The Greatest Loss

Knowing my mother’s Alzheimer’s was advancing and her health declining I made two trips to see her and help my sister care for her in the last four months. I made a third trip to attend her funeral and bury her. In March the doctors gave her no more than six months but I knew it would be much less time we had to spend with her. My journey brought me on my last visit knowing it would most likely be the last so I treasured those moments I spent with mom.

This visit everything was different. Her bed was now a hospital bed positioned in the family room. My sister had taken my advice and moved some of mom’s bedroom furniture in there to make it more familiar for mom. Gone were her clothes in the dresser, replaced with Chux pads for the bed, sheets, wipes, and linens. Each of her pull-over tops had been slit up the back to make it easier to put on. To the right of the bed were tissues, wipes, cream, and a handwritten schedule of reminders for and from the hospice nurse. There was always an insulated cup with a straw with ice tea or orange juice to keep her hydrated. She didn’t have much of an appetite and sipped from the cup more because we made her than she wanted to. There was a TV placed on her dresser and nearly constantly a DVD of old family photos looped displaying pictures of the family over the last 65 years. My sister Carol shared with me that while watching it one time she said “Look mom, it’s you and the twins.” Mom responded with, “Hmmp, I had twins?” It was reminder of how much memory mom had lost yet became a moment of humor. Mom had six daughters and two sons, eight in all. She knew we were all her children but couldn’t really distinguish the girls from each other most of the time, except for Ellie who had moved home to care for her.

I felt privileged to come home and care for mom and let Ellie get some rest. Mom had to be turned every two hours to prevent bed sores so sleep was elusive. I was able to assume that job while there to let Ellie get a few good nights of rest. It was heart wrenching to wake mom up in the middle of the night to turn her. She was disoriented, wanted to be left alone, and due to her health condition painful. To top it off she didn’t recognize me. “What are you doin’?” She would cry as I gently soothed her and wedged the pillows behind her back to support her on her side. She would fall back asleep and I would stoke her hair or hold her hand. Her skin was so soft. I was fully aware we were losing her but knew it was on God’s time table. I was just happy to be there and feel the love and peace she had always exuded. It was though there was an aura of it in the room.

Ellie was her primary caregiver. She had moved in and watched mom’s decline over the last eighteen months. Mom always wanted to stay in her home and didn’t want to live in a nursing home. Ellie made that possible. She gave up a lot but will tell you she gained more than she lost and felt privileged to be there. My brother Joe, who is developmentally challenged also lived at home but was in no position to care for mom. While cleaning out one of the closets in mom’s bedroom we found some of my dad’s things. He’s been gone for 28 years. Ellie asked my brother if he wanted to use the closet for some of his things. She tried to explain that mom had no more than six months left and I knew she was in denial herself … hoping my mother would last the entire six months. She had grown so close to mom, it would be hardest on her to lose her now.

The morning I left I knew it would be the last time I saw her alive. Saying good-bye was perhaps the hardest thing I have ever had to do in my life. She was sleepy that morning, as I stroked her face and my tears dropped on her brow I felt that swelling in my chest, that heartache that only comes when someone you love so deeply is hurt or lost. We are never prepared to lose a parent or child no matter how long we have to adjust to the rational side of it. I will keep those last moments etched in my mind forever. As I left for the airport I felt that surreal feeling of going through the motions but not really being there or feeling anything … anything but heartache.

I called every night to check in and let Ellie talk. I needed to know mom’s condition and Ellie needed a shoulder. I was home in Baton Rouge for six days and was grateful to go to my Small Faith Group to share and pray for mom, myself and the family. Ellie texted me while I was there with a message that the hospice had told her it was time to stop feeding mom. I knew this would be so hard for her to do. Being with the members of my small faith group gave me the strength I knew I would need these next few days. I pulled into the driveway and called Ellie. She was fighting the tears. My brother Art was there. He’d been there all evening stroking mom, holding her hand. While on the phone Fr. John arrived to administer Last Rites. Ellie was choking back her tears and emotions and now so was I. I heard Fr. Start to say the prayers. In my mind I saw him with her crucifix she bought years ago just for this moment. I remember standing there thinking this is one of those moments in life you will always know where you were and I prayed for God to be merciful and welcome my mother home. I let Ellie go and she called back moments later and through her tears said “She’s gone.” She had just waited for God’s permission. She received Last Rites and took her last breath. As much as I felt at peace for her I felt such a void in my heart, an ache that I hope I always feel; a reminder of my greatest loss. I cried my tears in the shower where they steamed down my face with the running water flooded with memories of my mother, accepting the loss that truly had begun three years ago as Alzheimer’s robbed her mind. Even when she didn’t know our names she knew we were her daughters, we belonged there. She knew there was a strong bond she just couldn’t name it.

We celebrated her life and hundreds of people attended her wake and funeral. It was truly a tribute to this woman who had raised eight children, been active in both the church and community, and been loved by so many. She was my greatest role model and will always be my greatest loss. 

-Barbara Auten, Executive Director

Different Journeys

The simplest statements are sometimes the hardest to remember. A good example is the simple yet true statement, Alzheimer’s disease affects people differently. Each individual with dementia experiences a different journey through the disease as well as the very different journeys taken by family members and friends. Dementia seems to bring out drama in every family. The bad part about this drama is that it can cause feelings to be hurt, which can be detrimental to relationships. However, if we reframe the negative situation there can be a positive side. The positive is that most of the time everyone’s goal is to give the loved one the best care possible. Most arguments stem from care partners disagreeing on the way to give the best care to the loved instead of realizing the common goal. Listed below are some helpful hints at getting the whole care partnering team on the same page.

• Schedule a family meeting. Whether by conference call or in person, schedule a time to meet with all of the care partners, even those from out of town, to discuss needs.

• Write an agenda. Write down two are three things to discuss during the meeting. Try not to make the list overwhelming because it may take a while to discuss each concern.

• Do as much listening as talking. Taking the conversation slow can alleviate the likely of the conversation escalating to an argument. Take time to truly listen and then process what you heard, after you process then formulate your response. This method may be uncomfortable at first but in insures that everyone says everything they want and no one is cut short.

• Be specific about goals. Have an idea beforehand about which concerns you would like to discuss. For example on your list you may have written “finances – POA” when introducing this topic state your goal is to specifically name your loved one’s power of attorney. In another instance if you are asking for direct help you might specifically say you need help grocery shopping.

• Divide and conquer. Split up the labor among those present at the meeting by dividing based on expertise. For instance, if there is a family member who manages money well, let this person handle the financial issues. Be sure to include even the care partners at a distance, they may be able to do something like offer money for a housekeeper.

• Any little bit helps. Keep this mentality throughout the meeting and even after the meeting. It is not likely that everyone will feel that everything worked out equally but, any little bit helps.

• Revisit. At the scheduled meeting, schedule the next meeting based on the loved one’s needs. The care needed will change, therefore the care partners will change and subsequently the care plan will have to change. Revisit issues to give updates and make changes as needed. 

Care partner meetings can be meddling in tricky dynamics among family members and friends. Everyone holds on to old feelings both good and bad. However, the most important thing to remember is your goal, your loved one. This meeting has nothing to do with the care partners’ relationship but everything to do with the care provided to the loved one. Setting ground rules, such as taking the conversation very slow as to give everyone time to listen and process, may help in avoiding disagreements. If all else fails, family mediation is an option to assist in keeping the care of the loved one the one and only goal. Communication is the key to giving your loved one the care they deserve. We are all on different journeys but everyone’s goal is the well being of the loved one.

Sharing the Journey

April 2013 Sharing the Journey: Resources 101 workshops have concluded!!! It was a great fellowship indeed! This month’s workshops were held at St. Elizabeth Hospital in Gonzales, Louisiana on Monday evenings. Sharing the Journey is comprised of 4 educational workshops for caregivers and early-stage dementia patients where participants are given the opportunity to "Share the Journey" of Alzheimer's disease with a staff member.

Registered nurse and Alzheimer’s Services Education Committee member, Mary Anne Olivier, was one of four facilitators to “Share the Journey” with workshop participants. Having been a caregiver for many years for her mother who had Alzheimer’s, she was able to pull from her own experiences as a family and professional caregiver to share with the participants. Mary Anne discussed caregiver techniques for managing challenges with behavior or communication and stress management for caregivers. Mary Anne provides a comfortable atmosphere where questions and discussions about Alzheimer’ is encouraged.

Barbara Anthony is a registered nurse and President of Louisiana Enhancing Aging with Dignity through Empowerment and Respect, provided participants with information commonly prescribed Alzheimer’s medication, treatment and side effects. Participants in this workshop were able to gain greater understanding of how medication such as Aricept or Namenda works. The last workshop was facilitated by Attorney Jane Thomas of the Thomas Law Firm, LLC and Governor’s Office of Elderly Affairs. Ms. Thomas presented on preparing for incapacity, important legal issues facing seniors, and important legal documents in caregiving. Workshops offer participants a non-judgmental environment where they can ask questions and discuss the obstacles facing caregivers those with Alzheimer’s or related-dementia.

-Kristi Mellion, Program Coordinator

Of Being a Better Person

In the past few weeks, four of our former Charlie’s Place clients have passed away. Not a good way to begin a Blog, but a reflection that not only has me very grateful that I was given the privilege of knowing and serving these clients during their stay at Charlie’s Place, but also an acknowledgement and appreciation of the lives they had led...lives and full history possibly not known to those who cared for them.

George always called me “Miss Corpus Christi” referencing my hometown. He was a native Texan, too, and so most of our conversations always centered around the second largest State in the U.S. We’d talk about great sites and share memories of our respective growing up days. He gave me a sense of belonging, asking me about my home state, and I loved the reminiscing periods with him. He did talk about the Navy, but it slipped my mind until reading his obituary that he served in World War II. A life of service. A life well lived.

Georgia kept me on my toes. Intelligent, witty, and a great storyteller, she was a delight to engage in conversation. I remember how her eyes lit up when children from our Generations program visited Charlie’s Place. She loved children, and I could always tell she was a natural born educator. What I remember most about Georgia, however, was her deep spirituality. She always was an attentive participant in my Bible Study classes. One of the last events I directed in which she attended was a Christian Seder Meal on Holy Thursday, right before Easter. We closed the prayer service with singing the “Our Father.” As the music began to play, and everyone began to sing, Georgia lifted each hand beside her and clutched her neighbor. The clients all followed suit. Around the table, all the Charlie’s Place clients had bowed their heads and were holding hands and singing/praying the “Our Father.” The scene was a mental photograph that will never erase from my mind and one in which I will always cherish. It brings me to tears writing about it. You can’t imagine the overwhelmingly thrust of emotions I experienced with Georgia that day. I was so gifted to know her.

Another client named George also passed away. He was a character. I remember the day we completed the admission papers with his son and he noticed an electrical outlet high on the wall of our Program room. As he was leaving, he tapped it and turned to me and said, “That’s in the wrong place.” George was an Electrician so he knew the standards. I smiled and responded that we would take care of it. Quiet and reserved George made a memorable transition during his stay here at Charlie’s Place…one for our history books. He was the proverbial caterpillar that changed into a butterfly. Whatever the analogy, George experienced a metamorphosis at Charlie’s Place and by December of the year he had been admitted to Charlie’s Place, he was playing Santa for the children in our Generations program. And, though he could not really verbalize his excitement, I could read his eyes to see his expression of gratitude that playing Santa gave him a purpose and a sense of self-worth. I wonder sometimes if George and my dad crossed paths as both of them served in the Korean War conflict. I am sure there were many more stories to tell about George.

Last, but not least, we lost Bill. Bill had a short stay at Charlie’s Place and unfortunately, I did not get to know him as well as the other clients. However, I did experience Bill’s love of family and children and his love of music. Having been in the music ministry at Comite Baptist Church, Bill would ignite during sing-a-longs and Bible Study. What I remember most about Bill was his sensitivity, his placid nature, never wanting to impose on anyone, always offering assistance to others. He was one of those kind and gentle souls that one tries to emulate.

Four lives gone. These were individuals, contributing individuals to family and society, with generations of stories to appreciate and acknowledge. Yet, perhaps Alzheimer’s prevented anyone from looking beyond the disease, masking the immense history lessons of great benefit to us.

For me, the experience of knowing these four unique individuals, who happened to suffer from Alzheimer’s disease, can be described best by a line in the movie, “As Good As It Gets.” Jack Nicholson’s character tells Helen Hunt’s character, “You make me want to be a better man.”

For the two Georges, Georgia and Bill, and for all the present clients at Charlie’s Place, I whisper that line to myself at the end of each day, for each experience, each encounter with them is a privilege. All of them, past and present, and others we serve, simply, make me want to be a better person.

-Dana Territo, Director of Services

Protecting Your Skin From Sun Exposure

A new season begins--Spring is here! The warmer weather is finally upon us, but the sun’s rays are stronger. While enjoying the sun with your loved ones, below is some helpful information and tips:

As you age, your skin grows thinner, more fragile, and less likely to protect and rejuvenate itself. Because sun damage is the greatest threat to human skin, people with sensitive, older skin must take diligent precautions to avoid as much sun exposure as possible.

While various methods and cosmetic topical products are effective, understand that no single approach is 100% successful in warding off ultraviolet (UV) radiation, a known cause of skin cancer and other skin-related diseases.

The best advice is to combine smart sun care tools and techniques to protect your skin from the harmful effects of the sun. Here are some tips to help keep you sun-safe all season long.

1) Pick Shade Over Sun
Whether you're at home or out walking, prevent sun damage to elderly skin by staying in shady corridors or porches, especially during the hottest part of the day. The sun's rays are strongest in North America between 10 a.m. and 4 p.m.

2.) Apply Sunscreen Daily
Sunscreen is the most powerful skin care product you can use to protect aging skin. Dermatologists recommend that you apply an SPF 30 formula to exposed skin daily, whether you'll be indoors or out. Sunscreen of this strength is scientifically proven to absorb 97% of harmful UV rays, which are able to pass through clouds and glass. Reapply sunscreen after sweating or showering and use it liberally.

3.) Don’t Forget to Moisturize
Keep skin moist with a high-quality lotion or cream. Elderly skin is already prone to dryness, which sun damage and hot temperatures can make worse. A good moisture barrier created by applying a skin care cream or lotion prevents water loss from the various layers of skin.

4.) Wear Protective Clothes
Long-sleeved pants and shirts create excellent, inexpensive sun protection for elderly skin. Using specially designed UV hats and clothing that provide extra sun safety for times when you wish to be outdoors is recommended.

5.) Use Protective Accessories
Fabrics and films that block UV radiation are also used to make umbrellas, sunglasses, window shades and car window tints. Shield your sensitive skin from sun damage with these items.

-Effie Marcantel

Celebrating 30 Years!

It was wonderful to come together for our 30^th Anniversary Gala sponsored by L’Auberge Casino and Hotel on March 21. It is hard to believe how far we have come from the support group Mona Romaine started back in 1983! Though we still face the challenges of the devastating disease that is Alzheimer’s, we have continued to expand the network of educational resources and support throughout the 10-parish area we serve.

So many people who have been significant to our organization over the years made the evening a huge success! In addition, we were honored to have Lieutenant Governor Jay Dardenne as our Master of Ceremonies, Mayor Kip Holden and special guests James Carville and Mary Matalin. I must say the mayor’s extremely touching words moved me beyond tears. This disease is very close to my family making it all the more emotional! James and Mary kept it light-hearted and poignant as they shared their own story.  Ned Fasullo and the Fabulous Little Big Band provided live musical entertainment to complement the memorable evening in addition to a commemorative cake donated by Maureen Frey and an array of hors d'oeuvres and cocktails.

It was a powerful event with so many people affected by Alzheimer’s in some way! How nice to celebrate the accomplishments that have been made and the lives that have been impacted. I pray that a cure for Alzheimer’s will soon be available, but it is comforting to know that we can help caregivers through the challenging journey in the meantime. Our Executive Director, Barbara Auten, is dedicated to this mission and is also deeply affected. Thanks to the Baton Rouge community for making our efforts possible and making a difference in the lives of so many of us!

-Jeri McCullough

Driving and Alzheimer’s

According to a Scandinavian study published in the Washington Post, about half of older drivers killed in traffic crashes have signs of Alzheimer’s disease. These statistics suggest that older drivers involved in accidents should be tested for cognitive performance such as thinking and judgment. Additionally, family members and doctors of individuals with Alzheimer’s should watch for symptoms of impaired judgment or coordination that can lead to vehicular accidents and/or fatalities.

Private cars account for over 90 percent of trips made by seniors,” said Dr. David Carr, a geriatrician and a professor at Washington University in St. Louis, when he spoke at the Institute for Dementia Research and Prevention Forum last October. “While it’s often imperative for the safety of the driver and others on the road, losing the ability to drive is one of the biggest blows to an elderly person’s independence.”

So, how do we take the keys away from Mom or Dad when they are suffering from Alzheimer’s and/or Dementia? As Dr. Carr inferred, the ability to drive is often the last bit of independence and symbol of competence that an individual has, so taking those keys away can be a daunting and formidable task.

There are generally three requirements to be an able driver: vision, cognition and motor ability. These characteristics often decline with age, and all contribute to the safety of driving.

If you’re loved one continues to drive, pay attention to some warning signs for unsafe behavior:

1) Does he/she have difficulty navigating to familiar places, changing lanes or making turns?

2) Does he/she confuse the brake and accelerator pedals?

3) Does he/she have difficulty reading traffic signals?

4) Does your loved one make slow decisions?

5) Do they drive at an inappropriate speed or hit curbs while driving?

6) Does he/she become angry or confused while driving?

If you answered yes to any of these questions, these are indications that it is time to have your loved one stop getting out on the road. Easier said than done.

It helps to see the physician and get a note from in writing to be a useful reminder for him/her to stop driving. It is also a good idea to keep car keys out of sight and if possible, remove the car out of the driveway so the individual is not reminded of it all day. Often, family members remove a battery cable or have a mechanic install a “kill switch” that must be engaged before the car will start. Some families get creative and tell their loved one that the insurance has expired and the car can’t be driven.

Or, the individual can undergo a Driving Assessment and from that authority, with results in hand, be willing to relinquish the keys. At the Baton Rouge Rehab Hospital, for instance, an Occupational Therapist can perform a clinical evaluation to determine the safety of driving. A cognitive assessment tool is given as well as a Road Evaluation and recommendations will be made based on these results.

Focused concentration and quick reaction time declines with age and accelerates with Alzheimer’s. At first, the decision may be difficult to take those keys away and your loved one may mourn the loss of independence. However, you would not want to endure the consequences of that loved one being involved in a traffic accident. Take the keys no matter how much it hurts the both of you. 

-Dana Territo, Director of Services