Caregivers Unite

In a world of advanced directives, I have written a prayer to ask God to secure my longterm care.

Dear God,

If I enter the darkness that enveloped the women in my family before me, I pray for a good caregiver. I want someone to care for me as a friend, and is empathetic to my plight.  I want someone who will get to know my life history and cherish the time we spend together.

If I am lost to who I am, I want my “friend” to tell me a story about a little girl fondly called Buffer by her daddy and who always cared deeply for the needs of her family.  I want to hear about my special dog named Pittman that loved me so much.  I want to know about my two fine sons and my faithful and handsome husband.

And Lord, sometime we can just live in the moment, when we’ll spend a happy day accomplishing the menial chores that we must do.  Grocery shopping would be an exercise in stimulating my body and my senses starting with the pretty pastries in the bakery, then the feel of firm tomatoes in the produce section and take in the lovely sights of all the other garden varieties carefully displayed.  I’d want to grind some coffee beans just for the rich scent that emanates from the machine even though I don’t drink coffee.  I’d get to push my own grocery cart and have time to investigate something of interest that catches my eye.  I could hold on to my cart while bending down to peer into the big glass doors covering the freezer sections.  When it was time to check out, I would help lift the items from the buggy on to the conveyor belt, using my bent fingers in hopes of relief from their constant ache.

My companion would protect me from the questioning eyes of those who didn’t know what a special person I am.  She would lovingly put her arm around me and tell me how much she loved me when I tried to go where I shouldn’t.  She’d draw my attention to something I couldn’t resist and I’d desire to follow her lead.  We’d move on toward the unknown together and I‘d be happy to be with someone who knew what to do.

Lord, you remember the women who cared for my mother.  Some would know just how to enter her world and go along with her as they reached their daily goals of care.  Others just did the minimum of effort and sat quietly, lost in the crossword puzzle or handheld device brought along to help pass the hours of sitting, taking the term private duty sitter literally, as they added up their weekly paycheck.

My dear grandmother never forgot who I was, even when she was confined to her bed under the watchful eyes of three shifts of women, round the clock for several years.  We had spent so much time together in her later years, that the sound of my voice and the touch of my hand on her arm brought my name to her lips. She said it as if it represented all the life and love we had shared together.  Dear God, that’s the kind of care I want to receive.   Someone who will see me how I looked in the photograph taken when I was a young, beautiful woman, full of promise, fresh and unblemished.  Not like the wrinkled, worn, volatile creature that I now may appear to be.

I want someone who wants to be with me and thinks of things we can do together that will cause us to laugh and smile. She will show me, tell me, and sing with me.  She will pray for me, include me and hold my hand. She’ll read aloud short stories and bible verses that may still be hidden in the depths of my heart.  I want to recognize something and sing that song buried beneath the noise and confusion that predominates my consciousness.

She’ll look into my eyes and try to see what I see.  Even if my words are few or gone altogether, I’ll still be here, listening for a friendly voice, one that is full of love and compassion. She’ll give me time to respond to her efforts and I’ll try to find my way to the surface.  She knows that I might be getting lost along the way, and it may take me a while to begin to understand what is happening.  She’ll know that I do best when things are done consistently; she’ll keep her sentences short so I can comprehend and she’ll give me one command at a time.  I’ll want her to stay with me.  She won’t leave because I’m here and I don’t know what to do.  She’ll know whatever she does for me, she does for you.  She’ll know you are with me and trusts you.

Please Lord, hear my prayer.  If I begin to wander away from who I was, please seek me out, and rescue me back into the flock as you have done before.  Send a faithful servant in the form of a caregiver to keep me safe until I am in your arms forever.

AMEN

“Even to your old age and gray hair, I am he.  I am he who will sustain you.  I have made you and I will carry you.  I will sustain you and I will rescue you.” (Isaiah 46:4 NIV).

Gulf Shores United Methodist Church, located at 1900 Gulf Shores Parkway, offers DayBreak, a ministry providing support and service for caregivers and their loved ones with Alzheimer’s Disease. DayBreak is held on Monday and Wednesday from 10 a.m. to 2 p.m. Cost is nominal and lunch is provided. For more information, contact Dolly Crewes at 251-968-3634 or Terry Fowinkle at 251-968-2377.  For more information, visit their website at Gulf Shores United Methodist Church.

Caring for someone with Alzheimer’s disease or other dementia may be one of the greatest challenges many face in life.  At the E.A. Roberts Center, their program is designed to help caregivers meet that challenge.  The primary goal of the program is to maximize levels of functioning for those with dementia while offering support and relief to caregivers.  The staff consists of qualified professionals  who offer the following services:

Personal care, daily health monitoring, nutritional counseling, therapeutic activities, social interaction, meals and snacks, family/caregiver education, and support groups.

The center is open 7 a.m. – 6 p.m., Monday through Friday, and offers flexible one – to- five day per week attendance schedule. They  have added a Saturday a month to their schedule.

To be eligible for the program, an individual must have a diagnosis of Alzheimer’s disease or other dementia, and must be ambulatory or able to use a wheelchair.

For more information regarding the program, please call 251-435-6950.

Via has an enduring reputation for providing vital support services to residents in the Mobile Area. GrandFriends, an adult day services program, is one of the most valuable benefits offered.

GrandFriends combines structured, supervised activities with a safe, affordable and comfortable environment for elderly adults with dementia or special physical needs. The program is available 7:00 a.m. – 5:30 p.m., Monday through Friday, excluding holidays. Program members can participate one day a week or up to five days. Program members routinely participate in socialization, recreation and exercise activities that are focused on maintaining independence, dignity and life enjoyment within the scope of their individual abilities. Breakfast, a hot lunch and an afternoon snack are provided daily.

The GrandFriends staff consists of Certified Nursing Assistants, a Certified Therapeutic Recreation Specialist, fitness trainers, and trained companions and volunteers. They are all dedicated to helping families who are confronted with the challenges of Alzheimer’s disease and other age-related issues. The program is dedicated to providing care-givers with much needed respite. Family members and friends are able to continue their daily routines knowing that their loved one is in a caring environment that fosters safety and activity.

All individuals must complete a screening and assessment to ensure eligibility.  Contact Via at 251-478-3311 or go to www.viamobile.org for more information.

As your loved ones needs progress, you might consider adaptive clothing. Websites can be accessed at buckandbuck.com and Silverts.com.

On my way to church this morning, I began to reflect on the relationship I have with my mom and what will life be like without her when she finally is released from her body.  As the tears flowed from my eyes, I realized it was not the healthy mom I think of in my grief, but the one I care for on such an intimate basis.  Had she not required my care over the last five years, we would not have such a strong connection.  She is not a burden to me but a precious life that I enjoy being with.  So when I think of life after she’s gone, I know I’ll miss the quality time we’ve spent  together and the many experiences we’ve enjoyed with others like her.

If you are called to care, don’t think you’re busy life is more important.  There are untold blessings in giving your life for another.

One of my favorite prayers is written by St. Francis of Assisi:

“May it be, O Lord, That I seek not so much to be consoled as to console, to be understood as to understand, to be loved as to love.  Because it is in giving oneself that one receives; it is in forgetting oneself that one is found; it is in pardoning that one obtains pardon.”

I have just placed my mom into a skilled care facility.  The transition is difficult for us both.  Educating the staff on what works best with my mom is a delicate dance between what they do and what we expect.  We are still making adjustments but for all you folks doing a similar thing, here is a letter I’ve composed to help communicate our position.  Maybe it will help you, too.

Dear Caregiver,

Have I told you how important you are to us lately?  Along this journey with my mother and Alzheimer’s disease, you play a very important role.  You have the power to guide the outcome of her day by your sensitivity, creativity and kind nature. What helps my mother helps me.  And when Momma’s happy, everybody is happy.

Forgive me if I ever question the way you are caring for my mother.  You see, I am responsible for her welfare.  Before I chose you to help, I was providing her care.  Through trial and error, I figured out what methods worked best to achieve a pleasant day while accomplishing the activities of daily living.  When I could no longer handle the high demands of providing care alone, I turned to you for assistance.  However, I have the experiences that you could benefit from to help you do your job.

I have the privilege of knowing my mother very well.  I know her history, her preferences, and her personality.  I know how she might have responded to your personality when she was well.  Now that she has dementia and can’t use words to convey her wishes, we both need to take the time to listen to her nonverbal cues. Then we will best know how to approach and achieve what we are here to do.

We are both here, communicating with each other for one purpose―to care for my mom.  For me, this is a daunting task that I take very seriously.  I often feel helpless and afraid that I’m not doing everything I should to care for her.  At times, I have chosen to look the other way when things seem amiss because I don’t want to become estranged from you.  I need you.  I have learned a lot from you and value your input.  I couldn’t do this without you!

I need to trust your care for my loved one.  I know this isn’t an easy job for either of us.  I have added you to my team in hopes of working together.  Your interaction with my mother is of major importance to her quality of life.  If you’re having difficulty, let’s put our heads together to come up with a solution.  And when we do communicate, please pass that information on to the next caregiver so our solution and awareness won’t be lost.

In this information age, there are solutions to our challenges with a click of a mouse, a visit to the library, or time spent watching a DVD.  I encourage you to continue to take the time to educate yourself on all aspects of your job.  Please don’t be offended if I offer a suggestion when I think I know a better way.  And I’ll welcome any suggestions from you.   I want to keep the conversation going.  I am for you, not against you.  I want us to succeed.

I believe I speak for all the families who rely on someone else to care for their loved ones.  Our peace of mind and the quality of someone’s life depend on it.

Thank you.

 Today was my last afternoon activity with the residents at the Special Care Assisted Living Facility where my mom lives.  We moved there September of last year.  Over the months, I have enjoyed getting to know the residents as they all gather in one big community room throughout the day.

At first, my purpose in knowing everyone was to help my mom feel a part of the group and become acquainted with her new “neighbors”.  As time went on, however, I began to look forward to my visits not only with my mom, but with my new friends as well.  After I spent some one on one time with my mom in her room or outside, we would move into the common area and visit with anyone who was interested.  One day mom and I sat at one of the round dining tables when soon everyone who could squeeze around the table was present.  We began to roll a small rubber ball back and forth between us.  After we got the hang of that, we added spontaneous singing. As elementary as this may seem, we all enjoyed the challenge of keeping the ball on the table and the familiar songs. This became a regular occurrence. It kept the residents engaged until suppertime and boosted everyone’s spirits.

Sometimes we connected a speaker to my smartphone and played music from their era and took any requests that came up.  It was like sitting around the record player and listening to all our favorite music.  To look around the table at the smiles and broken sentences was pure joy. From my favorite singing partner who could harmonize with and follow anything I sang, to my tall friend who could play the harmonica and my dear little friend who could only see shadows and hear when I spoke loudly into her ear, I will always remember you with great fondness.

Some of those folks have already passed to their eternal destiny.  I was privileged to have been at the bedside of several of my new friends as they began their approach to their new life in heaven.  The families also became very precious to me, along with many of the staff members of the facility.

Now we must move to a higher level of care as my mom’s abilities have declined.  As difficult as it is to leave our friends at this place, I know the next place offers new friends and unknown possibilities.

Good-bye, Brookside.   I’ll always cherish the time spent with you and expect one day, “in the sweet by and by, we shall meet on that beautiful shore.”