Storm Preperations Have Begun

When you live in the south the word snow bring excitement. The word ice bring panic. We are hearing both words and live on the dividing line. Ice means downed power lines and trees are abundant on the farm and the roads leading to our farm. We are heeding the warnings and preparing for the developing storm.

Laundry is being processed, soups are being cooked and bread is being baked in case of a power outage. Thankfully, we have gas logs and solar backup batteries ready. Outside we are building a sheep shelter, moving the grill to a sheltered area, placing hay near the sheep and making sure the dogs have a safe shelter. These ice storms are rare but dangerous.

When you find out a loved one has Alzheimer’s disease, this is a storm warning. You should begin preparing yourself and your home before the storm hits. This may sound absurd considering absurd mean wildly unreasonable, and illogical. Your heart will not allow you to face the harsh reality that life as you have known it is about to be shaken and rocked in ways you can not imagine.

It would be unkind and uncaring for me to not make you aware of what the future may hold. Just as I am preparing for the snow and ice storm heading my direction, I planned for changes as my mom began living with Alzheimer’s disease. My dad was her primary caregiver, but should he have passed away first, I was next in line. This meant researching in home caregivers, assisted living facilities and physicians should I have to relocate mom to me. I lived with plans a, b and c in place. A suitcase was always packed and ready to go if dad called for help.

I traveled back and forth from my home to theirs for several years. These trips allowed me to be there for physician appointments and to evaluate how the disease was progressing. They also gave my dad a break. Each trip waas heartbreaking on the drive home. I would be making mental notes on what I had experienced.

Eventually, we had to hire in home help. Then move to a memory care assisted living. Dad began to lose cognitive judgment and executive order skills. We moved mom to a skilled care facilty. In the last few months both parents moved to nearby facilities near me. Dad could walk from his assisted living to mom’s skilled care through a covered and enclosed walkway. I could be there as often as possible, which was usually about 5 times a week.

All of the decisions about moves and care plans had been in place before we needed them. We were on waiting lists knowing we could say no if we weren’t ready yet.

To be able to make these decisions, you have to research, observe changes, ask questions. Seek out an elder care lawyer for wills, power of attorney, trust, etc. Have hippa forms signed, make decisions on DNR orders, decide how to handle feeding tube decisions. Then gather family and friends to be backup support when needed. Trust me on this one. You will need support!

We started this blog discussing our stormy weather ahead. My husband and our neighbor are working together to prep for this storm. Life has taught us to accept and offer help. Caregiving has taught us that the load is lighter when we share it.

The word Alzheimer’s is one you will hear someday in your family or friend group.

Over 7 million Americans are currently living with Alzheimer’s disease, and this number is

projected to rise to nearly 13 million by 2050.

Now is the time to prepare for hearing those words. Instead of living in fear, live prepared. Find a seminar or support group and educate yourself.

Word for Today

Psalm 4:8

In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety.

Song for Today

Prayer for Today

Dear God,

Life is full of storms that we must face. I trust in you to guide my steps as I prepare to face the storms. Give me your peace as th storm rages. Give me hope that you are in the storm with me.

Amen

Most Critical Mistakes I Made as a Caregiver

Caregiving is usually full of lessons to learn the hard way. Each and every caregiver I know can share their own stories of what they learned. I will share a few today from my own experience.

Communication is vital even when others do not understand or agree. I should have talked to my mom about her concerns and fears early on. My heart and emotions were reeling and I was afraid to. She had always been responsible and hid her own emotions well. This made it hard to know how she was processing information. Knowing how important it is to show empathy, I should have taken her hand and acknowleged that I was scared and sad too. Even if she did not vocalize her feelings, I could have let her know I was with her and understood.

I would have tried harder to help my dad understand how his own behavior would have to change. When you care for someone with Alzheimer’s disease what works one day may not work the next. We cannot argue and try to reason with them. Their reality and ours may be very different, but we have to move into theirs to be effective.

I would understand the behavior changes due to pain and fight placing her in a geri-psych unit without treating the pain first. We had a terrible experience when we placed mom in a memory care unit. They called about four days later and told me she was out of control and I had to take her to the hospital. She was angry anad aggressive which was totally not the person I knew.

It was late in the evening and the nurse was waiting on us. They took her straight into the emergency exam room. I called for someone to come and take dad home. When I came back into the room, they were testing for a uti infection. It was positive. The nurse lifted my mom’s top and saw red. I watched in horror as they removed her bra and she cried in pain. A nasty yeast infection was under her breast. The nurse saw my shock and asked where mom had been living. I told her and saw her spring into action to calm mom and immediately bring a physician in. I would not want to have been the person from the facility that answered the call when I heard his reprimanding.

I allowed mom to be admitted into the geri-psych unit because that is what they suggested. Today, I would have asked for a regular room for a couple of days to treat the uti and yeast infection. I would have stayed with her 24/7 and evaluated the anger and aggression. Then agreed to the other if behavior was still an issue. This was a hard lesson learned!

These units are necessary. The medications used do not always work. They try one and then another. This process sped the loss of skills and my mom never regained them. She had walked in and was talking well. We came out in a wheelchair and speaking fewer words. I knew she was overmedicated and began talking to her physician. He and I together decided to move mom to a skilled care facility where their medical director could ease her off of some of the meds.

These lessons are shared not to scare you, but to help you understand it is not easy to always know what to do. My mom would have lost those skills anyway as the disease progressed.

Caregiver stress is real. My dad was showing signs of poor judgment and decision making as mom’s disease progressed. I should have monitored finances earlier than I did. Someone not in the family had been talking dad out of quite a bit of money. He had always been a generous and kind man, so she took advantage of that. It was elder abuse. My brother and I confronted dad with the bank records and ended the situation thankfully.

We actually dealt with one parent with Alzheimer’s disease, one with mini strokes, one with cancer and another with what we thought was vascular dementia. When my mother-in-law was diagnosed with vascular dementia, I accepted that. As time passed it, I questioned the diagnosis and her physician had moved. Strange and stranger behaviors were happening. There were days that she came across as her normal self and others full of delusions and hallucinations. After her death, I found that one of the most unusual behaviors had a name, Capgas syndrone.

It is a rare psychological condition where an individual believes that a loved one has been replaced by an identical imposter. She would tell us her husband had been there. If someone reminded her that he was deceased, she would say “you know what I mean, it was the other him”. One day during a visit, she insisted that we were not the real us. We looked, sounded and acted like the real us but we were not the real us.

All the the above led me to believe that she actucally had Lewy Bodies which is often misdiagnosed. I would have tried harder to find her true diagnosis. It would not have changed how we cared for her, but it would have helped other family members understand what she was facing and helped them accept what we were dealing with.

My mistakes allowed me to learn to observe more, be patient, be diligent and remain humble. Trusting God to strength me and give me wisdom and grace got me through.

Word for Today

Philippians 2:14-16 (New International Version

Do everything without grumbling or arguing, so that you may become blameless and pure, “children of God without fault in a warped and crooked generation.” Then you will shine among them like stars in the sky as you hold firmly to the word of life. And then I will be able to boast on the day of Christ that I did not run or labor in vain.

Song for Today

Prayer for Today

Dear Heavenly Father,

Thank you for your amazing love and grace. You are where I run when I feel regret over my mistakes. You hold me in your arms and comfort me when I walk in pain. You pick me up and steady me to keep going.

Amen

It has been 10 years

Today I dedicate this post to my beautiful mom.

Dear Momma,

If you could see my heart, you would see little stitches sewn by God as he heals the gaping hole you left when you passed ten years ago. Every ounce of me wanted to take the horrible disease called Alzheimer’s from you. I coudn’t, so I decided to learn everything I could about how to help you and make you feel loved and cared for.

Little things remind me of you all the time. When I received red roses for my anniversary this month, I remembered how much you enjoyed them when Dad bought them for you. When I savor grapes, I remember how much you loved them. Wearing pieces of your jewelry makes me feel joy. An unfinished jigsaw puzzle sits on my dining room table. Actually, it is your dining room table we used to sit at together.

Don’t feel bad about me taking care of you. Those years are treasures for me. I saw little glimpses of all that you are. The inhibitions disappeared and I saw a fun woman giggling and humming. It was a side of you that you had hidden away to be a responsible and mature adult.

I watched a woman who was secretly called the sugar police by her sisters devour cookies, ice cream and desserts. It felt freeing to see you were more normal than we had thought.

I learned to love my family deeply from you. I learned to make sacrifices for others from you. I learned to clean from you, but it didn’t make me a total neat freak like you were.

You took phone calls at home from confused older customers at the bank. You gave children a ride to church. You rocked babies in the church nursery. You shared food from your garden. You would go to the nursing home to feed my grandfather when he wouldn’t eat for anyone else. You drove through the night to be there for my toddler while I was in the hospital with her baby brother. You even picked cotton by hand to buy fabric for my new clothes when I started to school. The wonderful memories of you are flooding over me now.

Your family has grown a bit since you were here. With my brother having six children, we have had a few weddings and a few more babies. Liz wore your ring at her wedding. She asked for a photo of you and dad to display. I chose a photo without noticing that you had that very ring on. We both teared up when we realized it. You have two amazing great-grandsons now. What a reunion we will have one day!

It was an incredible honor to walk on one side and have dad on the other as we walked you toward your final home. You and dad made me a better person. I love you so deeply and am looking forward to joining you in heaven when my life here is over. Give dad a hug and ask him to give you one for me.

Love,

Your daughter

My letter was how I chose to journal today. Journaling is one of the many ways I learned to cope. Realizing that being in the moment with my mom where she was in her mind at the time made taking care of her much easier. The years spent taking care of her long distance and in her home were difficult. Many lessons were learned about God’s incredible grace and strength. Moving mom to skilled care was heartwrenching, but dad visited daily and I did once she moved closer to me during her final days.

I cannot count the tears that rolling down my cheeks as a caregiver. I shed tears writing this post. Comfort was always found in knowing that God saw those tears. When Jesus came to his friend Lazarus’s tomb, he wept. If Jesus wept, then it is perfectly fine for us to weep as well.

You will find your own ways to cope. You will grow and stretch. In the end, you will be stronger than you ever thought possible. Keep giving it your best my friends!

Word for Today

honor your father and mother, and love your neighbor as yourself.

Matthew 19:19

Song for Today

Prayer for Today

Dear God,

I praise you for the time I had on earth with my wonderful mom. Thank you for walking with me each step of the way. You held me when I was broken. You comforted me when I was scared. You gave me strength to do things I never knew I was capable of doing.

I ask today that you do the same for anyone reading this. Pour unexpected blessings into their life. Send friends to share the load they carry. Give them peace at night to rest.

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

Surviving the Christmas Season After A Loss

Several of the caregivers I know have said their final goodbye to a parent, spouse or close friend or family member this past year. The raw pain and grief lingers as Christmas nears. Pulling out decor and listening to favorite music can trigger heartache and tears. It is important to allow your grief to surface in those moments. After the tears settle, you need to leave room to reflect on wonderful memories. Choosing to reflect on the joys and the true meaning of Christmas can bring healing.

Through the years change occurs. You adjust. I have gone from decorating my tree with many different kinds of ornaments. We used clear glass ornaments and stuffed little pieces of paper listing our blessings each year into them and then painted the year on them. This was fun to read and restuff each year while the children lived at home. Then the ornaments had to become child proofed as grandchildren arrived. Now, there are no little children or indoor pets to be careful about when decorating.

In retirement holidays are quieter. An afternoon spent watching sheep and their guardian dogs with a hot cup of coffee is peaceful. We live very close to a Christmas tree farm and watch families drive by with their trees tied on top. Each season of life brings its own blessings.

In the past my mom and dad loved celebrating Christmas with family and friends. All of the family looked forward to seeing their home with several trees decorated, presents and tins full of cookies and candies waiting to be found.

The last Christmas with my mom was 10 years ago. I knew she was beginning to shut down, but I had no idea she would leave us 2 weeks later. The last Christmas with my dad was interrupted by a surgery for me 4 days before Christmas. I was unable to be with him that year and he was gone as well before the next Christmas.

In 2021 we lost my father-in-law in October. In 2022 we sat by my mother-in-laws side and said goodby on December 22. With children and grandchildren miles away, we now spend Christmas alone. It is very challenging to make adjustments. We choose to focus on God’s gift to us rather than drown in the sorrow of missing the loud family gathering.

Hallmark movies and commercials would have us believe that the rest of the world is perfect. No one is perfect. No family is perfect. Many have suffered losses and feel holes in their hearts during the holidays. You are not alone if you struggle to hold back tears and if you miss the Christmas seasons from your past.

I suggest you take time to share a cup of tea or coffee with a friend. Go ahead and decorate if you wish. Keep it simple if you want. Read the Christmas story in the Bible. Sit with God in the quiet and ponder with amazement the greatest gift we have been given. Choose a meaningful way to celebrate.

Our choice this year is to spend Christmas morning with residents in a memory care assisted living facility. We will read the Christmas story, sing carols and fun Christmas songs. Ruldolph reindeer noses, jingle bell necklaces and soft stuffed snowballs will be enjoyed by all. Then we will come home, turn the tree lights on and relax. The rest of the week is open to many options with extended family and friends.

Be creative in how you celebrate. Thinking outside of the box you always been in may just be delightful. Giving joy to others will bring joy back to you.

Word for Today

An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. Luke 2:9-11

Song for Today

Pray for Today

Dear God,

Forgive me when I forget the true meaning of Christmas. My heart may feel sad due to the loss of loved ones, but I know it is a temporary goodbye because of the wonderful gift of Christ to save each of us. Help me to allow that joy and comfort to get me through tough days. I want to dwell in your presence through this beautiful season focusing on others rather than myself.

Amen

Laughter Lightens the Load

Caregiving comes with tears. Before you drown in those tears, take a few minutes to reflect on the times you had to laugh.

Have you ever received a phone call from a parent telling you that their phone is not working?

Dad “I just called to tell you my phone isn’t working”

Me “Whose phone are you using now?”

Dad “Mine.”

A caregiver called one day to tell me my mom was having a yard sale. I asked how she knew this and was informed that mom had been throwing things into a closet all week for the sale. I asked about which closet and realized it was not a closet. It was a rear staircase that led to their garage. When I checked it, the entire staircase was full!

A friend left a large cup in her car with her dad. Later that day when she retrieved the cup, it was full of urine. Her dad had used it while she ran into a business. When asked about it, he informed her that a strange man hopped into the car, used her cup and left.

Another caregiver I know left his wife in the kitchen. When he returned he entered an “I Love Lucy” episode. She had poured liquid detergent into the dishwasher and turned it own. Bubbles were everywhere.

Some dementia patients have a lingered guilty conscience they have to clear. An 86 year old woman pulled me aside one day and insisted she had something she had to tell me. She led me to a corner and lowered her voice. She once again insisted I had to hear this. I calmly told her she could tell me. She leaned in and lowered her voice. I then listened as she informed me that she had a thing going on with my husband. It was very difficult to control my laughter as I thanked her for telling me. I approached the facility director with this information. She laughed and said the woman had a thing with her husband and most of the employees’s husbands.

Sometimes you can’t truly laugh until later, but you will have things to amuse you on this journey.

Humor is a gift. God gave us emotions and reassured us that they will change…

a time to weep and a time to laugh,
a time to mourn and a time to dance,

I wept. I laughed. I mourned and am still learning to dance.

A new rhythm is emerging as I assist others on their journey of caregiving. I still weep when they weep. I still laugh when they are able to laugh. I wrap my arms around them when they mourn. I am now able to walk away and focus on looking forward and making memories in the moment during our retirement years. Maybe the days on our farm playing with dogs and tending sheep will bring joyful dancing.

Just remember the emotional ups and downs are temporary. Don’t hold back the emotions. They may explode at the wrong time and place if you don’t release them when you can. Step away when angry for a few moments to regroup. Laugh privately at the funny moments and with a person when they see the humor too. Never make them feel as if you are laughing at them.

Just this morning a friend who is a caregiver sent me a funny text that had brightened her day. I was thankful that she is taking time to do this for herself.

Go ahead and smile as you read the quotes below.

“My job has made me a pro at finding things I didn’t lose.”

“Leftovers? I prefer to call them ‘meal prep for the next week’.”

“I argued with Mom for a half-hour to wear matching socks only to discover I went shopping with my shirt inside out.“

All of you could add your own moments of humor. Go ahead and comment me with yours so I can laugh with you.

Word for Today

Psalm 126:2

Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, “The Lord has done great things for them.”

Song for Today

Prayer for Today

Dear God,

I am so thankful that you understand the many emotions that I am experiencing as a caregiver. Sometimes I struggle with these emotions but I know you stablize me and encourage me through all of them. Help me to find my joy in you.

Amen

I’ve Got That JOY JOY JOY down in my heart!

Enjoyment can be defined as the process of taking pleasure. I have pondered this a bit while being a young mother, a wife, a caregiver and then an older person who is no longer needed as a caregiver. During the stages of life, I have taken pleasure in many things. The circumstances around me have forced me to find new ways to find enjoyment.

If you are in a season of caregiving, you may have days you longed for something to enjoy. Maybe you have had to give up golf, tennis, travel or other activities. This is when you have to find new things to do together that both of you enjoy. Perhaps watching videos about travel is something you can enjoy. We do this because our budget as retirees limits us on travel plans. We have learned to enjoy and explore local places. Take a drive this fall and enjoy the color and cooler air. An apple orchard is always great for an apple cider. If you and the one you care for are mobile, rake leaves. Make sure to snap pics to record your memories.

My mom loved working crossword puzzles. We went to simpler puzzles with larger pieces when she could no longer work her old ones. Sitting there was not enjoyable at first. Seeing how content she was made just being with her enjoyable. When volunteering at a memory care unit, I found just watching the beautiful faces light up when we played games made it very enjoyable for me. It reminded me of watching a child learn to read. The sparkle in their eyes warms your heart.

You will make sacrifices during the entire time you are a caregiver. Keep looking and you will find ways to find joy in new things. After my mom passed away, my dad was lonely. He had given up a lot and was showing signs of cognitive decline. He found great enjoyment watching Alabama Girl’s softball and Alabama football. To be with dad, I would drive over and settle in to watch softball games and tournaments. Eventually, I got interested in the games as well.

The true source of my joy is God.

Romans 15:13

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Some days were extremely difficult as a caregiver and losing my parents. My husband and I did what we could for our parents. There is a scripture that I believe is true for my life.

“Honor your father and mother”—which is the first commandment with a promise— “so that it may go well with you and that you may enjoy long life on the earth.” Ephesians 6:2-4

We are now in a new season as some of you are. You honored the ones in your life who needed you. Now it is time to rediscover things on this earth that you can enjoy.

I am enjoying the farm life. We just added sheep and these beautiful livestock guardian dogs to our animals. We now schedule our days around feeding animals, gathering eggs, and grinding wheat to bake bread. It is quite a change from living in a metro area for over twenty years.

It is a wonderful change. As a child I longed to live in a subdivision like my friends did. Now,I am very content with the sounds of nature such as waking up to the rooster crowing and birds singing, growing our own food, and breathing in fresh air. It has plenty of adventure as well. In the last week I have been shocked by a hot wired fence, searched for a lost ewe who fell into a hole and herded sheep to a new area of the pasture. I had joked that as youth pastors we had herded teens. Sheep had to be easier… not true!

I share today to reassure you that new sources of joy can be found.

Helpful hint for October:

Halloween can be very nerve wracking for someone with dementia. Do not make the mistake of thinking someone loves children so they will love Halloween. The disturbance of the constant doorbell ringing will be startling. Seeing masked and costumed people can be frightening. Try to make plans for a quiet and sheltered evening.

I once advised a woman that taking her mother to a party at Chuck E Cheese for her great grandchildren was not a good idea. She ignored me and did it anyway. Her mother was frantic when they returned her to her assisted living facility. She even tried to jump out of a moving car. The poor woman was way too over stimulated and terrified by the characters and noise. Please realize that a person with dementia cannot process loud and active situations like you do.

Word for Today

Psalm 16:11

You make known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.

Song for Today

Prayer for Today

Dear God,

I thank you that you can give me contentment in whatever situation I find myself in. Sometimes it is a struggle as you know. I want to find my joy in you and trust you to open my eyes to the things you have given me to enjoy. Forgive me when I long for things I have had to sacrifice to be a caregiver.

I will praise you because the joy of the Lord is my strength.

Amen

Caregiver Anger

Anger is real. How you react is what matters the most. It is not always a person that makes you angry. It can be the disease itself. It can be insurance companies, Medicare, Medicaid or the medical community. You can be angry at the person you care for. You can be angry with friends and family that don’t help carry the load. You can be angry with yourself because you feel like a lousy caregiver.

Anger is normal and can be expected when facing circumstances that are out of your control. You may be as fearful as you are angry. It would be a good idea to write a list of who and what you are angry about. No one has to see this list, however, you may feel better expressing your angry and asking yourself if any of the people or things you are angry about can be changed.

If there is a way to safely address this list, in a calm manner talk with who you need to. If there is not a way to change circumstances, ask God to help you accept this. Ask yourself what triggered this episode of anger and what condition you were in when it happened.

Physical and mental fatigue are very likely culprits when you are easily angered. Getting enough sleep may mean napping when the one you take care of naps. I can remember being pregnant with my second child. I had an active one year old. When she took a nap, I napped with her so I could be patient and loving instead of grumpy and tired.

Eat healthy. Keep fruit and vegetables handy for you and the one you care for to grab when hungry. Use the crockpot or instant pot to prepare meals on busy days.

Go for a walk. Take time to enjoy nature.

Listen to your favorite music.

Pray.

Step away from a stressful situation and simply breathe a few slow breaths.

Address the fears you have. This may mean preparing for the what if moments before they happen. I knew my mother had Alzheimer’s and it was prgressive and eventually fatal. When my dad was unable to take care of her, I researched memory care assisted living facilities and put her name on the waiting list of those I liked. I did this in their city and in the city I lived in. This was because I knew that should dad pass away, I would have to move mom to me.

Financial and legal planning took place early on in my family. My brother and I were involved together with our parents. We never had to worry about them losing their home. We understood their medical directives. Deal with these items now, not later.

Learn to appreciate help when you can get it. Keeping a grateful attitude is better than simmering in resentment when help is not given.

If there is any pain in your past relationship with the one you care for, please find a way to forgive when you can no longer have a meaninful conversation with them. Forgiveness opens room in your heart for love, compassion and kindness. Forgive siblings or children who don’t step up to the plate and assist you. Focus on making the most of the time you have because you did step up to the plate.

Lastly, forgive yourself. This is the toughest job you will ever encounter. There is a learning curve and you will get better each day. When fear and anger try to overshadow the goodness, try to take the thoughts captive before they grow out of control. Trust God to give you peace.

Word for Today

Ephesians 4:26

“In your anger do not sin”: Do not let the sun go down while you are still angry,

Song for Today

Prayer for Today

God,

Thank you for giving me emotions. Sometimes I get frustrated and allow them to overwhelm me. Help me to stop and reflect on how my actions could hurt others. Help me to trust you to handle the people and circumstances that I cannot control. Guide me to take peaceful actions rather than lash out. Heal my heart from hurts and fears so that I can love the way I should.

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