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One of the most difficult aspects of being a caregiver for someone living with dementia has nothing to do with their actual daily care.
The challenge involves acting as a loved one’s advocate, speaking up for their needs when they can no longer formulate what is best for themselves. This situation is most difficult when physical challenges arise, such as the need for surgery or rehabilitation.
These situations also occur daily. There were times I wanted to act as my mother’s bodyguard, her protector, to the outside world. It was my job, in a way, to speak the unspoken. To say the unarticulated. I couldn’t be there all the time. There had to be other ways.
Being Named “Caregiver”
When my first husband was scheduled to receive a bone marrow transplant, I was assigned the duty and title of caregiver. I had already been his unofficial one, but agreement to this designation was required for entrance to the program. I felt important. He and I were now on equal footing. I had as much to say as he did in this quest.
Not everyone has the flexibility to be a caregiver, to be the point person, at those important junctions. However, there are certain approaches one can take or learn from, to become the advocate when necessary.
Before someone enters a hospital care setting, it’s important to establish a line of communication and a routine amongst yourself and your loved one. Just as one might do when pregnant, always carry a bag of essentials. This might include copies of living wills, snacks for your loved one (my mother loved Sandies cookies), a notebook, lavender lotion, a book for yourself or a volume of poetry to read and maintain calm. While we all carry technology in our pockets to keep us connected to the outside world, consider books or magazines to keep your eyes from tiring and your focus on what’s important.
Consider making a homemade sign to leave in the loved one’s room. Words to remind those attending to a loved one of your loved one’s name, a few tidbits about them, and a reminder, if necessary, this person experiences memory loss, etc. Some care communities will also send along paperwork which might also include a type of greeting card for the doctors. A way of saying, thank you for attending to me - and it’s important you know the real me.
Is this necessary? I’ve spent many hours in hospital and care home settings. My husband works in a hospital. We’re familiar with the demands on both sides of the patient bed. The pressure for everyone to perform admirably for the sake of someone they don’t know, and someone you love intensely, is real. The stakes are high. Eliminate the stress and tension whenever possible.
Become a Manager
“As your care recipient’s advocate, be involved, don’t accept the status quo, and don’t be afraid to voice your concerns,” writes Nancy L. Kriseman, in Mindful Caregiver: Finding Ease in the Caregiving Journey.
It’s okay to challenge what some might view as norms. Our loved ones are individuals. It only makes sense they would not fall into the “norm.” The challenge is in the communication style which we choose to adopt when speaking for our loved one.
When my mother was dying, family members wanted to come to town and visit one final time. As her ongoing caregiver for over six years, I didn’t want to leave her side. I had to trust in those members, and in the staff. However, there was an issue with one family member. Given the personality of this person, I fully expected them to walk into the care home and make demands, despite the groundwork I had laid for my mother’s peaceful goodbyes. The staff understood. They had, after all, understood my mother’s needs sometimes or anticipated them better than I could. I had been correct. That person did make demands. With a kind heart, the staff convinced that person they would ensure my mother’s needs were being met.
In the end, I didn’t have to be concerned so much about my communication style, but that of the trained staff. The most important aspect is that one remains committed to the values you believe are important to uphold.
The secret to caregiving is understanding there will be days when you feel you are advocating alone and recognizing there are always ways to give yourself some backup by being prepared.
Annette Januzzi Wick is a writer, speaker, and author of I’ll Have Some of Yours, a journey of cookies and caregiving. (Three Arch Press). A frequent contributor to Cincinnati.com, her work has appeared in Cincinnati Magazine, nextavenue.com, Still Point Arts, 3rd Act Magazine, Belt Magazine (forthcoming) and others. Visit annettejwick.com to learn more.
Compassionate Dementia Care for Aging Loved OnesCaring for a loved one with dementia requires a deep well of compassion and patience. It's about understanding their unique needs and finding ways to connect with them despite the challenges. Creating a comforting environment, engaging them in meaningful activities, and offering gentle reassurance can make a world of difference. Your presence and empathy provide not just practical support but emotional comfort as well, helping them feel secure and valued. Compassionate care isnt just about meeting needs; its about fostering dignity and maintaining connections that matter.Understanding Unique NeedsCaring for someone with dementia requires a deep understanding of their specific needs and preferences. Each persons experience with dementia is unique, so taking the time to learn about their history, likes, and dislikes can significantly enhance their care. This personalized approach allows you to tailor your interactions and activities to better meet their needs, making daily life more enjoyable and less confusing for them.By focusing on their individual preferences and routines, you help them feel more at ease and connected. This tailored care approach not only addresses practical needs but also respects their sense of identity and personal history, which is vital for maintaining their dignity.Creating a Comforting EnvironmentA soothing and familiar environment can greatly impact the well-being of someone with dementia. Ensure their living space is safe, organized, and filled with items that bring them comfort, such as family photos or favorite mementos. A stable environment helps reduce confusion and anxiety, providing a sense of security.Additionally, make the environment easy to navigate by minimizing clutter and using clear labels. This approach not only supports their physical safety but also contributes to their emotional comfort by fostering a sense of familiarity and stability in their surroundings.Engaging in Meaningful ActivitiesIncorporate activities that are meaningful and enjoyable for your loved one. Activities like gardening, listening to music, or simple crafts can provide joy and a sense of accomplishment. Engaging in these activities helps stimulate their mind and keeps them connected to their past interests.Tailor these activities to their current abilities, ensuring they remain enjoyable rather than frustrating. Providing opportunities for them to participate in activities they love enhances their quality of life and helps maintain their sense of purpose and identity.Offering Gentle ReassuranceGentle reassurance is crucial for someone with dementia, as it helps alleviate confusion and anxiety. Use calm, soothing language and offer consistent support, especially during moments of distress. Reassuring words and a soothing tone can provide comfort and help them feel more secure.Consistency in your approach is key; regular, gentle reassurance fosters trust and emotional stability. By consistently offering comfort and understanding, you help create a sense of safety and predictability, which is essential for their emotional well-being. Maintaining Personal ConnectionsMaintaining personal connections is vital in dementia care. Regular, meaningful interactions with family and friends help reinforce their sense of identity and provide emotional support. Encourage visits and social interactions that are comfortable and enjoyable for them. Creating opportunities for connection helps combat feelings of isolation and loneliness. These interactions not only offer emotional comfort but also help maintain their social skills and sense of belonging, which are crucial for their overall happiness and well-being.Encourage Regular VisitsFacilitate frequent visits from family and friends to maintain personal connections. Regular interactions help reinforce their sense of identity and provide essential emotional support. Schedule these visits at convenient times and ensure they are tailored to the individuals comfort level. Meaningful visits can enhance their overall well-being, making them feel valued and supported.Promote Comfortable Social InteractionsCreate opportunities for social interactions that are comfortable and enjoyable, such as small gatherings or one-on-one time with loved ones. Choose activities that align with their interests and preferences to ensure they are engaged and content. Comfortable social interactions help reduce feelings of loneliness and promote a sense of connection and joy.Foster Emotional SupportEncourage regular, supportive conversations with family and friends to provide emotional comfort. By acknowledging and affirming their feelings, you help them feel understood and valued. This emotional support is crucial for their mental well-being, as it helps them navigate the challenges of dementia with greater confidence and peace of mind. Maintain Social SkillsEngage them in social activities and conversations to help preserve their social skills and sense of belonging. Regular interaction encourages them to participate in meaningful exchanges, which supports their self-esteem and social Connectedness. Maintaining these skills is vital for their overall happiness and for fostering a supportive, inclusive environment. Create Opportunities for ConnectionDevelop and encourage activities that facilitate personal connections, such as reminiscing about shared memories or engaging in hobbies together. These interactions help combat feelings of isolation and loneliness by providing a sense of belonging and enhancing their quality of life. Meaningful connections enrich their daily experience and contribute to their emotional well-being. Fostering Dignity and RespectRespecting and preserving dignity is fundamental in dementia care. Always approach your loved one with kindness and respect, acknowledging their individuality and personal preferences. Avoid making them feel like a burden or diminishing their self-worth.By treating them with dignity and honoring their choices, you help maintain their self-esteem and sense of identity. This respectful approach is essential for their emotional well-being and helps them feel valued and understood. Providing Emotional SupportEmotional support goes beyond meeting physical needs. Offer a listening ear, comforting words, and physical affection to provide emotional comfort. Your empathy and presence can be incredibly reassuring, helping them navigate the emotional challenges of dementia.Being emotionally supportive helps build a trusting relationship and offers comfort during difficult times. Your compassion and understanding make a significant difference, providing them with a sense of security and emotional stability. Balancing Care and Self-CareWhile caring for a loved one with dementia, it's important to balance their needs with your own self-care. Taking care of yourself ensures you can provide the best care possible. Manage stress and seek support when needed to maintain your own well-being.Self-care allows you to approach caregiving with renewed energy and patience. By prioritizing your health and well-being, you ensure that you can offer consistent, compassionate care, which benefits both you and your loved one. Conclusioncompassionate dementia care is essential for ensuring that aging loved ones receive the respect, understanding, and support they need. By fostering meaningful interactions, providing emotional comfort, and maintaining personal connections, caregivers can significantly enhance their quality of life. Tailoring care to individual preferences and needs helps create a nurturing environment where they feel valued and secure.At Home Matters Caregiving in Pittsburgh, PA, we are committed to delivering personalized and empathetic care solutions tailored to each individuals unique situation. Our team is dedicated to supporting families through the complexities of dementia care, offering guidance and resources to ensure your loved ones well-being. For further assistance and information on how we can help, please reach out to us directly.
What We Dont Know We Dont Know in Health Care: September 24, 2024 -Oral Care, Monitored Meals, and Aspiration PneumoniaProper oral care is crucial for maintaining optimal health. Keeping the mouth clean not only helps maintain the protective properties of saliva but also reduces bacteria in the mouth which can be a source of infection in aspiration pneumonia. In addition, monitoring meals and assisting with feeding for those at high risk for aspiration is also a necessity. The process of swallowing involves dozens of muscles that start in the mouth and include the pharynx, larynx, and esophagus. These muscles can become weakened with age and from various, often age-related diseases. The aging population is especially at risk for aspiration pneumonia due to comorbidities, frailty, and conditions that can impair swallowing. As a result, aspiration pneumonia is one of the leading causes of death from infection in individuals over the age of 65. One study shows that 1 in 10 deaths from pneumonia in elderly nursing home residents may be prevented by improving oral hygiene (Sjogren et al., 2008). Unfortunately, proper oral care and monitoring of meals is often overlooked in the health care setting. Perhaps the greatest reason for this is the challenge that almost every health facility faces today: adequate staffing. When I started working in acute care as an RN over 20 years ago, nursing assistants (these are the staff generally responsible for proving oral care in an acute care setting) were typically responsible for 5-7 patients. Nurses had 3-5 patients (this was on a step down cardiac unit). Between the nurse and the assistant, we were able to provide oral care at every meal and offer one-on-one assistance to any patient that was at risk for aspiration. This is no longer the case. RNs oftentimes look after upwards of 8 patients, and there is generally either no nursing assistant on the floor or only 1 for a patient load that can exceed 20. Consequently, proper oral care is neglected. I have often seen patients that are aspirating during meals, but do not have adequate staffing on hand to provide them with the supervision and monitoring that they need. This presents a hazardous catch-22: the aging individual needs to eat to maintain nutritional needs yet he/she needs assistance with eating to prevent aspirating pneumonia. How can this be remedied? If the family is present, they can provide oral care and meal monitoring. If meal monitoring is required for an at-risk individual, its recommended to touch base with the health care team to inquire as to what the specific aspiration precautions are (every individual may have a different need and/or recommendation). A care companion can also be hired to provide the needed care. I hired a companion for my father when he was in a skilled nursing facility. He was not getting his teeth brushed or flossed regularly, and I was seeing a decline in his dentition. Having this extra support provided him with much needed assistance and the care companion had the added benefit of encouraging him to eat more at every meal, something that was a bonus as he was not meeting his nutrient needs. Touching base with staff to request that oral care and meal monitoring be done can also be helpful. Having an advocate to ensure necessary care is getting done can also be very effective in the health care setting. What is proper oral care and effective meal monitoring? Proper oral care includes brushing the teeth for at least 1 minute after every meal. It also includes using a soft bristle brush, fluoride toothpaste, flossing daily. A final component of oral care that is often not discussed is denture care. Dentures should be cleaned at least once per day and removed at bedtime. Removing them prior to sleeping can greatly reduce the risk of pneumonia (Iinuma et al. 2014). Effective meal monitoring includes adequate supervision during mealtime for those at risk of aspiration. Such supervision includes ensuring the individual is properly positioned for a meal (head of bed as high as can be tolerated and supine position), takes small bites, eats slowly, swallows a couple times in between each bite, and intermittently takes a sip of liquid to clear the mouth of food particles. The use of straws is generally not recommended for an individual at risk for aspiration as it propels the food to the back of the throat and hence can increase risk. I recall when I was working as a Registered Nurse (RN) in acute care that I was constantly removing straws from the bedside of at risk individuals and often reminding them to eat slowly and swallow at least twice between each bite to ensure food clearance. Individuals at risk for aspiration often require a modified texture diet as it can further prevent the aspiration of food and liquids. This is a brief summary of the attention to detail needed in addressing oral hygiene and meal monitoring amongst the aging population. Both measures can play a significant role in reducing aspiration pneumonia. If you would like more information on understanding proper oral care or any other questions that you may have regarding aging life care, please feel free to reach out to me. Sources:1. Sjogren P, Nilsson E, Forsell M, Johansson O, Hoogstraate J. 2008. A systematic review of the preventive effect of oral hygiene on pneumonia and respiratory tract infection in elderly people in hospitals and nursing homes: effect estimates and methodological quality of randomized controlled trials. J Am Geriatr Soc. 56:21242130. 2. Iinuma T, Arai Y, Abe Y, Takayama M, Fukumoto M, Fukui Y, et al. 2014. Denture wearing during sleep doubles the risk of pneumonia in the very elderly. J Dent Res. doi: 10.1177/0022034514552493 3. F Muller, 2015. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4541086/#
The Role of a Geriatric Care ManagerThe share of the United States population over the age of 65 has risen to 16%, and it is expected to climb further to 23% by 2060. People are living longer, and that means that people also have more specialized health care needs.Aging life care calls for a different kind of attention, as various conditions and syndromes begin to present themselves. Depending on which conditions those are, the situation can get complicated pretty quickly. In some cases, it might be worthwhile to consider hiring a geriatric care manager.As we and our loved ones age, we usually end up needing support from the people around us to make sure our needs are met. Family members in particular tend to shoulder this responsibility. But there are many reasons that might make it difficult to have a good support network in place. The most common reason is that family caregivers simply live too far away to provide reliable senior care management.In this context, geriatric care managers can be thought of as "professional relatives." If a family member is not able to provide long term care, geriatric care managers can help provide any and all services related to elder care. They are usually licenced nurses or social workers who are trained in aging life care, and they organize care plans and advocate for their patients needs.If you hire a geriatric care manager, you will be able to count on them to navigate the complexities of the health care system. It can also be helpful to have someone who can make decisions from a neutral point of view, as family caregivers sometimes have to make difficult decisions that are deeply personal.The primary responsibilities of a geriatric care manager are:Coordinating elder care between multiple service providersDeveloping both short and long term care plansHelping manage emotional concerns, stress, and anxietiesHelping manage transitional careHiring additional caregivers as necessaryMake home visits and evaluate living conditionsOngoing assessment of aging life care needsAll of this helps take the pressure off family members and ensures that geriatric care management is always under control.When to Seek Support With an Aging Life Care ExpertThere are many cases in which families are perfectly capable of managing aging life care for someone they love. But it can be challenging to know when you might be taking on more than you can reasonably expect to handle. As discussed above, one of the most obvious challenges is that family members do not live near the person who needs their care. But other complications are not as straightforward.You should consider hiring a geriatric care manager when:You need help with a complex issue. Lots of medical conditions can lead to the kinds of behaviors that should really be handled by aging life care professionals. Issues related to dementia, verbal abuse, or physical violence are among these.Your loved one will not talk to you about their health. Whether it is out of concern for privacy, a soured relationship, or an inability to describe what they are experiencing, older adults sometimes do not let relatives help them. A geriatric care manager gives them someone they feel comfortable talking to about their health. You are having trouble communicating with service providers. Geriatric care managers have a better understanding of where other aging life care professionals are coming from, so if you have run into a wall in negotiations or are not able to get the information you are looking for, your care manager is in a position to communicate more effectively.You do not know what to do. Caring for a loved one can be complicated for reasons beyond their health. We always want the best for them, but sometimes there are multiple pathways and it is not clear which one will be best. Geriatric care managers can provide their objective point of view to help your loved one receive the senior care that is right for themFinding Geriatric Care ManagersA geriatric care manager does not have to hold a state level license. But because many of them come from fields in health care, they elect to maintain their credentials. Care managers who come from social work often have to have active licensure in order to practice in their state.So on the one hand, a lack of certification or licensure is not necessarily a deal breaker. On the other hand, it is important that they can demonstrate their experience as aging life care professionals. If you are hiring a geriatric care manager, be sure to ask about the following:Do they have direct experience with managing issues specific to your loved one? This is especially important to cover in cases of severe injury or cognitive decline.Do they have experience with crisis care management? If your loved one is prone to seizures or is at high risk for falls or heart attacks, aging life care professionals need to know how to handle this type of emergency situation. Also ask them if they are available to respond around the clock, or if they have set hours.How will they communicate information to you? It might seem like a tedious question, but being on the same page about communication methods and styles can save everyone a lot of frustration and confusion.Can they provide references? It can be hard to really understand who you are working with based on their resume alone. Talking to people who know them well is a good way to corroborate your first impressions.How are their costs and fees structured? Senior care can be expensive it is typically not covered under Medicare or most other insurance plans so it is important to understand how much things will cost up front. Geriatric care managers charge by the hour, typically within a range of $75200 per hour.When families turn to aging life care professionals for care management services, they need to know as much as possible about the roles and responsibilities of the people they are bringing into the fold. Geriatric care managers help families navigate the complexities of elder care and relieve them of the stress and anxiety that so often comes along with it. They are experienced in working with a variety of national and local resources, care providers, and care services to ensure the highest quality of life possible.Give me a call for a FREE 20 minute consultation at 714-403-7040. source: Keystone Health, 2024. https://keystone.health/geriatric-care-manager-role-responsibilities#table-of-contents
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