Lee Felis, MOT, OTR/I of Mobile Infirmary will present this topic at the next Educational Support Group at E. A. Roberts Alzheimer’s Center.  The meeting begins at 10:00 AM on Thursday, April 13, 2017.

Complimentary care is available during the meeting.  Please call 251-435-6950 for more information.

Located at:  E.A. Roberts Alzheimer’s Center

169 Mobile Infirmary Blvd.

Mobile, AL  36607

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.

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.

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.

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.