Caring for a Husband with Parkinson’s Disease for 16 Years

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Carol and Jim were married for 66 years, and it was a true love story. However, the last 16 years were difficult since Jim suffered from Parkinson’s, and Carol was his primary caregiver. She cared for Jim with constant love during all those years. She says, “Jim was easy to care for. He was always upbeat and funny, and drew people to him. Plus, he had always taken such incredible care of our family, so I just returned the care.”

She says routine was the most important piece of the puzzle. Since she was an occupational therapist, she helped Jim exercise each morning before he got out of bed. Jim was always compliant and came to expect the stretches and the machine that helped him move his arms and feet. Carol also helped him practice writing and used the calendar to show him the passing of time each day.

Carol tried to make each day special. She planned frequent outings for him so he had something to look forward to. They also spent time outside relaxing as they had a lovely lake behind their house.  Carol was a fabulous cook and always made special meals along with Jim’s favorite desserts. Another thing that helped was their precious dog, who brought them joy.

She had a wonderful helper during the day, but Carol took over when the aide left. Of course, the nighttime wasn’t easy. One of the issues they faced was that some of his medications gave him hallucinations, but Carol could always console him and bring him back to reality.

She stayed awake until the wee hours of the morning, so she could turn him to prevent bed sores, and she slept on a small sofa near him so that he could have the bed to himself. Simply put, Carol was not a complainer despite all the difficulties they faced. Although caregiving was exhausting, she focused on her love for Jim and worked to remain positive.

Jim and Carol were staunch Catholics and prayed together each night saying the rosary and other prayers. They had an extremely strong faith that God was with them. Their church was an important part of their lives. Their friends at church helped build a shower for Jim on the main floor, since they had a two story home. Their priest was very helpful too.

Carol had a cousin in Dallas, who was very dear to them. Her cousin, George, helped them find a good doctor in Michigan, who specialized in Parkinson’s disease. George found him through the Veterans Association since Jim was a WWII veteran. They made many trips to Dallas, and George and his wife travelled to Michigan. The last time the two couples were together, Jim broke down and cried as if he knew it would be the last time.

Jim passed away two years ago, and Carol, at 90 years of age, is still living in their home and misses him deeply. She still feels fortunate that she was able to care for him for all those years.

What Helped:

  • The prayers that they said each evening along with the rosary.
  • Jim’s sense of humor – they laughed easily together.
  • Their church, including the priest and friends.
  • The wonderful aide who was there during the day.
  • Their precious dog.

Scripture Verse

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.

Prayer

Help us to remain steadfast in our love and care for others. Let us see Carol as an example of true love. She didn’t complain and always looked at the positive. As we approach Thanksgiving, we see that Carol had the true gift of gratitude for the blessing of Jim. Help us to thank you Lord, even for our trials as You carry them with us.

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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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Double Duty – Caring for a Husband and Father

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Ryan is a lawyer and was a world class athlete, so his diagnosis with Parkinson’s disease 15 years ago was a real “punch in the gut.” He also has other health issues like diabetes, as well as diseases that tend to go along with Parkinson’s, such as depression and Obsessive Compulsive Disorder. His wife, Kathleen, says they have tried everything including deep brain surgery, which has eliminated the tremors. His voice, which used to fill a courtroom, is now a whisper. They are seeing a Speech Therapist to learn to increase the volume, but most of the damage is already done. Parkinson’s is a very complex disease, so together the couple have explored all the potential therapies.

Kathleen says there were early signs of the disease when they were first married 38 years ago. One of her biggest worries is the falls he takes. Once when he attempted to play tennis, he fell and broke his arm. He still tries to work sometimes and loves giving legal advice – it makes him feel helpful. One thing that makes them feel better is recording stories about his legal conquests.

She says they love each other more now than ever. They enjoy the same things and still have fun together. One of their favorite outings is going to estate sales.  However, Kathleen does admit that she feels guilty sometimes doing their favorite things without him when it is just too difficult to bring him. She never leaves for long time periods, especially in the evenings.

Her husband has truly been the love of her life. She takes her wedding vows very seriously.  She feels “the for better or for worse, in sickness and in health” is not something couples can even begin to comprehend when they say them to each other. When things get difficult, Kathleen pulls out her wedding vows and reads them.

Ryan is usually in a good mood, despite feeling badly. Kathleen’s biggest fear is being without him. She admits that she suffers from “anticipatory grief.” Kathleen says, “When that happens, I compartmentalize by putting those thoughts in a place in my mind and try to ignore them. Then I plan things for us to do together now and make the most of what we are capable of doing at this stage. Most of all, I am grateful for what I have and have had with Ryan. I do feel lucky as Ryan is a good man, and I wouldn’t trade him for anyone else.”

Kathleen also cared for her father, who had dementia, in her home for four years. Even with the help of Home Health and Hospice, she definitely had a “full plate.” Her Dad was a sweet, happy man, but by the time of his death in 2007, he was a shell of the person she knew and loved. He was similar to Ryan in that he loved working when he was able and feeling needed.  Fortunately, Ryan was doing better during that period.

Caring for a parent is a whole different ball game. Kathleen says, “When you’re caring for a parent, you have to do physical things for them that can be demeaning to the parent.” But Kathleen was always mindful and respectful of her father’s needs.

She says, “God gave me good health and physical and mental strength to get through these trials of numerous illnesses with my Dad and Ryan. God gave me to Ryan, and I am always willing to help him out of love.” Friends are amazed by her happy attitude. She always has a smile on her face, even when she was pushing her father in a wheelchair at church years ago.

What has Helped:

  • She has a Girls Night Out group that meets regularly.
  • Kathleen’s attitude – she doesn’t carry resentment, but is a caregiver with a loving heart.
  • Both of her sons live in the same city and are willing to help.
  • Her ability to live in the present.

Her Favorite Prayer

Kathleen likes the prayer, “I complained because I had no shoes, until I met a man who had no feet.” She says there is always someone who is worse off than we are. She truly has an “attitude for gratitude.”

Prayer

Dear Heavenly Father, thank You for Kathleen’s caregiver’s heart filled with love, optimism, thanksgiving and strength – all given by You. Bless this special couple as they struggle with this terrible disease. Help them to know that You are right there with them carrying them through these trials each step of the way.

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Resolve to Maintain a Sense of Humor

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Somehow in the midst of caring for three elderly members of the same family, Denny and Judy have been able to find the endearing and funny moments in their difficult lives. They have been caring for Denny’s mother, Eileen, for four years in their own home, but they also cared for Eileen’s two siblings who are now deceased. They are very isolated as they have to plan everything around Eileen’s schedule, and she sleeps the majority of the day. They also operate their own business from their home, which eases the boredom but also contributes to the isolation. Their meals out of the house are typically at Burger King since that’s the easiest. There is just no way to plan anything, socialize, or have people over.

Denny exclaims, “It’s similar to house arrest!” They try to focus on the few and far between humorous situations. They even write down all of the funny and endearing comments and pull them out when they need a laugh. For example, Eileen’s sister, for whom they also cared, once said to Judy, “You are my bestest somebody!” Another charming statement was “Life is wonderful some of the time – but not too often.”

Denny says his wife has been incredible at caring for all of them, but they are his family, and he feels guilty because she didn’t sign up for this. All three of the family members have suffered from depression, and one had the added burden of dementia.

One thing that has helped tremendously is the dog, Gracie. The exercise of walking the dog is a great stress reliever for them, and Eileen greatly enjoys the dog too. Research shows that animals can be a huge source of comfort.

At times they get discouraged and feel they’ve had enough. While they were caring for his mother’s other two siblings, they constantly received calls from the homes they were in because of problems and had to move them several times. Three people in one family is a lot for two people to handle; however, they are not angry at his mother or her siblings, but at the situation itself!

But they haven’t let the situation defeat them. They retrieve past funny and sweet comments when they need them. Humor has been their salvation throughout all of these trials.

What Can I Do This Week?

  • Read a funny book or rent a comedy and share it with the family member.
  • If you don’t own an animal, consider getting a pet or have a therapy pet visit.
  • In this New Year, try looking for the lighter moments. Try not to take yourself too seriously.
  • Make a point of writing down funny or sweet comments when they happen.

Scripture Verse

Proverbs 17:22 A cheerful heart is a good medicine, but a downcast spirit dries up the bones.

My Prayer

Heavenly Father, help me to not take my situation too seriously. Let me cherish the funny and endearing moments. Help me to laugh often, relax, and know that You are with me all the way.

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How God Helps Us Face Guilt, Fear, and Hopelessness

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Jim has been caring for his wife, Susan, continually for three years since she had heart surgery and then a stroke with multiple complications, but actually, he has been caring for her for 64 years while she battled severe bi-polar depression. Jim has been a long-time caregiver, who also cared for a mother whose husband was an alcoholic and wasn’t around much. As an only child, he became a caregiver at a very young age.

After spending 59 days in the ICU after heart surgery and a stroke, Jim brought Susan home with Hospice, and she wasn’t expected to live long. Susan spent a year on a hospital bed in the living room unable to feed herself, so he fed her himself and took care of her every need. After her strength came back, she was stricken with cancer and underwent 15 radiation treatments. Throughout all of this, Jim kept pleading with God to give him more time with her. God answered his prayers!

Susan again survived, but experienced memory loss from the stroke and radiation, so Jim currently tells her stories of trips they took together and family vacations. She relishes those conversations. “It’s similar to taking care of a child,” he says, “And it’s one person doing a two person job.” It’s a 24/7 process. Although Susan sleeps 16-17 hours a day, Jim isn’t able to nap. Instead he uses that time to plan meals and do light housework.

Jim faced his own health problems and was in the ICU himself on oxygen for several weeks. When he returned home, Jim faced perhaps the most difficult time as he was still trying to care for her while he was sick himself. While their children all offer help, the majority of the care falls on him. Watching Susan become frailer brings on feelings of fear and hopelessness. He feels guilty when he leaves her even to go grocery shopping, and she worries when he isn’t there. Even though grocery shopping and occasional meals out with his children or a friend are his only time out, Jim still feels that guilt.

Jim doesn’t want Susan to feel like she is a burden, even though the situation is difficult both physically and mentally on both of them. The process of taking Susan to frequent doctor visits is completely exhausting for them.

The one thing that makes caring for Susan easier is her gratitude for everything Jim does for her. She is a gracious, kind, and loving woman who says thank you for each little thing all day long. Despite a very difficult life, she has always maintained her strong faith and is loved by many. Jim and Susan make a habit of praying together daily.

How Does He Cope With It All?

Jim says, “I pray out loud to my Lord every day. I thank Him continually for the day and for watching over us. I love my wife, children, and grandchildren, but first I love God. He is my greatest love!”

What Can I Do This Week to Face Guilt, Fear and Hopelessness?

  • I can read Scripture for consolation and pick up a good devotional to give me hope and calm my fears.
  • I can ask friends and family to visit more often and try to get out for short periods while the health aides are at our home, so that I don’t feel so guilty leaving her.

Scripture Verse: Joshua 1:9 “I hereby command you: Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go.”

Prayer: Dear Father, we know that You are always with us. Help me each day to thank You for the blessings of the day. Thank You for another day with my loved one – for this gift of Your protection! Give me the strength I need to get through just one day at a time. Help me to feel less guilty and fearful, and instead be hopeful so that I can offer the best care possible.

 

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