"Dementia is Not Contagious" - And Other Lessons For Family Members
My family has celebrated a reunion for 35 years. This year, my role remained the same as it was in past years. However, this year was very different for me. In my previous post, I talked about how dementia affected how I handled my responsibilities. In this post, I'd like to talk about how it affected my interactions with family members.
Most of my more distant relatives did not know of my dementia diagnosis since I was diagnosed within the last six months. After hugs and greetings, small talk began, which these days is usually about everyone's health. When I told my relatives that I had been diagnosed with dementia, I would sometimes get laughter, and he/she would say that he/she forgets things, too. Other times I would just be stared at blankly for a few seconds. In the former instance, I had to confirm that I really DO have dementia, that I was not being funny. With the latter, I had to allow time for the news to sink in. To both groups of people, it came as a shock.
Dementia is not easily detected by friends and family. I don't walk or talk funny or act a whole lot differently. In the earlier stages of vascular dementia, most of its effects are not as easily noticeable.
For those relatives who had heard that I have dementia (and I was never sure who had and who hadn't - you know how families spread the news), the greetings began normally. The small talk was a little strained until I opened up the subject of my dementia. Once I broached the subject, most of these relatives confessed that they had heard. Then, they got silent, not knowing what to say except they were sorry. A very few did mention they didn't know dementia ran in the family, to which I had to explain that what I have is vascular in nature and therefore nothing that is necessarily inherited.
After the reunion was long over, I mulled over my experiences with my extended family members and came up with some thoughts which others in my same situation my identify with, or benefit from.
To My Family:
First, thank you for sympathizing. I, too, am sorry about having dementia. But my life is not all doom and gloom. I am thankful that this diagnosis has been made early. It has given me and my family extra time to learn how to deal with the condition. I also have an opportunity to help others who are suffering from this debilitating disease.
Second, don't be afraid to talk to me about my dementia. You won't catch it by talking about it. I do not have to keep it a secret. My family doesn't have to hide me away or be ashamed of me. Times have changed. Society is much more accepting of those with disabilities. By talking about my dementia, you show concern and care. I feel more accepted when I can talk about my problems.
Third, don't be afraid to be supportive. I'm not an invalid, but I do sometimes need a little help. Offer to relieve me of some of my work or responsibilities. Tell me you'll call to remind me of our meeting. Offer to go with me while I shop or go to the doctor - or just go out to lunch with me. But don't cut me off - I still want to stay active and be of help whenever I can. I want take part in all that life can offer.
Lastly, though I look normal, living is a bigger struggle for me now. The short term memory loss is most devastating. Following written and oral directions is hard. Remembering names is difficult, too. Don't get upset if I forget your name, just tell it to me once again. Remembering recent things takes real concentration on my part. If I have a lot on my mind or a lot going on around me, I may have a more difficult time remembering...be patient. If I've forgotten to get something, just go behind me and do it...but don't make me feel guilty for not doing it. (My husband has become quite good at doing whatever I have forgotten to do, and when I remember upon seeing him do it, he just says not to worry about it.)
Thanks for listening....