One of the results of society’s continuously expanding Alzheimer’s knowledge is that AD is increasingly a long-term disease. Patients may survive as long as 20 years from diagnosis to death – you may find yourself being a caregiver caregiver for two years or two decades.
Education, support groups, and ongoing training make a documented difference in the effect of the disease on your family life and personal quality of life.
The reason is simple: whether your parent is at home or in a nursing home, almost every established and routine activity of daily living – including how you communicate – will change as the disease progresses. Many caregivers express this sentiment:
“This is a special kind of hell. My mother, who lives in my home, and who I love and spend hours caring for every day, doesn’t know me anymore. She calls me by her sister’s or mother’s name. She doesn’t remember me as her daughter. I keep saying, ‘Mom, it’s me, Dale.’ She just stares at me. Through me, really. I might as well be telling her I’m George Washington. She has no idea who Dale is. I just keep crying. I’ve never known such pain before.”
Dale, North Carolina
The disease impairs and eventually destroys memory, so the longer your parent has the disease, the less recollection she will have of everything. It seems incomprehensible but nothing is excluded from this loss: family, friends, home, events, possessions, addresses, telephone numbers, places, and even the most basic skills. Starting with the most recent events and the most recently learned skills and trailing backward in time, all will be forgotten eventually.
Caring for a loved one with dementia is considered one of the most difficult jobs in the caregiving spectrum. The financial losses, loss of quality of life, and loss of self make it vital for you to get help at every stage.