble and soft voice said, “my wife has Alzheimer’s and she knows it”. I hugged both of them and asked who else knew. They replied, “no one” and then asked who they should tell. I encouraged them to tell their children and a few close friends to start building a small support team. They could tell others when they felt they were ready to.

You are not alone. Currently, over 7 million Americans aged 65 and older are living with Alzheimer’s disease. This number is expected to rise to nearly 13 million by 2050. When you are ready to learn more and prepare for this time of caregiving, I suggest reading this book, The 36 Hour Day. Seaarch for a local support group. There is an abundance of online courses, podcasts and blogs.

If this is new for you, take a breath and pray. You can do this.

Blessings

Word for Today

Joshua 1:9

Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

Song for Today

Prayer for Today

Dear God,

This disease may have caught me by surprise, but it didn’t catch you that way. Give me courage as I accept how my future is changed as I enter into a life of caregiving. Help me to trust you rather than give in to fear. Give me wisdom and be my counselor as I learn to adjust.

Amen

Breaking Old Communication Habits

Face to face is a marvelous form of communication. I can see reactions and hear voice inflections. Text messages are alright; however there is much room for misunderstanding. There is much to be said in hearing someone’s voice. My husband and I can connect with a meeting of our eyes across a crowded room and know what you other is thinking. We have built this ability to communicate well moment by moment, day by day and year by year.

Most of us have habits. These play into how we communicate and relate to others. Perhaps the couple above established the habit of kiss and makeup early in their relationship. They understood that they could be opinionated and have fiery conversations. It did not mean they didn’t love each other. They both also have personalities that forgive and forget.

My husband speaks fluent sarcasm. It is a way of teasing me. I get it and just roll my eyes instead of taking him literally. This works for now.

Both of these examples can become very difficult to navigate if one member of each couple should develop Alzheimer’s disease. It forces us to break our old communication habits. The husband in example one needs to realize that his wife will now see him as angry all the time. I might take the sarcasm as literal statements.

Take the word great as an example.

I say “honey I can’t find the keys”. He replies “Great”. I sigh with relief that he is happy about it. At least in this conversation, I am happy because he is happy. He is really upset but my dementia is protecting me. My hubby says. “Oh, no, don’t worry—I’ll do the dishes for the third time today.” Currently I would know he was taking a jab at my not doing the dishes. With dementia, I would think what a nice man. Again, I am happy because he is happy.

Our words are not as loud as our faces. If my mouth doesn’t say it, my face definitely will! Persons with dementia read faces very well. You may have to learn how to control your own facial expressions. While you think that one over, I have another revelation. The person with dementia will lose their ability to recall words. You will have to read their expressions instead of listening to their words. While on the topic of listening, selective hearing is no longer allowed. This will result in angry. Learn to be patient! Get reaady to hear the same questions over and over and over again.

Asking someone to complete a task is futile unless you speak in simple terms. Give simple one step instrctions. Otherwise you will be met by the look below.

They simply cannot process all of the information. My father-in-law would get angry because all of his important tax papers were not where they were supposed to be. He complained to me that he had handed them to his wife and asked her to file them for him. That had worked in the past, but everything changed when she entered the early stages of cognitive decline. He was in denial about the situation and assumed she would take care of things like she had in the past. His frustration and denial was only making her irritated. We decided to step in and sent them to go shopping so my husband and I could find the hidden papers and file his income tax paperwork for him.

I learned how to break a habit the painful way. I had called my mother by “Mom” since childhood. One morning I walked in, kissed her on the cheek and said “Good morning Mom”. Instantly, she began to cry and call out “Momma, momma”. My heart broke. In her mind, she was now a child, not someone’s mom. Linda had been her name her parents and siblings called her. The next morning I greeted her as Linda. She remained calm. From then on I said the word Linda as my heart cried out mom.

Slow your conversation down. Allow them time to process the words. Give them time to find their words. Once free flowing convesation becomes a trickle of words.

How you communicate with someone with dementia requires trial and error as you make adjustments to be effective as they lose skills. Think about ways to make these adjustments. You now live in Alzheimer’s world. The rules are different here.

Arguing doesn’t work.

Reasoning doesn’t work.

Asking them to make a choice causes confusion.

*PATIENCE is critical in communicating.

Word for Today

Proverbs 15:18

A hot-tempered person stirs up conflict, but the one who is patient calms a quarrel.

Song for Today

This song helps focus on how temporary our struggles are.

Pray for Today

Dear God,

How great your truly are! I know I can turn to you on the good days and on the ones that are a struggle. Give me grace as I try to show grace to those I care for. Help me to slow down and rest in you.

Amen

At Journey’s End…New Beginnings Happen

The word journey is scattered abundantly in this blog. There is a reason. One can define journey as a process or course likened to traveling, such as a series of trying experiences; a passage. When you become a caregiver of someone with dementia such as Alzheimer’s disease, you take their hand and enter a passage until their journey is completed and you are left alone after saying goodby.

This happened for a lifelong friend this week. Most of the caregiving for her mom feel on her shoulders. She called me a week ago and mentioned that the words “she is not actively dying yet” had been spoken by hospice workers and she wanted to know what that meant. I told her and explained the changes to watch for. We could share openly because she and my own mom had been long time friends.

I went on Monday to say goodbye to her mom amd to hug her. On Thursday her mom completed her journey. I attending the funeral and watched my friend and her siblings as they were processing their emotions. All of them will miss her immensely just as I miss my mom. They will find themselves adjusting to a new schedule, one not centered on caregiving.

The longer you walk the journey with someone effects how long it takes to adjusting to your new life. You may now be a widow, orphan or only child. The role you have played in other poeple’s lives changes to a new role. You may have laid aside jobs, hobbies, social events, visits with friends and so much more during the caregiving years. Your life slowly shut down around you. Stepping back into a new life takes time. Overwhelming emotions surface.

Don’t rush into change quickly. Relax. Grief. Just breathe.

Take time to rest. Evaluate your talents, giftings, strengths and discover what makes you feel fulfilled.

I have decided to let you in on what I have been up to in my post caregiver life. We have lambing season going on. These little ones arrived on the last cold blast we had. Their little jackets are sleeves from an old fleece hoodie. Now that is warmer our newest two additions don’t need them anymore. We finally caught them to take the jackets off. We now have 8 baby lambs and are waiting on the last to be born.

The idea of raising sheep was no where on my radar for post caregiving life. We have pastored a church, so shepherding this flock should not be too difficult. We drive out to the pasture early each morning to see if there are any new babies. We go out again in the late afternoon to watch lamb races. They skip and run as we laugh. Then we usually stay to watch the sunset.

Gardens are being planted. Blueberry plants have buds. Chickens are laying plenty of eggs. We are blessed. Country living is not a bad life at all.

I pray that each of you find a place of peace and contentment when your journey concludes as a caregiver.

God still has wonderful plans for you.

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

God,

Thank you for being patient with me as I process emotions and wait on you to heal my heart. Give me hope that you do have plans for my future. Help me to find pleasure in the little things. Help me trust your plan.

Amen

Storm Preperations Have Begun

When you live in the south the word snow brings excitement. The word ice brings panic. We are hearing both words and live on the dividing line. Ice means downed power lines and trees are abundant on the farm and the roads leading to our farm. We are heeding the warnings and preparing for the developing storm.

Laundry is being processed, soups are being cooked and bread is being baked in case of a power outage. Thankfully, we have gas logs and solar backup batteries ready. Outside we are building a sheep shelter, moving the grill to a sheltered area, placing hay near the sheep and making sure the dogs have a safe shelter. These ice storms are rare but dangerous.

When you find out a loved one has Alzheimer’s disease, this is a storm warning. You should begin preparing yourself and your home before the storm hits. This may sound absurd considering absurd mean wildly unreasonable, and illogical. Your heart will not allow you to face the harsh reality that life as you have known it is about to be shaken and rocked in ways you can not imagine.

It would be unkind and uncaring for me to not make you aware of what the future may hold. Just as I am preparing for the snow and ice storm heading my direction, I planned for changes as my mom began living with Alzheimer’s disease. My dad was her primary caregiver, but should he have passed away first, I was next in line. This meant researching in home caregivers, assisted living facilities and physicians should I have to relocate mom to me. I lived with plans a, b and c in place. A suitcase was always packed and ready to go if dad called for help.

I traveled back and forth from my home to theirs for several years. These trips allowed me to be there for physician appointments and to evaluate how the disease was progressing. They also gave my dad a break. Each trip waas heartbreaking on the drive home. I would be making mental notes on what I had experienced.

Eventually, we had to hire in home help. Next we made a move to a memory care assisted living. Dad began to lose cognitive judgment and executive order skills. We moved mom to a skilled care facilty. In the last few months of mom’s life I moved both parents to facilities near me. Dad could walk from his assisted living to mom’s skilled care through a covered and enclosed walkway. I could be there as often as possible, which was usually about 5 times a week.

All of the decisions about moves and care plans had been in place before we needed them. We were on waiting lists knowing we could say no if we weren’t ready yet.

To be able to make these decisions, you have to research, observe changes, ask questions. Seek out an elder care lawyer for wills, power of attorney, trust, etc. Have hippa forms signed, make decisions on DNR orders, decide how to handle feeding tube decisions. Then gather family and friends to be backup support when needed. Trust me on this one. You will need support!

We started this blog discussing our stormy weather ahead. My husband and our neighbor are working together to prep for this storm. Life has taught us to accept and offer help. Caregiving has taught us that the load is lighter when we share it.

The word Alzheimer’s is one you will hear someday in your family or friend group.

Over 7 million Americans are currently living with Alzheimer’s disease, and this number is

projected to rise to nearly 13 million by 2050.

Now is the time to prepare for hearing those words. Instead of living in fear, live prepared. Find a seminar or support group and educate yourself.

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,

Life is full of storms that we must face. I trust in you to guide my steps as I prepare to face the storms. Give me your peace as th storm rages. Give me hope that you are in the storm with me.

Amen

Most Critical Mistakes I Made as a Caregiver

Caregiving is usually full of lessons to learn the hard way. Each and every caregiver I know can share their own stories of what they learned. I will share a few today from my own experience.

Communication is vital even when others do not understand or agree. I should have talked to my mom about her concerns and fears early on. My heart and emotions were reeling and I was afraid to. She had always been responsible and hid her own emotions well. This made it hard to know how she was processing information. Knowing how important it is to show empathy, I should have taken her hand and acknowleged that I was scared and sad too. Even if she did not vocalize her feelings, I could have let her know I was with her and understood.

I would have tried harder to help my dad understand how his own behavior would have to change. When you care for someone with Alzheimer’s disease what works one day may not work the next. We cannot argue and try to reason with them. Their reality and ours may be very different, but we have to move into theirs to be effective.

I would understand the behavior changes due to pain and fight placing her in a geri-psych unit without treating the pain first. We had a terrible experience when we placed mom in a memory care unit. They called about four days later and told me she was out of control and I had to take her to the hospital. She was angry anad aggressive which was totally not the person I knew.

It was late in the evening and the nurse was waiting on us. They took her straight into the emergency exam room. I called for someone to come and take dad home. When I came back into the room, they were testing for a uti infection. It was positive. The nurse lifted my mom’s top and saw red. I watched in horror as they removed her bra and she cried in pain. A nasty yeast infection was under her breast. The nurse saw my shock and asked where mom had been living. I told her and saw her spring into action to calm mom and immediately bring a physician in. I would not want to have been the person from the facility that answered the call when I heard his reprimanding.

I allowed mom to be admitted into the geri-psych unit because that is what they suggested. Today, I would have asked for a regular room for a couple of days to treat the uti and yeast infection. I would have stayed with her 24/7 and evaluated the anger and aggression. Then agreed to the other if behavior was still an issue. This was a hard lesson learned!

These units are necessary. The medications used do not always work. They try one and then another. This process sped the loss of skills and my mom never regained them. She had walked in and was talking well. We came out in a wheelchair and speaking fewer words. I knew she was overmedicated and began talking to her physician. He and I together decided to move mom to a skilled care facility where their medical director could ease her off of some of the meds.

These lessons are shared not to scare you, but to help you understand it is not easy to always know what to do. My mom would have lost those skills anyway as the disease progressed.

Caregiver stress is real. My dad was showing signs of poor judgment and decision making as mom’s disease progressed. I should have monitored finances earlier than I did. Someone not in the family had been talking dad out of quite a bit of money. He had always been a generous and kind man, so she took advantage of that. It was elder abuse. My brother and I confronted dad with the bank records and ended the situation thankfully.

We actually dealt with one parent with Alzheimer’s disease, one with mini strokes, one with cancer and another with what we thought was vascular dementia. When my mother-in-law was diagnosed with vascular dementia, I accepted that. As time passed it, I questioned the diagnosis and her physician had moved. Strange and stranger behaviors were happening. There were days that she came across as her normal self and others full of delusions and hallucinations. After her death, I found that one of the most unusual behaviors had a name, Capgas syndrone.

It is a rare psychological condition where an individual believes that a loved one has been replaced by an identical imposter. She would tell us her husband had been there. If someone reminded her that he was deceased, she would say “you know what I mean, it was the other him”. One day during a visit, she insisted that we were not the real us. We looked, sounded and acted like the real us but we were not the real us.

All the the above led me to believe that she actucally had Lewy Bodies which is often misdiagnosed. I would have tried harder to find her true diagnosis. It would not have changed how we cared for her, but it would have helped other family members understand what she was facing and helped them accept what we were dealing with.

My mistakes allowed me to learn to observe more, be patient, be diligent and remain humble. Trusting God to strength me and give me wisdom and grace got me through.

Word for Today

Philippians 2:14-16 (New International Version

Do everything without grumbling or arguing, so that you may become blameless and pure, “children of God without fault in a warped and crooked generation.” Then you will shine among them like stars in the sky as you hold firmly to the word of life. And then I will be able to boast on the day of Christ that I did not run or labor in vain.

Song for Today

Prayer for Today

Dear Heavenly Father,

Thank you for your amazing love and grace. You are where I run when I feel regret over my mistakes. You hold me in your arms and comfort me when I walk in pain. You pick me up and steady me to keep going.

Amen

It has been 10 years

Today I dedicate this post to my beautiful mom.

Dear Momma,

If you could see my heart, you would see little stitches sewn by God as he heals the gaping hole you left when you passed ten years ago. Every ounce of me wanted to take the horrible disease called Alzheimer’s from you. I coudn’t, so I decided to learn everything I could about how to help you and make you feel loved and cared for.

Little things remind me of you all the time. When I received red roses for my anniversary this month, I remembered how much you enjoyed them when Dad bought them for you. When I savor grapes, I remember how much you loved them. Wearing pieces of your jewelry makes me feel joy. An unfinished jigsaw puzzle sits on my dining room table. Actually, it is your dining room table we used to sit at together.

Don’t feel bad about me taking care of you. Those years are treasures for me. I saw little glimpses of all that you are. The inhibitions disappeared and I saw a fun woman giggling and humming. It was a side of you that you had hidden away to be a responsible and mature adult.

I watched a woman who was secretly called the sugar police by her sisters devour cookies, ice cream and desserts. It felt freeing to see you were more normal than we had thought.

I learned to love my family deeply from you. I learned to make sacrifices for others from you. I learned to clean from you, but it didn’t make me a total neat freak like you were.

You took phone calls at home from confused older customers at the bank. You gave children a ride to church. You rocked babies in the church nursery. You shared food from your garden. You would go to the nursing home to feed my grandfather when he wouldn’t eat for anyone else. You drove through the night to be there for my toddler while I was in the hospital with her baby brother. You even picked cotton by hand to buy fabric for my new clothes when I started to school. The wonderful memories of you are flooding over me now.

Your family has grown a bit since you were here. With my brother having six children, we have had a few weddings and a few more babies. Liz wore your ring at her wedding. She asked for a photo of you and dad to display. I chose a photo without noticing that you had that very ring on. We both teared up when we realized it. You have two amazing great-grandsons now. What a reunion we will have one day!

It was an incredible honor to walk on one side and have dad on the other as we walked you toward your final home. You and dad made me a better person. I love you so deeply and am looking forward to joining you in heaven when my life here is over. Give dad a hug and ask him to give you one for me.

Love,

Your daughter

My letter was how I chose to journal today. Journaling is one of the many ways I learned to cope. Realizing that being in the moment with my mom where she was in her mind at the time made taking care of her much easier. The years spent taking care of her long distance and in her home were difficult. Many lessons were learned about God’s incredible grace and strength. Moving mom to skilled care was heartwrenching, but dad visited daily and I did once she moved closer to me during her final days.

I cannot count the tears that rolling down my cheeks as a caregiver. I shed tears writing this post. Comfort was always found in knowing that God saw those tears. When Jesus came to his friend Lazarus’s tomb, he wept. If Jesus wept, then it is perfectly fine for us to weep as well.

You will find your own ways to cope. You will grow and stretch. In the end, you will be stronger than you ever thought possible. Keep giving it your best my friends!

Word for Today

honor your father and mother, and love your neighbor as yourself.

Matthew 19:19

Song for Today

Prayer for Today

Dear God,

I praise you for the time I had on earth with my wonderful mom. Thank you for walking with me each step of the way. You held me when I was broken. You comforted me when I was scared. You gave me strength to do things I never knew I was capable of doing.

I ask today that you do the same for anyone reading this. Pour unexpected blessings into their life. Send friends to share the load they carry. Give them peace at night to rest.

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