Understanding dementia: Living an unconvential life

Bob Kahn's wife Sylvia died peacefully in her sleep on Sunday 27 June, 2021. This is a shortened version of a talk (or “skit” as Sylvia called it) they gave on their experiences to an Alzheimer’s Society meeting in Chester in July 2014.

Sylvia (S): I live an unconventional life.

Bob (B): Sylvia, did you just say you were an unconventional wife? 

S: No, no! “I lead an unconventional life” is what I said, not “I’m an unconventional wife.” 

B: Well, both statements are true. We’re not a conventional couple, ages 77 and 76. Here we are three and a half years after that MRI brain scan showed you having dementia. 

S: Yeah; and it’s still on-going. It hasn’t stopped. 

The dementia diagnosis 

B: Dementia doesn’t stop. I remember when we received the results of that brain scan that you probably had mixed dementia — a combination of Alzheimer’s and vascular dementia.  

As we were coming back from the Memory Clinic, you began to whistle the theme tune from Bridge over the River Kwai. I thought, “Yes, that’s quite appropriate. Your world has just been blown apart, but we can still build that bridge together.” 

S: I couldn’t whistle that tune now. 

B: I bet we can do it together, with some help from others. [whistle] 

S: I don’t always know what I can and can’t do. 

Learning to love someone with dementia 

B: Yes, that’s very true; and that is why we have built a partnership in which we look after ourselves and each other to the best of our abilities. You know, Sylvia, I’m falling in love with you now that you have dementia. 

S: It’s about time! We’ve been married for 51 years. We have 5 children and 14 grandchildren. Haven’t you been in love with me, just as I am in love with you, all that time? 

B: Yes, certainly, but your lovely personality has shifted now that you have reached the moderate stage of Alzheimer’s. I feel that your dementia, Sylvia, is my dementia. 

S: Oh no, it isn’t. 

B: Oh yes, it is.  

S: Rubbish! 

Close up portrait of Bob and Sylvia together

Bob and Sylvia

Moving on in the midst of dementia 

B: Now look! We share our lives; and we share your dementia. We enjoy life together—our marriage, being with the children and grandchildren, staying and sharing with friends, going to Singing for the Brain and concerts of classical music, the odd film and theatre performance, walking and shopping, Tai Chi exercise classes, and preparing and giving these skits. 

S: We do keep busy, but I often feel no good, because I don’t seem to have a useful position in society, whereas earlier I was working as a solicitor. 

Confronting dementia with service to society 

B: Your position in society has changed, but many other people can help with wills and probate and trusts. However, very few people have the courage and willingness to share openly their experience of dementia.

I think in our own experiences as media volunteers, Research Network Volunteers and fundraising volunteers for the Alzheimer’s Society we’re trying to change public attitudes to dementia. We can’t take anyone with dementia out of their situation, but we can develop the empathy and the insight to put ourselves into their experiences and encourage them. 

S: There is a big change I would like to see happen in how people with dementia are viewed and treated.

Those of us with Alzheimer’s are often deeply hurt when people are afraid to talk to us. Perhaps during the conversation we will repeat ourselves. So what? That’s life.

You can still talk to us; and you may be surprised by how incisive some of us can be. I do live in a muddle, but it’s spasmodic; and I’m never sure when it’s going to kick in.

As we prepared an earlier skit, I was sitting looking at the raindrops on the window pane. They were large drops which distorted my view of the houses on the opposite side of the road.

That is my experience of dementia — a blurring of reality, yet reality is still there, even if I am not aware of all of it. 

Bob and Sylvia's conversation is an excerpt from a longer skit. If you'd like to read the full thing, please contact Cherie Nyota, our Research Engagement Officer at [email protected].

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