A Lesson in Patience and Endurance

Maria shares her powerful story of caring for three family members over a period of 14 years. She cared for her mother with Alzheimer’s Disease for the entire time. Back then it was not a well-known or well-researched disease. Her mother had always been a kind and sweet woman, but she became another person – one who yelled and hit others. Her father didn’t understand the disease at first as he thought she was just being stubborn and unkind. But eventually he did accept the fact that she had a disease.

Maria is from Portugal where it is common practice to care for your elders, and Maria didn’t think twice about it. She also cared for her father, who had prostate cancer for five years, as well as an aunt with multiple health issues. She brought her family members into her home while also caring for her own family.

Maria says, “It was difficult spiritually, physically, and psychologically, but it was a learning experience, and I discovered my own strength.” However, she admits that she often felt overwhelmed and frustrated. She developed terrible eczema affecting her hands, which kept her from the very things that helped her relax like knitting and crocheting.

Also, her mother fell and broke a shoulder as well as a hip and was bedridden for eight years. Bedsores were always an issue, so Maria helped lift and turn her mother. She developed problems with her spine due to the heavy lifting she was doing.

Maria had also faced her own health issues. She had a tumor on her pituitary gland that she developed when she was 26 years old.  Her family has always practiced the Catholic faith. Before her mother became sick, she made the pilgrimage to Fatima to ask Our Lady to help her daughter, and her prayers were answered as Maria never needed surgery.  

The caregiving experience took a great toll on her marriage, and her husband divorced her after almost 30 years of marriage. It also alienated her daughter for a while. She faced terrible feelings of abandonment and sadness, but with God’s help, she persevered.

Fortunately, Maria is a “little energizer bunny” with a wonderful sense of humor. Also, she is slow to anger. All of these traits helped her to endure all of the difficulties in her life. She is an amazing example of faith to all who know her.

What Helped:

  • Her tremendous faith.
  • Her work as a church librarian.
  • Staying busy and active.
  • Reading Scripture.
  • Reading books about Alzheimer’s disease.

Scripture Verse

James 1:2-4 My brothers and sisters, whenever you face trials of any kind, consider it nothing but joy, because you know that the testing of your faith produces endurance; and let endurance have its full effect, so that you may be mature and complete, lacking in nothing.

Prayer

God, You put beautiful examples of faith in our lives for a purpose. Maria has been a beacon of light to everyone she touches. You helped her to persevere through so many trials, and she never gave up. Help each of us to endure our own trials with patience and joy.

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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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Siblings Work Together to Care for Mother with Alzheimer’s disease

Siblings Sherri, Jacque, and Mike have learned together how to care for Dorothy, their 81-year-old mother with Alzheimer’s disease. Although they don’t all live in the same city, they have worked well together – each bringing their own strength to the situation.

It has been a long journey. During Christmas of 2009, it became obvious from her behavior that Dorothy needed help. She was diagnosed by a neurologist in early 2010. During 2012, the family realized that she could no longer continue to live alone. After three attempts, they found the right home for her. Since then, they have been able to divide the care.

Jacque lives away from her siblings, so she deals with paperwork issues like renewing insurance plans, maintaining retirement package updates, etc. She’s also the most informed regarding the latest medications, so she often provides insight when they are discussing medication changes with one of the doctors. She sends Dorothy special treats throughout the year, like roses on Valentine’s Day. When she returns to St. Louis, Jacque always schedules one or two days just to be with Dorothy. Both sides of the family are in St. Louis and want to see Jacque, but she makes time alone with her Mom her priority.

Mike has been the “man” of the family since their dad passed away 20 years ago, so he has always handled Dorothy’s finances and big decisions such as selling her car, home, etc. He keeps Jacque and Sherri in the loop and asks their opinions. He is her power of attorney for both legal and health issues. Mike is the primary caregiver for her more now that he is retired, so he stays busy taking her to doctors and other appointments. When Dorothy gets out of sorts and refuses her medicine, Mike seems to be the only one who can persuade her to take it. So he handles those kinds of phone calls as well.

Before Mike retired and was able to help more, Sherri was the main caregiver. She was working part-time, raising a family, and is a pastor’s wife, which means she has an extremely busy life. Even though she handled all of the shopping and doctor appointments, she still felt guilty that she wasn’t there enough. And of course, there were times when she was simply overwhelmed.

Sherri says she learned three valuable lessons from caring for her mom. First, Sherri says, “I’ve changed as much as she has.” In the early stages of the disease, Dorothy was upset about everything, and Sherri took it very personally. She learned the hard way how to diffuse the situation. She says now that although it still makes her sad, it is no longer personal.

She says, “Lesson two was to learn to love her as she loved me – a mother’s love in reverse. I want to model that for my children. That no matter what, that is how you love.” She has a special needs son with Asperger’s Syndrome, and it is especially important to her that he sees this example.

Lesson three, according to Sherri, has been to become an advocate for her mother. She realizes that her mother doesn’t have the words to describe how she is feeling and doesn’t know the questions to ask, so Sherri has learned to be her voice – her mouthpiece.

The progression of this disease has been difficult to watch as their mother was one of the smartest women they have ever known. She worked in management for McDonald Douglas back when women just weren’t in management. She was a trendsetter and a very strong, independent woman, even after being a widow for 20 years.

The siblings have found new ways to connect with their mom. Pictures in photo albums help to jog her memory and initiate conversation. Her long-term memory is better than her short-term memory.  She still remembers words to old hymns and loves to sing. The family has learned to adjust to all the changes in their lives with God’s constant help. They feel that God has turned the negatives of this disease into positives.

What Has Helped:

  • Prayers have played a huge part.
  • Meditation.  
  • Sherri’s church members have adopted her mother.
  • The book, Creating Moments of Joy, by Jolene Brackey.

Scripture Verses:

John 13:34 I give you a new commandment, that you love one another. Just as I have loved you, you also should love one another.

Philippians 4:13 I can do all things through Him who strengthens me.

Prayer: Dear Father, these siblings model Your unconditional love for us. Continue to give them strength and hope. May we all learn valuable lessons about life and living from following Your perfect example.

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Caring for a Wife with Alzheimer’s for 18 Years

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This is truly a story about commitment to wedding vows “for better or for worse, in sickness and in health.” Bob Jagers married his wife, Rose, when he was just 23 years old, fresh out of the Navy. They were married for 65 years. Rose was diagnosed with Alzheimer’s disease at the age of 70, but Bob says she had the symptoms for several years before that. He spent that time searching for someone who knew what was happening to his wife. He wrote down everything she was doing, and he finally found a neuro-psychologist who understood. Bob says he cried long and hard and prayed a lot during that extremely difficult and frustrating time. While she didn’t “act up” in front of others, he took the brunt of her frequent angry outbursts. These outbursts could last for five minutes or for an hour or longer. Bob says, “The more I fought against the situation, the more difficult and longer the outbursts became.”

Once he got the diagnosis, Bob began going to workshops and seminars to educate himself about the disease, and today he stresses how important education is. Bob also started and ran a support group for ten years when they were living in Michigan. He learned some important lessons during that time. He learned that his reactions to Rose’s issues were creating undesirable reactions from Rose.  For example, when she threw food on the floor, his initial response was, “Why do you throw the food on the floor? Now I have to clean it up,” to which she often replied, “Good.” After he was educated, he would say, “Wow, you are changing the flavor of the food.” He learned that his responses were part of the problem.

Bob’s offers this advice, “Don’t be put on the defensive by the incidents; instead try to use laughter or a compliment to diffuse the situation.” He also tapped into her interests. Rose enjoyed watching birds so Bob put out bird feeders, and he used old photographs to keep Rose out of her “dark holes.” He also hired a woman to help care for her and that changed her whole attitude and made him feel much better.

Bob stresses the importance of caregivers taking time out for themselves. In Bob’s case, it was tutoring children. When Bob retired, Rose encouraged him to tutor and often came with him. It turned out to be a meaningful escape, so he has tutored for 17 years. Today, Bob tutors at Bea’s Kids and thoroughly enjoys it.

Bob is a fascinating man who has published two books titled, Whales of WWII: Military Life of Robert Jagers June 1942 to October 1945 and Inedible BLT, which stands for Bob’s Lesson Today. He is about to publish a book about his life experiences, including caring for Rose. He received the Purple Heart for his injuries in the war and is a popular speaker.

When Rose was 85 years old, Bob’s back problems became so severe that he could no longer care for her himself, so they moved from Michigan to Carrollton in 2007. He had to put her in an assisted living home while he lived with his daughter. But Rose was very unhappy there, so he moved her to a second home, which was better. Bob feels that all the moves, including the move from Michigan to Dallas, were very traumatic for her.  

Rose passed away in 2011, and Bob still misses her. He was a steadfast caregiver with a deep faith and prayer life. He was a husband, who took his wedding vows very seriously.

What Helped:

    • Educating himself about the disease.
    • His tutoring work – finding some meaningful work to do.
    • The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life by Nancy L. Mace.
    • Laughter, giving compliments, and making jokes.

Scripture Verses:

1 Corinthians 13: 1-3 If I speak in the tongues of men or of angels, but do not have love, I am only a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing. If I give all I possess to the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing.

Prayer:

Dear Father, thank you for this example of a strong marriage. You gave Bob the strength and patience to care for dear Rose. He learned many lessons about the disease and the most important lesson of all, he learned to remain steadfast in Your care.

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Priest Cares for Parents Joyfully

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Father Ferrnando Carranza, Rector of the Redemptoris Mater Seminary in Dallas, provides care for his elderly parents there in the Seminary. While he has a team of caregivers working 24/7, he is still ultimately the primary caregiver. The Seminarians also enjoy contributing to their care. Although caregiving and his work can be stressful, he says the Lord sustains him.

His 86 year old father, Daniel, has Parkinson’s disease and has had a stroke. His 87 year old mother, Maria, is in the last stage of Alzheimer’s disease. Despite Daniel’s medical condition, Father Carranza says that his father is at peace. Daniel’s mind is still working, and he is happy. Father says, “God has made Himself known to him, and peace is one of God’s gifts to him.” He continues, “It is amazing the love God has for us, especially for those who are suffering, and how God provides for us.” In many ways, he has never seen his father happier – he has the joy of a child and a heart as simple.

Even his mother with Alzheimer’s has moments of happiness, and Father treasure those times. While her illness causes her to be been confused, angry, and violent, she has moments of peace. At one point she stopped eating and sleeping and had a psychotic episode. After a trip to the Emergency Room, they were able to balance her medication. So now there is a new normal. While she doesn’t speak English, she loves to sing along during the Masses at the Seminary, and that is encouraging to Father.

While the doctors recommended Hospice several years ago, Father has let nature take its course. “It is amazing what love can do,” says Father. His deep faith brings him peace and gratitude.

What Helps:

  • His profound faith.
  • Having people to talk to and confide in.
  • His team of caregivers.

Scripture Verses

The chorus of the song “You are Mine” by David Haas seemed appropriate for this situation:

“Do not be afraid, I am with you. I have called you each by name. Come and follow Me. I will bring you home. I love you, and you are mine.” The following Bible verses fit with the theme of this song:

Isaiah 41:13 For I am the Lord your God who takes hold of your right hand and says to you, do not fear; I will help you.

Isaiah 43:1 Do not fear, for I have redeemed you; I have called you by name, you are mine.

Jeremiah 29:10 Then I will come and do for you all the good things I have promised, and I will bring you home again.

Prayer

Dear Father, help us to appreciate how well You take care of us. Your peace and love surround us. Help us to appreciate the joys and blessings of old age as they are part of life and be grateful for the time we have with our loved ones.

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Caring for a Father with Alzheimer’s Disease

 

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Margie gives this advice for taking care of a parent with Alzheimer’s disease: First, believe you can do this. Second, ask God every day to make you stronger than the previous day. Third, find something that takes you away from the daily routine.

Margie and her husband, Mike, cared for her father, Eduardo, from the onset of the disease, which began shortly after her mother died. Her father showed signs a few years before the disease progressed, but needed round-the-clock care for the six months before he died.

Her biggest struggle was time management with caring for her father, her own family, and working full-time. She says, “Mike, and I were like robots – we hardly took any time off, but our jobs were our escape.” But while her fellow workers were supportive, they didn’t know the full extent of the situation at home.

They did hire a caregiver during the day, and Margie and Mike took over at night.  Fortunately, Mike, was a tremendous support, especially since it wasn’t his father. Margie calls Mike her biggest blessing and adds that it made her marriage even stronger. Her 20 year-old son, Luis, saw “love in action” first hand and still talks about it today. She also had support from her brother, Jimmy, and the rest of her extended family.

Although they were overwhelmed, they didn’t focus on it because there was so much happening – they were “on” all the time and they were just too tired at night to reflect on it. It was completely exhausting for them.

Self-judgement was always an issue. They continually wondered if they were doing enough and thinking that they were not. Margie says, “Funny, time doesn’t make this better – I still question whether we did enough.” This is a common feeling with which most caregivers can identify.

There was never any question that they would take care of her father. Margie had lost her mother and two brothers, so she was very familiar with loss. She had promised her mom that she would take care of her dad. Her Hispanic background and close relationship with her mom made this decision an easy one when she was asked. It was something natural that she and her brother just knew was going to happen for the parents who had given them so much all of their lives.

Her father rapidly declined over the six months before he died. He became more agitated during conversations, was confused, and didn’t recognize them. They did have Hospice for a short while before he died, but that was still an extremely difficult time.

It was Margie and Mike’s strong faith and prayer life that got them through these challenges. Margie was a devoted daughter, who wanted to give back to the father who had loved her completely during her whole life.

What Helped:

  • Family support.
  • Her deep faith.
  • Her background.
  • Spending time together as a couple and a family.
  • A change of scenery, even going out into the garden.

Scripture Verse:

Mathew 19:26 But Jesus looked at them and said, “For mortals it is impossible, but for God all things are possible.”

Prayer

Dear Father, thank You for the blessings of a supportive spouse and family. Thank You for giving me the energy to care for a family member while working. You provided all that I needed, and You were with me each step of the way.

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The Lessons of Caregiving for a Family Member with Alzheimer’s Disease

Clara

June is Alzheimer’s and Brain Awareness Month. Happy Father’s Day to Our Special Caregiving Fathers!

The Lessons of Caregiving for a Family Member with Alzheimer’s Disease

Cathy’s mother-in-law, Clara, who came to live with the family in June 2015, just turned 80 years-old and has dementia caused by Alzheimer’s disease.  Cathy and her husband, Fox, had just celebrated their 30th anniversary and were enjoying an idyllic life as a couple with their college-graduated son, Reggie. They learned that being openly available to God’s will in their lives is more than just lip service. They were planners and busy people, who didn’t like to sit still. At first it was very difficult as it greatly changed their family dynamics and limited their regular activities.

Over the past 25 years, sweet Clara had suffered many losses, including her parents, two of her sons, and then her husband. Fox is her only remaining son. The stress and pain of these losses surely contributed to the rapid decline of her mental health, as she is very healthy physically.

Since Clara had always been a very social person and a consummate hostess, they decided to enroll her in a day care center where she has activities throughout the day. Clara has improved greatly – she is much more alert and excited about life since they made that decision. She just celebrated her birthday with her family and friends there.

They are always looking for ways to bring Clara into family activities more often. For example, Clara loves gospel songs, so on Sundays they tune into Gospel music and sing. Cathy even bought Clara a headset for Christmas. Clara truly enjoys this activity, and it is fun for the family.

Cathy says her husband and son are similar to Martha and Mary from the Bible. Fox is the “Martha” person, doing such a great job of caregiving, making sure she is always comfortable and has all her needs met. But Reggie is the “Mary,” who walks in the room and heads straight for his grandmother giving her a big bear hug, and they giggle and hug like school children.

Instead of becoming overwhelmed, they have learned to take it day by day and find solutions that can fit into their family dynamics. They know now that Clara has been a special blessing in their lives.

What Cathy Has Found to be Helpful:

  • Reading Scripture has been a huge comfort to her.
  • An activity basket for Clara with clothes that need folding or socks that need to be matched. It helps Clara to feel useful and helps improve brain functioning.
  • Cathy’s support group.
  • Daily exercise like walking and yoga.
  • She recommends a book called, The 36 Hour Day:  A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss by Nancy L. Mace and Peter V. Rabins

Scripture verse

Cathy particularly likes this verse as it refers to sons returning hospitality to their mothers’ as Fox is so good to his mother.

1 Timothy 5:4 If a widow has children or grandchildren, let them first learn their religious duty to their own family and make some repayment to their parents; for this is pleasing in God’s sight.

My Prayer

Thank You Lord for the gift of Clara to this family. She has taught them so many important lessons: to be still, slow down, be more patient, embrace routine, and be more attentive to the needs of others. We never know where life will lead us, so teach us to keep our eyes fixed on You as You are the Way, the Truth, and the Life.

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