Staying Positive

“There is something about everything that you can be glad about”.

From the original novel Pollyanna by Eleanor H. Porter

I used to be more like Pollyanna. I could usually see something to be glad about. Since my husband’s stroke, I have decided to be very glad that he is alive. I choose each day to lift my spirits by thanking God that he can talk, has a strong mind and can walk with a hemi walker as someone assists.

The days are long and hard. My wonderful husband depends on me for many things. The stroke has residual effects that we struggle with daily. Neither of us has slept for more than 3 hours at a time. I have been so overwhelmed since we arrived back home after the hospital stay and in patient rehab, that we do well to have healthy meals and clean clothes. For the two of us to go to the doctor’s office, it takes about 3 hours. In the past, one showered while the other made breakfast. Then we switched and one feed the animals while the other showered. We could be out the door in about an hour.

I have often spoke about the importance of a caregiver building a team. Our team consists of amazing people that have taken care of the animals, mowed the grass, built a ramp, provided meals and gift cards, called and texted with encouragement and prayers. Some have even recorded songs about healing and sent them to us. From coast to coast we have friends, family and neighbors that have blessed us. Physical and occupational therapists are in and out of our home. My husband was gifted a very nice recliner to sleep in when the bed is uncomfortable. My amazing brother-in-law has been our transportation until I could buy a vehicle. We are very glad for our amazing team supporting us.

There are plenty of tears as we grieve the life we once had, but we realize how blessed we are to have each other as we walk this valley. A deeper compassion for others is growing. We stand in hope. Listening to worship music helps us stand in faith for a complete healing.

Today was our second outing by ourselves. It was simply a trip to the pharmacy and to grab a late breakfast. We kept it simple by using the drive-thru for both. Purchasing a transport wheelchair has made life easier. The large one we use indoors weighs 38 pounds. The other is 12 pounds lighter so I can load and unload it in the vehicle. I am glad that I can handle transferring in and out easier.

We don’t get everything right. There are days that I have to remind myself that the words and actions of my husband are the stroke talking just like in Alzheimer’s when the disease is talking. I saw my husband’s MRI and the damage to his brain. It was shocking but I had to remind myself that his brain can rewire and heal. His left hand and leg often move, kick and spasm. I have learned to dodge these movements. Things get knocked off counter and spill on the floor. I am having to grab a stool to reach things in the kitchen rather than ask my hubby to get things for me. He is working hard with therapist to regain control of his left side. He gets very frustrated and I have to show more patience than I knew I had.

Isolation is very real. There is little time for conversations with friends. I choose my times of shedding tears carefully. My husband is very aware of the work load I carry. He feels guilty for having the stroke. I cry when he is asleep. We do talk, cry and pray together as well.

A friend and neighbor is very sensitive to our struggle. She often shows up just to give a hug and sometimes a meal. This act of love is another thing that keeps us positive.

We are looking forward to the day we can pay forward the love we have been showered with.

Word for Today

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand. Isaiah 41:10

Song for Today

Prayer for Today

Dear God,

There are days that I have to focus on you to survive. You see my brokeness and tears. You hold me in your loving arms when I lose sight of hope and healing. You remind me that you are still in control. Give me peace when fear and anxiety creep in and try to steal my hope and joy. Humbled I turn to you and wait.

Amen

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