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.

I follow this group on Facebook and have downloaded their brochure as follows:

If you or a loved one suffers from Alzheimer’s, Early Onset Alzheimer’s, or another Dementia related disease, if you are an advocate, or want to know more about these diseases, we invite you to join us. Memory People™ is a Facebook group founded by Rick Phelps who was diagnosed with Early Onset Alzheimer’s Disease June of 2010. Rick saw the need for real time interaction for all those touched by these diseases. At Memory People™ you will find care and support in a comfortable and safe environment where patients, caregivers, and all involved come together to share our stories, support each other, and bring awareness to these diseases. First, you will need to have a Facebook account to join us. From your Facebook home page type Memory People into the search bar. Then click on Memory People, and you will be taken to our home page where you can read about our group. Then, just click on the “Join Group” button and one of our Administrators will add you. If you or a loved one have been touched by Alzheimer’s or another Dementia related disease we encourage you to join us at Memory People™.
bringing Awareness, one person at a time
Rick Phelps
Founder, Memory People
Cell 740-294-2456
phelps2645@gmail.com
Leeanne Chames
Personal Assistant to Rick Phelps
Executive Director, Memory People
leeannechames@gmail.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.

PBS reports a special investigation on the Assisted Living industry.  If you miss the program on television, go to PBS.org and watch the full program entitled,”Life and Death in Assisted Living” at your convenience.  It’s a must see.

Now that two months have passed since we moved momma into a nursing home, I can step back and see how we have progressed.  Our goal to get as close to my aunt’s room as possible is why we moved next door to her in a semiprivate room that offered a very small area.  It didn’t help that the roommate sported an electric scooter that took all space and more to maneuver in and out.  Coupled with a bad design of the door to the hall and the door to the bathroom being back to back required adjustments to accommodate any movement.  Fiercely independent, we would often watch as the roommate moved back and forth in slight increments to weave between the dresser and foot of the bed to go through either door.  Often the furniture was knocked cockeyed from the attempts to get through, leaving the room in a state of dishevelment.

The tight living space inconvenience was overshadowed by our next challenge – getting to know the staff and they us.  We got off to a rough start as I was expecting Momma to maintain the routines she had before we moved her here.  Although Momma can’t express her position with words, she shut down her remaining communication skills other than the expression of fear.  Seeing her react to her new “handlers” that way was distressing to us both.  I responded by taking her off the unit to explore the building while I was there to distract us both from what we had signed up for.  We spent time meeting other residents from other parts of the building and even explored possible new rooms to transfer to.  A private room became available which was offered to us as I had made known that we hoped for a bigger space.  Since this opportunity resided in a different unit at the far end of a hall away from most activity, we chose to hold out for an opening in the current wing where we had begun to get acquainted with residents and staff and still be close to my aunt.

I am happy to report that my concerns did not go unnoticed by most staff involved.  The day a larger semiprivate space came available across the hall from my aunt, I felt sure we would be moving soon.  I even arrived the next day with my hammer and tape measure for hanging pictures just in case we were given the go ahead.  Sure enough, upon my morning arrival I was greeted with smiles and an offer of moving.  I said yes and immediately we began the quick task of moving from one room to the next.  The hammer came in handy so by lunchtime, the space was as cozy and familiar as possible.  Momma did not seem unsettled by the change and accepted the bigger accommodations without complaint.  The window view and better tv reception brighten the room and our new roommate and family visitors are congenial.

Meanwhile, we have become more relaxed with the staff on all levels and many times prefer to join the other residents in the day room over going to activities in the larger activity room away from the unit.  The residents have become endeared to me and I enjoy interacting with them as a group or one on one.  Momma does enjoy my undivided attention, however, and I am sensitive to her needs first.

All in all, I can look out our open door into my beloved aunt’s room across the hall when we are in the room, enjoy the day room down the hall, get ice cream out of the freezer or ice and water at will, or check at the nurses station of any recent information concerning my mother’s daily habits.  We’ve learned to stick around until momma is cared for before wandering off somewhere else in the building and make an effort to be back in time for the afternoon snack.  We learned we can use our earned funny money from the activity department to buy a box of Kleenex  from them when needed and purchase other items from their monthly store.

This journey we’ve been on began in late 2008 with the first move to assisted living.  After three and a half years, we moved to memory care.  Less than a year later, we moved to skilled care.  Enduring the transition each time was difficult but necessary to keep moving forward.  As expected, it wasn’t an easy two months this time but worth getting through. I am free to come and go, Momma and my aunt are settled in and are both under the care of hospice and the facility.  Their affairs are manageable now as long as I keep things going on a regular basis, paying bills and balancing checkbooks frequently.

I am thankful for where we’ve been, who we’ve met along the way and where we are.  My main emphasis now is to enjoy the relationship I have with these precious treasures who have my undying love.

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).