Caring for Both Parents with Alzheimer’s Results in a New Mission for the Caregiver

Happy Thanksgiving to all!

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Molly’s story is one of triumph over darkness by using her greatest strength to give her a new purpose and begin a new mission. She was the dutiful daughter and caregiver of both parents with Alzheimer’s disease. Her father was diagnosed in 2008 and passed away in 2011. Her mother passed away from the disease in 2012. Her parent’s experience haunted her, and she often felt guilty that she hadn’t done enough.

During the agonizing experience of caring for both of them and also going through a painful divorce, she relied on her journal writing to help her through this very dark period in her life. She was an established writer and poet, and writing was her therapy. It helped her to put down on paper difficult feelings, such as guilt, anger, and feeling totally overwhelmed.

In the midst of these very dark times, Molly decided to go back to school to earn her master’s degree in poetry. She says, “It was something good for me. It was a comfort and escape and a positive way to reach for the future.” She enrolled in graduate school at Lesley University in Cambridge, MA. It was a “low-residency” program because it required only four weeks at the university (two weeks each year). The rest of the rigorous program was done from home, one-on-one with a professor. Her degree is an M.F.A, Master of Fine Arts (in Creative Writing). This program, along with her poetry, helped her get her footing again. Little did she know at the time that poetry would turn into her mission of helping those with Alzheimer’s.

She felt that poetry is similar to music in terms of being rhythmic and easier to remember.  She had an epiphany that she would use poetry to reach persons with Alzheimer’s. She started with one presentation to a new memory care center, and that was the beginning of a new purpose and mission, called Mind’s Eye Poetry.

Basically, she found a way to interact with dementia patients on their terms and be able to help them maintain their dignity, and in the process, help them reclaim a sense of empowerment.  She says that people forget there is more to caregiving than keeping people safe, clean, and medicated. She also believes that even though it is a fatal disease, these people deserve more than just being kept busy.

She says, ”It not only dehumanizes those for whom so much is being lost, but may, in fact, speed up the disease process. Until the final stages of the disease, people living with dementia can love, laugh, create, and imagine. No, they may not be who they were before the illness, but we fail them when we pronounce them, “gone”.”

She believes that they should be treated as a person first and patient second. It was with these beliefs in mind, that she founded Mind’s Eye Poetry. Her original idea has grown immensely, and she has been doing these presentations for three years now. Click here to go to her website and get more information about her poetry presentations.

Molly says, “Through the use of poetry facilitation, I help my poet/patients access memories and imagination. I turn those memories and imaginings into poems using their ideas, phrases, words, and even non-verbal cues. The resulting poems are stunning—testaments to the human desire for creative expression.”

She emphasizes “I know, without a doubt, that up until the final stages of the disease process, people with Alzheimer’s have the potential to be vital, engaging, creative individuals. We need only go on the journey with them, not expect them to remain within our narrow definition of someone who “used to be.” I am spreading the word: People with Alzheimer’s still possess the ability to laugh, think, create, and authentically enjoy living in the moment. They deserve challenging, empowering, dignifying interactions. They deserve the best we have to offer.”

She says that making life better for these dear people and their caregivers has been addictive as she sees what a difference it makes in their lives. Her only regret is that she wasn’t able to use it with her own parents. However, she feels very fortunate to use her passion to bring joy to others. God is truly blessing her so that she can bless others.

What Helped:

  • Her journal writing.
  • Going back to school.
  • Using her strength to help those stricken with Alzheimer’s and their caregivers.

Scripture

Isaiah 41:10 Do not fear, for I am with you, do not be afraid, for I am your God; I will strengthen you, I will help you, I will uphold you with my victorious right hand.

Prayer

Bless Molly with her amazing mission. She is truly a vessel for Your work to be done here on earth. Continue to give her strength and wisdom to bring joy and creativity to those suffering from this terrible disease.

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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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