Today is Memorial Day. I have been pondering the men and women who paid a great price for my freedoms. Some of these very people are now living with Alzheimer’s disease. It is a wonderful if they have lost the horrible memories some of them have carried. They may relive some of those memories if they have regressed to the point of actually thinking they are still in the trenches and battles. Triggers such as seeing war on the television or hearing fireworks can be very frightening and stressful to them.
I was teaching a church group one day that visits assisted living and skilled care nursing homes. I had taught them to always approach a person with dementia from the front. They were told to address the person by name and to tell them their own name. After a few more basic instructions, we started role playing.
I informed a man that he was a retired military man. He was only to anwser to Sarge, He actually was a retired military officer; however, I did not have that information. His performance was so brilliant that I figured it out very quickly.
His visitors had been told to address him by name. When they approached him, he kept his head down and ignored them. They repeated their greeting by calling his name and telling him theirs. He kept ignoring them. I leaned in and whispered “call him Sarge”. When addressed as Sarge, he saluted and replied “Yes Sir”. They talked for a few minutes and I urged them that the fire alarm was sounding. He immediately dropped to his knees, covered his head and shouted “incoming…incoming” and began to shake.
The supposed visitors were genuinely surprised and ended the role playing.
The whole group asked if I had coached him to respond that way. I assured them that I had not but his history lead him to demonstrate how a military person with dementia might respond. It was a very eye opening experience for all of us.
If you are a caregiver for someone who has served as a fireman, police officer, military personnel or first responder you should watch for triggers and be prepared. Sirens of any kind could cause anxiety. Gunfire can be another trigger. Be careful when allowing to watch the news. Lock firearms in a safe they cannot open.
You paid a price once when you were holding the family together while your loved ones were serving. Now you are paying a price again as you care for your family member with dementia. If I could give you an award I would. God sees and He can give you an award. Continue being strong and have courage.
Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom.
Song for Today
Prayer for Today
Dear God,
We are so thnkful for your comfort in this troubled world. Help us to keep our focus on you knowing that you alone are the answer to our prayers when things look bad. Give us courage to face our battles knowing you are on our side.
Living on a farm means so much work in the spring. We have been prepping the ground, planting seeds and building new flower and herb beds. There are more eggs to gather and baby lambs are bouncing around. I have to keep reminding myself that the fruit of our labor will be beautiful and amazing. We will love having fresh food and flowers soon. The lambs are already double their birth weight.
When you are in the early stages of caregiving it may seem like you will never adjust to meet the new demands. In a way, you are prepping for the future. You are planting seeds of love and compassion. The season of laying the groundwork to be a successful caregiver may not be giving you images of beauty. You have to trust me they will come.
Others will watch you labor and be moved by the diligence and grace that they see in your life. God is transforming you during the process. He is giving you a greater capacity to love. He is giving you grace to make mistakes and learn from them.
God placed Adam and Eve in a gaarden where they did not have to pull weeds. We as humans now live in a fallen world. Diseases such as Alzheimer’s and Lewy Body are weeds that have invaded our garden. Some people can be like weeds with their opinions of you as a caregiver. The enemy planted them just like a parable from the bible.
Jesus told them another parable: “The kingdom of heaven is like a man who sowed good seed in his field. But while everyone was sleeping, his enemy came and sowed weeds among the wheat, and went away. When the wheat sprouted and formed heads, then the weeds also appeared.
“The owner’s servants came to him and said, ‘Sir, didn’t you sow good seed in your field? Where then did the weeds come from?’
‘An enemy did this,’ he replied. Matthew 13
God did not send these diseases because of something we did wrong. You are not a bad caregiver. Others are not walking in your shoes so they have no true understanding of how difficult it is. We cannot just pluck any of these weeds from our life. We have to show mercy.
Keep praying. Keep showing compassion. Keep believing that God has equipped you to meet the challenges of caregiving. You will become a person of beauty that others notice. When they ask how you do what you do, share your true story. It may be what they need to hear to become a better person and caregiver.
Not everyone will respond well to your story. They may be angry and bitter as a caregiver. They may sting. Just be ready in case that happens.
I didn’t mention that we also keep bees on our farm. The honey is amazing. We wear protective gear and still get stung sometimes. When we remain calm, the bees calm down most of the time. Remain calm when an angry person stings.
Word for Today
James 1:2-4
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.
Song for Today
Prayer for Today
Dear God,
I truly want to be a beautiful caregiver that learns from mistakes, trust you for wisdom and allows you to trans form me into a peron that shines for your glory. Send people into my life that I can lean on when I need to.
Please read before continuing with this blog. After learning about how vision changes then you may better understand why the person you are providing care for becomes frustrated. You have to take this information and apply it. They may not be stubborn when they refuse to walk on a shiny floor. They are actually afraid it is slick and they do not want to fall.
Hallucinations and delusions can cause them to see things that you cannot see. They may be able to describe what they see in fine detail. This can get confusing for you. My mother-in-law called to tell me a friend was there to visit her. She had tapped on the window and motioned that she was going to the front door. My husband texted this person and they were not there. I continued to talk to her as she waited. This friend was a realtor, so I convinced my mother- in- law that she must have taken a call and had to leave to show a home. By the end of our conversation, she had forgotten that a visitor had been outside. If I did not know her hallucinations could be vivid, I would have believed our friend had been there.
I have heard many stories about a person not recognizing themselves in the mirror and believe a stranger is in their home. I can look in the mirror and see myself now and wonder who that old women is looking at me. Thankfully I don’t look this old. I sigh and walk away knowing I am no longer young. It is sad and I miss the younger version, but I am not fearful. I might be if I did see someone this old looking back at me.
One woman accused her husband of having an affair. She was angry and quite upset with him. He tried to convince her of how much he loved her. She took him into the bathroom to prove there was another woman in their home. He had to cover the mirror to bring peace to her.
You have to listen carefully and play detective sometimes to find out what is frustrating them.
Taking steps to assist include:
Regular Eye Examinations: conditions like cataracts, glaucoma, and macular degeneration can be caught before they impact daily life.
Proper Vision Correction: encourage wearing glasses if they have them
Environmental Modifications: provide adequate lighting and safe paths to walk in around the home
Understanding that vision problems in Alzheimer’s can stem from brain processing issues rather than the eyes them-selves is crucial. My mother-in-law had a bouquet of flowers. One day a monkey was hiding in that bouquet. The next day it was a lion in the mix. When the dancing lady appeared, I expressed that my eyes must be getting bad and tossed the flowers because they were beginning to droop. There was no reason to frustrate her over the fact that we couldn’t see what she saw.
Are you seeing a dog wearing glasses? I sure hope so because I am and I hope my brain is understanding this correctly!
Blessed are the pure in heart, for they will see God.
Song for Today
Prayer for Today
Dear Heavenly Father,
I praise you for your grace in my life. On the days my loved one is frustrated with their ability to see and understand their surroundings, allow both of us to feel Jesus in our lives.
Caring for someone with Alzheimer’s disease has a long steady stream of losses. You experience anticipatory grief. This is the emotional response you feel before a significant loss occurs. It involves sadness and anxiety.You survive this journey by mourning each loss as it occurs. Find a place to be alone and let the tears fall. Accept that the best place to be emotionally stable is when you learn to live in the moment. Let go of the losses and try not to look at what you are about to lose. Cherish what you still have and try to be there with your loved one.
Your mind will be invaded by many thoughts that distract you from living in the moment. You may find yourself anticipating how holidays will change. You think about what life will be like after your loved one is gone. These are realities that you can face when they happen.
You will feel guilty for mourning while they are still alive. Do not go there. Your grief is real and you need to allow yourself to process it. Find a safe place to mourn the little losses along the way.
I had a music list that I listened to and cried on the toughest days. Then I would pray and ask God to comfort me so that I could continue on as a caregiver. I am sharing my list below. I encourage you to compile your own.
Kari Jobe
I am Not Alone
Be Still
Steady my Heart
Cating Crowns
Scars in Heaven
Praise You in This Storm
Just Be Held
Anticipatory grief can come in stages.
Realization occurs when you come to terms with the fact that a loved one has a terminal disease. Shock waves of sadness hit you. These shock waves will knock you over. Eventually, you will find solid ground. You may deny the truth for a while. Then one day you accept it.
Reflection is a time of looking back. You may have unresolved issues that bother you. You regret things you have said or done. You wish you could repair these, but it is now too late. You can speak the words “I am sorry” and hope they hear you. Forgive any wrongs so that your heart has room to love.
You may journal your great memories to cherish forever. Find joy in these memories and use them to share stories with your loved one. It may trigger happiness in them.
Preparation thoughts enter your mind. You think about care plans. You anticipate planning a funeral. You look at finances. You think about your final conversations and plan how to say goodbye.
Emotional swings surround you. Anger, guilt, love, numbness, dread and pain overwhelm you as you process the grief. Working through these emotions while trying to remain strong for your loved one can be exhausting.
Facing the future without your loved one is difficult. Your life will go on and you will have to make adjustments.
The things listed above do not occur in this order. You will bounce between them all with anticipatory grief. You will be affected mentally, emotionally, physically and spiritually in the grief process. Be kind to yourself and seek help from family, friends, ministers and professionals if you need to.
Grieving along the whole journey of caregiving allows you to find strength to go on. You will still grieve over the final loss. You will have established a framework for coping.
Word for Today
Psalm 29:11
The Lord gives strength to his people; the Lord blesses his people with peace.
Song for Today
Prayer for Today
Dear God,
Saying goodbye to my loved one is so difficult. I need your peace and comfort. I need people to hold my hand and offer support. I need You to be my strength.
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.
I think every person who has a parent with Alzheimer’s has a nagging question that pops into our thoughts from time to time. The time it seems to hit me the most is when I can’t remember a person’s name. My mind then keeps dwelling on remembering that name. It does come to mind later and I feel relief. No, I am not getting Alzheimer’s disease. Go away negative thoughts. I am doing alright.
Let us face the question together. What if this happens to me? It is not something to be ashamed of. I know that is true; however, I like to be in control of my thoughts and behaviors. Should I lose that ability, I know it will be frustrating and scary. I have always been a little independent. None of us want to have someone else bathing us, toileting us and feeding us.
I have talked with my husband about this. He wants to believe that this would never happen to either of us. We have seen enough to know it could. We have agreed to be open and honest with each other if we ever see signs of cognitive decline. We want to plan together and live as normal of a life as we can for as long as we can. We pray that God guides us through His plan for our life.
I have pondered getting tested before I even notice issues. I have listened to stories about the new medical infusions that can delay the progress of Alzheimer’s if caught early enough. Personally, I am coming to a point of thinking that I know it could happen and should be prepared, but I don’t want to find out it is coming and drag that ball and chain around for years before it arrives.
I intend to watch the results of the new medications, Leqembi and Kisunla. They are so new that I need to know how the person is effected. That would be a hard choice for me to make at this point. It is not a cure. It simply can delay the progress of the disease.
My grandmother developed Alzheimer’s later in life. My mom was diagnosed in her late 60’s. This does not mean I will or will not get Alzheimer’s. Neither of my relatives had early-onset Alzheimer’s. I am sharing some information from Mayo Clinic to explain.
Young-onset Alzheimer’s disease is an uncommon form of dementia that affects people younger than age 65. The condition also is called early-onset Alzheimer’s disease. Most people with Alzheimer’s are age 65 and older. About 1 in 9 people age 65 and older in the United States has Alzheimer’s disease. About 110 of every 100,000 adults between ages 30 and 64 have young-onset Alzheimer’s.
Family history of disease
For most people with young-onset Alzheimer’s, the cause is not related to any single gene. Researchers don’t fully know why some people get the disease at a younger age than others do.
Risk factors for young-onset Alzheimer’s disease include a family history of the condition. Having a parent or grandparent with young-onset Alzheimer’s increases the risk of developing the disease. But a family history of the disease doesn’t mean you will necessarily develop the disease.
Genes that cause young-onset Alzheimer’s
Less commonly, young-onset Alzheimer’s is caused by a specific error in a gene, called a genetic mutation. Genetic mutations can be passed from parent to child.
Three different genes may have a mutation that causes young-onset Alzheimer’s disease. These genes are APP, PSEN1 or PSEN2. A person who inherits at least one copy of a mutated gene will likely develop Alzheimer’s disease before age 65.
About 11% of people with young-onset Alzheimer’s carry a genetic mutation that causes disease. But among all people with Alzheimer’s disease, fewer than 1% carry one of these causal genes.
Genetic testing for these mutations is available. If you have a family history of young-onset Alzheimer’s, you may want to do genetic testing.
All of this information will not make the nagging question that invades our thoughts go away. The more information we have will help us make wiser decisions.
While you continue to provide care to others, focus on doing just that and not worying about your future. It is a hard thing to do. Almost every event I speak at or support group discussion I lead has someone who asks, “Does this mean I will get Alzheimer’s too?”. It is a difficult question.
For today, I choose to hope and pray that my mind will remain strong. If you notice my writing is poor, please comment. I may have just stayed up too late writing or had too much coffee.
You are not alone as a caregiver. You are not the only one asking themselves (THAT) question. There are huge numbers of people on this same journey. I encourage you to find other blogs, listen to podcasts and read. Snipplets of information gathered along the way add to your knowledge and toolkit for caregiving.
“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?
Song for Today
Prayer for Today
Dear God,
Only you know my future and I trust you with that. When I allow tormenting questions to flood my mind, help me to continue to trust.
“In the grand tapestry of life, caregivers are the unsung heroes, often weaving the threads of compassion, dedication, and resilience to support our loved ones”. (unknown source).
The time and energy to do this weaving is exhausting. From the back side of the tapestry you may just see frayed and tattered ends. “No beauty can be made by this mess”, “ this is near impossible” and other thoughts fill your mind. Despair can rob you of hope if you dwell on these thoughts.
I want caregivers to be like a thriving plant. To thrive you have to pick the weeds out of the flowerbed. Weeds can be those negative thoughts. Weeds can creep in through judgment and criticism from family members who are not actually in your day to day life. These family members remind me of stinging nettle.
Stinging nettle is a nutrient-rich herb with a wide range of medicinal and health benefits, including anti-inflammatory, antioxidant, and antihistamine properties. You family members and friends have their good qualities just like this plant has its good side. There is a bad side when dealing with this plant. Stinging nettle is known for its stinging hairs that can cause temporary burning, itching and redness upon contact with the skin.
I know stinging nettle it is not a weed so I can leave it in the flowerbed, but I have to handle it with gloves on my hands. When people are difficult we can’t simply pluck them up and toss them aside. We cannot become angry and bitter when they show up. God’s grace teaches us how to navigate their presence.
Hope can only fill our hearts from a trust in God. Encouragement from friends can make the task look less difficult. Music can sooth our hearts and usher in peace. Prayer can allow you to unload your load at the feet of Jesus.
You did not ask to be a caregiver. I did make a promise in my wedding vows that I would be with my husband in sickness and health, for better or for worse until one of us passes away. I also took God’s word to heart and honored my mother and father. When God tapped me on the shoulder to take care of my parents, I guess he was reminding me that I owed that to them. That was His ask and I said yes.
God equipped me because He was weaving a tapestry of beauty. He was providing compassion, dedication, and resilienece to me and enabling me to complete the task. Others around me were watching the whole process. They often saw the ugly mess on the backside. Then one day God turned it around and allowed them to see the beauty of the finished product.
You can trust God to teach you to thrive during the process of becoming beautiful. My caregivers in the local support group are some of the most beautiful people I know. Their stories are heartbreaking. They come from many backgrounds and enter caregiving with fears and doubts. They feel ill-equipped. As they continue to adapt, change, make adjustments and trust God, they gain confidence.
It is time to shake the wrinkles out of your superhero cape and wear it with confidence. It is a badge of courage, not a symbol of shame. Rest in the assurance that God loves you and the one you are caring for way more than you realize. You are the one God chose to wear this cape.
Word for Today
Isaiah
and provide for those who grieve in Zion— to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.
Song for Today
Prayer for Today
Dear God,
You are so wonderful in leading my steps. I praise you for the grace you show in taking my ashes and giving me beauty. I have answered the call to be a caregiver. I know it is not easy and that I will make mistakes. When I mess up, please help me learn. Day by day and sometimes moment by moment I will need you help. Take me and my messes and make something beautiful.
Protect me when well meaning people offer advise and even criticism. Show me how to handle them while keeping my own heart tender and free from resentment and bitterness.
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.
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.
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.
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.
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.
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.
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.
Walking Them Home 