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With many diseases, the care giving burden progresses as the disease progresses. The caregiver's health is important not only for the patient, but also for the caregiver's long term wellness.
"Alzheimer's disease is a cataclysm that tests the human spirit of caregivers like no other," wrote Sherwin B. Nuland, a physician and author of the best-selling 1994 book How We Die. The devastation happens on many levels. Caring for an Alzheimer's patient can be a full time job. It is a round-the-clock responsibility that is physically exhausting. But, the emotional drain can be more difficult than the physical drain. It is natural to hope that you can have a positive effect on your loved one, but it is important that a caregiver recognizes that the condition worsens no matter what you do.
A substantial majority of Alzheimer's patients are cared for at home by family members; estimates range from two-thirds to 95 percent. But these largely invisible caregivers, who buttress the nation's health care system, often pay a terrible price. The architecture of the family is turned upside down, turning children into parents and parents into children. Emotional bonds and financial resources are strained, even in the most resilient households. Caregivers get sick from the stress.[1]
Caregivers have to make peace with a gamut of emotions – the frustration of remaining patient, loneliness, constant worry, resentment, feelings of guilt, and the heartbreak of seeing a loved one leave them even though they're still physically present. Perhaps most debilitating is knowing that each new day will most likely be worse than the last. The progression of the disease is inevitable.
Caregivers must be constantly vigilant and alert to even the smallest of changes so they can reconsider what is possible and what is safe. Wandering is common for Alzheimer's patients. Some may eat spoiled foods or forget if they've eaten at all. They can become agitated and aggressive with seemingly little provocation.
Despite it all, most caregivers are adamant that caring for their loved is a privilege, not a burden.
If you are caring for someone with Alzheimer's disease:
- Take care of yourself. Think about those pre-flight, in-case-of-emergency instructions that coach you to place the oxygen mask over your face first so you'll be capable of helping others.
- Ask for help. Surround yourself with support systems like family, friends, support groups and health care professionals.
- Focus on what your loved one can do and accept what they cannot.
- Try to keep your environment as calm and consistent as possible.
- Build physical activity into the day for both you and the loved one you are caring for.
- Make sure there is a plan in place in case you get sick.
- Find a doctor who is supportive.
- Begin to plan for your own future. Caregiving can be all-consuming; when it is over you will often need to redefine your purpose in life.
1 Alzheimer's in the Living Room: How One Family Rallies to Cope, The New York Times, September 16, 2004
Learn more about Alzheimer's Disease: Key Point 1: The time to prepare for the future is at the earliest stage of a disease when the patient, the family and the healthcare team can plan together. A family needs to talk openly about the consequences of the diagnosis and what it means to the future.
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