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).

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.”

 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.”

Thank you for visiting this site.  If you have any questions concerning your journey with someone with Alzheimer’s Disease that is not already addressed in the previous pages, please leave a comment after any post.  I will receive those comments and be able to answer you directly or post some information that you may find helpful or direct you to the answer if I can.

I hope you will communicate with me on a regular basis so we can get a conversation going.  I welcome your experiences, trials, successes and resources.  Don’t be shy, I’m waiting to hear from you.

Rebecca Joosten has the touch of healing in her fingertips.  A nurse for 30 years, she has provided healing massage since 1995.

As my mother’s abilities have declined, I’ve become creative in solving the daily challenges of personal hygiene.  Standing in front of the bathroom sink to brush her teeth became very difficult as my mother’s stamina weakened.  The day I had her sit in her recliner to carry out the task was a relief to us both.  I have a small table that I can place all the implements I need close by.  I lay a towel over my mother’s chest to keep her dry.  I begin the process by first using a brush pick to

Tools used to brush teeth

clean out the excess food stuck between her teeth or pocketed in her jaw. I wipe what I dig out on a paper towel.    I then put toothpaste on a soft bristle child size toothbrush.  All the while, I compliment my mom on what a good job she’s doing, that her dentist would be proud, and what we are doing next.  On most days, she will open her mouth willingly and allow me to gently brush. Next, I give her a small cup of water to swish around in her mouth, then hold up a small bowl for her to spit the contents of her mouth into.  Sometimes I have to show what I want her to do – swishing the water in my mouth and spitting it into the bowl.  I inspect our progress, then may need to use the brushpick again or brush again, and rinse.  Once satisfied that we have thoroughly cleaned everything, I give her a capful of mouthwash.  I remind her not to swallow the mouthwash but show the swishing motion with my mouth and have the bowl close by to empty her mouth.  I wipe her mouth off with the towel on her chest, then finish by applying some chapstick to moisten her lips.  She will agree that she feels better now.

If she is not willing to open her mouth at the beginning of the process, I usually move on to her hands, wiping her hands with a damp towel, cleaning her fingernails with the tool attachment to her fingernail clippers, and applying lotion to her arms and hands.  This will distract and relax her and she will usually agree to open her mouth.  Most times, I follow the teeth cleaning with the hand washing.  I also play easy listening music while we do both activities.

What once was a problematic situation such as bad breath, food stuck in her front teeth and agitation in trying to remedy that has turned into a daily intimate ritual that is satisfying to us both.

Do you have a question to ask, suggestion, referral, or recommendations to make? Here is the place to do it.

I welcome any comments that you have.  Either write your comment after any post or e-mail me at beth@caregiversunite.org

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This Purple Angel symbol can be used by anyone raising awareness regarding dementia. It symbolizes a guardian over those living with dementia, their families and friends, as well as all those working to raise awareness about dementia world wide.

Published: Wednesday, November 07, 2012, 2:53 PM     Updated: Thursday, November 08, 2012, 5:45 AM

By Press-Register Editorial Board
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Beth Reinert with her mother.

By Beth Reinert

Guest Columnist

My mother was diagnosed with Alzheimer’s disease in 2008. Preparing for her long-term care, meeting her financial requirements and offering meaningful activities have dominated my life. In addition to caring for all of her needs, I’ve spent hours doing research on the Internet, reading books and making phone calls for just one reason: So I could provide her with the best care possible.The number of unpaid caregivers for Alzheimer’s patients in the United States totals over 10 million, yet the job is often lonely and unrecognized. Most of us aren’t prepared to take on such care of a loved one, but once the commitment is made, we have so much to learn.

While overcoming one challenge after another, I have come to realize how vital caregivers are. We are the ones who make the decisions that determine quality of life, medical care and safety. Even with help from my sister, I finally realized that a team of people is necessary to provide 24/7 care. But where do I go for help?

Finding a support group was a good place to start. The first time I sat down with families living with Alzheimer’s disease, I felt so relieved that I wanted to cry. Here were my comrades, the ones who knew what I was going through. I found good referrals, creative suggestions and listening ears from the group participants.

I also received help from the E.A. Roberts Center, from family members, from my church, from home health care, from hospice, from the staff at the assisted living facility where she lives and from the private sitters scheduled to keep her company.

I found resources through the South Alabama Regional Planning Commission and the Area Agency on Aging and became involved with them as a volunteer. They put on an annual Caregiver Conference that I attended for the first time last year. I still benefit from what I learned at the conference. Where else can you acquire facts on bladder and bowel health, hear about the latest products for incontinence and learn how to qualify for Medicaid when the time comes?

Information about these topics helped me overcome problems that seemed insurmountable at first. Now I face these issues and many others with confidence.

I’ve heard that the new optimism is solutions. Well, solutions can be found at the Caregiver Conference on November 14, 2012 at the Daphne Civic Center. It’s free to attend and they offer adult day care or in-home sitters at no cost to make it possible for you to attend. If you are a caregiver—unpaid or professional—I urge you to continue to educate yourself by attending this conference. Your job will become easier and the care you are giving will improve. You can even earn CEUs if you need them.

I want all caregivers to be able to easily access services from our local community. In my association with Area Agency on Aging, they have listened to my concerns about the needs of caregivers and dementia patients. As a result, the Alzheimer’s Disease and Dementia Association Helpline was developed and is ready to be launched on November 15. By calling 251-706-4680, local information and resources for family members or clients with Alzheimer’s or dementia can be found.

As my mother’s disease progresses, I know that we will embrace what each day brings. With continued faith and asking for help when we need it, I trust my mother will continue to have the care and love that she deserves.

For those interested in attending this year’s Caregiver Conference the final day to RSVP is Tuesday, Nov. 13. You can do so by calling 251-433-6541.

Beth Reinert has a master’s degree in education and serves on the South Alabama Alzheimer’s and Dementia Coalition. She can be reached at pittman1212@comcast.net.

Beth Reinert lives with Alzheimer’s Disease in many ways.  She worked as the  Recreation Director on a Special Care Unit for Alzheimer’s patients  for two years before her children were born.  Having a BS and MEd  from the University of South Alabama that specializes in Therapeutic Recreation prepared her for implementing appropriate activities and interaction.  Both her maternal and fraternal grandmothers died with the disease and she is the primary caregiver for her mother who is well advanced in the disease.  Beth is an avid writer and advocate for the elderly, particularly for those with dementia.  She is especially passionate for the plight of the caregiver who is walking the journey with a loved one living with Alzheimer’s disease.