When students sit down to take an important test, they encounter a medley of uncomfortable emotions—pressure, anxiety, and even fear over the uncertainty of their performance. Every stroke of the pen could be a step toward success, or failure. As students, we strive for success. Receiving an “A” validates our hard work, effort, and abilities. And if our performance falls short in the classroom, we have teachers who can guide us toward the correct answers.
The mentality to be the best can also be seen in caregivers of Dementia patients. Primary caregivers of Dementia patients often strive to be the best and will also experience fear and anxiety over how to successfully fulfill the role. But unlike an important test, primary caregivers of Dementia patients cannot simply select the best answer. The truth is that the test of fulfilling the role of a caregiver for a Dementia patient is one of the hardest tests we could ever encounter and that there are no teachers who can provide you with all of the correct answers.
Right Way, Wrong Way
Frequently those who find themselves as primary caregivers or family members of a person suffering from dementia will find themselves facing questions and uncertainty—just like a newly-minted student in the midst of a difficult exam: “Life used to be about doing the right thing. Eating well, exercising, and getting enough sleep. Grandma always did those things, but now her memory is fading and life is changing for her. I’m not sure how to help Grandma because there doesn’t seem to be many ‘right’ answers.”
When caring for a patient with Dementia, there are not always hard and fast rules about “right” and “wrong.” Sometimes it is okay to presume there is room for discovery when providing care for Dementia patients—this may mean making a few mistakes along the way. This news is meant to be a relief for caregivers of dementia patients, who often suffer themselves with questions about the “right” and “wrong” ways to care for a loved one. Stress, anxiety, guilt, and other negative emotions often run rampant among caregivers for dementia patients.
The “Right Way” to Care for a Dementia Patient
Patients suffering from cognitive decline due to mild or Rapidly Progressive Dementia will still require many of the same aspects of care anyone else needs in daily life. Keeping up with personal care for the elderly includes keeping up with hygiene, meals, activity, and other vital takes that all result in a happier, healthier, more well-balanced person. Connecting with a hospice care team can leave much of the guesswork out of developing a coherent, manageable plan of daily care for Dementia patients during end-of-life.
Assessing what a Dementia patient can and cannot tolerate for meals, as well as negotiating a stable, ongoing schedule can be especially helpful for patients and their caregivers. Hospice can also teach caregivers about care techniques when it comes to helping a person with their hygiene. Caring for a patient with Dementia who needs assistance toileting, showering, brushing teeth, doing hair, etc. all have many time-tested methods that can be taught by professionals (a hospice care team) and reduce the anxieties of caregivers. Primary caregivers of Dementia patients can safely assume that there are at least a few “right ways” of giving care when it comes to tasks related to daily life.
Where Lines Between “Right” and “Wrong” Fade
While there may be some clearly more useful ways to assist a loved one on and off the toilet, there are many aspects of caregiving that simply don’t have “right” answers. Caregivers for patients with dementia frequently suffer from stress, anxiety, and “caregiver guilt” associated with their monumental caregiving task, especially when wondering if their care is adequate.
Primary caregivers often quickly recognize that their task is all about giving: time, energy, and emotional capital in service to someone who suffers. As a result of their enormous efforts, caretakers can suffer themselves. Many start to fall into patterns of ignoring their own self-care, whether that is foregoing a needed shower, eating poorly, or losing substantial amounts of sleep. Some disconnect with their own support system in favor of time spent with the person in their care, resulting in gradual disconnects in marriage, parental relationships, collegial ties, or friendships.
Doubting Your Ability to Provide Care
Most caregivers question their competency to provide such comprehensive care. Patients suffering from dementia often require the same kind of intensive care needed by young children, with the added complication of engaging complex emotions and ingrained patterns of preferences. “Can I really do this? Can I really do this well?” are questions that often haunt caregivers.
One of the more difficult features of dementia occurs when patients become frustrated at their limitations, whether that is limited ability to do the things they once enjoyed or waning capacity to find appropriate outlets for their feelings. That frequently results in anger, frustration, and even abuse toward caregivers. Primary caregivers often become anxious and confused themselves, wondering if they did something to warrant such bitter response.
Hospice Helps Caregivers
Hospice can help caregivers walk responsibly and tall through that blurry space of finding the best caregiving practices for their loved one. After all, hospice is a total care environment, acknowledging that the best care for patients often includes care for their caregivers.
First, hospice can provide education on what might work best to address a patient’s daily and long-term care needs. Equipping caregivers with the tools they need to offer high-quality, effective care to their loved one is a simple, yet dramatic way to reduce anxiety. Second, hospice can direct caregivers toward support options. Support groups and therapy can help with the inevitable stress that accompanies the intense nature of caregiving to dementia patients. Hospice recognizes that caregivers need a safe, confidential, and empathic environment to discuss their experiences and feelings.
Utilizing Respite Care
Lastly, hospice also offers respite care for caregivers. Long-term caregiving can take a toll on caregivers professional and personal life. Hospice’s philosophy believes that effective long-term caregiving also requires regular breaks for the caregiver to relax, refresh, and renew. Therefore, insurance and other programs frequently cover the costs associated with respite care, offering caregivers the chance to leave their loved one in the responsible hands of a care team while the caregiver tends to personal or professional responsibilities, or simply takes a much-needed vacation.
Contact Harbor Light Hospice Today For More Information
Hospice recognizes that caregiving for a patient with dementia is a monumental task for anyone, and often results in anxieties and other difficulties for caregivers who wonder if they’re doing it “right. Yet, in the end, the “right” way to care for your loved one and ultimately preserve your own well-being along the way is to make decisions in collaboration with the entire care team and to check your decisions against other close family members and friends. Above all, let every decision you make come from a place of love.
If you would like more information on the benefits and services of hospice care, please contact Harbor Light Hospice by sending us a message online or giving us a call today.