JOAN’S BLOG – MONDAY, MAY 19, 2008 – THE VOICE OF DEMENTIA – A PERSPECTIVE FROM THE OTHER SIDE TO HELP US UNDERSTAND OUR SPOUSES - DC Forum III

If you have been reading my Blogs about my trip to the Public Policy Forum on Alzheimer’s Disease in Washington DC – see below – you are aware that I learned a lot about advocacy, using the media, and how the wheels in Washington work.

But I also learned much about a subject I have been trying to cover in depth since the beginning of this website – the perspective of the person with the dementia. Up until now, it has been very difficult to do, simply because most of the spouses with AD with whom I have contact, are unable to express their feelings in a manner in which I feel would benefit our understanding. I have reprinted essays by Richard Taylor, Ph.D, the famed psychologist and author who writes and speaks about his life with AD, including the marital strife it has caused; I have relayed information from my own husband on the rare occasions that he has adequately expressed his feelings. But it has been an uphill battle, simply because of the nature of the disease.

There was a fascinating Town Meeting at the Washington Forum that I missed due to flight scheduling. Tony did attend, and if he has anything to add, I am sure he will do so on the Message Boards. The meeting consisted of people with Alzheimer’s Disease explaining to the Alzheimer’s Association, what it is like to live with the disease. Because Alzheimer’s Disease is being diagnosed in earlier stages than in previous decades, those who have the disease are able to speak out, tell their stories, and advocate for what they need. By speaking to us, they are able to give us a glimpse into the workings of the AD mind, which will help us understand the disease from our spouses’ perspectives, and perhaps, in turn, help us better deal with the relationship changes.

On Tuesday afternoon, I was lucky enough to meet Diane Thornton, a young wife and mother, who is living with Alzheimer’s Disease. Although we did not speak about how AD has affected her marriage, we did speak about how it has changed the manner in which she manages her life; how her family has learned to work around and with her new needs and limitations. Nothing I write could possibly equal the impact of her own words – Please log onto her blog - http://blog.healthtalk.com/dementia/life-with-dementia/diane- and read her account of the struggle to live with dementia.

I cried when I read her blog – Bad Brain Day - http://blog.healthtalk.com/dementia/life-with-dementia/diane/bad-brain-day/. It explained what Sid has been unable to clearly articulate, and made me understand, in a way he has not been able to, just how difficult negotiating life with AD can be; it allowed me to understand his frustration and anger.

This disease had made us miserable by turning our spouses into strangers; our marriages into mine fields; it has isolated us; worn us down; confused us; and tortured our emotions in unimaginable ways. But as Sid is fond of lamenting, “What do you think it’s doing TO ME – I’m the one with the disease!!” Diane articulates the answer to that question perfectly and poignantly. In doing so, she has opened my eyes and heart to a better understanding of my husband’s struggles and emotions. I hope she will do the same for you.  

MESSAGE BOARD TOPIC: A DIFFERENT PERSPECTIVE - HOW OUR SPOUSES FEEL LIVING WITH THE DISEASE

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