Stacked Grief…layer after layer

While researching this week for a presentation on anticipatory grief, I came across the words stacked grief. These words grabbed my attention because they described two stressful seasons in my own life. This is when losses are suffered in close proximity to each other.

All caregivers for someone with Alzheimer’s disease and related diseases come to understand grief. It may come as the one you love loses skills or if it is the final loss when they pass away. You learn to work through grief most of the time.

You may grieve when you look ahead at what you are about to lose. When you experience anticipatory grief, you may feel guilty for grieving before the person passes. There is a large emotional toll. It takes time to learn to balance your emotions.

I discovered after my mom had moved into mid stages of Alzheimer’s that my father was showing mild cognitive decline. There was not a lot of time to allow myself to grieve the little losses. I tried to, but sometimes I packed the emotions away. It was like each loss was a wood block in the game called Jenga. This is a game we played with our children when they were young. Each of us held our breath when stacking the blocks into the tower or removing a block. No one wanted to cause the tower to tumble. I made every effort to build a balanced tower as I tucked my emotional blocks in but I feared someone might pull a block and everything would fall apart.

The tower was getting higher and higher. I grieved leaving my husband to take care of my parents. I grieved leaving my parents to return to my own home. There was grief when I could not spend time with my own children and grandchildren. The blocks of grief were stacking fast and furious.

My mom passed away. The block tower of grief continued to grow. Our home flooded. Another block is stacked. I had surgery. Add several blocks this time. My dad passed away. That almost toppled the tower. God must have glued the stack together so I could survive. I had relied on the solid rock of Christ when I started to build this tower.

Instead of the blocks all tumbling down, it felt as if God gently handed me each block. I held it and shed tears. When I was calm, he handed me another one. As time passed, I accepted the losses and allowed God to mend my heart.

There was a small reprieve. Then blocks of grief were reappearing and I tucked them into a new tower. We sold the home we loved to be closer to my in-laws. I truly hated leaving our home that had just been restored from the flood. The difference in handling grief is what I had learned the first time. Place a block when time does not allow grieving. When things settle, pray for a season of healing and peace. That lasted for about a year. Then the tower rose fast. My father-in-law was diagnosed with cancer. My mother-in-law was showing signs of dementia. Within three years we said goodbye to both of them and 2 pets. There I was again feeling as if the tower of grief was about to tumble down on me.

God was faithful and helped me process everything again.

I am no superhero. I suffered pain, frustration, grief, anger, and many more emotions. There were days that exhaustion got the best of me and I caved under the load. There were days that I stepped back and cried over the gradual losses. With God as my protector and healer, I moved on.

A choice was made to live in the moment while trying to make the most of each situation. Jesus faced grief and wept when his friend Lazarus died. He went on to raise Lazarus from the dead. If he did this, then I knew he would raise me from underneath stacked layers of grief.

Word for Today

John 16:20

Very truly I tell you, you will weep and mourn while the world rejoices. You will grieve, but your grief will turn to joy.

Song for Today

Prayer for Today

Dear God,

I praise you for being my protector, healer and peace. Grief can be hard to bear, especially when the losses happen so close together. You gave us emotions and I struggle sometimes when they are filled with sorrow. Then I am reminded that the sorrow is a result of losing someone I loved dearly. My life has been blessed my many people who I now miss. Please help me to be grateful for the time I had with them.

Amen

Grieving a Loss that Hasn’t Happened Yet

Caring for someone with Alzheimer’s disease has a long steady stream of losses. You experience anticipatory grief. This is the emotional response you feel before a significant loss occurs. It involves sadness and anxiety.You survive this journey by mourning each loss as it occurs. Find a place to be alone and let the tears fall. Accept that the best place to be emotionally stable is when you learn to live in the moment. Let go of the losses and try not to look at what you are about to lose. Cherish what you still have and try to be there with your loved one.

Your mind will be invaded by many thoughts that distract you from living in the moment. You may find yourself anticipating how holidays will change. You think about what life will be like after your loved one is gone. These are realities that you can face when they happen.

You will feel guilty for mourning while they are still alive. Do not go there. Your grief is real and you need to allow yourself to process it. Find a safe place to mourn the little losses along the way.

I had a music list that I listened to and cried on the toughest days. Then I would pray and ask God to comfort me so that I could continue on as a caregiver. I am sharing my list below. I encourage you to compile your own.

Kari Jobe

I am Not Alone

Be Still

Steady my Heart

Cating Crowns

Scars in Heaven

Praise You in This Storm

Just Be Held

Anticipatory grief  can come in stages.

Realization occurs when you come to terms with the fact that a loved one has a terminal disease. Shock waves of sadness hit you. These shock waves will knock you over. Eventually, you will find solid ground. You may deny the truth for a while. Then one day you accept it.

Reflection is a time of looking back. You may have unresolved issues that bother you. You regret things you have said or done. You wish you could repair these, but it is now too late. You can speak the words “I am sorry” and hope they hear you. Forgive any wrongs so that your heart has room to love.

You may journal your great memories to cherish forever. Find joy in these memories and use them to share stories with your loved one. It may trigger happiness in them.

Preparation thoughts enter your mind. You think about care plans. You anticipate planning a funeral. You look at finances. You think about your final conversations and plan how to say goodbye.

Emotional swings surround you. Anger, guilt, love, numbness, dread and pain overwhelm you as you process the grief. Working through these emotions while trying to remain strong for your loved one can be exhausting.

Facing the future without your loved one is difficult. Your life will go on and you will have to make adjustments.

The things listed above do not occur in this order. You will bounce between them all with anticipatory grief. You will be affected mentally, emotionally, physically and spiritually in the grief process. Be kind to yourself and seek help from family, friends, ministers and professionals if you need to.

Grieving along the whole journey of caregiving allows you to find strength to go on. You will still grieve over the final loss. You will have established a framework for coping.

Word for Today

Psalm 29:11

The Lord gives strength to his people;
    the Lord blesses his people with peace.

Song for Today

Prayer for Today

Dear God,

Saying goodbye to my loved one is so difficult. I need your peace and comfort. I need people to hold my hand and offer support. I need You to be my strength.

Amen

Grief Triggers During the Holidays

I am sitting here by my Christmas tree thinking about family that has gone ahead of me to heaven or those who live miles away. The ornaments hold stories. The first Christmas with each of my children and the ones made by my children and grandchildren have their own section. It is in the back corner of the tree where only my hubby and I know they hang there reminding us of them. There are spun glass hearts and angels that once hung on my mom and aunts trees. Glass humingbirds remind me of my in laws and their love of hummingbirds. There is a long nail spike to remind us of the price Jesus paid for us.

A smaller tree is in the den. It has Alabama football ornaments from a tree we gave my dad in his assisted living facility. We had put it up the first game of the season and grandchilren sent ornaments. We added one after each win. The staff came to talk to him and tease him if they were fans of another team. I can see his smile now as I recall how happy this made him.

On my porch there are wood block pieces from a nativity set my children made when they were young. I only have a few blocks left, but I display them.

Deciding on which cookies to make always reminds me of the ones our grandparents and parents made. Mom made hello dollies. Granny made sand cookies. Ma made an incredible pound cake.

All senses are engaged during Christmas. Seeing and touching decorations can cause your mind to zero in on your missing family members. Hearing a certain Christmas song may bring tears to your eyes. Smells such as cinnamon can transport you to a kitchen from your past. You can almost taste gingerbread without taking a bite.

Grief can hit you with gale force winds at the most unexpected times. I was sorting, discarding and packing up items in my parent’s home. It was going well and I was excited to be making great progress. I picked up a bowl full of potpourri and noticed how dusty it was. I turned to pour it into a nearby trash container.

The aroma of my mom’s favorite scent overwhelmed me. A tear formed and I dropped down on my knees sobbing. My husband found me and rushed in to see if I was alright. Sobbing uncontrollably is very rare for me. I had not allowed myself to truly grieve the loss of mom because my dad had needed me to be strong. It was as if a dam broke when that familiar smell filled the room.

Allowing myself to grieve was healing in many ways. When the tears ceased I was able to thank God for giving me parents that were amazing. Our shared love did not end when I lost them. It gave me an uncredible foundation to keep building my life on.

Three years ago my mother-in-law passed away on December 22. We were exhausted from a hospital stay and move to a nursing home. Calling family, making funeral arrangements, and sleeping consumed our next couple of days. Christmas came and went with neither of us remembering what we did on Christmas Day.

This year we have decided to face the triggers of grief by remembering the good things and keeping our focus on the present. We have decorated, baked cookies and shared meals with friends. Our plans for Christmas morning are quite different this year. We have plans to visit residents at a local assisted living facility. After reading the Christmas story we will sing a few carols and move on to fun songs. Boxes of red reindeer noses, jingle bell necklaces and soft plush snowballs will add to the joy. These activites will be adjusted to keep it a controlled fun to avoid over stimulation!

We made a choice to share hugs and love with those who may need it the most. Wishing you a Christmas filled with love and comfort when grief is triggered.

Word for the Day

Luke 2:9-11

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.

Song for the Day

Prayer for Today

Dear Heavenly Father

I am so thankful for your healing power over my broken heart. This Christmas season I know memories will flood my mind and grief may be triggered. I trust you to help me live in the moment celebrating the birth of Jesus. Let your joy fill the tender holes in my heart when grief does rise up. I am trusting you through all seasons.

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

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