jmgoyder

Thanks so much for the wonderful feedback on yesterday’s draft article. I think it would be really interesting to incorporate those comments into the final draft of the article. I’d also like to add some positive aspects to the notion of dementia replay but I want to do a bit of research first. The journal I want to submit to is called Alzheimer’s Care Today.

Here is another (very rough) draft article for those who are interested. Again, any feedback appreciated.

Dementia and Invisibility

Almost every day I visit my husband, Anthony, who is in a nursing home because he has advanced Parkinson’s disease, prostate cancer and now the beginnings of dementia. Over the 18 months since he was admitted, the PD has affected his ability to speak due to his throat muscles not working properly any more, a diminished ability to concentrate and, with the associated dementia (PDD), various degrees of confusion. He has been transformed from a larger-than-life, loud, laughing, boisterous person to a mostly silent person with a very soft voice and a blank, expressionless, seemingly sullen face. And, over the last few years, he has shrunk in size by nearly 10 kilos. Once upon a time he had the most wonderful presence.

Now, he is becoming invisible.

Not to me, but to others. Let me explain. When I visit I am greeted with great friendliness by all the staff, banter is exchanged and the quietness of Anthony’s situation is enlivened. Sometimes there is a rush of conversation which is difficult for Anthony to follow because with PD comes an inability to concentrate on more than one thing at a time. For example, if he is watching the news, he is too distracted to concentrate on my scintillating anecdotes (ha!) so I turn the volume down. If I visit at the same time as someone else, the conversation often bounces around him because he can’t keep up. If he begins to say something and has difficulty with the words (this is happening a lot more often now), there is a tendency to talk over him or else finish his sentences for him instead of waiting for him to finish what he has to say. I do this myself and have to make myself shut up sometimes.

Lately I have noticed that staff will often come into his room and start talking to me, but not to him, or rush past us on their way on or off duty and yell out ‘seeya Jules!’ or ‘hiya Jules!’ but not say this to Anthony. It’s as if my visibility makes him even more invisible. Even if he is included in these salutations, by the time he responds with his own ‘hi’ or ‘bye’ the person has long gone. And he is almost never able to answer ‘how are you, Anthony?’ quickly enough, so he seems to have stopped bothering.

Don’t get me wrong; the staff are wonderful and mostly rushed off their feet. This means that conversation with Anthony (whether I am there or not) is often limited to ‘lunch time, Anthony, up we get’, ‘do you need to go to the toilet?’ ‘bedtime, here’s the bell if you need us’, ‘here’s your 4 o’clock pill – have you swallowed it?’ and so on. When I am there I try to enable conversations between Anthony and the staff in all sorts of ways and this has been a lot of fun and very effective. I guess my intention here is to remind them that he is not just a person with a disease, but a person with a past, that he is a person.

Here are two of the things I have tried:

1. Pictures: I have decorated his room with pictures and photos, which I change from time to time. At the moment there is the enlarged photo of a young, robust, smiling Anthony, a photo of this farm from the late 1950s, an oil painting of cattle I commissioned for him as a Christmas present years ago, a series of photos of Ming as a baby (in the one frame), a personalized calendar my mother made with a different photo of us for each month, a photo of Anthony and me in the early days of our marriage, and a big, window-pane mirror that my brother made for him. My hope is that these visuals will not only trigger great memories for Anthony, but invite the curiosity of staff. The photo of him as a younger man has been a great success in both ways. ‘Wow, what a gorgeous hunk you are here, Anthony!’ ‘Is this your farm?’ ‘Who’s the funny-looking baby?’

2. Food: I take in home-made sticky date (now that I have become good at it), pistachios, exotic chocolates, fancy cheese and other treats and, even though these are primarily for Anthony, I share with the staff. I never realized before what a great conversation-starter food can be! ‘I’m just coming back for another chocolate! Is that okay, Anthony?’ Additionally, the chef at the nursing home makes the most divine pavlova so the other day she snuck me an extra piece for Anthony and voila, he is now recognized as the pavlova-loving patient, not just the patient.

Now, he is becoming visible again.

Of course there are many, many more ways of de-cloaking your invisible loved one if he or she is in a nursing home and these are just a couple of ideas. It is an exciting journey of discovery and beats the hell out of despair!