What if This Happens To Me?

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.

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What is young-onset Alzheimer’s?

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.

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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.

Have a blessed day and stop worrying.

Word for Today

Matthew 6:25-34

Do Not Worry

“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.

Amen

Denial about Alzheimer’s Diagnosis

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

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

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

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

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

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

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

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

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

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

Blessings

Word for Today

Joshua 1:9

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

Song for Today

Prayer for Today

Dear God,

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

Amen

Breaking Old Communication Habits

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

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

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

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

Take the word great as an example.

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

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

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

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

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

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

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

Arguing doesn’t work.

Reasoning doesn’t work.

Asking them to make a choice causes confusion.

*PATIENCE is critical in communicating.

Word for Today

Proverbs 15:18

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

Song for Today

This song helps focus on how temporary our struggles are.

Pray for Today

Dear God,

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

Amen

Merry Christmas!

Two posts for one today. I just wanted to add this post before the end of the year. This is a time I have set aside to celebrate the birth of Christ and the upcoming anniversary with my husband. My mind is racing with what the future holds.

We were so young when we began this journey of life together. Reflecting over the years we realize there have been too many times we put things off until later. At our age, later is here. Leading a caregiver support group means hearing a lot of stories that ring true for us. Too many of my caregivers talk about the plans for their retirement years that unraveled due to Alzheimer’s invading their life.

We are choosing to do a few of the things we enjoy that we can afford to do.

slow down and enjoy sunsets
sit by the firepit and watch meteor showers
fish on a pretty day
garden
tend our sheep
visit with our friends
take a drive in the country
volunteer
eat when hungry….sleep when tired

You get the idea. We have a lower income now so we are learning to be content with what we have. All of us look ahead and face a question. How long do we have? Make the most of your time.

Caregivers have an uncertain future with their spouse. My dad learned to put my mom’s makeup on. Another man I know bought his wife who was in the late stage of Alzheimer’s a doll. Every night he tucked the “baby” in after she kissed him goodnight. Your love for each other will not die. You just learn to express it in a different way.

Sometimes the unexpected changes hold hidden blessings. Look for your blessings.

Word for Today

Proverbs 3:5-6

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.

Song For Today

Prayer for Today

Dear God,

We are so blessed by you. We praise you for the many blessings you have given us.

Amen

Excited to See Love in Action

Recently, I spoke to my own church about how they could become more dementia friendly. This included information on how to come along side families and meet their needs as well as learning how to communicate and relate with the person who has dementia.

This type of training allows people to visit someone with dementia in their home without being afraid of the unknownand feeling uncomrtable. Isolation is not good for the person with dementia or the caregiver. They need to have people in their lives to comfort and encourage them. They need friends who can step in and offer respite care. Offering to stay with the one with dementia requires taking time to understand where they are in their journey and adjust to meet them where they are. True love is stepping up to the plate even if it makes you uncomfortable.

Do not ask a caregiver ,”What can I do for you?”. Use your observation skills. Does the lawn need mowing? Do light bulbs need changing? Think of practical things that they may need assistance with. Bring a meal over. Offer to change their car oil. Plant flowers in the flowerbeds.

We can all find a way to help.

The second part was about how we can meet their needs when they attend a church service. It takes a huge effort for the caregiver to actually get someone with dementia ready to go anywhere. Often there are clothing changes due to accidents. You only cause behavior issues if you rush to get ready. Confusion and crowds play into the equation as well. Both people will arrive tired.

Can someone who has served as an usher still serve with mild cognitive decline? Can this person still sing in the choir? Can this person still teach a Sunday School class? The answer to each of these questions is yes! They may need an assistant, but they can still find a purpose as long as possible.

Yesterday I watched an elderly gentleman follow a group onto the stage for a music special. He was seated and given a paper to follow along and he sang. I was moved to tears because I am pretty sure he had mild dementia.

If someone is on a walker, offer to visit with them at the door while the caregiver brings the car to the door. When friends come over to speak to the caregiver after service engage the person with dementia while their spouse shares a few moments with friends. If you notice a caregiver step out to go to the restroom, move over and sit with their loved one so they do not get afraid.

We can be the love that enters someone’s loneliness.

Word for Today

Luke 10:27

He answered, “‘Love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind’; and, ‘Love your neighbor as yourself.’”

Song for Today

Prayer for Today

Heavenly Father,

Show me how to love as you love. Open my eyes to the needs around me and give me the compasssion to meet those needs.

Amen

Overstimulation During The Holidays

Feeling annoyed or drained, acting confused or frustrated, and not being able to make decisions could be signs of overstimulation in adults. That is what can happen to any of us whether we are the caregiver or the person with dementia.

I have overscheduled many times in the past during the holiday season. Sewing 30 angel costumes in one day, forgetting to eat due to cleaning all day, staying up late to finish painting a toy train and traveling for 10 hours with a three week old and twenty month old days before Christmas are a few of examples that come to mind.

Wisdom comes from experience. Thankfully, I learned to slow things down when my mom got Alzheimer’s disease. Christmas was still celebrated. It was just celebrated in a calmer manner. I had noticed as my parents aged that they avoided loud and rambuncious games played by the younger adults and grandchildren over the holidays. They tended to visit in another room with the youngest grandchild. This caught my attention, so I already knew we needed to make a few adjustments.

We planned carefully to prevent overstimulation. Loud music, bright lights and even laughter of children can be frightening for someone with dementia. I was visiting my mom in the facility she was living in during the late stage of Alehimer’s. I could hear a large group of carolers coming down the hallway. They were going door to door and singing. I sensed mom was getting tense, so I quickly stepping into the hallway and asked that only one or two stand in her doorway and the rest of the group sing in the hallway. They had no idea that a sudden rush of people into her room would cause anxiety that would take hours to go away. Instead, they did as I had asked and a smile was on her face as she listened.

You can participate in joyful activities if you plan ahead and let your family members know what would work best in your situation. Maybe the family come in small groups. One could read a Christmas story or sing softly with their loved one. Bring cookies to munch on together. No one I have ever met with Alzheimer’s can resist sweets.

A recent family picture to hand on the wall makes a great gift. If they don’t remember your names, that doesn’t matter. You can write your names on the photo. Include a We Love You. The important thing is they see those words. The most treasured gift is a hug, a held hand, a smile and words of kindess. Avoid asking do you remember. Tell them about the most fun you have ever had with them. Tell them how they have made a difference in your life. Share about what you have going on in music, school, sports or work. They are always listening, even when you think they aren’t.

Simplify the holidays. Slow down. Listen to O Holy Night. Thank God for his gift of Jesus. Sip a cup of hot cocoa. Allow peace to reign in your heart. Have yourself a merry little Christmas.

Word for Today

Mark 4:39

He got up, rebuked the wind and said to the waves, “Quiet! Be still!” Then the wind died down and it was completely calm.

Song for Today

Prayer for Today

Dear God,

I come to you with a thankful heart. I am a caregiver and some days are challenging, I still have a hand a hold. I know that change will come as I see skills being stolen by dementia. Give me the ability to treasure our memories and to love well on this journey. Allow this Christmas to be focused on the peace you give us. Calm the storms of this busy world and quiet the loudness so we can celebrate you.

Amen

How Do Couples Cope With Dementia?

As a couple, my husband and I can communicate with each other with a certain look or touch. We have honed these skills during our 45 years of marriage. Just snuggling together or holding hands doesn’t always require words. When we first began dating we were with a group sitting around a campfire. He snuggled close and put his arm around me. Instantly, I felt at home. This was just the very beginning of moments, days, months and now years that wrapping an arm around me and holding me close have been home.

Should either of us ever develop dementia and roam around repeating, “I just want to go home” what will we really mean. I know most people just want to go back to what feels safe and familiar. Maybe our home will continue to be snuggling together where it has been safe and familiar our entire adult life.

Daily I praise God for allowing both of us to still have strong minds. Muscle strength has weakened, hairs have grayed and we search for our reading glasses to prevent eyestrain. We may not be able to recall someone’s name, but then it comes to us so normal aging is happening.

This afternoon as I write my hubby is strumming his guitar and writing a new song. Our hobbies keep our minds active. We love being outdoors with the dogs, chickens, bees and sheep. We are building a firepit area to entertain friends.

Our hope is that living in the moment intentionally and trusting God with our future will mean we never have to face dementia. We know that God will continue to be faithful. He has seen us through deep dark valleys and allowed us to rejoice from the highest of mountain tops. Should dementia come, we are assured that God will never forsake us.

Some of you have had to face dementia in a spouse. I hear your stories in our support group. I pray for you to still find moments each day where you and your loved one can still connect. Maybe a favorite song will draw you close. Perhaps a drive to one of your favorite spots will bring peace. Take every opportunity to have physical contact. This can be holding hands, hugging, or giving a gentle massage.

During the upcoming Christmas season play carols, eat Christmas cookies, drive around and look at the lights. Rediscover the simple joys. Large gatherings should be avoided but quiet visits with a few people at a time can still bring happiness.

Never quit saying “I love you”.

Most people my age made vows to love and cherish their spouse in sickness and in health until death. As a young couple we make that promise. Life happens and those promises are not so easy to keep. We make a choice to keep that promise and discover God has to give us the courage and strength to walk it out. The greatest honor you can have is to be the one who stands by that promise.

God sees your loneliness and struggles. He sees the tears shed when no one else is looking. Trust him to walk beside you in sickness and in health.

Word for Today

John 13:34

“A new command I give you: Love one another. As I have loved you, so you must love one another.

Song for Today

Prayer for Today

Dear Heavenly Father,

May I always find my home is being with you. When my spouse doesn’t remember my name please let them know my love. Show me how to express my love ina way that they can feel. Help me to keep the promise I made on our wedding day.

Amen

Parkinson’s With Dementia

Parkinson’s dementia is closely related to Lewy Bodies dementia.

Studies have found LBD and Parkinson’s disease may be linked to the same underlying abnormalities in the brain processing of alpha-synuclein. LBD and Parkinson’s disease dementia are similar except for the order in which the symptoms develop.

The timing of when symptoms occur may determine which diagnosis a person receives. If thinking problems appear within a year of movement difficulties, doctors diagnose Lewy body dementia. If dementia develops a year or more after Parkinson’s disease symptoms begin, doctors diagnose Parkinson’s disease dementia.

Common symptoms of Parkinsons with dementia include:

Sofly spoken muffled speech

Misnaming objects

Trouble understanding complex sentences

Difficulty focusing

Memory loss

Confusion

Moodiness

Change in appetite

Delusions

Change in energy level

Sleep disturbances ( vivid dreams)

Vision issues like difficulty spotting objects in a cluttered space.

Trouble planning and staying on task

Language challenges

This list may be alarming at first. Remember that changes occur over time. Always remember that the person is not acting out; however, the disease is. Here are ideas to assist in caring for someone with these behaviors

establish and follow a routine when possible
being extra comforting and patient
limiting distractions and avoid crowds
try to maintain a consistent sleep schedule
declutter your living space
learn all you can about Parkinsons dementia
Join a support group

Keep a journal of behavior changes, dels]usions, nighttime disturbances, etc. This will help you when speaking with physicians. Log all medication changes as well.

I know a family dealing with this dementia and have watched them make adjustments. Their family members have had police show up in the night because he called and reported someone had broken into their home. Now, he has taken to roaming around partially clothed. Recently he heard my voice as someone was listening to me speak on a recording. He told them that sounded like someone I know. He then tried to remember my name but could only come up with my husband’s name. He referred to me as his person.

Be calm. Be patient. Allow them to try to communicate and try to interpret what they are trying to say. As far as the police calls, most law enforcement departments now have a data base that contains information you provide alerting them that a family member at your address has dementia. This can allow them to have a mental health officer available. For the other issue, just close your blinds.

Take a deep breath. You can do this. When things become difficult, step away for a few minutes and try a new approach. If you read through previous posts you will find other helpful information. Many of the behaviors and symptoms are similar with all forms of dementia.

Word for Today

Psalm 31:24

Be strong and take heart, all you who hope in the Lord.

Song for Today

Prayer for Today

Dear God,

Thank you for being faithful. There are days I feel like the battle will not end. On those days that I struggle to stand on hope, hold me as I wait on you to move on my behalf. You are the only thing I have that is always true. Help me to be able to say “It is well with my soul”.

Amen

Lewy Body Is Different

Alzheimer’s disease has many early signs such as memory issues. The mental cognition has a slow decline over time. Lewy Body is not so predictable. I experienced this first hand. My mother had Alzheimer’s disease. We thought that my mother-in-law had vascular dementia and no one tested for Lewy Body disease. As I educate myself about LBD, I tend to lean heavily to the thought that she had it.

Lewy Body Disease (LBD) is a progressive briain disorder. Alpha-synuclein is a protein found in the brain. When these clump together it is known as Lewy bodies. Cells normal function is interrupted resulting in cognitive decline, hallucinations, delusions, sleep disturbances and motor issues.

I saw signs of cognitive issues but they were vastly different than Alzheimer’s. Her memory was pretty much intact. She would appear perfectly normal one day and confused the next. Her essential tremors ramped up. Most of the families members did not see symptoms in the early stage.

She would insist that someone had told her they would take her shopping and be upset when they did not show up. She would attempt to bake a cake and leave the flour out. She developed paranoia. She loved football and watching her favorite team. She would cheer over a play and then cheer again over the replay or go to the kitchen and never return to finish watching the game.

Then when her spouse passed away things escalated quickly. A huge delusion caused us to have to move her to an assisted living facility. Once there she often called to give me detailed accounts of visitors who were never there. Her hallucinations were described in full living color. She would be very convincing in her stories.

We experienced capgas syndrome. This is a psychiatric disorder where she held a delusion that we had been replaced with imposters. We would go visit and she would tell us who we were supposed to be but we were not real. We were imposters who looked, acted and sounded like us. Try explaining that one! Some day the chef or nurse were imposters as well.

A bouquet of flowers brought her joy. One day a lion was in the flowers. The next day monkeys were in the flowers. When I went to visit, a dancing lady was in the flowers. Before we all got stressed out, I decided the flowers were wilting and needed to be disposed of. A nurse smiled as I deposited them into the trash. Apparently she had be informed of the busy bouquet.

Falls became more common.

She became less social.

The whole experience was very different than the one with my mom. I truly wish I had known more while my mother-in- law was alive. We did the best we could.

I highly recommend a book if you suspect your loved one may have LBD.

Living with Lewy’s by AmyJ Throop and Gerald S Throop. It opened my eyes to many things. Hopefully, you can get information that helps you. Don’t give up when seeking a physician that can give you a diagnosis other than mild cognitive decline.

Don’t give up. You are learning and improving as a caregiver each day.

Word for Today

Proverbs 2:6

For the Lord grants wisdom! From his mouth come knowledge and understanding.

Song for Today

Prayer for Today

Dear God,

I thank you that I can rest in you on the days that are hard. Give me wisdom as I help my loved one struggling with reality. Give me courage. Give me strength to trust you.

Amen

Physical Touch Matters

Tactile has to do with the sense of touch. Dipping your hand into cool water is tranquil. Think of your favorite memories involving touch. I have many. One was walking barefoot through a freshly tilled field and digging my toes into the warm soft dirt. Another was sitting on the sofa and rubbing my grandfather’s head. He loved this and would often request it. I loved him too much to ever say I would rather be outside playing. That same love connected us as he lay in a hospital bed and made the same request. I pulled my chair close and wondered how many times will I have left to express my love in his love language.

Alzheimer’s disease often robs people of their fine motor skills. Activities they once enjoyed become a struggle. Opt to put together puzzle with larger pieces rather than small ones. I was able to find puzzles adults can enjoy with a smaller number of pieces and larger size. I avoided puzzles labeled for dementia. The person may still be able to read and feel ashamed or embarrassed. Be sensitive to this please.

Ask them to assist you and assign them simple task that don’t really matter. Let them fold towels and washcloths. Let them match socks. If they get it wrong no harm is done. They still feel needed and productive. Just consider what they can do safely, and ask them to help.

In prepping food let them tear the lettuce for a salad. You chop the veggies and let them arrange them in a salad or platter.

When presenting food, peel their orange before serving it. Just think of what you would serve a toddler. This can be done in a way that preserves their dignity. Prepare your own snack to look like what you serve them.

My mom loved pretty clothes. She struggled with buttons and zippers in the early stages. This ususally happens later for most people. It depends where plaque forms in the brain. We moved to pull on tops and pants without zippers. That was quite an adjustment for her. Thankfully, the local mall had a store that carried a line of beautiful clothing the she liked and it laundered easily. Then one day we had to replace the beautiful clothing with simple gowns that made life easier for caregivers who had to bath and change her.

When someone has dementia they may forget what to do with a hairbrush, comb or toothbrush. This is when you need to offer tactile cues. Please visit the following link to see this demonstrated. https://www.dementiacarecentral.com/video/hand_under_hand/#:~:text=This%20video%20clip%20shows%20how%20to%20use%20tactile,are%20also%20important%20%28time%3A%201%20minute%2030%20seconds%29.

Another thing you may face is how to handle inappropiate touchs. I was volunteering one day and had a new necklace on. It was a large flower and I was so grateful I had it on. A gentleman approached me with his hands extended toward my chest. I quickly took his hands, moved them to my necklace and asked if he liked it. The nurse who witnessed this action hid a smile but her eyes were dancing. Later she complimented me on my quick thinking.

Physical touch can be accomplished with ease once you observe and find what is comfortable for the person with dementia. I often take hand lotion with me on visits. No one refuses a massage of their hands and fingers as I talk quietly with them and rub the lotion in. Often a hug is appreciated. Hug from the side when possible. Ask if they would like a hug. Remember the above story and be careful! Many times a person with dementia and their caregiver need physical touch to remind them they they are loved.

Ladies love manicures. You never know how much your kindness means.

Touch sensitivity can be lowered. This can make it hard to sense pain or temperature, which can pose potential safety risks. They may not realize how hot or cold an item is. They may not feel pain from a small cut. Pay attention to their skin.

I know a man who refused to shower. His daughter questioned him about why he wasn’t taking a shower. He finally admitted that he could not adjust the water temperature right. The simple solution was for him to ask for assistance in turning the shower on. After showering he could step out and ask for assistance turning the water off. He could have been confused about how to control the shower handles or he could be sensing the water temperature differently than he had before. Sometimes it takes a little investigative work to discover the real problem. Others may refuse to shower because the water hitting their skin feels different.

I cannot discuss touch without mentioning how important spiritual touch is both to the caregiver and the person with dementia. Turning to God is a choice the caregiver makes. Reminding the person with dementia that God loves them is so important. Listen to music, read the Bible together. Pray together. Allow friends and family to be included in these activities.