In the Spotlight
Surviving the Changes of Dementia: A Caregiver Interview
Interview of Veteran's wife and caregiver by Betty Wexler RN CNS
To respect the privacy of the Veteran and his wife, their names have not been used in this article. The Veteran is a patient of the GRECC Geriatric Clinic at VA Palo Alto Health Care System. He is 79 years old and has Alzheimer's Disease, the most common form of dementia. He also has high blood pressure and glaucoma. The Veteran lives with his wife who is his caregiver. In this interview his wife talks about her experience. She shares what it is like to be a full-time caregiver of a person with Alzheimer's Disease.
Question: What branch of the service did your husband serve in?
Wife: He served in the Marine Corps for two years from 1950-51.
Question: What was his profession after the service?
Wife: My husband went to college and studied chemistry. He received a Bachelor of Science degree from San Jose State University. We married in 1955 and he worked as a research chemist for the navy at China Lake, Ca. He then went back to school at Stanford and got his Masters degree in chemistry in 1956. After that he went back to China Lake until 1965, returned to school to get his PhD in Material Science, and then worked as a physicist at China Lake, Ca until he retired in 1992.
Question: Where and how did you two meet?
Wife: I was working part-time for the science department at San Jose State University and I signed him up for a class. We then dated and married three months later. We have three children, all live about 2 - 4 hours away. We have seven grandchildren but do not get together too often due to the distance and their work.
Question: When did you first start to notice changes in your husband and what did you notice?
Wife: The first thing that happened about seven years ago is that he was giving a talk at Jasper Ridge Nature Preserve (he was a docent there) and he did not have any written notes. He forgot what he was going to say and he came home very upset. I had not noticed anything except that sometimes in the car he would say "where are we?" a few times. One time in restaurant when he was paying the bill he gave a $30 tip which I saw and stopped.
After that I decided that he should see a neurologist in the community but it took 3-4 months to get him to go. The neurologist did some tests and then phoned me and told me over the phone that my husband had Alzheimer's Disease. It was very hard to hear this over the phone. I read that there were research studies advertised at the health library where I volunteered and got my husband into a few studies. One of the studies included a neuropsychological evaluation (memory and other brain function tests). In one study, my husband had to wear a watch and I had to write down how much he slept at night and during naps. The other study had him take a high dose of a medication and after about six weeks I noticed he was not functioning as well. Others in the study had similar problems, so that study was stopped. My husband did not return to how he was before he took this medication. I cannot really talk to him about his disease and he has never accepted the fact that he has it. I must say I do encourage participation in clinical studies and they are important in finding all we can about the disease and, hopefully, finding a cure.
Question: You have been a caregiver for almost seven years? What have been the hardest things you have had to deal with and how have you handled them?
Wife: I try to get my husband to understand things and explain things to him but I am not sure he understands. I have to repeat things at least three times before he seems to hear me. Sometimes he gets it right away, but not most of the time. He is always asking what we are going to do now. It makes me feel like I have to have something planned all the time. Finding things to do on the weekend is even harder, but we do. My husband likes puzzles, sweeping and pruning in the yard. He does these over and over. I often feel like I am dealing with a little kid but the basic person is still there, a caring person. My husband still knows who I am, and we still have fun together.
I had to change my role from wife to caregiver and at first I wondered if I could really do this. It still worries me because he is bigger than me so I will not be able to move or lift him at some point. He is getting very shy about his body. He will still take a shower but needs more help. I have to handle all the finances and take care of the taxes alone. I had to ask a friend to change the battery on the smoke alarm because my husband could not do it and I am afraid to go on a ladder with no one there. Last week the car would not start. My husband told me that I had placed the car too close to the cupboards. He still wants to solve problems but cannot.
One hard thing is not being able to share things that are going on in my life. He likes to hear about our seven grandkids but forgets right away. The young grandkids still like to play with him because he is fun to be around.
Question: What helps you to be a survivor? How do you care for yourself?
Wife: I try to attend a caregiver support group every week. I also talk to old friends on the phone and see them as often as I can. I talk to our children by phone every week. I try to be positive and take each day as it comes. I do see a therapist every six weeks. I am lucky to still be able to do volunteer work. I do this when my husband attends the Adult Day Center three times a week. Since I always worked in art I do try to spend time pursuing the arts. We both enjoy exercise and gardening. We walk every evening and listen to music together.
Question: What is your support system? If you had to tell another spouse some key things about how to survive the changes that will occur when someone has dementia, what would you say?
Wife: You have to learn to enjoy simple everyday things.
1) Be patient, caring and loving, but at the same time realize it is a hard job; do not be too hard on yourself.
2) You definitely must take care of yourself and try to do something special for yourself at least once a week if possible.
3) Most important, find a good support group. You can learn so much from others in the group and most important, they understand and know what it is like to be a caregiver to someone with Alzheimer's or other dementias.
4) Lastly, try to feel good about what you are doing and have fun with your special person. Enjoy the special moments. I know my husband is the same wonderful guy I married 56 years ago. We just have to relate in a different way.
Question: Anything else you want to add?
Wife: Learn all you can about this disease so you are well-informed and can make good decisions. You have to realize you are not dealing with a clear-thinking person. Do not explain things at length; learn to distract them. Take advantage of workshops and support groups, there are many offered and they provide answers to many questions. Community organizations such as the Alzheimer's Association can be a great source of caring help.
Alzheimer's Disease (MedlinePlus)
Alzheimer's Caregivers (MedlinePlus)
Caregiver Guide: Tips for Caregivers of People with Alzheimer's Disease (National Institute on Aging) and new patterns of behavior. This guide offers tips that may help.