Alzheimer's Disease - Kathy's Story

Kathy's Story - Guide4Living

Kathy Graham, 56, lives in Merrick, Long Island (about 25 miles from New York city). Her mother-in-law Gladys suffered from Alzheimer’s Disease in the early 1990s when there was little support available in the community.

Since 1992 she has run one of the biggest Alzheimer’s support groups on the island (she’s pictured in the Santa hat at one of the annual Christmas parties she organises for her group). When asked to contribute to this web site, Kathy responded with some wise words about allowing Alzheimer’s sufferers to die with dignity:

“The topic of Terry Shiavo being kept alive for 14 years has been a topic everyone has an opinion about. And it's all the same opinion - let the poor woman die. Who would want to be kept alive in a vegetative state - having somebody clean you and change you and exercise you and feed you with a tube? You have no dignity, no choices, no joy in life.

When Terry died there was not one person who said to me: “What a shame”. Many people in this world have to make life and death choices at some point in their life. Jackie Kennedy went home to die; Ronald Reagan died peacefully at home. It's very difficult to die when all hope is gone - they can keep us alive artificially for an indefinite amount of time.

This dreadful situation points out the necessity for all of us to get a Living Will, a Health Care Proxy and a Durable Power of Attorney and to designate someone we trust to see to our final wishes are carried out. But even with all our legal papers, the trend is now to die at home with the help of a hospice. They support the whole family and make sure the dying person is comfortable and has no pain. This also gets us out of the hospitals and nursing homes where we are not able to maintain complete control.

In my group on Long Island, New York, we lose about six people a year to Alzheimer's Disease and over the last five years most of them have died in their homes with no feeding tubes and hospice workers administering morphine as needed. They turn their home into mini hospitals - with hospital beds and wheel chairs and ramps to get out of the house and go for walks. There are plenty of adult diapers and Ensure (a supplement you drink, if the patient is swallowing).

In case after case life goes on around the dying person. Some people talk to them, others may read, others pray. And then there are the children. They play games on the floor next to grandma or grandpa - they hide under their bed. One little girl always took out her toy tea service and they had a pretend party.

And when the end comes – it’s not with flailing of arms and legs and screaming or even with the death rattle we have been told about. It is a calm final breath. And then there is the coming together of the family with some sobbing - some in thought - but in general there is a feeling of giving this loved one the best death possible. There is a pride in their accomplishments over the many years of care giving.

Not everyone can be a caregiver - the job really stinks - but if you sign on to do it, do the best you can. When you are dealing with Alzheimer's Disease you are the most important part of the equation. If you burn out - everything falls apart. So learn about the disease, find out what's available in the community, ask for help - and put aside time for yourself. Your job is to care for and protect this person and when they can no longer speak for themselves you must see to it that their wishes are carried out. You are dealing with a disease that cannot be diagnosed, treated or cured.

Death will come.

You would step in front of a car to save your mother - you don't want her to die. It is too final. But what you want is not the issue - your mother doesn't want to live when she has reached the final stages of this disease. Start thinking about this now. Think about it every day. Not only will it make you appreciate what you do have but when the time comes, you will be prepared to follow the final directives of someone you love.”

If you’d like to contact Kathy, you can email her via:
guide4living@gmail.com

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