A Prayer Journal – Number Two

Dementia caregiver burnout is a critical issue that often arises when individuals care for loved ones with dementia. It occurs when caregivers become physically, emotionally, and mentally exhausted due to the overwhelming demands of caregiving. This burnout can lead to negative health outcomes for the caregiver and a decrease in the quality of care provided to the individual with dementia. Here is some important information about dementia caregiver burnout: What is Dementia Caregiver Burnout? Caregiver burnout refers to the state of physical, emotional, and mental exhaustion experienced by those who provide care to someone with a chronic illness or disability, such as dementia. In the case of dementia, the caregiver often faces challenges such as: Memory loss: The person with dementia may forget important information, causing the caregiver to repeat instructions or explanations frequently. Behavioral changes: Dementia can lead to changes in behavior, including aggression, agitation, and depression, which can be difficult for the caregiver to manage. Constant supervision: Individuals with dementia may require constant supervision, which can be exhausting for the caregiver, especially if they are providing 24/7 care. Symptoms of Caregiver Burnout Caregivers may experience a variety of physical, emotional, and mental signs of burnout. Some of these symptoms include: Physical exhaustion: Feeling constantly tired, having trouble sleeping, or experiencing headaches and aches. Emotional exhaustion: Feelings of helplessness, anxiety, frustration, or sadness. Depression and anxiety: A caregiver may experience feelings of loneliness or withdrawal, which can lead to depression. Irritability or anger: Caregivers may become easily frustrated or irritable due to the challenges they face. Lack of concentration: Struggling to focus or complete tasks effectively. Social withdrawal: Avoiding social engagements or isolating oneself due to fatigue or lack of energy. Causes of Caregiver Burnout Several factors can contribute to dementia caregiver burnout, including: Increased caregiving demands: As dementia progresses, the individual may require more care and supervision, leading to increased demands on the caregiver’s time and energy. Lack of support: Caregivers who don’t have a support network or access to resources may feel overwhelmed. Financial strain: The financial burden of caregiving, especially if the caregiver has to reduce working hours or stop working altogether, can increase stress. Unrealistic expectations: Caregivers may put excessive pressure on themselves to provide perfect care, leading to feelings of inadequacy or failure when they cannot meet these expectations. Lack of respite: If a caregiver has no time for themselves or is unable to take breaks from their caregiving duties, they may experience burnout more quickly. Preventing and Managing Caregiver Burnout It’s important for caregivers to take steps to prevent burnout, and when it occurs, to address it as soon as possible. Some strategies include: Seeking respite care: Caregivers should take regular breaks and consider using respite care services, where another caregiver or facility provides temporary care for the person with dementia. Building a support network: Connecting with other caregivers or family members can provide emotional support and practical help. Support groups, both online and in-person, can be valuable resources. Setting boundaries: Caregivers should establish clear boundaries, recognize their limits, and ask for help when needed. Taking care of personal health: Caregivers need to prioritize their own health by eating well, exercising, getting enough sleep, and engaging in activities that promote relaxation and well-being. Seeking professional help: If feelings of burnout or depression persist, caregivers should consider speaking with a mental health professional or counselor who specializes in caregiver support. Using technology: Tools such as reminder apps, medication management apps, and remote monitoring devices can reduce the burden on caregivers by helping them keep track of caregiving tasks and ensuring the safety of the person with dementia. Resources for Caregivers There are many resources available to caregivers, including: Alzheimer’s Association: Provides support, education, and resources for caregivers of individuals with Alzheimer’s disease and other forms of dementia. National Institute on Aging (NIA): Offers helpful information about dementia care and caregiving tips. Caregiver support groups: Local or online groups where caregivers can connect, share experiences, and provide each other with support. Respite care services: Many communities offer respite care programs, where caregivers can find temporary relief. Conclusion Dementia caregiver burnout is a serious concern that can have far-reaching effects on both the caregiver and the person receiving care. It is essential for caregivers to recognize the signs of burnout and take proactive steps to manage their well-being. Through support, self-care, and access to resources, caregivers can reduce the risk of burnout and continue to provide high-quality care for their loved ones. If you're a caregiver experiencing burnout or know someone who is, reaching out for help is crucial. Taking care of yourself is just as important as taking care of your loved one.

A PRAYER JOURNAL – Number one of two, by Bruce Maloof (name changed for anonymity), a caregiver.  Lord, I haven’t written a prayer journal for a very long time. We both know why. You probably know more of the why than I do. In many ways I don’t know how to journal or pray when it comes to the main terror in my life. Sally, my wife of more than 50 years and counting has Alzheimer’s disease. That disease has been affecting her abilities and memory for 6 years now, or at least our awareness of it. It is progressive. If caught and understood early, the symptoms might be delayed by diet and lifestyle changes. But the knowledge about these changes has come too late for her. She has crossed over to the assessment that the disease is terminal. She will eventually die of it. The hardest part of this disease is that it is progressive. It takes little bites out of brain function. A lost function here and a lost function there. A lost memory here and a lost memory there. First it is short term memory and not being able to do tasks that take multiple steps to accomplish. Then it takes away words of things. It takes away one’s own history, first short-term memory then the memory of one’s past. With short-term memory compromised it takes away the ability to drive safely. One can remember the mechanics of driving but not the immediate environment around the process of driving. It takes away one’s ability to function in the complicated world of cellphones, computers, remote controls, microwaves, electrical switches, etc. There is the loss of where things are, where to find things, or where to put things be it kitchenware, refrigerator, freezer, pantry food, or clothing, and a whole variety of household things. There is the not knowing what, how, or when to feed the dog, or maintain food for the birds, etc. It eventually takes away the basic life skills of preparing a meal, knowing what to wear or when to change clothes. One forgets to take a bath, brush their teeth, drink enough water, comb one’s hair or put on make-up. Slowly there is the loss of knowing how to take pills, how to eat with spoon or fork, or where to go to the bathroom. I tried for days to get Sally to poop in a tray using a porta-potty with no pee. I put signs on her toilet in our master bath, “pee only here,” and a sign on the porta-potty “poop here.” Then I taped all the other toilets in the house shut. I needed the poop sample to send to a lab for gut analysis. She couldn’t do it. There was no way to make her understand what she had to do, poop one place and pee in another. I finally gave up. When a person gets to the Alzheimer’s stage Sally is in, they need 24/7 supervision. Leaving her alone can be dangerous. Her safety is at stake. And her own sense of being alone and not knowing what to do or where anyone it can be very frightening. People with Alzheimer’s disease become dependent on others to fill in the functions of living that they can no longer do for themselves. This is where I come in. I have been and continue to be her primary caregiver. I am probably not the best caregiver because of my lack of training and innate lack of basal right brain dominance. I know that I need counseling in a variety of ways. I have no one to talk to about my roller coaster emotions, frustrations, worries, and decisions that must be made. I know I need help but don’t know where to find it. I cry! If I let my true deep feelings of the loss I am experiencing as Sally declines, I break down and cry! Nobody like a cry-baby. Men don’t like to see another man cry, especially in a group setting. Buck up – be a man is the message. Yet they don’t know what it is like to experience your wife, your companion, the love of your life, in all of what has made up her person and her abilities slowly, tortuously disappears. Sally has become a stalker and shadows me everywhere. She never wants me to be out of her site. As she doesn’t remember her yesterdays, doesn’t know what is happening in her todays, even though I write the day and its activity on a white board in the kitchen, and she doesn’t know her tomorrows. Life for Sally exists in the ever present now. The concept of time is lost. Thus, when she feels the need to know something she asks. With words gone, sentence structure is messed up. I often can’t understand the question. When I do, I mostly answer. But very often, not always, she can’t remember the answer for even a few seconds. So, she asks again, and again, and again, and again – which is very frustrating and tiring. So here I am Lord. I have tried to discover ways to help Sally; progression from Alzheimer’s to slow down. I have had no success. I may have slowed the progression down a bit, but that is hard to measure. The latest research and information reports that the progression of Alzheimer’s disease might be slowed if it is caught early enough. Things such as lifestyle changes and diet may help for to mitigate some of the symptoms. Sally is in the later stages of Alzheimer’s disease according to the latest cognitive evaluation. So now what? Do I keep trying and see if there is any possibility to improve the symptoms of the disease? Or do I say it is time for us to go into a care facility where life is much easier to manage? For most this wouldn’t be a hard choice to make. A house is just a house. To make life easier, downsize is normal and natural. But it is a little different for me. It is not just a house. It is very a unique and beautiful home. Together we designed and decorated our home. Yes, Lord, I am very proud of our home. I enjoy its aesthetic beauty. Our home represents me, who I am, what I have been. But it is big and too much for Sally in that it has too many rooms, functions, and stuff. It breeds confusion in her. Yet, she too, doesn’t want to leave and go into the unknown, unfamiliar care facility when presented with the possibility. So how does one make the decision? If I force myself to be realistic, the decision to move Sally into a care facility has mostly to do with safety and socialization. Living where we are is beautiful but can be too isolating. Sally sees only me and a hired caregiver for a couple of hours weekdays. I think one of my biggest questions is where you come in, in the context of Sally’s disease. Somewhere along this journey I have gotten the idea that you are not going to heal Sally of the disease. That you will just let life take its course as we are all mortal anyway. We are in our late 70s. Sometimes I think you are testing me for patience. I pray the fruits of the Spirit described in Gal. 5:22. Alzheimer’s disease challenges nearly all aspects of them. I am a flawed, fallen human being. I am so well aware of that. I am most definitely in need of a savior. At this point Lord, I don’t know even what to pray for. If I belong to you, and I am of the firm conviction that I do, I need your help. How, when, where, or what I don’t know. But I truly need your help. Forgive my failings and keep me connected to your love and grace. For I need all the love and grace I can manage to receive despite myself. Hold both Sally and me very close. For without the sense of your presence in our lives, everything seems futile and lost. Allow love, your kind of love, to succeed and direct my course. I pray this In Jesus’s name. Amen.