November is Alzheimer’s Disease Awareness Month, but honors caregivers as well
Most families affected by Alzheimer’s disease know that November is “National Alzheimer’s Disease Awareness Month,” but some members of those same families are not aware that family caregivers are honored during the month as well. Jamie Huysman, a reporter for the South Florida Sun Sentinel, wants everyone to know that November also honors caregivers as “National Family Caregivers Month.” Huysman writes that it is important to celebrate this special month by becoming aware that as the U.S. population ages, an increasing number of people will become caregivers to meet the need. The writer says that family caregivers provide $400 billion of in-kind care, making these unpaid caregivers the group that is responsible for the majority of the nation’s actual healthcare. Huysman, who is a psychologist and licensed clinical social worker, writes that it is equally important for caregivers to see to their own needs, reminding us that a disproportionate number of family and professional caregivers die before their loved ones and clients. He compares family caregivers to first responders, telling us that some of his patients had “compassion fatigue,” the same clinical situation generally associated with police, firefighters, EMTs, and clergy members. First responders routinely run into burning buildings when others are running out, while family caregivers do much the same thing, Huysman wrote. As a certified compassion fatigue therapist, he calls family caregivers “Family First Responders” and says they may succumb to caregiver burnout or compassion fatigue. As Alzheimer’s progresses to the latter stages of the disease, the caregiver is the one who meets all the needs of the loved one with the disease. While the caregiver spends more time addressing those needs, the caregiver may reach a state of physical, emotional, and mental exhaustion. Experts refer to this state as caregiver burnout. Huysman says compassion fatigue is a step beyond caregiver burnout. It occurs when unresolved traumas are triggered through taking care of others and bearing witness to their stories, day in and day out, he wrote. With the holidays fast approaching, Huysman says this is not the time to become a martyr. November could be the appropriate time for a caregiver to reassess their situation and give him or herself the gift of a healthy life. Step back and take a break, ask your family members to take over for a while or at least contribute to the care of the loved one. Since the government has yet to address the impending Alzheimer’s epidemic, where would loved ones with Alzheimer’s be if they could not rely on healthy, family caregivers.
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Family members in denial create obstacles to caring for patients with Alzheimer’s
A person’s refusal to believe that a family member suffers from Alzheimer’s disease adds more confusion to the dynamics of caregiving. Angela Lunde, who writes the Alzheimer’s Blog for the Mayo Clinic, addressed a comment from one of her readers. The reader, who Lunde refers to as Norma, reported that her brother insists that his siblings not fix any meals for their mother who has mild Alzheimer’s disease. The brother believes that since their mother only has short-term memory loss, she will eventually figure out how to prepare her own meals. From his statements, Norma thinks her family is in denial about their mom’s condition and is looking for yet another reason to stay uninvolved. Lunde writes that readers who comment on the blog frequently mention the theme of family members in denial. She says that the denial is similar to a person who is new to the role of caregiving, when caregivers debate between promoting independence and offering help. The compassionate nature found in most of us want to step in and help, but we realize it may feel as though we are giving up on the person or crushing their dignity, Lunde wrote. The writer says it is not always a memory problem or one of forgetfulness; sometimes it is a decline in processing the steps needed to complete a task. Many experts note that executive functioning, which involves the skills needed to plan, organize, initiate, and monitor actions, is one of the first abilities affected by Alzheimer’s. So, while Norma’s mother should be able to make her own meals, she just cannot organize, plan, and execute all the steps needed to prepare a meal. Everyone can agree that patients with Alzheimer’s did not choose to stop making dinner, managing finances, or driving, Lunde wrote. They are not suffering a bout of laziness, or being unmotivated and no one wants to give up their independence. The brother will need to realize that people with Alzheimer’s cannot “just try harder” and it is not realistic to expect them to do all they used to do, she wrote. Her advice to Norma was to diffuse any anger she has by making piece with the way things are in her family. Choosing to operate from a place of acceptance is a form of self-care, Lunde wrote.
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Aggressive behaviors: No one wants my sick, darling dad
Fiona Phillips has had it with the way licensed health professionals are treating her 76-year-old dad who has Alzheimer’s disease. Phillips, a reporter for The Daily Mirror, wrote an article a few weeks ago about finding a facility to properly care for her father. She placed him in a specialized dementia care home and felt relieved that he would finally receive the care he needed from those trained to managed his symptoms. Her father’s dementia causes him to be aggressive and combative, which are common behaviors for some patients with Alzheimer’s disease. The writer’s family includes two young sons and she felt she could no longer handle her dad’s uncontrollable behaviors. Phillips said she was relieved after meeting the staff at the facility, referring to them as the most amazing, committed staff. The next morning, she received an urgent call from the facility, saying they could not manage him because he had periods of aggression and they felt at risk. In the latter stages of the condition, it is well known that patients with Alzheimer’s may develop bouts of agitation where they may become physically or verbally aggressive. The agitation also causes them periods of restlessness, delusions, hallucinations, and a general emotional distress. In addition, you must add wandering to that list of behaviors. Phillips thought the specialized facility she selected could manage her father’s symptoms. Needless to say, the call greatly angered her. Phillips contrasted the medical response of a patient with Alzheimer’s to a patient who suffered a heart attack or has cancer. There would be a whole pool of care and sympathy for the cancer or heart attack patient, but for some patients with Alzheimer’s, even trained professionals sometimes shy away, she wrote. Instead of blaming the disease, these professionals seemingly hold the patient with Alzheimer’s at fault. Even though, they should know better. That week was a rough one for Phillips. She started the week by helping publicizing the UK’s Department of Health’s latest drive to encourage test for people who think they might have early signs of dementia. Hours later, police from Hampshire were searching for her father after he went missing for eight hours. Her father would rather be dead than here as he is, she said. The writer concludes that the whole reason that a cure has not been found for Alzheimer’s, despite the UK’s boasting that it has some of the world’s top scientists, is the lack of research funding. That has to change, Phillips wrote.
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Taking steps to limit your loved one’s wandering
Serving as a caregiver is a tough, 24/7 job where caregivers generally stay with their loved one with Alzheimer’s disease for the majority of time. When the caregiver takes a moment to go do something else to help their loved one, upon their return they might find that their loved one is gone. Your loved one is wandering, which is defined as traveling by foot or car and becoming disoriented. Wandering is a common behavior among people with Alzheimer’s disease. About 60 percent of people with Alzheimer’s wander at some point in the course of the disease, according to Beth Kallmyer, senior director of constituent services at the Alzheimer’s Association. Elizabeth Cohen, a senior medical correspondent for CNN, reviews ten ways to limit wandering and keep your loved one safe. Caregivers should think about wandering as a top concern that far outweighs the loved one’s behavior of repeatedly asking the same question or even leaving the stove on in the kitchen, Cohen wrote. The second step reminds us to notice the red flags of wandering. While wandering can happen at any time, it is more likely in certain situations. For example, a loved one with dementia could easily start to wander if they are in an unfamiliar environment. Some clues from patients with Alzheimer’s may include them saying, “It is time to go to work” or “I want to go home.” The third step involves distracting patients with Alzheimer’s. Reasoning with the person will not work, so a small distraction that encompasses their concern is the best course of action. In the fourth step, a caregiver can get a little inventive and block or disguise the exits. Of course, Cohen warns that you should never lock or trap a person with dementia in a home alone. If another family member is with the loved one, you can add a screen, which looks like a shelf of library books to disguise the door. Labeling some of the rooms in the residence with pictures is another step to enact to keep them from wandering. The sixth step involves keeping your loved ones busy with some light activities. Everyone gets bored, so folding clothes, washing the dishes or raking leaves might be a good way to break up the monotony of the day. Some type of exercise, such as walking, may tire your loved one out enough that they may just want to sit for a while, Cohen wrote. For loved ones that are prone to wandering, provide safe wandering. For this step, Cohen suggests creating a path through the rooms of your house or constructing a circular path in a fenced in backyard. Giving some thought to how technology can help you track your loved one – if they do wander – is the ninth step. If these steps do not limit your loved one’s need to wander, finding a facility to place them could be the safest option for all concerned. Hence, the last step is finding an appropriate facility. Caregivers and family members should ask questions to determine whether a facility can manage patients with dementia who wander. “Is the door monitored, either electronically or by staff?” That is one question family members should ask the facility’s staff, said Lawrence Schonfeld, an Alzheimer’s expert. Also ask about electronic devices and the facility’s strategy for finding a loved one if they decide to wander.
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Suggestions to help aging parents avoid loneliness
Once a person gains their independence, they really do not want to give it up. To maintain that freedom for some seniors, they may need help from a caregiver. The relationship between patient and caregiver can take many turns. Carolyn Rosenblatt, a reporter for Forbes, provides some tips on when a patient falls in love with his caregiver. The writer tells the story of a fictional father who is a widower that needs help at home. His caregiver is a young woman who comes over several times a week to cook and clean. The father becomes dependent on her and develops an attachment to her. Then, he says he loves her and starts buying her expensive gifts, Rosenblatt wrote. If the father has a form of dementia, a guardianship would protect him from undue influence. If your parent has no cognitive impairment issues, some states have laws on the books that specifically address caregivers and gifts. However, the determination of whether the elder has the capacity to make decisions concerning gifts is left in the hands of lawyers and judges, Rosenblatt wrote. She contributes the dad’s new infatuation to loneliness. While your loved one might only be seeking companionship, how do you protect them from potential predators posing as caregivers? Rosenblatt offers six suggestions to keep aging parents safe. Her first tip is to work on addressing the intense loneliness that aging and isolation brings to the elderly. For the second suggestion, adult children should try to encourage their parents to engage in social participation at community centers where other, similarly situated folks congregate. Adult children could also interact more with their aging parent by planning a variety of family events and celebrations. For the fourth tip, Rosenblatt says make the time to visit your loved one more often. Increasing the frequency of calls to your parent is the fifth recommendation. For her last suggestion, Rosenblatt advises us to seek help if your parent is likely to become upset if you bring up the subject of loneliness. Your aging parent may not be to open to these tips, but attempting to enact them might take away any guilt you may feel when they are gone, Rosenblatt wrote. If they work to decrease the loneliness, you can avoid some awkward situations with dad’s new wife, who coincidentally could be half your age!
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This holiday season, use the “10 Warning Signs” of Alzheimer’s to assess older adults
The holiday season is here and many adult children will head home to share in family celebrations. The visit provides a hands-on opportunity to really assess your aging parents and gauge how they are managing daily life. If there is a concern about memory loss or the onset of dementia, take a close look at your parents’ appearance, the status of the residence, and ask questions to aid in your assessment. To provide some assistance in the task, the Alzheimer’s Association created a guide called “Know the 10 Signs.” The first warning sign is to look for memory changes that disrupt daily life. For this point, someone exhibiting early signs may forget recently learned information and rely on memory aides or repeatedly ask about the same information. A challenge in planning or solving problems is the second sign. Look for signs of difficulty concentrating and taking additional time to do something that used to be so easy for your elderly loved one. The third warning sign involves difficulty completing familiar tasks. Examples of such behaviors include struggling to remember the rules of a favorite game or forgetting how to drive to and from a familiar place. Losing track of time, dates, seasons, and the passage of time are symptoms that illustrate the fourth sign, confusion with time or place. The fifth sign concerns trouble understanding visual images and spatial relationships. Your loved one may have problems reading, judging distance, and determining color and contrast. They may also have issues with spatial perception, which is how we perceive or react to the size, distance, or depth aspects of our surroundings. A sixth sign is difficulty with using words in speaking or writing. Adult children may notice their parents are struggling with vocabulary, following or joining a conversation, finding the right word or calling things by the wrong name. Misplacing items or losing the ability to retrace steps is the seventh sign. People with Alzheimer’s may accuse people of stealing because they tend to put things in unusual places. The next warning sign is decreased or poor judgment. Some indicators of this sign include paying less attention to grooming habits and exhibiting poor decision-making abilities when handling money. Forgetfulness may contribute to the ninth sign, which is withdrawal from work or social activities. For this sign, loved ones with Alzheimer’s may stop doing their favorite activities because they may not remember how to complete all the steps. The last step concerns changes in mood and personality. The behaviors of patients with Alzheimer’s will commonly shift from being confused, depressed, and anxious to a variety of other emotions. They also may become easily upset when someone tries to adjust their routines. If any of these signs occur frequently, a trip to the family physician may help clear things up.
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Celebrate, but keep the holidays calm for loved ones with Alzheimer’s
The end of November kicks off the holiday season and that typically means family celebrations and social gatherings. While the events are fun for most of the family, a person with Alzheimer’s disease may not enjoy the festivities as much. People with Alzheimer’s tend to avoid large gatherings that include loud noises and a variety of activities, which tends to confuse loved ones in the latter stages of the disease. For caregivers living with a person with Alzheimer’s, the holidays require a decision about whether to partake or how much to participate in the celebrations. Kathy Martin, a reporter for The Courier, based in Waterloo, Iowa, says caregivers should “follow their gut” when making a decision. Martin uses her parents as an example, writing that her father died of Alzheimer’s at 62 when her mother was in her 50s. While her mother loved holiday celebrations, her father had a difficult time with them once he progressed to the latter stages of the condition. Caregivers should focus on the “what-ifs” instead of making a decision based on guilt or “shoulds,” she wrote. If you want to celebrate, you may need to make some adjustments to the way you would normally go about enjoying the festivities. For those who want to host a celebration or attend one as a guest, prepare your family and friends honestly by telling them about your loved one. You can reserve a room for quiet reflection if the atmosphere becomes too much for your loved one. As a caregiver, your time is not your own, so you may need to end your fun earlier than usual, if your loved one feels agitated or anxious. If your loved one lives in a nursing home or assisted living facility, you can visit during their best time of the day, and then spend some time with others. You should also be willing to accept offers of help and follow your instincts, Martin wrote.
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