Discussion happens. Who will do it? How will they do it? When should they do it? No one wants to take away the car keys. Everyone wants people to be safe. Sometimes our wants have a conflict of interest. The responsibility of taking the keys is passed around like a hot potato until someone gets the courage to take action.

Who will do it? The brave one or the one caught with the hot potato! Seriously, that is different with each family and their dynamics. It is not easy. You may turn to a local police officer, minister, family friend, or physician for assistance.

How will we do it? That is a great question. Sometimes our solution may not work.

One family simply removed a few car parts. The father had worked on his own cars all of his life. Those long term memories kicked right in and he reassembled it and kept on driving. Another son took the truck keys. His dad had another set. He took those. He then took the battery from his truck while he napped. A couple of days later he visited his dad and the truck was gone. In a bit, his dad pulled in. He told his son, “someone stole my battery and I had to get someone to take me to get another one”. His dad obviously had a third set of keys as well.

My dad had a doctor tell him he could no longer drive. A friend’s mother hit her house, scared herself and handed over the keys on her own.

Whoever does it should appeal to their loved one’s own sense of responsibility. Take action while you can still have a conversation. Respect their feelings. They are scared. They are losing their independence. They may be angry or sad. They could even be relieved. Listen with compassion but remain firm.

When should I do it?

There are legal responsibilities once a person is diagnosed with dementia. A person with Alzheimer’s will lose the ability to drive safely. It will change as the disease progresses. Their response times are slower. Their spacial conception may change. They may get lost. Watch for signs of confusion, a lack of alertness and memory loss. When these become evident and you fear for the safety of them and others, it is time.

I share the stories below to let you know taking action and timing the action is not always easy.

Just last night an elderly man with dementia spent the night on a bed made in the police station by caring officers who were called to a gas station. He had driven from another state and was lost and confused. They bought him food and sheltered him until his family could drive there to take him home.

Concerned friends and neighbors who witnessed my dad pull out in front of traffic and run stop signs called me. There were always new dings in his van that he could not explain. I feared for his safety as well as the people on the roadways with him. Taking his car keys meant having to provide transportation for him. It meant taking some of his independence from him. It meant the man who patiently taught me to drive could no longer drive safely. My heart struggled but I knew it was time to take action.

You also have other help when taking action. Carrie Underwood sang a song about it. As you listen to the song I selected today, remember that God will help you get through these tough decisions.

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,

We come to you today with hearts of compassion and concern for the ones we care for. We always want to show honor and respect. We also want to protect. Help us to do this with wisdom. Give us the words to say and prepare all of our hearts to make wise decisions and to take action when it is necessary. Give us courage, strength and grace. Go before us making our loved one willing accept our actions.

We thank you for being in control when we feel as if things are spinning out of our control.

Amen

This post is my most difficult post to write. I have revised and reflected for several weeks before sharing it. This morning I will make an attempt to say things in a way that speak the truth with love for all who read it.

Caregiving is a journey. It is a journey of walking a loved one with a terminal illness across the bridge to their final home. Other bridges may be crossed along the way. Bridges take us from one place to another. In the world of caregiving one place is a familiar home and the other is the unknown. Crossing that bridge creates much anxiety and fear for the person being moved as well as for the caregiver relinquishing the one they love.

To be successful in the crossing of the bridge from homes to facilities, a hand off occurs from the primary caregiver to the paid caregiver. Caregivers on both ends must make adjustments in their thinking and responses. They must make a sincere effort to understand where each other is coming from. They need to meet in the middle and link arms in the transition.

Persons employed in the field must understand where the caregiver comes from. Some caregivers come from a place of exhaustion, emotional distress, guilt and fear. They have given until they can no longer keep up with the daily responsibilities. They need help desperately but fear they are failing their loved one if they place them in a facility.

Others are not prepared to be a caregiver and don’t know what to do and place their loved one in care out of desperation. Many families must work and cannot provide constant care.

Every family has its own story. These are highly emotional stories. They have been told someone they love is terminally ill. The disease will progress. There is no detailed time table of how long this will take. Questions haunt them. Am I doing the right thing? How can we pay for this? How long will they know me? What will the rest of my family think? Who is going to help me with this load?

Tossing and turning at night as these thoughts run around in their minds they try to make decisions. Emotions and stress have them making decisions when they are not at their best. Logic and emotions mingle creating conflict inside of them as they arrive at one end of the bridge holding the hand of their confused love one.

The person on the receiving end is usually well trained. They are better qualified than the family caregiver simply due to experience and training. Most that I have met on my own journey are compassionate and caring people. I have seen people remaining after their shift sitting with an agitated person to calm them down. One morning at 2:00 am I heard singing and walked down the hall. I found a young man blow drying a woman’s hair as she held a hairbrush like a microphone. They were singing and laughing. Out of curiosity, I stepped over to the nurse and asked for their story. He was an aide on her floor and had noticed she was awake in the wee hours of the morning on his shift. He knew she slept late and they struggled getting her to shower. He suggested allowed him to give her a shower while she was wide awake. It was a beautiful gesture as well as heart warming to see.

These are examples of the people waiting on the opposite end of the bridge. Hopefully, they will walk to the middle and take your loved one’s other hand.

Communication on both sides is key to transferring a loved one to someone for their care.

Families must tell their story. They must give the facility all of the information they need. Describe your loved ones likes and dislikes. Create a well labeled memory book telling about their life. Include information about favorite music, hobbies, food and family. This will give the caregiving team ideas on how to best relate to them as an individual with a real life.

Staff can calmly explain to family up front that every effort is made to meet needs. There will be crisis every day due to so many patients having needs such as falls, medical emergencies or behavior issues. Sometimes a crisis will take precedence over normal routine. Personal one on one care is not possible 24 hours a day.

Families need to be informed when taking their loved one out and returning them creates stress and anxiety. Families need to understand that outings and holiday celebrations should consider the overall well being of the one with dementia and not about them having mom or dad with them for large gatherings.

Even when I knew it was time to cross the bridge, I cried all the way home that day after telling mom goodbye. It was one of the most difficult decisions I had ever made in my life. Yes, I called to check on her. I visited at odd hours to meet all of her caregivers. I needed peace that my mom was being well taken care of. I encourage families to visit and remain connected with their loved one and their care team.

Just writing this feels as if I am walking a tightrope. The tightrope I walk gives me a bird’s eye view that many never get. I know large numbers of caregivers both primary at home ones and paid professional ones. I do not want to step on anyone’s toes. We need each other because Alzheimer’s is a horrible disease and our greatest concern is for the one suffering from it.

Each person who gives care is important. You have been entrusted with a beautiful life or lives who need you. You have my respect and prayers for answering the call of being a caregiver. May God bless you richly for your efforts and kindness.

“There never was any heart truly great and generous, that was not also tender and compassionate.” Robert Frost

Word for Today

Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you. Ephesians 4:32

Song for Today

Prayer for Today

Dear Heavenly Father,

We come to you humbled. We realize we cannot navigate the tough decisions we face without your guidance and comfort. We thank you for this.

Teach us to work together as families and caregivers. Give us forgiveness when we fail each other. Give us compassion and understanding as we walk this out knowing we need each others input. Give us wisdom as we make decisions together.

Help us to have the attitude of Christ and love of Christ to pierce through the darkness of this disease and provide the best care to the one suffering from this disease.

Amen

Today, I will be brief. As a volunteer in the Alzheimer’s community, I often have to wonder if my visit will be the final one with my friends that I have come to love. During the last month it has happened twice. I hug them and promise to see them again soon not knowing that soon will be longer than I expected. It will be when I, too, get to heaven.

God allowed me to see their hearts and pour love into their lives. I am so grateful for that. I have seen laughter and tears. I have given and received hugs. I have prayed for them and with them.

I cry when each one is gone. It was be so easy to walk away and say no more pain. My heart won’t allow me to do this. Knowing there will be pain in saying goodbye, I choose to continue going to visit and look for joy in each day.

I encourage each of you to continue to visit those you know who have Alzheimer’s. Look for ways to bring joy to them while they are still here.

Next week I will be volunteering with the Shoals Walk to End Alzheimer’s. My team is walking in memory of my mom and to honor the many beautiful people I have met that have this disease. This is a terminal disease. You lose skills in the reverse order of how you acquired them.

I walk because there is no cure. The funds raised will be applied to research for a cure.

I walk to help create awareness. For every person with this disease there is at least one caregiver making sacrifices each and every day. These caregivers need support emotionally, physically, spiritually and financially. They give up hobbies, jobs, vacations, social activities and income to name a few. They all too often sit inside of their homes in isolation. The golden years they worked so long to reach have turned into shattered dreams.

It is time for people to open their eyes to this crisis. Consider finding a walk in your area or donate to my team at Shoals Walk to End Alzheimer’s and team Linda’s Memory Keepers.

Today I am sharing the words of two dear friends. One is a young mother of three. She shared these words a few weeks after the birth of her third child.

“The power of a hand…..when I was laying on the table during c-section and there was a lot of pain because Josiah’s head was so large, I was trying to stay calm and not panic. One of the nurses held my hand and you wouldn’t believe what that hand did for me! I didn’t know this nurse, but the strength of her grip sent peace and calm coursing through me. 
Today, Josiah was screaming while getting his diaper changed. Emily climbed up on her stool and held his hand. He immediately calmed down and looked into her eyes. 
The power of personal touch, the power of a hand cannot be underestimated. How much more powerful is the hand of God!!? How could we possibly be afraid when we have a God who holds onto our hand?!”

There will be times that a sensitive friend will reach for your hand and pour love into your life with the reassurance of their support. You may offer your hand to your loved one to reassure them that they are not alone. At all times the hand of God holds onto each of our hands.

Personal touch is often forsaken when people visit. Make an effort to reassure the person with dementia when sitting together. Something as simple as massaging lotion into their hands brings peace and calm. Sometimes just holding their hand as they fall asleep brings comfort to both of you.

The other is a friend I met years ago. She and I have laughed, cried, prayed and held each other’s hand through many circumstances. She sent the song posted today to me.

Word for Today

For I am the LORD your God who takes hold of your right hand and says to you, Do not fear; I will help you. Isaiah 41:13

Song for Today

Prayer for Today

Dear God,

I thank you for sending people with hearts of compassion into my life. They are your hands extended to me when I need a personal touch or listening ear.

Teach me to be the hands of God as I reach out to the ones who need to feel your comfort and love. Teach me to trust that you always hold on to me and I have nothing to fear because I am in your hands.

Amen

Last evening I was reminded of a story about a man who visited his wife every morning at 9:00 am for breakfast at her assisted living. A friend asked him why he still did this since she no longer remembered him. His response was, “I still know her”.

This is a beautiful example of remaining connected with a loved one with Alzheimer’s disease. You can still share meals and enjoy just being together. My father faithfully visited my mother every day that it was possible. When he had a knee replacement surgery and was in a rehab center, his motivation to get out was to be able to visit my mom. I rolled his wheelchair into her room and stepped back to watch them for a few minutes. Even though mom couldn’t respond as she would in the past, it was like watching a young couple in love. Tears slid down my face as I watched them.

Some people may not be able to understand the daily visits. Others may even need a slight reprieve after years of caregiving. Know that whatever you decide is right for you. It is your decision made from concern and after much thought. There is a lot of guilt attached to simply having to move someone from their home. Don’t hold onto that guilt. Work through it and move on to making the most of the time you do spend together.

Look for things you both enjoy whether that be watching a movie. reading to them, listening to favorite music. working puzzles or taking a walk. You can share stories from the past without them having to acknowledge remembering them.

I actually admire the generation that goes before me. They have relationships that have endured great times and tough times. Life was lived without a mask of social media to hide behind. Face to face interactions occurred between family and friends. Tears rolled down our faces when we hurt. Tears rolled down our faces when we laughed heartily. No emojis were needed.

In real life relationships we create a savings account of emotions. As we invest in each other, we create large accounts of love that withdrawals can be made from. This allows us to provide the care that is so critical. Sometimes the relationship has been a rough one and the account of love is running low to begin with. These are the times that we must rely on God’s vast amount of love to flow through us and enable us to still show compassion and kindness.

There will be a time when they know longer remember you but you still know them. They still need you and to be reminded that you love them. Friends and family may not understand. That’s alright. You keep visiting and keep remembering.

Don’t let their silence or lack of interest keep you away. Don’t allow emotional pain to keep you away. Don’t allow pressing matters to override taking time for them. A young chaplain was leaving a nursing home late one evening when he heard someone gently sobbing. He turned back to find a woman gently crying. He took her hand and asked her what was wrong. She struggled to find and express the right word. He waited by her side. Then she stammered, “lonely”. He pulled up a chair and held her hand until she fell asleep. It changed his approach to visits forever. Let it change yours as well.

Word for Today

“The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deuteronomy 31:8

Song for Today

Prayer for Today

Dear God,

We come to you humbled today. Forgive us for always having an agenda of selfishness. Help us to have eyes open to the lonely and broken. When others cannot remember us, it is our responsibility to remember them.

Jesus told us that when we did things to the least of the people, we did it to him. Help to love as He loved.

Amen

Personalities change when a person has Alzheimer’s. I have seen a harsh person become as gentle as a lamb. I have seen a meek person become an angry bear. What we must remember is that these changes are all a part of the disease.

Frustration occurs when a person feels overwhelmed or loses control. Confusion is one of the leading causes of aggression. Imagine entering a world where your mind can no longer process sights and sounds as it used to. Imagine knowing what you want and not being able to express it correctly. Imagine being removed from your home and waking up in a strange place with a stranger removing your clothes and placing you in a shower. You might become angry and aggressive in those situations. I know I most likely would.

Since we know anger and aggression occur, we must watch for triggers that set this behavior off and learn to manage it when it happens. These skills will make life smoother and relieve tension in the home.

First we will look at possible triggers. Look for the cause of distress. Here are some possible causes:

• need to toilet
• pain
• over stimulated (noise and activity)
• boredom
• hunger
• tired
• too hot or too cold
• change of caregiver
• relocation
• loss of time perception
• inability to form new memories

Ways to handle anger and aggression are the responsibility of the caregiver. The person suffering from dementia has no control of their reactions. In fact, once the outburst is over they may not even remember it. Our first reaction is to correct or argue. This may have worked in the past but now those life skills must be tossed aside and new ones must be mastered.

You have to remain calm and use soothing tones. The person lives in Alzheimer’s world. In this world, they are always right. Arguing and reasoning only escalate their anger.

Here are some suggestions:

• eliminate the source of confusion or frustration if possible
• avoid physical contact
• speak in a calm voice and control facial expressions (hide your anger and frustration)
• Acknowledge their feelings (I know you are frustrated)
• take a few moments apart if possible
• alert your healthcare provider if you notice significant changes
• keep a simple routine

I cannot emphasize enough that you must remember it is the disease speaking and not the one you care for. My own mother was always in control of her emotions and very stable. I never remember her losing control of her emotions. When the disease progressed she actually punched me and was very angry. After getting over the shock, I worked hard to acquire skills in redirection of behavior and learned to take a time out to breath and regroup when neccessary.

There will be rough days. If they ever become dangerously aggressive, call for emergency help. Inform them right away that the individual suffers from Alzheimer’s. Emergency workers are becoming more informed and better prepared to deal with dementia.

Please do not allow this post to scare you or bring pain. It is best to be informed and begin practicing these new skills before you need them. As my own mother’s disease progressed we did have to add some medications. These eased her anger and aggression. She was very calm and gentle in her final years.

Song for Today

Word for Today

When I said, “My foot is slipping,” your unfailing love, Lord, supported me. When anxiety was great within me, your consolation brought me joy. Psalm 94:18-19

Prayer for Today

Dear Heavenly Father,

It is so reassuring to know that you always hold on to me and you will never let go. On the days that are stormy please give me calm and peace to care for my loved one. Give me patience and insight as I navigate the outbursts of anger and frustration. Restore joy to me when I feel mine is depleted.

Help me to focus on the good days. Guide me as I strive to enrich their lives by still making heart connections.

I thank you for bringing peace to both of our souls today.

Amen

Caregiving has levels. You usually enter in and see gradual changes much like walking into the ocean. Gradually health deteriorates and you find yourself getting deeper and deeper. Before you realize it, you are swimming in demands for your time, energy and attention.

At other times things change rapidly due to an accident or sudden illness. Waves wash over you and it is all you can to to hold you and the one you care for above water. The caregiving for someone with Alzheimer’s or other related disorders never eases because of improvement or recovery. The demands and level of care only intensify.

To survive this level of caregiving you will have choices to make. One choice is to include family members and close friends. Each one will have a role to play. You must ask who is willing to help and how they can help.

Begin by thinking of the person needing care and yourself inside a circle. That circle is surrounded by a larger circle. Then they are other circles as you move out.

The caregiver in the inner circle is the primary caregiver. This person is usually the spouse or most responsible relative. You will provide most of the daily care.

The second ring of the circle holds the periodic caregiver. This is a family member or friend who provides support to the primary caregiver. They usually see the need and assist without having to be asked. They should make themselves available whenever help is needed.

Next you have the peripheral caregivers. These are people who make occasional visits. They may assist with specific needs when asked.

Finally, you include (or try to include) the passive caregivers. These are the family and friends who either are in denial or forget that you are shouldering a heavy load. I once heard them referred to as seagulls. They fly in, poop on all you are doing and then promptly fly away again. Share information with them when asked. Forgive when you feel they have neglected you and your loved one and seem uncaring. It isn’t worth letting these feelings fester and turn to bitterness. Accept that you are doing your best and try not to judge.

Once you know where the family members and friends line up in the circle, you may decide you have to enlist professional caregivers. These include trained and untrained care providers that you must pay.

Outside of this circle are options such as respite care and finally an assisted living or memory care unit. When you feel like you are sinking, let them be your lifeguard. There is no shame in making choices that allow you to survive.

Only those inside the first rings of the circle should help you make those tough decisions. It is wise to seek advice from clergy and physicians when you need it. You are strong and capable but you will need help.

Song for Today

Word for Today

Plans fail for lack of counsel,but with many advisers they succeed. Proverbs 15:22

Prayer for Today

Heavenly Father,

You know the circumstances I am in at this time. I humble myself and admit I cannot do this alone. I need you first and foremost as my counselor. Give me wisdom as to who I should include in my circle of care. Show me those who will stand beside me. You sent Aaron and Hur when Abraham grew weary and tired. I know that you will send the help I need as well.

I praise you for being my strength when I grow weary. Help me to accept that not everyone will meet my expectations. Forgive me when I forget this. Guard my heart from bitterness and anger.

Amen

This is not a post about house flipping or remodeling even though I have a few of those under my belt. That is another post for another day. Today we will be discussing what happens or should happen in this room. If you have ever potty trained a child you know the frustration in the beginning and the happy dance in the end. Unfortunately, as a caregiver for someone with Alzheimer’s there is no happy dance in the end. Keeping calm through the problems with urinary tract infections and incontinence can be challenging.

A piece of advice I offer all caregivers of those with dementia is always consider testing for urinary tract infections when there is a sudden behavior change. Thankfully, I had an experienced emergency room team when I had my first encounter with this. Anger and aggression from a usually passive person caused the assisted living to contact me. No one had informed me that uti’s often lead to this. Delirium can result in as little as one to two days.

The bacteria in the urine spreads to the bloodstream. When this crosses into the brain, confusion and other cognitive difficulties can happen. In a brain that is already compromised, this may be worsened.

There are other symptoms to clue you in. These include foul smelling urine and frequent needs to urinate. Under the advice of an experienced elder care nurse, I learned to avoid catheters with my father. He had urinary incontinence and was on lasix. Due to mild dementia from years of diabetes he didn’t always make it to the bathroom or feel the sensation we do. Her advice was to avoid catheters because they cause frequent urinary tract infections.

If you find yourself suspecting a uti, ask the doctor to test. Please convince them the patient does not need a foley catheter. If you hate them, just imagine being in pain and confusion and having this happen to you. You have to speak up as the advocate!

Hopefully you will never need this information but I am adding it if you do. Not all incontinent products are the same. Trial and error resulted in finding the brand and size that worked best for my dad. We settled on a brand that several nursing homes use. I then ordered them in bulk online to save money. In our situation we had to use overnight both day and night. Toileting every 2 hours helped. Order water proof chair pads and mattress protectors.

We used an adult version of the diaper genie to help with odor control. My husband enjoys hunting so he alerted me of a laundry product and room spray called Dead Down Wind. Don’t laugh. It works.

If you are a caregiver long enough you may face adult diapers. I was in a support meeting years ago and met two incredible women. They were both in their 80’s and the sole caregivers for their husbands. I smiled to myself when I heard them discuss how shaving cream helps clean dried poop off easily. The idea was planted in my brain and I saved it in case I ever needed it.

Now, how do I find a word for the day, song for the day and prayer for the day for this post? Hmm, this may require another cup of coffee and potty break.

Word for Today

Blessed are those who find wisdom,
    those who gain understanding,
for she is more profitable than silver
    and yields better returns than gold. Proverbs 3:13-14

Song for Today

ok…I must confess. I was amazed at all of the potty training songs videos. My poor children didn’t have all of these fun videos and songs. I had to include just one to make you smile.

This song is a reminder that even when things get tough and the night is long our hope lives on!

Prayer for Today

Our heavenly Father,

You alone know the struggles we will face as caregivers. We ask that you give us wisdom to understand what our loved one needs. Watching them regress makes us aware of just how many life skills they lose. Help us to treat them with dignity and honor even when we must provide even the most basic of care such as with a babe.

When our hearts ache and long to have them as they once were we will cling to our hope in you that lives on. We praise you for this hope that helps us carry on.

Amen

Merriam Webster defines recess as follows:

1. the act of receding
2. a hidden, secret, or secluded place
3. indention or cleft
4. a suspension of business

As children we all knew recess as play time. As adults we tend to forget about how refreshing that break in our day was. My challenge to you as a caregiver is to make a list of what refreshes you and keep it handy for when you need it.

I will share part of my list:

• listen to praise music
• enjoy a cup of hot tea or coffee
• jump in the pool
• pick a bouquet of flowers
• take a nap
• dark chocolate

Go ahead. Grab a pen and start your list. When you are finished, do something on the list. You deserve a break today, so get up and get away. Please avoid the place your mind went to and grab a healthy snack instead though.

After one stressful week when my caregiving was long distance, I was exhausted. The drive back home was 6 hours that day because traffic was heavy. I pulled into an outlet shopping center to use the restroom and walk in a safe place. I noticed a vending machine and a massage chair in the restroom/refreshment area. I was so exhausted that I didn’t care what anyone else thought. This old girl dug in her purse for a few dollars, grabbed an ice cream sandwich from the vending machine, plopped into the massage chair and closed her eyes. Three minutes of bliss might have turned into three hours of bliss had I not run out of one dollar bills and was afraid of falling asleep.

Caregivers cannot afford luxury spas and have little time to enjoy such pleasures. It is important to carve out time to be refreshed though. You can not function as a caregiver without having a retreat to run to at times.

Find a symposium or conference for caregivers in your area if you can. Sometimes these are free for caregivers. If you happen to live in the northwest corner of Alabama there is one the first Friday in November. This year it is November 1st at Cross Point Church. The Walk to End Alzheimers in Florence is Sept 15th. Both are excellent places to meet other caregivers.

Time for recess! You need it my friend.

Word for Today

But I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble. Psalm 59:16

Song for Today ( fun song reminding us of the hope God gives)

Prayer for Today

Our Heavenly Father,

Today we just pause to thank you for the hope you offer us. We are grateful for having your arms as a safe place to run to when we need a break. Refresh our hearts and souls so that we can carry out your work in a way to bring you glory.

Renew our strength. Restore our joy. Send us out again fueled with your love to pour out.

Amen