In the movie Pollyanna, a little girl always looked at the world watching for things to be glad for. When you are a caregiver, you may experience many days of looking for things to be glad for. It is important to take the time to reflect on what you can count as blessings. The blessing can be as simple as a shared smile. If you watch carefully, you will begin to discover there are many blessings. It may be an unexpected card in the mail from a friend. It may be a call from a friend asking to come visit. It may be an especially peaceful day when both of you can take a nap.
There are many days that friends and family do not provide the blessings we need. That is when we have a heavenly Father to turn to. God hears our prayers and we should not hesitate to let him know when we need comfort, peace, wisdom, encouragement and joy. We can boldly approach him when we need to see blessings in our life. After praying, be watchful to see answers to our prayers. Then offer up thanks for these blessings.
God made it so simple to come to Him with all of our needs. Sometimes we waste time feeling sorry for ourselves when we could simply make our needs known to the only One who never fails us. In my life, I discovered that a huge blessing I walked away from caregiving with is the knowledge that God never left even on the darkest days.
His faithfulness to me is the same faithfulness He has toward each of His children. As Thanksgiving approaches I will be praying for you to find things in your life to count as blessings and be thankful for.
Word for Today
Devote yourselves to prayer, being watchful and thankful. Colossians 4:2
Song for Today
Prayer for Today
Dear God,
I come to you with a thankful and expectant heart. You see my day with its highs and lows. You search my heart and see my struggles. I come boldly like a child looking for you to meet me each day. I ask that when my faith is low, you will reassure me that there are things to be thankful for. Let me feel you warm embrace and relax in your presence.
Deciding who to share information with is something you will face as a caregiver. You need to process the idea that someone you care about now has a terminal disease. If you need help accepting and processing this information, please seek out someone to help you. My life had crossed paths with two casual acquaintances who were already caregivers or had been. They listened to me and became friends. They were walking the same path but were many steps ahead of me. They encouraged me to prepare for what lie ahead.
In preparing you will want to build a support network. Consider the people you interact with the most. This may be family members, neighbors, coworkers and close friends. Most likely they will not be surprised by your news. They may have observed changes in your loved one and actually be relieved to know what it is. Slowly begin to share with these people. They need time to process as well. The pattern usually moves through shock, denial and finally acceptance.
Once everyone has arrived at acceptance, they will be more wiling to offer support and encouragement. If the person with Alzheimer’s is still working, the employer needs to be made aware. They may be willing to make adjustments to expectations. Do not fear that telling them will result in termination. It will happen eventually as the disease progresses.
You do not have to tell people outside of your support network right away. Take your time and tell those you trust and value in your life. These are the ones who will walk the path with you.
I highly recommend finding a good caregiver support group. They are not all the same. Visit a few if you can find them and find the one that feels right for you. The group should offer information, encouragement, listening ears and fellowship. The ages will range from young adults to seniors because caregivers can be spouses, siblings, children, grandchildren or nieces and nephews.
Talking about Alzheimer’s is nothing to be ashamed of. It is simply a disease effecting an organ. This organ happens to be someone’s brain. They deserve to be treated with love, respect and dignity. By sharing why their behavior has changed is showing love. Your job is to share so that others understand and make adjustments in how they interact with your loved one.
This takes courage but you can do it. If your loved one doesn’t want anyone to know, do not argue. Simply tell who you need to when you feel the time is right. Your loved one may experience fear, confusion and even paranoia so do it quietly. They will have lost reasoning skills and trying to explain to them why someone needs to know may only make things worse.
Sending love and prayers your way as you travel the path of being a caregiver. It may seem daunting at times, but you can do this. When you listen to the lead in to today’s song remember the two people I mentioned at the first of today’s post. God caused our paths to cross and He will cross your path with those you need.
Word for Today
Dear friends, since God so loved us, we also ought to love one another. I John 4:11
Song for Today
Prayer for Today
Our Heavenly Father,
We are so grateful that you love us enough to send people to hold our hands and keep us lifted in prayer. Give us wisdom to know who to share our burdens with. Give us courage to ask for help when we need it. Give us the ability to accept our circumstances knowing that you are here with us. Give us peace and the ability to proclaim “it is well with my soul”.
Tis the season to be bombarded with marketing displays. The stores want to appeal to all of our senses as we shop for costumes, food and decor. In October we all love the smell of apple cider and pumpkin pie but we don’t all love being scared. You can walk through your local big box store and turn a corner to encounter a giant monster and scary music. As a caregiver you have to remember that the things you know aren’t real can be very real to your loved one with dementia. They must be protected from things that can startle or alarm them. This may mean avoiding stores during the month of October as much as possible.
I would turn my lights down and avoid answering the door for trick or treaters. You might plan a quiet outing to visit a friend who lives away from the hustle and bustle.
As the candy wrappers disappear the festivities of Thanksgiving and Christmas loom on the horizon. While family gatherings can be wonderful for many, they can be intimidating for someone who is already confused. Over stimulation drives them into a shell. The key to navigating the holidays is to keep things simple.
It is alright to decorate the tree, bake cookies and play carols. Just spread the activities out. Take down time to sip hot cocoa and enjoy the cookies. Entertain a few visitors at a time rather than large groups. Avoid the shopping crowds. Take advantage of online shopping. Consider ordering groceries online if it is available in your area. Taking a short ride to pick up filled orders might be fun for your loved one.
If your loved one lives in a facility ask yourself the hard questions. Do I bring them to the family gathering? Why am I doing this? Do they truly enjoy the large crowd or is it to ease my guilt? Many times they return exhausted, confused and agitated. Perhaps you can spread the family out and make short visits to the facility so you can visit one on one without so many distractions.
One year my husband and I found a cabin in the mountains and took my parents just before Thanksgiving. We cooked our meals in and simply enjoyed watching wild turkeys on the property. We chose to take a drive to one of my mother’s favorite spots. She was very peaceful and remembered taking trips there before. On our way back to the cabin snow began to fall. It is one of the best days she had just before her disease progressed to a new stage. We entered Thanksgiving with peaceful hearts.
The most important gift we can give and celebrate is the love we share and the joy we find in Christ. Wrap your loved one in your arms and let peace surround you both.
Word for Today
“Glory to God in the highest heaven, and on earth peace to those on whom his favor rests.” Luke 2:14
Song for Today
Prayer for Today
Dear God,
We come to you today seeking the humbleness of a child who trusts so easily. We make it hard and forget that the peace of Christ is a gift you give freely. Let us remain in this place of peace as the holiday season approaches. Remind us to slow down and focus on what truly matters.
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.
We build too many walls and not enough bridges. Isaac Newton
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.
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.
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.
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.
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.
Walking Them Home 