Alzheimer's Disease - A Granddaughter's Perspective
Margaret Davis, was known as “Meme” to me. She was my Grandmother, my Godmother and my friend. The last time that she was physically with our entire family was at my wedding in 1998. At this time, she was becoming more and more confused, disoriented in time and place. She was in the beginning stages of Alzheimer’s Disease.
AD is the most common cause of dementia, which is a loss of mental function. It affects an estimated 4 million American adults. It is the most common form of dementing illness.
The Symptoms and the Course of Alzheimer’s Disease
The symptoms of AD include the following: a gradual memory loss; decline in ability to perform routine tasks; impairment of judgment; disorientation; personality change; difficulty in learning; and loss of language skills. The disease can eventually render its victims totally incapable of caring for themselves.
The course of the disease usually runs from 2 to 10 years, but can take as long as 20 years. During the later stages of the disease, 24-hour care may be required with regard to daily activities such as eating, grooming and toileting. Meme reached this stage after six long years.
My Grandmother was in and out of nursing homes from 1998 until October 2008 when she passed away. During the early stages of the disease, I did visit her often with my father. As the years past and she reached the final stages of the disease, my visits grew more and more infrequent.
Our Last Visit
In 2004, I had taken my sixth month old son to visit Meme with the best of intentions of becoming a regular visitor again. Upon entering her room, I was overwhelmed by the strong smell of urine. There she was in her wheel chair. Her hair was long and wiry, not even close to the way she used to keep it. Her eyes had a white haze over them and she just looked off into space. I started to speak to her, the tears pouring out of my eyes. “This is Ryan, your great grandson,” I said. I continued to talk, feeling awkward and foolish. Then she turned her head toward me and started to sing some notes….”la, la, la la.” It was strange, but I understood it as her acknowledgment of me. I stumbled through telling her about my family and my life. After about 15 minutes, I told her we’d be back to visit soon, and said goodbye. With Ryan sleeping in his seat, I left the nursing home an emotional wreck. It was too difficult for me to remember her that way; that was my last visit.
Visiting a Person with Alzheimer’s Disease
Although she didn’t know who I was, I know visiting Meme was important, and just having that brief human connection had value. From my personal experience, I know visiting a person with AD can be extremely difficult, even if it’s your own grandmother. Here are some suggestions to ease that difficulty and to connect with that special person.
- Plan the visit for the time of day when the person with AD is at his or her best.
- If possible, share the visit with other family members.
- Bring along an activity, such as something familiar to read or a photo album to look at.
- Be calm and quiet. Don’t use a loud tone of voice, respect the person’s personal space, by not getting too close.
- Attempt to establish eye contact, call the person by name to get his or her attention.
- Remind the person who you are if he or she doesn’t seem to recognize you.
- If the person is confused, don’t argue, simply respond to the feelings you hear being communicated.
- If the person doesn’t recognize you, is unkind, or responds angrily, remember not to take it personally. He or she is reacting out of confusion. Collect yourself and be strong.
Get to Know the Caregivers
While the next of kin of a person with AD will easily get to know their loved one’s caregivers, as the granddaughter, I was out of that loop. I believe that if I made an effort to go back and to introduce myself to my Grandmother’s caregivers, I would have made a connection that would have helped me to come back and to accept the reality of her being in the final stages of the disease.
Meme passed away on August 28, 2008. She was 89 years old. She lived with Alzeheimer’s disease for over 10 years. She was essentially in a vegetative state for the last 4 years of her life. I have read that being in that state is like being asleep. But not having her present to celebrate life and love with us, was very difficult. I was thankful when God finally released her from her “sleep” and welcomed her home.
The Cause of Alzheimer’s Disease
The cause of AD is not known and is currently receiving intensive scientific investigation. Suspected causes include a genetic predisposition, a slow virus or other infectious agents, environmental toxins and immunologic changes. There are other factors under investigation.
Although no cure for AD is available at present, good planning and medical and social management can ease the burdens on the patient and family. For more information, please refer to www.nia.nih.gov/Alzheimers.