Coping with Progression of Alzheimer’s Disease

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.

Prayer:

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.

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Celebration of an Extraordinary Caregiver’s Life

We just celebrated the life of Donald Bowen, our father. I would like to share a snapshot of his life with all of you, my dear friends.

Dad was born on Oct. 30, 1929 to Theodora and Aaron Bowen in Detroit, Michigan.  Dad did not have an easy childhood. He was an only child and took on the tremendous responsibility of caregiver for his mother at a very young age when his father left the family. He and his mother moved frequently, which meant that he often had to change schools, making friendships difficult to maintain.

He married when he was only 21 years old to Carolyn Karrer, who was the love of his life. He told her from the beginning that he wanted a large family so that he could experience being part of one. He wanted what he hadn’t experienced as an only child. He wanted fun, laughter and stories to tell, and he definitely got his wish. The Bowen stories are countless – nothing is off limits, including his funeral notes! Just one that I can’t resist sharing. He asked to be cremated, and my brother, Dave, was chosen to be the keeper of the ashes. In his funeral notes, he told Dave to keep his hands off the ashes! That was Dad – he had a wicked sense of humor, and he always had the last word.

The six children include: Nancy, Bob, twins Mary and Martha, David, and Jim. He faced a parent’s worst nightmare when Martha, my sister’s twin, died suddenly at 18 months of age. He was the one who was called to the hospital when she was dying. After her death, he had a difficult time speaking about her.

He especially loved having grandchildren. Each one was special, and he loved sharing stories with them. My son, Ryan, came home to see him the weekend before he died. What a great day they had recounting those memories together. He was a great grandpa and mentor to all of them.

He loved to travel. My daughter, Laura, says that her last long conversation with Dad was about trips he took. She was in France when he passed away, so she toasted her grandpa one more time from there. As a family growing up, we had countless camping, beach, and skiing trips, and typically our cousins from Michigan would come too. Often we would have seven kids, two dogs, along with Mom and Dad in a pop-up trailer. To this day, we love to recount funny memories from those times.

He also loved animals and always wished that he could have been a veterinarian. As a matter of fact, he hung a picture of our beagle, Holly, above the mantel where we told him the family picture should have been.

Dad was a champion labor negotiator with a difficult job that involved a lot of travelling. He could be tough as nails during those negotiations, but he always had a kind heart. He was a stern father, but we never doubted that he loved us. He was a man with a strong will who ran the show until the end. When he was admitted to the hospital during his last week with us, he immediately told the nurse to put a sign on the door saying not to awake him before 8 a.m.  That was true Dad.

We found an absolute treasure in his personal belongings. My father wasn’t much of a writer, but he had handwritten personal letters to each of us, including Mom, awhile back. The gift of those notes was  priceless to us!

We also all enjoyed reading his handwritten notes about his funeral. The first thing he said was to make it joyful. He said he hoped to see his God and would wait to see each of us. He also said that he wanted an Irish wake style funeral complete with funny stories and toasts.

He ended his notes with this paragraph, labelled “The Most Important.” He said, “How fortunate that I married young to my lovely wife, and we have the most beautiful children God could give us. Each one of you have made me proud and how much I love all of you, including the in-laws. My love to each of my grandchildren whom I deeply love. Remember me in your prayers.”

What Has Helped:

  • Faith and prayers help the most.
  • Family and friends.
  • Remembering our stories.
  • Reading his funeral notes.
  • Reading his handwritten letters to each of us.

Scripture Verses – These two verses seemed symbolic:

Jeremiah 8:18 My joy is gone, grief is upon me, my heart is sick. (upon Mom’s death)

II Timothy 4:6-8 For I am already being poured out like a libation, and the time of my departure is at hand. I have competed well; I have finished the race; I have kept the faith. From now on the crown of righteousness awaits me, which the Lord, the just judge, will award to me on that day, and not only to me, but to all who have longed for his appearance. (upon his death)

Prayer

Dear Father, please comfort the caregivers who are grieving. Many of them are living in darkness right now. Help them to feel Your constant presence. You never desert us – rather Your love and peace surround us always. Bless our family with the knowledge that our parents are together again and with Martha, too. We thank you for the time we had with them on this earth. Help us to live our lives as a tribute to them.

A heartfelt thank you to all of our family and friends for your support and prayers during this difficult time with losing both parents. Your love and friendship have meant the world to us.

Please click here to listen to a beautiful song perfectly suited for our parents.

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