My family did a cell phone intervention with me two years ago. I had held on to my original cell phone plan for many years and resisted any changes.  So when they transferred my number to a smart phone and a new company, I knew I was beat. I tried to keep an open mind. According to my family, now I would be able to text with them and do all the other things they could do—whatever that was.

My family was right. Once I mastered texting and using the phone, I began to explore apps.  First I followed recommended apps from my husband and son but then began to branch out and find what interested me. Since I am a caregiver for my mom who has Alzheimer’s disease, I soon found that my cell phone was my constant companion and record keeper. For example, I store information I need for doctor visits under Notes, as well as document what we discussed at the appointment. I set up Reminders for myself such as pay the private duty sitter and other bills or get medication and supplies. I have a Pill Finder app that helps me identify pills I find on the floor that Momma didn’t take and threw away. I can look up medications and their side effects if she is having some unexplainable symptoms. When we do her laundry, I can set the Timer to alert us to when the washer and dryer cycle is finished.

My phone has replaced the camera I once carried around. Just like everyone else with a smart phone, I am constantly taking photos of all the people in my family’s life. Once Momma moved to assisted living, we used photographs to help us remember faces and names of all the people that helped care for her. We set up a poster-sized frame in her room with pictures of all the employees, their job titles, and names. To boost visibility, it hung on the wall just inside her door, which encouraged many impromptu visits and comments. I was surprised to find how willing doctors are to have their photo taken with their patients. These photos would come in handy when we were about to have an appointment with the doctor and I could show Momma who we were going in to see. The pictures serve as our memory, and we can look at them over and over again.

The phone is also a resource for activities. We enjoy listening to Pandora’s easy listening music while accomplishing activities like brushing her teeth, painting her nails, or playing cards. I attach speakers to the phone to provide vintage music while leading a group exercise class for the other residents, and I can take requests without any prior preparation. Sometimes I look up words to old songs we can sing together because we’ve forgotten some of the words. Poems and even nursery rhymes are just a touch away with Internet service as part of the phone plan.

One app allows me to scan important documents and even send them by email with FasterScan, which expedites duties like filling out paperwork for moving into skilled care. I no longer have to be home to receive phone calls, send emails, or handle bank business. I can manage these responsibilities and still be with my mom. I finally have learned to complete as much information as I have on a phone contact to save time for future communication. I can text messages with Momma’s private sitters and receive an immediate response when needed. For my peace of mind, they have sent me photos of Momma while she is in their care just to let me know what they are doing. When I’m with her, I can send a text and photo to one of my children and share a response on the spot.

Even though cell phones are relatively new, Momma has embraced the little rectangular box we carry around that emits music and provides amusement in so many ways. I usually hand it to her to hold when I am pushing her in the wheelchair when we have the music playing. Because of her failing eyesight, the bigger screen of a computer or iPad is a better choice if I want her to see specific pictures clearly. However, for daily use and ease of transporting, my cell phone is all we need.

I was distressed to witness the video report of elder abuse in nursing homes Friday night on the CBS news.  Families for Better Care Advocacy Group did a survey on nursing homes by state and have produced a report card for access on their website.  If you want to see how your state fares in nursing home care, go to Families For Better Care and search for your state.

To see the news story, go to CBSnews.com.

The mission of the Alabama Lifespan Respite Resource Network (Alabama Respite) is to lighten the burden on caregivers, by making caregiver supports more readily available in Alabama.

A caregiver is anyone who provides care for a person with a disability or chronic illness.  There are an estimated 850,000 caregivers in the state of Alabama providing care for a loved one in their home.  Providing this care, while rewarding, can often be physically, mentally, and spiritually taxing.

If you have a faith based community that would like to investigate how to provide some type respite for caregivers, go to alabamarespite.org and find out all the many ways a group can help.  They will go the extra mile to enable you to provide this valuable service. Or call Anna Hines-Capron at (256) 859-4900 or e-mail to annastc@ucphuntsville.org for more information.

Ministry leaders and church representatives can also help Alabama Respite staff learn what types of assistance may be the most useful by completing a quick survey at this link https://www.surveymonkey.com/s/52SQF8F.

Available respite resources are also listed on the website.  Learn about this caring network and benefit from their expertise.  The link to the website is found at the top of the blog.

Since I have become a caregiver, I enjoy reading anything to do with Alzheimer’s Disease especially personal stories from people who have walked the journey alongside their loved one. The theme of my last three books addresses the approach taken when dealing with a person with dementia and how to engage them in meaningful activities to maintain qualify of life and make life manageable for the caregiver.

Virginia Bell and David Troxel are in their fourth printing of “The Best Friends Approach to Alzheimer’s Care”.   The Best Friends Approach is designed to create empathy from the carer point of view in order to understand how best to communicate with their loved one living with dementia.  They  have coined the term “knack” to refer in caregiving as a clever trick or stratagem or the ability and skill to do something easily.  Some individuals are simply born with knack; their personality and sensibility help them to be wonderful caregivers.  The Best Friends model can teach the abilities and skills of knack and along the way offer many clever tricks in the “dos and don’ts of Alzheimer’s care.  This is a worthwhile book and is only one of several written by these authors.

Hot off the press is Tom and Karen Brenner’s new book,” You Say Goodbye and We Say Hello: the Montessori Method for Positive Dementia Care”.   Incorporating songs from the Beatles as each chapter title, this easy read has a  clever appeal to the targeted baby boomers providing care.  Granted that dementia care is  an overwhelming task, they have broken down their personal experiences as a gerontologist and a Montessori teacher to  share their findings labeled “Guideposts” throughout their story.  They weave innovative and doable activities throughout the book and leave both professional and family caregivers with a renewed hope for creating a positive environment to deepen the connection with the people they love and care for.

Finally, having to wait longer than expected to receive this book in the mail, “Contented Dementia” traveled across the pond from England to find its way to me. Author  Oliver James lives in Oxfordshire and is trained as a clinical child psychologist and is a trustee of the Alzheimer’s charity, SPECAL.  An open letter from the inventor of the prescribed method in this book tells the reader if they have dementia and are reading the letter, not to worry about the future, appoint a person they trust as their advocate and have them read the book, then forget all about the diagnosis and get on with enjoying their life.  The rest of the book goes into great detail on how to use the person’s history to help create a life living in the present with memories from the past.  Penelope Garner developed the SPECAL Technique after caring for her own mother followed by years of observation and research with other clients. Get ready to do your homework as you read so that you will develop a customized world where your caree lives contently. For more information, go to Contented Dementia Trust.

All three of these books are similar.   Each stresses the importance of knowing the history, preferences and interests of someone with dementia and not to argue with but learn how to navigate away from unwanted negative behaviors associated with dementia.  Once these methods are perfected, consistency with all carers involved is required for optimum outcome.  All are worth reading.  We have a long way to go to get everyone on the same page with caregiving techniques.  May it begin with us – the ones who care the most.

If you provide care for a U.S. veteran, the following may be of some interest to you.  They may be eligible for financial assistance for home care through the U.S. Department of Veterans Affairs.   This program is only available to service members who qualify for a veteran’s pension from the government.

Your loved one may qualify for a program called Aid and Attendance, which offers a monetary benefit for assistance with activities of daily living.

All veterans are eligible for up to 30 days of respite care per calendar year.   On top of that, if your loved one was injured in the line of duty (“service-connected” veteran), they may qualify for additional services.

For specific eligibility requirements, visit. www.va.gov/geriatrics or call 800-827-1000.

This information is from the careADvantage magazine produced by Alzheimer’s Foundation of America.  For a free subscription, visit www.alzfdn.org or call toll-free 866-AFA-8484.

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).

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.

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

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.