Elaine and Jim have been married for 54 years, and she has cared for her husband for the past 10 years. He was diagnosed with dementia in 2011, but he had symptoms for the previous four years. Elaine realized early on that life as she knew it was over. She has had to adjust to “a new normal.”
As the disease progressed, Jim became increasingly agitated. He lived in the past and constantly said that he wanted to go home, not realizing that he was already there. For eight years, Elaine was able to manage as the primary caregiver with adult day care for five half-days per week. But things began to unravel as Jim had two back-to-back urinary tract infections, a fall, a blood clot, and resulting incontinence. These became game changers, and Jim’s doctor encouraged her to find a facility as Jim needed more care than Elaine could provide. Plus, Jim had Sundowner’s symptoms of late-day confusion with increased agitation. His goal became getting out of the house. Elaine had to secure their home, and she was always concerned that he might get out somehow.
Elaine says that the decision to place him in a memory care facility was painful and heart-wrenching as she felt like she was abandoning him. While she realized that Jim needed a safer environment with 24/7 caregivers, that didn’t ease the initial guilt she felt and still feels. Elaine turned to prayer, and she also received support for her decision from other caregivers and friends.
Jim is very content and safe at the facility, and he has never asked to come home. He has activities and routine, which are very important. And he has devoted caregivers whose mission is to care for him. Elaine is very appreciative of the care he receives there.
She has learned that she has to take good care of her own health in order to care for Jim. While she is there with him daily, she does take short breaks to maintain her own emotional health. Elaine sees herself as the primary advocate for his care, and that is the main part of her life. She says, “My dual purpose in life is to keep myself well so that I can oversee Jim’s care.”
Elaine describes how very draining and overwhelming caregiving is. She emphasizes that being the caregiver of a spouse is very different from caregiving as an adult child. Elaine is a very realistic person and feels that educating yourself about the disease is extremely important. Alzheimer’s disease is a terminal disease. A memory care center is just that – not a rehabilitation center. Dementia patients don’t get better. This is so difficult to accept and, in Elaine’s case, is possible only through the grace of God.
She says, “The grieving never stops. Every loss of another ability produces more grief. It is so difficult to watch Jim decline, and this is such a progressive illness.” Elaine prays that Jim finds freedom from his earthly body and its limitations. In many ways, she feels that she has already lost her husband.
Elaine walks daily and prays as she walks. She says everyone must find what works for them. Elaine is very grateful for the support she has received through caregiver friends, meetings, books, and the Alzheimer’s Association website. She has learned to say no to things that drain her energy, and she ignores criticism as it isn’t helpful.
“I have learned unconditional love of my spouse through this disease,” says Elaine. She has also learned that her relationship with the Lord is most important as she walks through this difficult journey.
What has Helped:
Elaine recommends the following books to educate yourself about this disease:
- Coping With Alzheimer’s, by Rose Oliver, Ph.D. and Frances A. Bock, Ph.D. This book was life-changing for Elaine as it focuses on the caregiver. It truly helped her cope with the new and ongoing behaviors of her husband.
- Loving Someone Who Has Dementia, by Pauline Boss, Ph.D. Elaine reads this book every month or so. It encourages her to accept that her life has changed, and that it is up to her to come to terms with the new reality
- Untangling Alzheimer’s, by Tam Cummings, Ph.D. This book gives a thorough understanding of this disease for family and caregivers. The end of the book deals with the end stages of Alzheimer’s disease, which is difficult to read.
Scripture Verses – Elaine finds the psalms especially comforting.
Psalm 23: The Lord is my shepherd; I shall not want. He makes me lie down in green pastures; he leads me beside still waters; he restores my soul. He leads me in right paths for his name’s sake. Even though I walk through the darkest valley, I fear no evil; for you are with me; your rod and your staff—they comfort me. You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows. Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord my whole life long.
Dear Father, help us to remember that our strength comes from You. Help us to trust in You to handle every aspect of our life, and teach us to accept life just at is right now. Only You can give us Your peace and comfort during the deep valleys in our lives. You remain ever near to us on our journey of life.