Oct 4, 2015

Alzheimer’s Caregivers Have Rights, Too

By Marie Marley
Alzheimer' Reading Room

I'll take care of me Alzheimer’s caregivers have rights

The rights of people with Alzheimer’s are listed on many websites, including that of the Australian Ageing Agenda. While it is often overlooked caregivers of people living with Alzheimer’s have rights also – plenty of them.

Too often caregivers dedicate themselves 100% to their charges, completely ignoring themselves and their own needs. This often leads to physical illness and mental health problems.

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According to an articles published by the University of Washington Alzheimer’s Disease Research Center,
“Some common health problems of caregivers include: hypertension, substance abuse (alcohol or medications), insomnia, and exacerbation of preexisting illnesses.”
The Alzheimer’s Association states that depression is common among Alzheimer’s caregivers.

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Finally, Alzheimer’s About.com reports on a study that found “caregivers of dementia relatives who had been caregiving for around 5 years, were found to have significant levels of infectious illness, particularly respiratory tract infections.

Many other specific details of the effects of Alzheimer’s caregiving on the physical and mental health of the caregiver are reported in an article I published on the Huffington Post last year.

The list of Alzheimer’s caregivers’ rights given below has been circulating on the internet for a long time and is attributed to various persons. The version given below is taken from caregiver.com, where it is attributed to Jo Horne.

I have the right:
  1. To take care of myself. Caregiving is not an act of selfishness. It will give me the capability of taking better care of my loved one.
  2. To seek help from others even though my loved ones may object. Only I can recognize the limits of my endurance and strength.
  3. To maintain facets of my life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
  4. To get angry, be depressed, and express other difficult feelings occasionally.
  5. To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.
  6. To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
  7. To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
  8. To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
  9. To expect and demand that as new strides are made in finding resources to aid physically- and mentally-impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.
If only all Alzheimer’s caregivers could exercise their rights, then their stress - although never disappearing - could be lessened, and their physical and mental health problems resulting from caregiving could decrease in frequency and intensity.

*Marie Marley  has more written more than 200 articles on Alzheimer’s here on the Alzheimer’s Reading Room and on the Huffington Post. She also authored an award-winning book dealing with Alzheimer’s  - Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy.

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