Family Life & Disability
A Product of Disability Access: Empowering Tribal Members with Disabilities & Their Families
by Spirit Lake Consulting, Inc.

DEATH AND DYING

At age 99, my grandmother had a heart attack in her sleep, in her own bed, in the home she had lived in for over fifty years, where she had raised her children and a few grandchildren who had needed her from time to time, including me. She never really woke up, spent a few days in the hospital and passed away. I was very sad about this and spoke to my other grandmother, who was in her eighties. She said to me, "You may be sorry you missed out on saying good bye to her, but let me tell you as an old person myself, that is what people want. They don't want to drag on and be a burden to the family. When their time is over, they just want to go."

The desire for independence is a common theme. As one individual said,

"The experience I have is with my mother who is 84 and living in her own home. My niece and her daughter live with her. I have heard my mother comment that if something happened to her where she could not take care of herself, she wants to be in a nursing home. She has two reasons that I have picked up on. There could be more. I have heard her say she doesn't want to be a burden. She has lived her life and doesn't expect people to give up their lives to care for her. The second reason I heard was modesty. She doesn't want her family to "wipe her butt". She would rather have people who do this for a living care for her. "

Another common theme is the desire to live on one's tribal lands. This is one of the most common comments we have heard, from native Alaskan villagers to elders on reservations from Arizona to North Dakota, "I was born here. I was raised here. I'm going to die here." The lack of nursing homes available on reservations may be one reason older adults prefer not to live in nursing homes. Click here for a newsletter article by Dr. Carol Davis on what tribal members want in nursing homes.

However, even when a nursing home is available on the reservation, older adults may still prefer to live at home. They may take this position knowing full well that the result will be a shorter lifespan. Effectively though, they are making the choice not to live several years infirm and disabled. Dr. Longie gives two examples:

Do Indian people want to be infirm? Here are two personal stories: In her mid fifties, my mother suffered a severe stroke followed by several minor ones. We put her in St. Jude (a nursing home) located on the reservation. She was extremely unhappy there and we eventually moved her back home to live with her husband - our step dad. I think mom understood the dangers or living where medical help was not immediately available. At sixty-two year of age, she fell getting out of bed and passed away before she was found. Had she stayed in a nursing home she might have lived several more years.

An elderly man who was married to my cousin suffered from diabetes for many years. Finally, he told his family that he didn't want to continue treatment any longer, he was ready to die. A pow-wow was held for him. His friends and relatives came to say good by. When it was my turn to say good by to him, I had my two my sons come with me, I wanted them to hear what I was going to say. I told him (in-law) that he was a brave man and I admired his courage for the making the choice to quit his treatment for his diabetes. I went on to tell him something to the effect, I hope I have the courage you have when it is my time to go. I wanted my sons to hear me say those words because I do not want to live as an infirmed individual when I grow older.

On the other hand, due to better medical treatment, more and more elderly Indians are kept alive. Whether it is by choice, or the availability of medical care, or both, it is hard to say. However, I am willing to bet, that when faced with living a life severely in-firmed, or going to the Spirit World, the majority of Native Americans will choose the Spirit World. This may be due to the fact that many Native Americans don't view too much difference between the Spirit World and and this world.

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