Make the Most of Your Time

Alzheimer’s disease erases many memories for the person living with the disease. Memories for family members will live on and be cherished. We have technology now to save voices, laughter, stories and visuals of our family and friends. If you have a family member in the early stages of dementia please use that technology. I left messages on my phone for years just to hear my parents voices.

Even if you do not have Alzheimer’s in your family now, you may someday. Listening to the spousal caregivers talk about what they miss the most is causing me to be more deliberate about making and saving memories that I and my husband can hang on to should one of us be left alone.

I changed phones and lost a video that I treasured. My mom was dancing and laughing with her youngest grandson. Prior to having Alzheimer’s she would never have acted this silly. We all sat watching in awe. We were in awe over the fact that she was truly happy and in the moment with him. I was pondering about how much longer we would be able to hear her laugh.

Years later I watched that same grandson see my dad wiggle his ears. Every grandchild, niece and nephew loved watching dad do this little trick. Dad had been so busy taking care of mom that he hadn’t thought to show this youngest grandchild his ear wiggling. My nephew sat trying his best to master this for himself while dad smiled. Dad passed away one week later.

Don’t put off taking small trips, watching sunsets, sharing hugs and expressing love to each other. Make the most of your time. Life moves at a fast pace and it is way to easy to get caught up in the busyness. My heart hurts when a senior citizen is the sole caregiver for their spouse. They look at me and tell me they cannot ask their children to help. They have their own lives and are busy.

Allow me to speak for these caregivers. Find the time to honor your parents. You are robbing yourself of something you can never get back. You can find time to meet a friend for coffee or attend a sporting event. You can find time for social media. You can find time to check on mom and dad.

“Family is not an important thing. It’s everything.” —Michael J. Fox

A huge excuse we often hear is “It’s Complicated”. When someone has Alzheimer’s their life and their caregiver’s life are complicated. Family can find a way to work through all of the complications and help each other survive. Asking God to make a way for you to do life together is a great first start.

Personally, there was a lot of travel and expense involoved during our time as caregivers. I gave up a job. God has abundantly blessed us along the way. It was an honor to be with my parents in their final days.

Caregivers, speak up. Give your children an opportunity to find ways they can help. Give them opportunities to make memories while they can.

Word for Today

1 John 3:18

Dear children, let us not love with words or speech but with actions and in truth.

Song for Today

This song refers to when we allow walls to form between us and God.

Prayer for Today

Dear God,

We need you to tear down walls and heal our hearts so that we can share life with those in our family. Show us how to build bridges instead of walls. Draw us closer to each other as we draw closer to you. Teach us to find balance in this life. Give us moments of genuine love as we show compassion and grace to those around us.

Amen

Alzheimer’s Language

I am far from being bilingual. This makes it difficult when I am around someone who’s native language is not the same as mine. Caregiving for someone with Alzheimer’ disease has forced me to face the stark reality that I had no choice but to learn to speak and understand a language that my parents now spoke. One parent lived in a new territory that I refer to as Alzheimer’s World. My other parent was residing in a territory I will call Mild Cognitive Decline World. To travel to their world, I sometimes felt like the one who was confused and lost. The most challenging part was having two parents living in different worlds at once. While neither was fun and exciting like Disney World, both provided excessive amount of adventure.

Once upon a time, I lived in “Normal World” with my parents. They were great parents and did their best to provide a nourishing and loving environment for my brother and I. They were active in their church, jobs, Lions club, Band Boosters and Atheletic Boosters. Steady and dependable are words that describe them the best. No family is perfect, but we grew up thinking ours was close. My brother and I were busy with our own families after becoming adults. Life was good.

Skip ahead several years and we began to see cracks in the armor of our parents. This happens as we become adults. This was different though. Slight personality changes were obvious in our mom. Dad was doing a wonderful job of hiding this from us in the beginning. Eventually, it could be hidden no longer. We were faced with seeing that “Happily Ever After” was not going to be the ending of their story.

Dad needed help navigating the progression of Mom’s Alzheimer’s. Stress was mounting as he floundered. He was giving a major effort to care for her. This once young athletic guy with no sisters even learned how to apply her makeup and assist with her hair. He cooked, cleaned and gave it his best.

That is when my quest to learn all I could about this disease began. I bought books, searched online and found a caregivers support group. In a sense immersing myself in this was a boot camp. Much was learned quickly. I want to share a brief amount of helpful information to help you learn Alzheimer’s language.

Rules for the Caregiver

Do not argue.
Do not try to talk them out of anything.
Do not try to make them remember.
Enter their reality.
Do not try to reason with them.
Stay calm

The disease is in control and not the person you are caring for. Try to separate the two.

Speak slowly and give them time to process short sentences
Rather than give an order, ask for a favor
Monitor your own emotional state
Redirect and distract with music and other activities such as snacks or taking a walk
Release your expectations of them to be who they were in the past.
Remember that their new reality is just as real to them as yours is to you

Facial expressions and your tone of voice speak volumes!

When dad began to have unexplained falls I suspected mini strokes. While he was mom’s primary care giver, he was beginning to show a loss of judgement. I would observe and make suggestions. Dad would get upset and walk away from conversations. I learned to let it go and wait. He would call me a couple of day’s later with a wonderful idea of how to handle a situation. I would listen as he told me the exact idea I had given him. I would then let him know that I thought it was a wonderful idea. This preserved his dignity and it worked. One day he ws mad and informed me that my brother and I were trying to control his life so were no longer his power of attorney. The next day he called wanting me to come and explain insurance papers to him. I told him I was no longer his power of attorney. He replied, “Oh, yes you are”.

Learning the best way to communicate with him was to allow him to think everything was his idea. You will learn to speak a language that they understand through trial and error. It can occur though if you are persistant.

You can do this! God will be your constant help when you feel anxious, sad or ill equipped.

Word for Today

Colossians 3:12

Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.

Song for Today

Prayer for Today

God,

I praise you for the love and kindness you show to me. Give me the ability to share that kindness as I learn to communicate with others, especially those with dementia. Help me to listen more and speak to them in a way they understand. My greater desire is for you to continue to speak to their hearts and souls through their confusion.

Amen

Humorous Moments Lighten the Load

Sometimes stress can get really heavy when you are a caregiver!

We can learn to see the humor in things. You never laugh at a person. You laugh with them or at a later time with friends or family who understand the difficulties you face.

When you are awakened in the middle of the night and asked “What are you doing?”. It doesn’t seem funny. Your fuzziness clears as your dad wants to know if you had decided to take a nap too. He is very cheerful and explains that he took a nap, showered and was headed to the dining room for dinner. I told him to go open his blinds and look outside. He replied,”oh my it is so dark”. I then told him his clock might say 3:30, but it is actually in the morning, not the afternoon. I then told him to go back to sleep for a bit. He informed me that he was wide awake.

I hung up the phone and called the nurse station at his assisted living facility and requested sometime pay dad a visit and encourage him to try to go back to sleep. I then complained to my husband and tried to go back to sleep myself. After a few more hours of sleep I could smile about the whole thing.

My dad had become urniary incontinent. He had always been a sharp dresser and cared about how he looked. I struggled with how to handle this situation while allowing him to keep his dignity. One Sunday he went to the bathroom and returned to the service. He was wet and he smelled. I tried my best to get him to the car, but dad was very talkative and an extreme people person. I know that smelled him.

My husband asked to handle the situation. He took my dad aside and commented that dad had always looked nice. He mentioned that perhaps dad didn’t make it to the restroom fast enough sometimes. He suggested that if dad would wear depends he might be able to hide this from everyone. People would not know and dad might not smell of urine. Dad agreed. They bought depends.

The next week I got a call that surprised me. All of my apprehesion about talking to dad was for naught. Dad had walked into my aunt’s home and proudly announced that he was wearing depends and they were wonderful. A sigh of relief crossed my face. After hanging up the phone I had a good laugh.

The next story actually involves a phone call. I got a call. The id let me know it was from my dad’s phone. He immediately let me know that his phone was not working. I asked him whose phone he called me from. He told me it was his phone. I asked what the problem was only to be told “I told you my phone is not working”. I realized this conversation reminded me of the following:

Costello: What’s the guy’s name on first base?
Abbott: No. What is on second.
Costello: I’m not asking you who’s on second.
Abbott: Who’s on first.
Costello: I don’t know.
Abbott: He’s on third, we’re not talking about him.

I laughed to myself and assured dad that I would come over right after lunch to check his phone. He was happy and so was I.

How do you not act surprised when a woman would get mad at her husband and throw a glasse of water at him? A friend discovered her dad had used her yeti cup to relieve himself while waiting for her in the car. What do you do when you find your clothes folded and placed in the kitchen pantry? You laugh or you cry. Choosing laughter is better.

Sometimes you cause others to laugh as they watch you deal with behaviors. Sometimes you laugh watching them deal with behaviors. I remember sitting in a hospital room with someone who ate an entire bowl of chocolate ice cream with the nurse handing them pills to swallow between bites. Satisfied that the medication was administered, the nurse turned her back. I watched as the woman promptly spit all six tablets out. After realizing she had mastered the art of cheeking pills, I then wondered how many times she had done this. My humorous thoughts about her talent dissapated as the horror of how much missing her medications had excellerated her behavior problems, falls and mental decline.

Remember it is okay to laugh as long as the person you are caring for is laughing with you. When my no nonsense mom peeked until the table giggling and waving at me I had to laugh. Her frostie had been dropped and I had climbed under the table in front of everyone to recover it. Just as I started to climb out quietly, she began to act like one of my young grandchildren. So much for sneaking out quietly and hoping no one had seen me. Hopefully, some one dealing with a parent with dementia learned humor is a great coping skill that day.

When you are out in public and your parent’s pants fall to their ankles, simply smile and pull them up. When someone with dementia reachs over and takes your ice cream, let them have it. Laugh at the calories you just skipped.

Humor is in fact a tremendously helpful coping skill. If you find something funny, don’t feel guilty.

I mean no offense to anyone but maybe God laughed as he created a platypus, an ostrich or a giraffe. As our creator, he has given us creativity. Use it to make life easier when you can.

Word for Today

Proverbs 17:22

A cheerful heart is good medicine, but a crushed spirit dries up the bones.

Song for Today

Prayer for Today

Dear God,

Thank you for giving me creative ideas as I navigate caregiving. Help me to choose to laugh and enjoy life when I can. Guide me as to when laughter is appropriate and when I need to be sensitive.

Amen

A Grateful Heart

“God’s grace is the bridge that carries us from our brokenness to His wholeness.”

When you love deeply, you risk facing brokenness. As a caregiver you dig deep into your well of love to shower on someone else. That love is not always recipocated or recieved. The bible talks about wells that were dug. The enemies of Abraham filled the wells with dirt. Later when wells were dug, others claimed the wells as theirs. God has always provided when the enemy attempts to destroy. The deep well of your love is critical to guard from the enemies attacks so the love pouring out of it is pure and refreshing to others.

A crack in your heart begins the first time a family member shows behaviors toward you that you never have seen before. A kind and generous father may become angry and say and do things that you never thought you would see. Your childhood hero has transformed into a demanding and selfish person. Keep in mind that your hero is still there. A nasty disease has reared it’s ugly head. You have to allow God to sew a stitch in the crack of your heart and reach deeper to love while you yourself are hurting. I know that as I have hand stictched the binding onto quilts for each of my grandchildren I thought of them and prayed for their lives. Imagine the grace and love God is stitching into your heart with each stitch He sews.

As Alzheimer’s progresses you will see a person’s life going in reverse. I was watching a parent become incontinent at the same time a grandchild was being potty trained. With the grandchild, it was exciting. First steps toward independence were being taken. We would assist as they mastered their new skill. Cheering them on was fun as we saw their excitement. Assisting a parent or spouse brought sadness as their independence was being stolen away. You tried to preserve their dignity. You went shopping for depends with a sadness inside.

Sitting by my mom’s side and spooning yogurt into her mouth was done with vast amounts of love. We had now truly reversed roles. My heart was filled with gratitude for the woman who had tended to my needs for so many years. The memories I had were not always wonderful, but thanking God for the great ones and forgiving for the few ones that were not so good allowed me to heal. A healed heart and a grateful heart hold so much more to be poured out. God sewed the gaping hole together so I could pour love more freely.

I was at my dad’s side when he grew confused. He had oxygen tubing in and was irritated by it. I reached to adjust the tube after he removed it. He grabbed both of my wrists and cursed. I calmly reassured him that I would take it off for a while and then exited the room. My heart was breaking because I had never experienced that behavior or heard those words come from his mouth before. A protective relative followed me out. She was quite angry at my dad. Tearfully, I told her this was not my dad. This was a man whose cognitive decline were acting and speaking. God had allowed me to keep loving my dad as if this event had never happened. God had reenforced the stitched seams as the event unfolded.

A day will come when someone looks you in the eye and doesn’t know who you are anymore. That is when it feels like your heart rips in half. It hurts intensely as the hard truth sinks in. You may have to retreat to a quiet place for God to heal your heart and then recover slowly. Day by day you will feel strengthened as you pray and rest in God’s peace. His Intensive Care Unit is outstanding. When you exit and are ready to face the task at hand, you will have a grateful heart filled with overflowing love once more.

Day by day God will hold your heart in his hands.

Word for Today

Colossians 3:16

Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts.

Song for Today

Prayer for Today

Dear Heavenly Father,

You amaze me with your healing and forgiveness. Teach me to forgive when others misunderstand or reject my love. I am guilty of wanting to quit loving as deeply as you ask of me when I am hurting. Tenderly hold me and restore me so that I can pour love out to those who are depending on me to meet their needs. I want to serve with a heart of gratitude.

Amen

When the Dam Breaks

Today you will learn a bit more about me and my caregiving journey. The photo above is of a dam near my home. There is a history about it that I am sharing to help you better understand my own story.

According to my research over 50 men died during the construction of the dam. A local business has photos taken during the construction and stories I heard from family were that a few of the men fell and were buried in concrete.

The Wilson Dam was constructed in between 1918 and 1924. The shoals on the Tennessee river were difficult to navigate; hence,the dam was an attempt to tame the river. Today it produces power for the Tennessee valley. Families travel over the dam, power their homes and enjoy water activites without knowing the price some men paid.

I realized one day that I too had built a dam to try to control the turbulent emotions that being a caregiver had produced in me. To be strong, I buried pain and grief so that I could be an effective and loving caregiver. My mom had Alzheimer’s. It hurt me to the core watching her fade away. I was hurting so badly that I didn’t even realize that my dad was losing some cognitive ground as well. There was not enough time to process the changes. I shoved the fear, anxiety and heartache aside on the days that I didn’t take time to lay it at God’s feet.

When my mom died, I was not overcome with debilating grief. Dad needed me and I thought that the gradual grief that occurred as I lost bits and pieces of my mom must have left few tears to shed. Then my dad passed and I felt grief, but it still seemed like a wave of extreme grief would hit but it didn’t immediately.

Time passed and tsunami waves did begin to wash over me. Life isn’t always easy, so I shook the water off until other situations in life rattled me. I thought I was doing better and that I had given things to God.

One day out of the blue, a trigger hit. The patches I had applied to the dam could only last so long. When the dam broke, I broke. All of the stuffed emotions rolled over me. As I gasped for air, God used my husband to hold me and just let me cry.

Have any of you been building a dam to hold back your river of emotions? Many of you are dealing with unforgiveness over things in your past. Some of you have regrets that you didn’t choose to lay some things aside and make visiting your loved one a priority. Perhaps you live in fear of getting a terminal illness yourself. Do words run through your head that you wished you had said?

If your loved one is still alive, go and take care of things hidden in your dam. If you feel the stress and see fractures in your dam, find a place to hide and let emotions go. God is a great listener. A friend of mine felt like a pressure cooker and felt she had no place to let off stem. She visited the ocean and slipped out for an early morning walk on the beach. With no one in sight, she faced the ocean and yelled. The ocean sounds covered her voice, but she walked in peace.

Burying your emotions is only a very temporary solution. I understand that you have to be strong until a crisis is over. I encourage you to monitor your emotions. You will reach a point of needing to let steam off. Find a friend you trust and talk it out. Do not be guilty of allowing your spiritual, physical and mental health to suffer. I ignored a health issue for way too long, almost too long. Unusual circumstances happened in the year that my mom passed away. I had to slow down long enough to address a health issue. A surgery and biopsy revealed cancer cells that were caught just in time.

Grief can ease as we replace it with thankfulness for having a person in our lives that we were so blessed to have known. God has healed my heart in a way that no person could. I still miss my parents intensely.

Word for Today

The Lord thy God in the midst of thee is mighty; he will save, he will rejoice over thee with joy; he will rest in his love, he will joy over thee with singing. Zephaniah 17:3

Song for Today

Prayer for Today

Dear Heavenly Father,

I praise you that you are a refuge I can run to when I feel the weight of the world on my shoulders. You are faithful to bear the load I carry. There are days when I understand the outpouring of psalms that David wrote. They are often extreme words of thanksgiving or sobs of a broken heart. You hear my words that flow from me.

Heal and restore me so that I can continue on. Touch my tired body. Renew my confused mind. Give me hope as I face trials. When I am guilty of hiding my emotions, you are searching my heart and waiting for me to simply pour it out to you.

Thank you for loving me.

Amen

What Happens Now?

Graduating from being a caregiver is much like graduating from high school. The vast difference is you are wiser and well seasoned with life experiences.

When you graduate from high school you leave the close knit group of friends filled with hopes and dreams. A whole new world awaits for you to explore. You are excited and a bit afraid of stepping away from the familiar.

A caregiver has usually had their adventures of youth and is in the midst of following their dreams for the golden years.

Then unexpectedly your world shrank and your dreams were shattered by a disease called Alzheimer’s. Friends slowly faded away and your focus became narrrower and narrower. You found yourself in a new role of supporting someone who once was strong. One long day followed another as both of you adjusted. Sometimes you gave up hobbies and activities. Sometimes happiness was replaced with doubt, loneliness, heartache and confusion. Many days you answered the same question over and over.

You eventually made adjustments. You discovered your strengths you didn’t even know you had. You poured love out knowing the person you loved could feel it, but didn’t have much left to express their love to you. A smile or twinkle in their eye was enough on the rare days this occurred.

I know men and women who gave of themselves for years to their spouses. I am one of those children who had to become the caregiver of my parents even when they no longer recognized me as their child. Then the day comes that you say goodbye. Tears flow and hearts break. The life we have known ends and we are left picking up the pieces of our heart and trying to move on. Clothes and possessions have to be collected and dealt with. Small things trigger the waterfall of emotions. For me, I was cleaning out of my parents house . A guest room had a small bowl of potporri. As I poured it into a trash bag the scent of mulberry overwhelmed me. Mom’s favorite scent hit me hard. My husband came looking for me and held me as I sat down and cried. There is a season of readjusting.

Instead of being a senior in school you are a senior in life. You are dumbfounded in trying to process who am I now and where do I go from here. Finding your new role is not always easy. Take your time and pray about your next steps. Explore nature. Reconnect with friends. Try a new hobby.

Perhaps, a wiser and more mature you still has lots to offer to the younger generation. I thank you for the tremendous and valient effort you put into being a caregiver. You are worthy of being recognized as a hero. Only God knows your heart and only God can heal your pain. You will hear the words “well done my good and faithful servant” one day. While waiting, accept my virtual hug.

We will always remember the years of caregiving and the friends we made along the way. Much like climbers on Mount Everest, we struggled, we became stronger and have earned a rest.

Word for Today

Isaiah 49:13

Shout for joy, you heavens; rejoice, you earth; burst into song, you mountains! For the Lord comforts his people and will have compassion on his afflicted ones.

Song for Today

Prayer for Today

Dear God,

I thank you for the strength, compassion, and tender mercy you poured into my life during the caregiving years. Day by day you gave me the determination to be the best caregiver I could. You comforted me when the days were hard.

Today I ask that you give me opportunites to encourage caregivers around me. Remind them that they are loved and not alone.

Amen

Caregiver Ups and Downs

“Family means no one gets left behind or forgotten.” — David Ogden Stiers

It is summer in the south when blueberries, blackberries and peaches are turned into desserts, jams, and jellies. A few days ago juice ran down my arm as I peeled fresh peaches. I am enjoying peach cobbler made with my mom’s recipe while typing. Her birthday was on June 16th and she has been on my mind. I still find myself using her recipes when cooking.

While reflecting on mom’s final years, I have no regrets about making sacrifices to be with her when I could. I have lots of regrets that I didn’t always know exactly how to naviagate the compex plan of care that she needed. Most of us learn much as we travel down the road of caring for someone who is no longer the strong capable person we once knew.

Emotions run wild and changes happen faster than we expect. The disease outpaces our learning curve and we all end up drained emotionally, physically and spiritually. When this happens we need to pause and focus on what we have done right.

My number one thing that I feel I got right was learning to make the most of every situation when mom and I connected. Early on we could shop together and enjoy my grandchildren and her greatgrand children. I let her help with holiday meals in ways that she could.

We traveled a few times to her favorite places. Answering her repeated question about what time we left could have stressed me, but I made it a silly game. My answers changed each time she asked. When the alarm went off. We left at 6 am. We left when the rooster crowed. We left as soon as dad packed the car. These answers kept her entertained.

I planned carefully for our last trip. My thoughts were that it could be a difficult trip. I prayed for a peaceful time and God answered. We found a lovely one level cabin in the mountains near Cades Cove in Tennessee. Mom loved the large yard that had a flock of wild turkeys visit. On the day we drove to Cades Cove light snow flurries fell all day. Mom was calm and loved every moment. I cooked meals in so she did not have to be in crowded restuarants.

As mom’s disease progressed, I could enjoy the moments that she became silly and like a playful child. It was a side I never would have seen if she didn’t have Alzheimer’s. Inhibitions were torn down and she lost her resolve to always be the strong one who was responsible for everyone else.

She was the oldest child and helped care and protect her younger siblings. Two of her sisters had been told that mom was a swallow risk as the disease progressed. They just knew that a piece of gum would help mom have a fresh feeling mouth. They gave mom the gum and she chewed it happily. When they had to leave they needed to retrieve the gum. With a swab, they tried to fish the gum out because neither of them wanted to chance being bitten. Mom promptly clenched her teeth on the stick and grinned. It took over an hour to accomplish removing the gum. A nurse told me she went to investigate the giggles and laughter she heard coming from mom’s room. There was so much joy between the sisters that she asked me to forgive them for the gum when she relayed the story. I did forgive them. They were learning how vital it was to make the moments of connection count.

In her final years, we connected when I called her Linda, not mom. She could not relate to being a mother, but she knew I loved her and was supposed to be there. I would gently massage her hands with arnica oil to help her stretch them without pain. I knew the music to play on a bad day. On really bad days, I sat by her side with tears as I prayed for God to give her peace. I placed my head on a pillow next to her and told her what a wonderful person she was.

About five days before mom moved from this earth to her heavenly home, she had tears when a sister called. She squeezed my hand when a grandson called from across the country. She squeezed the hand of a granddaughter and great grandchild who stood by her bed. This continued most of the afternoon as family calls came in. I wondered if she really knew each voice. Then my sister in law called. I placed the phone near mom and had it on speaker phone. She thanked mom for raising an amazing son and then assured her that she had hard it had been since she was raising his 6 kids. Mom tried to laugh. We all knew that for that afternoon we had all connected. Tears of joy abounded.

Do what you can to make those heart connections. You will never regret doing this. Making new connections may require forgiving the one you care for if any hurts are in your past. This is a tough one, but it will become necessary for you to do this so God can heal your hurts and enable you to love more deeply.

Word for Today

Ephesians 4:32

Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.

Song for Today

Prayer for Today

Dear God,

Thank you for showing us how to love and provide care for those who can no longer take care of themselves. Give us ideas for keeping our connections.

Amen