We found by entering on the driver’s side and sliding across the seat of our utv allows my husband to be driven out to visit our farm animals that we still have. Luna and Layla are our Akbash guardian dogs and they were excited to see him. The sheep responded quickly to hearing their shepherd’s voice. It was wonderful seeing the smile on his face as we drove through the pasture.
We have cut down the time for taking showers and I am cooking more healthy meals at home. A new robotic vacuum cleaner saves energy for me as well. Even with the small victories, one choice we made leaves me sad. Someone came and took all of our chickens. The lifting of 50 pound bags of feed, chasing hens that like to roam, gathering eggs and then washing the eggs was a little taxing for me. I admit I miss having them on the farm. I miss the roosters crowing and the hens cackling after laying their eggs.
Navigating the medical bills and finances has been stressing, but I think most of the tough stuff is about done. If you don’t have a health savings account, you need to. We entered retirement with one and it has literally saved our checking account from being drained. Money from IRA accounts enabled us to purchase a new vehicle that works better for us with the wheelchair.
While giving up water exercise was difficult, I have discovered that pushing a wheelchair is a pretty good workout. Chris is getting better with walking with his hemi walker. His vision is still improving.
Every hug, text, gift card, meal, prayer and acts of service have been blessings and victories. Many people have lifted our spirits and fed our souls by the love they have shown. We move forward with hope. Holding onto faith and hope is not always easy. You push through the dark moments with tears and pain. Sometimes it feels like climbing a mountain with little strength. If you keep your sight on the mountaintop, you are compelled to keep climbing. Knowing that God is with us in the valley as well as on the mountaintop drives us on.
“Hope is not the absence of pain, but the presence of God in the midst of it.” – Joni Eareckson Tada
Word for Today
“May the God of hope fill you with all joy and peace as you trust in Him.” – Romans 15:13
Song for Today
Prayer for Today
Dear God,
Sometimes I don’t see you or feel you but I know you are with us. We may not understand your plan but we are surrendering to it. Walking by faith, we press on. Praising you in the midst of the storm we stand in hope and praising you for each victory.
I find myself swimming in a fast moving stream. Information, updates, questions, juggling my time and preparing for whatever the future holds.
Yesterday I became an advocate and learner. Physical and occupational therapists are teaching me transfer methods, about assistance devices and care plans. We have a long road to travel and my husband is working as well as he can to overcome damage from his stroke.
This type of caregiving is new. I am searching for a vehicle that will make life easier after we are discharged. Our home may have to be arranged to make it safer. Thankfully, I have freinds and neighbors to help.
I drove into the pasture to love on my dogs who are missing us. I wore my hisband’s shirt so they could smell him. They were very loving and sweet. I checked on the sheep and now have laundry to do before heading to visit at the rehab facility.
It feels like I am walking aroumd in a fog. I am so tired. Many of you have had this same feeling.
God is my hope and strength. He has amazed us with a peace that does pass understanding. We are trusting him with our future. I have used the song I am posting today before. I needed to hear it today so maybe someone else does too.
Our lives may be changing but God is still writing our story.
He gives strength to the weary and increases the power of the weak.
Song for Today
Prayer for Today
Dear Heavenly Father
We come to you trusting you with our future. Whatever you have in store for us, will become our plan. Give us hope, peace and grace. We thank you for the amazing friends and family you have sent to assist us right now. Humbly. we accept this help and hope to be able to bless them as they are blessing us.
My “spa” for the day. Sit in a comfortable chair, take long breathes and wait while the clothes are washing and drying Pause for a few minutes to pray and allow God to comfort you.
My husband called me at 4am because he had dropped his nurse call button and he needed help to go to the bathroom. I very gently spoke with him. He can’t see the clock and had no idea it was 4 am.
Sitting by the side of my superman has been tough. He has a sound mind, can eat and speak but has no control or feeling on one side. His periphial vision is compromised as well. He had found his cell phone on the tray by the bed and somehow managed to call with one good hand. He is one foot taller than me and still very strong even if he can’t control one leg amd arm yet. I need to be strong for him, so I find a quiet place to cry and pray while looking around our home wondering how to adjust.
I have to remind myself that he needs me so I have to sleep and eat right when I am not by his side at the rehab facility. We had tag teamed in caring for our parents. Now that is not possible. I am getting a full experience of what you spousal caregivers face.
A team of prayer warriors, neighbors, family and friends has gathered around us. Humbly and gratefully we are accepting their help. This is so hard to do when you are an independent person.
Some of the wonderful people who have attended the support group I lead have called to remind me of the advice I have given them. These moved me to tears.
I know this may seem like I am rambling and I most likely am. Sleep deprived and overloaded describes me best at the moment. I came on to say take care of yourself even if it is finding a comfortable chair and allowing God to hold you for a few moments.
Word for Today
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Phillipians 4:6-7
Song for Today
Prayer for Today
God,
I come humbled today. You are my strength. You are my shield. In all of this change and challenges, I trust you. Guard my heart and mind. Give me peace and wisdom.
Nine days ago I became a caregiver again. My amazing husband who I call superman because of his physical and spiritual strength was on the platform with his guitar and ready to lead worship for an evening service at our church when he had a stroke. I rushed to his side. I followed the medics to the ambulance. Within moments they decided he had to be flown to a hospital in another city. I drove to the pickup site to see him loaded into the helicopter. I was shaking so hard a friend drove me to the hospital.
The doctor met me as soon as I got there. I vaguely heard the words stroke, blood clot, and I am going in to remove it now. God had kept him alive. I sat and waited to hear the results. Friends and family had rushed to my side. About 1 in the morning I sent everyone home and sat by his side. Due to a lack of intensive care units, we were there until late afternoon before entering the icu unit.
My husband’s mind was strong. He could talk. His right side was not effected. His left side was effected and some vision is off. We were in icu for several days before transitioning to a regular room. Now we have transitioned to an acute rehab facility.
I have slept in a chair by his side in the emergency room. A recliner in icu and a bench with cushions in his hospital room. All night long the walls vibrated and helicopter fumes were happening. We were directly below the launch site. I exhaustedly roamed around the hospital finding a bite to eat or drink and a place to shower.
My mind raced with questions as I turned to God for peace. I tried to be calm and self assured when with my husband. Amazing staff truly showed compassion. I fell asleep in the icu unit and missed the time I was supposed to leave. A nurse walked in and woke me. I apologized and reached for my purse and shoes to leave. Then I heard my husband ask for her to please let me stay. She turned to me and I am surprised at what I asked. “Have you never seen the movie The Notebook?
Her heart softened and this sweet nurse was the charge nurse. She found me a recliner and a blanket. She came in as shifts changed and whispered “I will be here for the next three days. You can stay each evening but don’t tell the others in icu waiting. God’s favor was so with us that I am crying as I write.
My husband and I prayed for physicians, nurses and anyone who helped care for him. When I ventured out I prayed for families with adult children on life support. God had complete strangers approach me and ask to pray for me.
I share all of this with you because it has been my story for years now. When you walk through the toughest and darkest times, God is your strength. I do not know if my husband will recover. I am looking at my vehicle and home thinking about changes and adjustments. I want to be able to hold his left hand and have him feel it. I may now be caring for a man who has always been strong and independent.
If this doesn’t make a lot of sense, I am really tired. Two nights ago, I settled enough to sleep. Nine hours later, I woke up rested.
The caregivers I lead a support group for have called and even visited since he moved into rehab. That about ripped my heart strings because I know they carry a heavy load themselves.
Now that I am in the current situation, I was forced to allow people to help. My farm animals had to be cared for. Friends have mowed the lawn, fed the animals, collected the mail and brought meals to me. When caring for my parents, I did not ask for help when I really could have used it. Now this 5 foot tall woman will need help caring for my 6 foot tall husband.
Allow people to help you when you need it.
Stay tuned as God writes our story. My husband was able to use a harness and attempt to take steps yesterday. He is very determined to recover as well as he can. Our prayer is for total healing, but we accept God’s plan for our lives.
Word for Today
Romans 8:37-39
No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
Song for Today
Prayer for Today
Dear God,
We praise you for walking each day with us giving us hope and comfort. You show up in the dark silent moments when we can’t even find the words to pray. You see our hearts and meet us where we are. Bring strength to us when we are weak.
While researching this week for a presentation on anticipatory grief, I came across the words stacked grief. These words grabbed my attention because they described two stressful seasons in my own life. This is when losses are suffered in close proximity to each other.
All caregivers for someone with Alzheimer’s disease and related diseases come to understand grief. It may come as the one you love loses skills or if it is the final loss when they pass away. You learn to work through grief most of the time.
You may grieve when you look ahead at what you are about to lose. When you experience anticipatory grief, you may feel guilty for grieving before the person passes. There is a large emotional toll. It takes time to learn to balance your emotions.
I discovered after my mom had moved into mid stages of Alzheimer’s that my father was showing mild cognitive decline. There was not a lot of time to allow myself to grieve the little losses. I tried to, but sometimes I packed the emotions away. It was like each loss was a wood block in the game called Jenga. This is a game we played with our children when they were young. Each of us held our breath when stacking the blocks into the tower or removing a block. No one wanted to cause the tower to tumble. I made every effort to build a balanced tower as I tucked my emotional blocks in but I feared someone might pull a block and everything would fall apart.
The tower was getting higher and higher. I grieved leaving my husband to take care of my parents. I grieved leaving my parents to return to my own home. There was grief when I could not spend time with my own children and grandchildren. The blocks of grief were stacking fast and furious.
My mom passed away. The block tower of grief continued to grow. Our home flooded. Another block is stacked. I had surgery. Add several blocks this time. My dad passed away. That almost toppled the tower. God must have glued the stack together so I could survive. I had relied on the solid rock of Christ when I started to build this tower.
Instead of the blocks all tumbling down, it felt as if God gently handed me each block. I held it and shed tears. When I was calm, he handed me another one. As time passed, I accepted the losses and allowed God to mend my heart.
There was a small reprieve. Then blocks of grief were reappearing and I tucked them into a new tower. We sold the home we loved to be closer to my in-laws. I truly hated leaving our home that had just been restored from the flood. The difference in handling grief is what I had learned the first time. Place a block when time does not allow grieving. When things settle, pray for a season of healing and peace. That lasted for about a year. Then the tower rose fast. My father-in-law was diagnosed with cancer. My mother-in-law was showing signs of dementia. Within three years we said goodbye to both of them and 2 pets. There I was again feeling as if the tower of grief was about to tumble down on me.
God was faithful and helped me process everything again.
I am no superhero. I suffered pain, frustration, grief, anger, and many more emotions. There were days that exhaustion got the best of me and I caved under the load. There were days that I stepped back and cried over the gradual losses. With God as my protector and healer, I moved on.
A choice was made to live in the moment while trying to make the most of each situation. Jesus faced grief and wept when his friend Lazarus died. He went on to raise Lazarus from the dead. If he did this, then I knew he would raise me from underneath stacked layers of grief.
Very truly I tell you, you will weep and mourn while the world rejoices. You will grieve, but your grief will turn to joy.
Song for Today
Prayer for Today
Dear God,
I praise you for being my protector, healer and peace. Grief can be hard to bear, especially when the losses happen so close together. You gave us emotions and I struggle sometimes when they are filled with sorrow. Then I am reminded that the sorrow is a result of losing someone I loved dearly. My life has been blessed my many people who I now miss. Please help me to be grateful for the time I had with them.
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.
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.
