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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A Critical Care Doctor Discusses End of Life Issues

doctor

Ryan Brown, M.D., a Critical Care doctor at Vanderbilt Medical Center, offers some excellent advice for caregivers. First, he says having an explicit plan beforehand takes away a lot of stress when the patient is in the Intensive Care Unit. When that plan isn’t in place, he sees a lot of dissent between family members, as well as guilt if they don’t do everything possible. The goal is to be the patient’s voice if they can’t tell you what they want. He also recommends that for elderly patients, a gerontologist should be a part of the discussion beforehand since they can be very helpful and can take a lot of stress off of the caregiver.

Dr. Brown says, “Caregivers need to think about what should we do versus what can we do. Do you want to prolong life if the patient is truly suffering or do we want to make them comfortable and let nature take its course? Death is part of life, and the beauty of death is that God is calling them home.”

Dr. Brown says there is no need to fear death, and his hope is that the caregiver doesn’t feel guilty when the patient does die. Also, he emphasizes that there is so much doctors can do to make the patient comfortable now, and Hospice is a huge help in allowing the patient to die at home versus the hospital. He believes that God doesn’t want us to suffer at the end of life when there are ways to help. Dr. Brown has watched many people die comfortably.

He says caregiving is a difficult job with a lot of burnout. It is very important for the caregiver to take care of their own health. These days since most people live longer and die of chronic diseases such as heart disease and cancer, the caregiver’s role can go on for a long time. Dr. Brown typically sees caregivers at the end of their patient’s lives, but the gerontologist sees them throughout the process. He says it’s also very important for caregivers to establish a trusting relationship with the patient’s doctors to fully utilize their experience.

What Helps?

  • Have a plan of action while the patient is still lucid and share the plan with all family members.
  • Talk with your gerontologist about different scenarios.
  • Trust your doctors.
  • Do not fear death.

Scripture Verse

John 3:16 For God so loved the world that he gave his only Son, so that everyone who believes in Him may not perish but may have eternal life.

Prayer

Lord, bless these special healers who are doing Your work here on earth. Give them strength and faith to take the best care possible of their patients. Help them to be an aid to the caregivers as they face difficult end of life decisions. Help us to remember that God calls all of us home as death is a part of life. Death is not to be feared, especially since our stories will end well.

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Caring for a Vibrant, Young Wife and Mother Stricken by Cancer

Kathy

Stacy was a lively, fun, and outgoing young woman with terminal Merkel cell cancer. In addition to being an A+ wife, mother, sister, and daughter, she was an impish prankster who loved to play jokes on family and friends. In short, she was fun to be around. She was devoted to her husband, Mike, and to her two girls whom she considered her greatest achievements.

She had a very tight bond with her sister, Karen, as they were close in age and always looked out for each other. Both sisters and Mike loved the beach, and this picture of Stacy in the ocean is still one of their favorites.

Her journey with cancer began when she was 37 years-old with Merkel cell cancer in 1996. She was pregnant with her first child, so she couldn’t do chemotherapy, but she did have the tumor removed. She became pregnant with her second child in 1997 and gave birth in March, 1998. In mid-September of 1998, the doctors found that the cancer had metastasized to her liver.  The medical community didn’t provide any options at this point. Her family, including her parents and her brother, Jim, were distraught.

Her fight only lasted for three and one-half months, but it was a painful and exhausting time. During those months Mike, Karen, and brother-in-law, Dave, tried every kind of alternative treatment possible to cure her, flying all over the country looking for hope. Stacy went along with the trips mainly for them, as she already had a feeling that she would die.

“Stacy made it easy to care for her while she was sick,” says Mike, “she was always coherent, fluid, and good company and was never a complainer.” He says she was self-sufficient and independent as long as she could be. Mike said he always had a guarded attitude about the cancer returning, so in some small way he was prepared. Their girls were lifesavers who distracted them from the cancer issues, and Mike says that their time alone was always pleasant. In a nutshell, Mike says, “She made all of us better people! She was at her best even when things were at their worst.” They had dated since they were 15, so they had a long history together, which made losing her even more difficult.

Karen and Dave kept her at their home for three weeks so that Karen could help her beloved sister, but she was at home with Mike and the girls for her final two weeks. Karen set up prayer meetings for friends and family on Monday evenings. Karen says that Stacy was always better on Tuesdays – she had more energy and a better attitude. She knew that she was dying. Raised in the Catholic faith, Stacy had a special devotion to the Blessed Virgin Mary. Saying her rosary brought her peace and reassured her that everything would be alright.

Since Karen and Stacy were extremely close sisters, Karen had a difficult time relinquishing control. Karen is a person of action and desires answers, so losing her treasured sister in this way was very difficult. Although she didn’t understand why this was happening, Karen found peace in the Bible, especially those verses that deal with wisdom versus understanding and knowledge.

Stacy was born on Christmas Eve, 1959 and died on New Year’s Eve, 1998 at exactly 3:00 p.m., which is the Hour of Mercy in the Catholic Church. Hers was a very peaceful death surrounded by her caregivers. She accepted her death with grace and knew that she was in God’s hands.

What Helped Her Caregivers:

  • Trying to maintain a normal schedule, as much as possible.
  • Since her daughters were so young when she died, Karen made some tapes of their beautiful mother for them.
  • The weekly prayer group.
  • Isaiah ministry for Karen.
  • Karen read the Bible to Stacy.
  • Mike says work was very helpful in letting him work shorter days so he could care for his family.
  • Grief support groups were a major help for both of them after her death.

Scripture verses

Mathew 18:20 at prayer meetings:  For where two or three are gathered in my name, I am there among them.

Luke 23:43 He replied, “Truly I tell you, today you will be with me in Paradise.”

Hour of Mercy Prayer: At 3:00, implore My mercy, especially for sinners; and, if for a brief moment, immerse yourself in My passion, particularly in My abandonment at the moment of agony.  This is the hour of great mercy….In this hour I will refuse nothing of the soul that makes a request of me in virtue of My passion.

Prayer

Dear Father, thank you for the life of Stacy, who touched so many people during her short life. Her example of faith during such difficult days was truly amazing to those around her. Your precious peace always surrounded her, and she truly surrendered to Your will. Her prayers were answered. Help us to learn from her example.

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Helping the Critically Ill Patient Face the Fear of Death

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John’s mother, Katherine, often says, “I just wish I would die. But I’m a coward – I’m afraid to die.” There is a pattern in John’s family of the elders thinking they are not going to heaven which makes the fear of death so much worse. How do you handle it when your dying patient doesn’t truly believe that when we confess our sins, they are forgiven?

This is such a struggle for the caregiver facing this problem. How do you help your loved one let go of this life when they don’t believe that they are going somewhere infinitely better? Perhaps they may tell you what they did that they believe will keep them out of heaven. If so, reassure them that God has already forgiven them for that sin. You may have to continue to reassure them as these thoughts continue to plague them.

John relates that Katherine has come close to death numerous times, but she won’t let go because of her fears. It is agonizing for John to watch her to continue to suffer. Often depression enters into this equation. For example, Katherine tends to fixate on never seeing God in Heaven and then becomes extremely anxious and depressed.

Max Lucado writes in his book,  A Gentle Thunder. “Nothing can separate us from the love of Christ (See Romans 8:38-39 below)…but how difficult it is for some to embrace this truth. You think you’ve committed an act that places you outside His love. A treason. A betrayal. An aborted promise. You think He would love you more if you hadn’t done it, right? You think he would love you more if you did more, right? You think if you were better His love would be deeper, right?  Wrong, wrong, wrong. God’s love is not human. His love is not normal. His love sees your sin and loves you still. Does he approve of your error? No. Do you need to repent? Yes. But do you repent for his sake or yours? Yours. His ego needs no apology. His love needs no bolstering. And he could not love you more than he does right now.”1

What Can I Do to Help Relieve This Fear?

  • Have the person confess their sins or talk to a pastor.
  • Talk to the family member about fear and forgiveness.
  • Read Scripture verses that deal with forgiveness.
  • Find books or other devotionals about forgiveness.
  • Remind the person that whenever they stumble, the Lord is there to help them up.

Scripture Verses

1 John 1:9 If we confess our sins, He is faithful and just, and will forgive us our sins and cleanse us from all unrighteousness.

Romans 8:38-39 For I am sure that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

My Prayer

Heavenly Father, You already know our wrongdoing so there is no need for us to hide it from you. You have already forgiven us for all our sins through Your son’s death on the cross. Help us to forgive ourselves. Take away our fears and replace them with Your peace so that we know for sure that we will face eternity with You. So help me right now to confess my sins and receive Your forgiveness, cleansing, and healing.

 

Max Lucado, A Gentle Thunder (Nashville: W. Publishing Group, 1995) 47-48.

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