It is a joy to be able to interact with amazing caregivers. They can be young, old and in betweeen. Their time is given freely or they may be paid. The amount of pay is usually not why the job is accepted. It is accepted because they have beauitful caring hearts.
When I ask a man I know how things are going, he almost always responds with a smile. He loves his wife dearly. As the conversation lasts a little longer. He admits that today his wife knew him but on many days she doesn’t. Her lastest thing is to move and hide things so he is always searching for misplaced items.
This morning I spoke with a paid cargiver. She said that during the night the woman she takes care of awoke and cried out because her room was on fire. The caregiver looked around and realized the glowing face of a clock had set off the panic. She turned the clock and reassured her. The lady then asked her to please lay down by her side. With a smile she did just that and the other one fell fast asleep.
I am a part of an organization that has a board consisting of several people who are employed as nurses, social workers, and nursing home administrators. Often I overhear how they have bought food for a family, picked up prescriptions for someone, allowed a visit to turn into much more as they changed a person and helped bath them while there. This world is full of people that know how to love and show love to families that need them.
If you are reading this and feeling like a forgotten person who is overloaded, I get it. Too many times you must bear way more than a light load. You are amazing as well. This job is never easy. There are few rewards other than knowing you are doing your best under trying circumstances. Please know that God is with you. He can give you wisdom, courage and strength to continue to be amazing. He amazes us and enables us to amaze our loved with with compassion and tenderness on the most demanding days.
Pay careful attention to your own work, for then you will get the satisfaction of a job welldone, and you won’t need to compare yourself to anyone else.
Song for Today
Prayer for Today
Dear God,
Shape me and mold me into a better person. Give me compassion and shower my soul with love that you pour into me so I can pass it on to those you have placed in my care.
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.
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.
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.
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.
Before we tackle the issue of taking the car keys, we will explore why it is so critical to do it.
An abnormal build-up of proteins in the brain that kills cells and damages connections between neurons is a result of Alzheimer’s disease. Most people are aware of symptoms such as confusion, memory loss, personality changes and other kinds of cognitive decline. Some lesser known symptoms can include visual problems. Trouble areas are spatial relationships, narrowing periphial vision and depth perception. Some patients develop trouble reading, following moving objects, or have problems with contrast.
Driving requires having great vision. Imagine driving in traffic without having the ability to judge distance. Take away your peririphial vision. Stop at a red light with no depth perception. Now remove the abilty to read and process trafiic signs. I can see red lights and hear sirens in my head now especially having spent 22 years navigating traffic in a large city.
A fender bender would be a blessing. What if a child ran in front of the car and you did not see them coming. Could you live with the horror of hitting that child? No one wants that. The independence of an adult driver with dementia is never worth the life of a child. Take time to let this scenario to sink in. Now think about how fast this stress would escalate the person with dementia’s decline.
Getting lost is not the real problem. We can track phones and vehicles now. There may be hours of crying and praying but technology is available to help locate a lost loved one. Recently, I was traveling home from the city. Our farm is just ten miles from the state line. A car was moving at about 15 miles per hour in a 45 zone. Cars were changing lanes and zipping by. I slowed as I passed and glanced over. A white haired woman was looking around as if lost. I pulled over at a gas station. My plan was to get behind her and call 911 to come. Amazingly, she pulled over at the same station. I watched as she pulled out her phone. I slowly approached her car and tapped on the window. When she opened it she was already talking to her son. I asked if she was alright. She informed me that she was talking to Rick as if I knew Rick, I asked if Rick was her son. She said yes. I asked to talk to Rick. He informed me that his mother was supposed to be at a doctor appointment. I had him tell her to follow me and led her back to the appoinment.
She lived three counties away and was a few minutes from being in another state! God placed me in her path that day. When she never returned from the appointment, a family would be frantically trying to find her.
Hopefully, I have your full attention now. Take the keys for everyones safety.
There are things to consider now that you understand the visual changes. If a person tends to wander, this gives you knowledge. Place a black mat in front of exterior doors. Many perceive this as a hole and will avoid it. Add a lock at the top or bottom of the door. They tend to just focus on the handle. Paint the door the same color as the wall. It works as camoflauge.
If you go read the previous post on meals, the placement of food on plates may make more sense when you know that visual changes occur. To help navigation in your home declutter. Simplify decor to create a calmer enviornment for them.
Some visual skills may sharpen. They will read your facial expressions like a pro. Your stress will be reflected back because they can tell when you are angry or irritated with them.
They will see people and things you do not see. The woman in the mirror that she sees may not be her. She may think it is a stranger in the home. These things occur and it is their reality. Cover the mirror if it becames a huge issue. Agree that the non existing cat on the sofa is cute. My mother-in-law called to tell us a lion was in her flowers in her room. We thought maybe she saw the petals as a mane. The next day she called to tell us a fairy was dancing in the flowers. She was known to have delusions so we went to visit. Upon arriving she informed us a lady was in the flowers.
Promptly I commented that the flowers were drying out and needed to be tossed. We promised to bring new ones the next visit. I passed a nurse on the way to the trash can. She laughed when she saw me. She had been having to look for animals and people in that bouquet too.
If you just saw a monkey in the flowers, maybe you should get tested. Hey, I couldn’t resist. It is Saturday, and we all need a little humor.
In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.
Song for Today
Prayer for Today
Dear God,
I praise you for the many times I have seen you in my life. Your faithfulness remains the same as my life changes. Help me to trust more that you will be with me on the darkest nights and the brightest mornings. Help my loved one who struggles with dementia to always see you in the hearts and soul.
Two of the first senses affected by Alzheimer’s seem to be vision and smell. Today we will explore how this impacts meal time.
My mom lost her sense of smell years before other symptoms appeared. This did not affect her eating habits for a long time.
Then a healthy diet flew out the window. Suddenly sweets were all she wanted to eat. This was so strange because the same thing happend with my grandmother. My aunts would take candy to my grandmother. My mom would find the sweets and hide them. Her sisters would find them and then hide them somewhere else. They would take them out of hiding for their mom when my mom was not around. They called my mom the sugar police. My mom was trying to give my grandmother a healthy diet. Her sisters wanted to let her have whatever she wanted since she was not diabetic.
Who was right? I think both were. A time comes when you continuously make adjustments finding what they will eat and strive to find a balance. Mom loved peanut butter pies. I jumped on making them in bulk and freezing them for later. This was a way I could reduce the sugar and add more peanut butter. The cream cheese and peanut butter were adding protein. You keep trying until you find what works. You can slyly be the sugar police.
Later in the end stage of the disease mom was limited to pureed food and thickened liquids. She would often close her eyes when we tried to feed her. I noticed that she barely stuck her tongue out to touch the spoon. If it tasted sweet, she would open her mouth. If it was not, she refused to open her mouth.
I had an aha moment and asked that yogurt or softened ice cream always be with her tray. Many mouthfuls of beef stew, green beans and other items were dipped into the yogurt or ice cream. Don’t laugh. It worked.
When vision changes and a table is too busy with patterns or color, they have trouble distinguishing what is their food and get confused.
The images above will help you understand a little better. Vanilla ice cream fades into the white dish. Mixed colors and patterns can bring frustration. Most of us love presentation and a beautifully set table. Those with dementia do not. Look at the floral plate carefully. The flowers look very similar to cookies. Imagine trying to pick the cookie up. This could set off a tirade. No one wants a food fight. Imagine blueberries in a blue bowl or green plate with turnip greens, broccolli and asparagus. It would all blend when they looked at it.
Keep in mind that they may not always recognize what is food and what is not. Once we were at a Christmas party in a skilled nursing facility. Last minute guests arrived and handed gifts out to each resident. The gifts were bottles of shower gel. I warned my husband to help me watch the residents because the staff had their hands full. My husband leapt to his feet just in time to grab a bottle before a woman turned it up to drink! The gift givers had no idea that a pretty bottle could mean something good to drink.
When it comes to food, keep things simple. On a white plate for breakfast you could have bacon, eggs and strawberries. Each could easily be seen. They may be calmer and eat more.
You can use essential oils such as citrus to stimulate their appetite. Play calm music softly in the background. Create a peaceful atmosphere and do not rush through the meal. Avoid large family gatherings when you notice that the stimulation is too much.
You will reach a point that using silverware is a challenge. Cut their meat before presenting their meal. If they have essential tremors or tremors from Parkinson’s Disease, you can find weighted silverware that helps stablize their hands.
When using silverware is not feasible, offer finger foods. Cut sandwiches into quarters. Other suggestions include fruit, vegetables and maybe a dip to make it more enjoyable. As I stated earlier, you will make adjustments as the disease progresses.
Just in case you are feeling the weight of how things will change, I have included a cool finger food idea. Yes, this is a child; however, if it gets healthy food down, go for it.
You will need to educate yourself about pureed food and thickened liquids in case you need to know about it later. People with Alzheimer’s can develop swallow issues in the last stages. I will try to expand on this in a later post.
Amazon has some weighted silverware. I have also found scarfs that snap in the front and act as bibs. These are beautiful and help preserve a little dignity. Amazon and etsy sell these but if you sew, they can easily be made. Print a card for dining out to hand your server explaining that your loved one has cognitive decline and you will order for them. This saves awkward and embarassing moments for all involved.
Since we are talking about meals, I have a kitchen tip. Place a placemat or piece of cardboard over your drawer that has knives. They will not look underneath by the time it is dangerous for them to safely use knives. If you find it necessary to unplug your stove, an electrician can install a switch out of their sight.
I smell my dinner now and it smells wonderful so I am wrapping this post up with a thankfulness for having an intact sense of smell.
Don’t get discouraged! You have got this under control. Together we an be the best caregivers ever.
Gracious words are a honeycomb, sweet to the soul and healing to the bones.
Song for Today
Prayer for Today
Dear God,
I get caught up in worrying and fretting while being a caregiver. Guide my steps and give me wisdom to face the task at hand. Help me to remember that gracious words are sweet to my soul and healing to my bones and the loved one I care for.
Help me to accept that changes will come and as I grieve during the process and I know you will catch my tears and hold me in the palm of your hand.
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.
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.
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.
“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.
While working on building projects with my husband, I learned the importance of fine tuning as we go. Measure twice and cut once. Check for levelness and squareness. Hold your breath when trimming with paint. Wear your grubby clothes. Use a drop cloth. Have a shop vac handy. Having the right tools is also vital. Hand planers, levels and safety glasses are always nearby for when we need them. The finished product is well worth the effort and time spent. You watched a plan come together and smiled at the finished product.
If only caregiving worked the same way! You can plan, carry out the plan and then find there is no fine tuning that can make life turn out as you thought it should. You cannot just sand off the edges when raw emotions erupt into anger and frustration. The breakfast you lovingly prepared because your spouse seemed to enjoy it immensely yesterday is pushed aside and they refuse to eat. You shopped for a few new shirts and your husband refuses to wear anything except the one he has worn for three days.
I found a book from my senior year of high schoool. The five year plan I set for myself was to go to college and get married. I check that one off. The ten year plan was to buy a house and have children. Check again! Then life happened fast and furious. Before I knew it the kids were off to college and our nest was empty.
We had a flurry of weddings and grandchildren. All was going according to what I had expected. Then I noticed my mom just wasn’t herself. My heart was gripped with the words Alzhiemer’s Disease. Caregiving was not in my plan for many years down the road. I couldn’t push the schedule back. Adjustments had to be made quickly. For the early years of the caregiving journey, frequent visits, prepping meals for the freezer to help dad, taking care of doctor visits, monitoring finances online and hiring help for my parents worked.
My time was being split between my parent’s home 6 hours from mine and my own home. Trips to visit grandchildren became less frequent. We made a couple of major adjustments. We moved near our grandchildren and my husband was able to work from home and travel with me. This cut my trip to 3 1/2 hours each way.
In the end, my parents were both declining. I moved them to an assisted living and nursing home close to me. Visits were then daily. My mom was in end stage with Alzheimer’s and my dad struggled with mini strokes, diabetes and incontinence.
I know that I never had to provide full 24 hour care like many of you do every day. I do know my mind was always questioning things. Did I give my husband enough time? What am I missing out on with my children and grandchildren? Did I leave food prepared and clothes washed for my husband and my parents? How many more hours do I have to fight traffic? When is the next doctor’s appointment? It felt like I was on one of those round spinning wheels we used to play on as a child. I had run around and around and then hopped on to ride. Grasping tightly to the metal bar, I held on so I wouldn’t fall off.
In the midst of my trying to plan for whatever happened, I came to realize I could not plan for all of the twist and turns ahead. I had to trust God with the plan. I had to let Him fine tune and adjust me for things to work. He then held me tightly so the ride of life would not throw me off.
Some of you have feelings of guilt and inadequacies. Recently I read another blog for caregivers. A caregiver felt like a failure. When asked why, her response will make you smile. She failed to give her husband a daily bath. Wow! I consider one every third day a success. You make great plans, but life as a caergiver shows you they don’t always work. Continue to plan but have several backup plans as well. Trust God to guide you and hold you tight.
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
Song for Today
Prayer for Today
Dear God,
I humble myself and ask for you to move the mountains that I cannot move. I will rest in your arms and let you hold me close while I witness your work in my situations.
Walking Them Home 