We lost a friend today.  The halls are too quiet without the loud voice of the one who spoke for us all when she’d yell, ”Shut up!”  at the irritating cacophony of beeps and call alarms alerting, that are part of daily life in a nursing home.

Hazel was a ready source of entertainment and expressed love to anyone whom she deemed worthy.  I was a willing recipient.  We spent many an afternoon in the west wing day room, surrounded by family and friends, enjoying the banter between Sheila and Hazel, while listening to the comedic comments of Steve Harvey as he hosted Family Feud.

I would stay in her proximity even to the chagrin on my mother.  Hazel knew me as “a nice girl” that she “loved very much.” She would confide to anyone who would listen as I walked away from her that she loved me and I loved her, too. Not only did I enjoy being around Hazel, but grew to know and love her family as well.  They told me that this Hazel was quite unlike her  “old” self.  Before succumbing to Alzheimer’s disease, she was a quiet person – nothing like the incessant dancer, unpredictable talker and open expresser of love that developed.

As it is with Alzheimer’s disease, time changes things.   Hazel’s contributions began to slow and her interaction waned.  She began to have fewer “good” days and more “bad” days.   We watched her fade before our eyes.  I visited her at her bedside as her granddaughter kept vigil.  “I’ll Fly Away” was the song that flowed from my lips to her ears.  She listened to my voice as she had many times before.  By the next day, her daughter had arrived to see her off.  After considering what kind of music Hazel liked, we broke out in singing “You’re a Grand Old Flag”.  Uncanny, we both knew all the words and moved on to “God Bless America”.  Hazel’s son watched in amusement.  Hazel seemed to enjoy the attention and we enjoyed the camaraderie.

Then she was gone – but only out of sight.  She arrived at her final destination March 13^th 2014, in the morning hours, before her family was able to get there.  She slipped off while no one was looking.  A quiet exit for someone who had been so out spoken while I knew her.

Farewell dear friend.  I will miss your laugh, your smile, and the endless string of words that only you could weave.  You made life better on the west wing.

I love you, Hazel.

We wish you a merry Christmas wherever you are! May God give you the grace to enjoy precious moments by going with the flow presented today.  Smile and be thankful that you are trusted with the gift of loving someone unconditionally in your life.

If you’re having trouble finding evidence of God in your daily life, let me make a suggestion.  Go sit in a parking lot of a nursing home near the entrance.  You will see people coming and going that are busy doing God’s work. People from all walks of life, for a variety of reasons, enter and exit the building all day long.

As I sit in the sunshine, under a large oak tree alongside my wheelchair bound mother, we watch the people go by.  Two women, strangers before they both found themselves on a common mission, pause to speak to one another, each carrying a bagful of items, on their way to serve their moms who reside inside the building.  An x-ray technician arrives, unloads his machine for the hundredth time, and rolls it inside to clarify an awaiting medical situation.

Certified Nursing Assistant’s who arrive for and depart from their 8-hour shift of caring, give us a smile and say hello.  A car pulls in as close to the door as possible, and a frail resident gets out with the help of a friend who assists her inside. It wasn’t that long ago that this particular resident wasn’t able to walk at all.  However, with the regular visits to the physical therapy department and encouragement from her many visitors, she has improved a great deal – even though her prognosis is grim.

The nursing home bus arrives and unloads a group of residents who have been out shopping at the nearby Walmart.  They carry in their purchases with the help of the activity staff.  A stop by the activity room reveals one busy employee wrapping Christmas gifts for resident’s who are able to still collect gifts for their friends and families at Christmastime.

As we make our way into the depths of the building, we pass the gaily decorated halls, see Christmas trees at every wing, observe medicine being given out by nurses, smile at needs being met by compassionate helpers until we finally reach my mom’s room.  The quiet space and familiar setting welcomes and calms us.  The maintenance man enters to clean the heater filter and engages us in conversation.  Before long, Momma’s CNA brings in the afternoon snack.  While there, she informs the maintenance man about my mother’s ability to do handwork as seen hanging in frames on her walls. She points out the intricate work involved. I tell about my mom’s custom to make everyone in the family a special ornament that would represent a major event of the year and that I have 20 years worth of memories to hang on my tree.  As my mother listens intently to us tell about her accomplishments, she has a pleasant smile on her face.  For a lady who has advanced dementia, and is unable to speak, this is a good day.  God’s grace and mercy abound.

Thank you, God, for your loving people.

^“7 This is my command: Love each other” John 15:17 NIV.

While there is endless information these days encouraging us caregivers to take care of ourselves, improve our abilities through education, and receive support by connecting with other caregivers, let me remind you of the people we hire to help take care of our loved ones.

When the job of caring became too much for me to do alone, I turned to others for help.  That came in the form of hiring strangers to entrust my mother’s care.  We started by having someone come into my mother’s home to prepare the noonday meal and provide some social interaction.  Although this arrangement only lasted two weeks, I have to say this young lady did what I asked of her even though my mother wasn’t so keen on having her in the house.  Not an easy job when the person you are there to serve doesn’t understand the need or resents your presence.

Very shortly after that, we moved Momma into an assisted living facility, where she had the help of Certified Nursing Assistants (CNA’s) to assist her with dressing and bathing.  I came to appreciate the confidence these (mostly female) workers had as they worked tirelessly all day long, going from one person to the next, to carry out their duties.  Some CNA’s seemed to enjoy their job more than others, some with genuine care and kindness, some just doing their job.  However, they all kept going, regardless of family or health problems or financial needs that was affecting their mood. Do I think that two weeks is a long enough time to be trained as an expert on giving care, especially to someone with dementia? No. Most of the learned care techniques are gained from each other while on the job.  So given the job qualifications required, the tasks to achieve on a daily basis are not easy.  After all, we needed help, too.

I’ve called the CNA’s our “friends” as I’ve explained their involvement to my mother.  We’ve taken their pictures and framed them along with their name underneath to remind us of how important they are to us.  We had to move into a Special Care Unit for a while and benefited from the new CNA’s we met there and their willingness to learn my mom’s habits and behaviors.  I have always tried to find ways to thank and encourage the work they do and report to their supervisor their diligence and good deeds.

Recently, I was considering  broken communication between a CNA and myself.  Instead of complaining, I decided to thank the entire unit for all their help by bringing in lunch for the day shift and dinner for the night shift.   If the pizza didn’t do it, maybe the Mississippi mud cake would bridge any gaps that had developed over the six months we’d been there.  While I have perceived that family members are viewed as potential trouble for the CNA’s, I feel these women need to hear what a good job they are doing and give them opportunity to take pride in their work.  They take the brunt of all complaints and expect to either hear it from the family, or worse, be reprimanded by their supervisor.  While this is appropriate at times, we need to know how to get along without fear of reprisal.

I hope we can change our perception of each other and be willing to work together for the good of the residents.  The care of our loved ones requires a harmonious team.  While we as family members might find that good care is hard to sustain, it’s is all our responsibility to improve communication and learn together.  Let’s start by thanking a CNA today.

BETH REINERT – GUEST OPINION

Advocate seeks to change perception of dementia

Have you ever been asked the question, “Who would you most want to have dinner with?” My answer is Teepa Snow, an award-winning occupational therapist who has made it her mission to help family and professional caregivers do a better job of caring for people with dementia.

Snow is a mentor and voice of confidence for the millions living with the disease. I have learned from her teachings to better understand how to help my mom live with dementia.

I caught up with Snow recently in Mobile while she was there for a speaking engagement. We chatted for several hours about our shared focus: advocating for men and women who have dementia.

Dementia is an umbrella term that covers 70 to 80 conditions of brain failure. A dementia diagnosis is lifealtering for not only the person living with the disease, but also for the person’s family.

More than 50 percent of diagnosed types of dementia are Alzheimer’s cases, but often a secondary dementia emerges as the disease progresses.

Alzheimer’s disease is the sixth-leading cause of death in the U.S. No pill will take this problem away, so the key to a positive outcome is how caregivers manage our actions, words and reactions.

Snow has a message not only for families and care professionals, but also for all of society. “Policemen, firefighters, emergency room workers, postal service and bank employees all need to be familiar with the signs of dementia.” she said.

“We as a society must have a basic awareness of dementia and embrace people living with dementia instead of labeling them as demented people.”

Snow wants to change the perception of how dementia is viewed, take away the negative terminology and create the right setting and care for men and women with dementia.

At risk herself

Snow’s popularity took off in the late ‘90s after she presented a staff training model at the International Alzheimer Meeting in Washington, D.C. Her DVD, “Accepting the Challenge,” has been widely distributed. She is the most prominent educator for training on all aspects of Alzheimer’s disease care. That is why her calendar is booked through 2015.

Snow also has a history of dementia on both her mother’s side and father’s side of the family.

She knows she is at risk for developing the disease, so she is living life carefully by making good choices. She keeps physically fit, manages stress with yoga and deep breathing, and eats well.

Snow’s website, teepasnow. com, is full of information that both professional and family caregivers should see.

Free webinars can be accessed from her Dementia Care Academy, and DVDs are available for purchase. Not everyone can attend her workshops, but anyone with Internet access can learn from her teachings.

With the coming tide of senior baby boomers on the horizon, everyone needs to know about dementia. We should all get to know what Snow has to say about it.

Beth Reinert advocates for people living with Alzheimer’s disease. She authors the blog Caregiversunite.org, which includes general news and advice for families coping with the disease, along with event listings for the south Alabama area.

Printed in AL.com, Press-Register, September 18, 2013, page 10A

Have you got your affairs in order?  Dave Ramsey calls it a Legacy Box, my uncle called it an Estate Book, and I call it an act of love.  The person who will be in charge of deciphering and fulfilling your wishes needs to know the who, what, when, where, and how to do it.

If you haven’t already done so, get yourself a Durable Power of Attorney.  This legal document allows the person of your choosing to act on your behalf when you are unable to.  Now is the time to have that prepared, while you can still make decisions for yourself. It’s never too early to have this in place.  If you are sixty or older, the Davis and Associates, Legal Counseling for the Elderly can provide that service for free through their connection with the Area Agency on Aging.  If you are currently caring for someone else, you know that a POA is required to make any medical or financial decisions for them.

Next, have a Last Will and Testament made even if you don’t have a lot of money. If you do have a large or complicated estate, you may need to create a Revocable Trust to carry our your financial wishes.  An Estate Planning Attorney can help you designate your long range plans.  Once you have made decisions concerning what goes to whom after you die, let your family members know what is in your Will and why.  This will help prevent any surprises and hard feelings between your heirs after you’re gone.

You may want to authorize a HIPPA Release in order to allow access to your medical records.  An Advanced Directive for Health Care (Living Will and Health Care Proxy) is also necessary to make your medical wishes known.  Again, you can call Alec Brown of Davis and Associates at 251-434-6848 for this free service.

Now place these documents in a labeled folder or box.  In addition, add any other pertinent financial and identifying information you have.  This includes bank account numbers and passwords needed to access them, insurance policies, burial plans and policies, social security cards and photo ID, financial investments, Bonds, Retirement Accounts, Property information and documents, and car titles.  You would be kind to include contact information of people you have dealt with that will be helpful in settling everything.  Phone numbers of friends and family is also helpful in communicating your death.  You may even want to write your obituary and include it. The location of the security box key is important but remember that someone else’s name needs to be on that box so it can be accessed after your death.  Include everything a person would need to know to carry out what you normally handle.  Put your spouse’s information in there as well.  Passwords for internet activity including social media like Facebook are necessary to access photos, etc.

Granted this is all valuable information and should be kept in a secure place.  Either make copies for your entrusted family members or appointed executor so they can access the information when the time comes.  Compiling this information before your death is one of the most loving acts you can do for your family.  Make a list of what you need to do and begin the process.  None of us will avoid death. Start today!

An activity I’ve discovered that my mom and I can enjoy is the card game of solitaire.  Although the name of the game would suggest a solitary player we’ve teamed up to play separate parts to reach the goal of the game.

Originally, we played solitaire as an afternoon diversion in Momma’s assisted living apartment.  As time has gone by, it has also become a tool for me to gauge her state of being.  Since she has stopped talking, I read her body language to determine how she is feeling, i.e., does she have a urinary tract infection that needs to be treated.  The way she plays cards says it all.

Whether we are seated side by side at a table or we have a table between us, I initiate the game after we have accomplished the daily ritual of cleaning her teeth, hands, and fingernails, which I follow by rubbing lotion onto her arms and hands.  Now I know her hands are clean and how well she cooperated tells me if we can proceed with card playing.

Some days, her answer is no to the suggestion of cards.  However, I may go ahead and deal out the cards in front of her and see if I can engage her interest.  I count out the seven cards out loud, over and over, each set of seven, until the game is set.  We look over the hand that we’ve been dealt and see if any cards can be played.  I play those cards, naming what I’ve done like the red six goes on the black seven, until  we’ve played all we can,  Then I set the remaining deck in front of her on the table and see if she’ll pick them up.  Here’s when I need to wait for her to make a decision.  She may eventually reach for the cards to begin the game. I may offer the deck to her and she may accept them.    If not, I pick them up and count out the first three cards to lay face up.  I go on like this until she decides to join in. When the game calls for a card to be turned over, I tap my finger on the card as a queue for her to do so.   If she has become interested in the game, she will comply.

I have found that the longer we play, the more engaged she becomes.  We may play multiple games, hoping to finally win and when we do, I celebrate with a lot of cheering.  This generally elicits a chuckle or smile from her at our success. Eventually, with repetition, she may even initiate laying out the beginning cards, which is quite an accomplishment compared to where we started.

This time we spend together has become not only a diversion and a communication tool, but also a philosophical attitude. Although the game of life is often played alone, we’ve teamed up to play the hand we’ve been dealt together.

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.”

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.