MALE CAREGIVING

As a man providing care for a parent, spouse or other loved one, you may face unique challenges. But there are things you can do to make caregiving easier. Here are some tips that will help you succeed.

Know that you are not alone. Our society tend to view caregiving as a female role. But in fact, men make up nearly 40% of family caregivers. Mean can be very successful in this role. Community resources can help you be the best caregiver possible.

Ask questions. Get as much information as you can about your loved one’s condition. Find out what types of care your loved one will need both now and in the future. Talk to health professionals and other care providers.

Be open to new skills. You may have to learn to shop, cook, clean or do ther household tasks that are new to you. You may need to learn to bathe or dress a loved one. At first, you may feel uncomfortable doing these things. But over time it will become easier.

Ask for help! A friend or relative may be able to help you learn new household tasks. A visiting nurse or home health aide can help you learn to provide personal care. Find out about community resources such as adult day care or transportation services. If you work, ask about employee assistance programs for caregivers.

Learn to delegate. Decide which tasks you want to do yourself. Get help with other tasks. Try meal delivery, a cleaning service or online grocery shopping.

Take care of your own health. You cannot take care of a loved one if you feel sick or tired. Make sure that you are eating well and getting enough rest and exercise. Take regular breaks. See a health care provider if you are depressed, drinking more alcohol than usual, or using prescription drugs to help you cope.

Find support and male role models. It is normal to feel strong emotions such as grief, anger and helplessness. It is not a sign of weakness to feel or express these emotions. If possible, spend time with other men who face similar challenges. This may help relieve stress. Share your feelings with a caregiving class or support group.

Take pride in your role. Male caregivers are becoming more common. But you may find people react to a male caregiver differently than they do to a female caregiver. This can happen even in hospitals or nursing homes. Use the opportunity to educate others about your role as a competent, caring provider.

Alzheimer’s Services of the Capital Area will be hosting a Lunch-N-Learn Sessions for Male Caregivers on Wednesday, June 12th, 2013 and Wednesday, June 19th at 3772 North Blvd., Baton Rouge, Louisiana. The presenter is Mike Buchart/Male Caregiver. All Lunch-N-Learn programs begin at noon and last one hour. Light lunch is served and registration is free. Please call Katherine Schillings at Alzheimer’s Services, (225) 334-7494 Ext. 13, or email programs@alzbr.org to reserve your seat.

-Ed Picard, Respite Center Coordinator

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