At times, caregivers to long-term dementia patients, including me, ask: Are my feelings normal? Will my suffering never end? Does God care? David Kessler and Elisabeth Kübler-Ross, in On Grief and Grieving, provide insights which I have woven into the tapestry of my own understanding and experience. Today, as I revisit a previously covered time frame, February through May of 2019, I will address these three important questions:
Are My Feelings Normal?
Feelings refuse to be tucked into neat packages which conform to some preexisting standard. My journal entries from early February depict such conflicting inner expressions, clamoring to be heard:
- “At 6:00 am, overwhelmed with fear, I awakened from a nightmare. I had been walking with Linda in a Florida orange grove. While distracted for a moment, she disappeared and I realized finding her in this setting would be like working my way through a maze. As I lay in bed and considered the hopelessness of my situation, I concluded that I must release her to God and entrust her care to the staff at Legacy Village.”
- “The Holy Spirit is my constant companion. Without him, I cannot stand the pain. My continual prayer is that God will make every day Linda has on this earth joyful and free from fear.”
- “I must go on with life and build new friendships which include Ron, not Ron and Linda. I sense God is bringing victory out of seeming defeat and joy out of ever-present despair.”
Whether my feelings are typical and meet some acceptable norm is not important. Rather, they represent my reality!
Will My Suffering Never End?
- Kübler-Ross’s stages of loss include denial, anger, bargaining, depression and acceptance. Collectively, they are helpful in understanding our journey.
- The uniqueness of our personality impacts the way each of us responds to loss. Not everyone goes through all five stages. Even though the above listing tends to be typical, many do not experience them in a prescribed order. Some persons even report experiencing additional stages. It is also important to note there is forward and backward movement between stages. In previous blogs, I have described this as two steps forward and one step backward. The crucial thing to remember is that acceptance is the desired goal.
- In the midst of the pain, there is a bright spot to be found: Caregivers to long-term dementia patients often report they have time to experience all five stages of loss. Consequently, upon death, there are no further stages to complete.
Does God Care?
The Psalmist maintains God is active in our life prior to birth:
“You saw me before I was born. Every day of my life was recorded in your book.
Every moment was laid out before a single day had passed” (Psalm 139: 16 NLT).
Jesus indicates this awareness and care continues after our birth:
“Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside
your Father’s care. And even the very hairs of your head are all numbered. So don’t be
afraid; you are worth more than many sparrows” (Matthew 10: 29-31 NLT).
My journal entries from late May demonstrate God never wastes our sorrows. Furthermore, my submission to his desire to transform my life is depicted as a vital component:
“God is continuing to teach me wonderful things: Today, after Linda finished using the restroom, I flushed the toilet several times; however, the bowl had much residue left and I had no way of making it presentable. I could not bring myself to leave her bathroom in this condition. Therefore, I improvised by taking a wad of folded tissue, reaching beneath the water level, and breaking it up. While doing this, I remembered the words of Hollis Gause, a brilliant theologian, whom I was privileged to hear lecture many times. In speaking about caring for his elderly wife, and later his dying son, he said: “It was my honor.” I have never felt closer to God and more aware of his approval than when I am engaged in some of these menial tasks. God has used Linda’s illness to break me, set me free, and teach me so much:
- “I have a capacity to love that could never originate in man. It is from God!”
- “I now understand sanctification as a purifying process and not a doctrine.”
- “My value system has undergone a drastic reprioritization. God has ripped me away from many things which I formerly cherished.”
- “God’s Word has increased meaning: ‘Your statutes are my delight; they are my counselors” (Psalm 119:24 NLT).
- “In the midst of ALONENESS, WHICH AT TIMES IS UNBEARABLE, I FIND HIS PRESENCE TO BE SO REAL!”
- “Even though I have lapses, my TRUST IN HIM is moving from head knowledge to total confidence.”
Ron Harvard Ministries 