Are you walking the path of dementia care? May I introduce you to one of my favorite books on caregiving. It would have been a big help when Gary and I were on our dementia journey but it wasn’t written yet.
Dorothy Gable was the primary caregiver for her mother. She had no medical training or experience (that I'm aware of), yet she has captured the essence of her role as she sought to provide the most pleasant life possible for her mom. After her mom went to heaven, Mrs. Gable turned her experience into a valuable tool for those of us embarking on or in the middle of a caregiving journey with a loved one. As a Christian woman, she chose to care for her mom with attitudes and actions based on God’s “care plan”, as revealed in His Word, for those who need our help. This book is easily readable, highly footnoted, and filled with personal illustrations (including others' stories) and medical explanations in layman’s terms. Pertinent scriptures are sprinkled throughout. The entire journey is covered, starting with a comparison of normal brain aging vs dementia, all the way through to the end.
In simple terms, the author describes the multiple things that can cause dementia, including but not limited to deficiencies and imbalances, and drug interactions, and depression, but she zeros in on the most common diseases that cause dementia. These are Alzheimer’s Disease, Vascular Cognitive Impairment, Frontotemporal Dementia, and Lewy Body Dementia.
An entire chapter explains what is happening to the brain in each of the 4 main diseases complete with diagrams and personal examples.
“How to be a Traveling Companion with Someone Who Has Dementia”
Most of the book is devoted to the Dementia Journey itself, giving the reader a detailed feel for what to expect and consider. Whether you are your loved one’s full or part time caregiver, or responsible for arranging their care, you will benefit from the author’s compassionate heart and thorough research. She has broken down the “journey” into chapters describing the various stages, early-mild, middle-moderate and late-severe, wherein the effects of the common diseases are described. If you already know your loved one’s diagnosis, you can skip to that part and get right to the most pertinent information, whether things to be aware of and consider, hard decisions, and the joys and sorrows associated with each stage. You can read ahead to be ready for the next stages.
Catch the author’s tone and emphasis…
“Leaning on the Lord, we continue to make the best use of our time with our loved one (Ephesians 5:16). We have her with us for a little while longer. Let us focus on what remains not on what’s lost; let us dig deeper with God, strengthening our faith; and let us not miss those opportunities God brings our way to share the light of Christ in a dark world in the midst of the dementia journey.” p.193
It has been a few years since the end of our own nine year dementia journey for my husband, Gary and I. He is now in glory with His Savior, and I have continued in our church’s caregivers ministry. Between our experiences, and those of others I know, I wholeheartedly recommend this book. It will be a huge help and encouragement on your way, both practically and spiritually.
A few random quotes from the book…
“Avoid making decisions out of guilt…I had to accept the fact that my home was not the best place for my mother.” p.145
“We need to discover and focus on what she can still do.” p.120
“If our loved one is at a loss to explain sudden intense feelings of sorrow or joy, we can affirm his emotions. Remember, we should “rejoice with those who rejoice, weep with those who weep” (Romans 12:15). Rely on the Holy Spirit to help us come alongside. We can walk with him through the sudden emotional swings. He doesn’t have to explain why he is sad.” p.128
“Capitalize on his times of awareness to discuss important decisions.” p.135
“Even though Mom had been happy to give her car to her granddaughter, she still talked about missing it. We acknowledged her feelings and agreed it was hard to let the car go. I set aside my feelings of guild, and commiserated with her over the loss of her car. As time went on, she mentioned the car less and less.” p.142
“Empathize with her feelings of loss of independence and find ways to maintain her dignity, but don’t back down. Find alternate solutions for her transportation needs.” p. 141
About the patience we will need…“Patience, also known as steadfastness and endurance, refers to continuing on through difficult circumstances. As we know the goal and follow a set course, we continue to love her through all the changes. Even while suffering long, we choose to respond in love. We wait for her to put on her socks, providing aid only if she seems to be struggling and would like our assistance. We answer question again just as if this was the first time she asked. We answer her question again just as if this was the first time she asked it! We ignore snide comments or insults and continue with the need of the moment. Through all this, Christ, who endured more than we could ever imagine, will sustain us. We ask Him to share His love for our loved one with us. We patiently persist, knowing love conquers all.” p.153
Regarding safety concerns…“Poor lighting, lack of color contrast,, clutter, noise, and chaos of the home could be triggering some behaviors. The goal is to reduce anxiety and agitation by altering her environment. Some possible accommodations are: covering mirrors, reducing excess glare of dark shadows, labeling or removing family photographs, reducing noise or clutter, and reducing tripping hazards (such as low furniture or loose throw rugs).” p.172
Seeking the best possible care…“Sometimes, as the primary caregiver, you have to make an unpopular decision.” p.192
“Christ called us to love Him with all our hearts and to love others as we love ourselves. We can, and God will enable us to do this since love is a decision of the will. We move beyond feelings. Love acts for the other person in all circumstances…..We seek to find our ‘new’ loved one, to discover his current likes, dislikes, good times, capabilities, and skills. We seek to learn his new language, perceiving the messages he sends us with his body language, looks and tone of voice.” p.155
For more book of my book reviews click HERE
(NOTE: If you would like to receive posts directly by email, just sign up on this page where it says “Follow by email.” I will never share your email address elsewhere.)