My husband has PDD (Parkinson’s disease dementia) and has been in a nursing home now for over 18 months. This was a heartbreaking but mutual decision that has ruptured our little family of three (we have a 19-year-old son), but we are gradually coming to a place of acceptance. Husband’s memory dims and distorts haphazardly but he is mostly lucid. However, over the last few weeks, he has referred several times to some unfortunate events that took place in our lives years ago, as if they are happening now. In this post I discuss what I’ve termed dementia replay, and outline ways of alleviating the stress this may sometimes causes the person with dementia.
Have you ever wondered what that elderly person, sitting in an armchair in a nursing home, with a blank, or grimaced expression, is thinking? Have you ever wondered why that gentle, gentle woman suddenly swears at the air? Have you ever wondered why that man who dribbles from his mouth also dribbles from his eyes? What if these expressions are due to the replay of unpleasant memories? What if that person with dementia is no longer able to differentiate between the past and present? What if that person is silently, wretchedly, confused?
For people with various kinds of dementia, I believe that these sad and/or angry expressions, verbal and non-verbal, might be due to the memory’s ability to replay past events in the present. This is what seems to be worrying Husband lately. Happy memories of happy events don’t require resolution do they; sad events do, and this may explain why, in cases of dementia, unpleasant memories can be so tenaciously and persistently replayed.
To give you a bit of context, during the 1990s, the announcement of our engagement was met with fierce opposition from a family member with whom Husband was in partnership, and lately Husband repeatedly asks me if this person taken our farm. He often asks me desperately not to sign anything because he is obviously remembering being coerced into signing things for his ex-business partner. This latter is the most recurring replay.
In between these episodes of dementia replay, Husband is in touch with the now, however this can change in the space of a minute, which is disconcerting for me. The more he sees of me, the less likely these episodes occur so I try to see him every day and I speak to him on the phone several times a day. Nevertheless, during our goodnight phone conversations, he is sometimes anxious that he might have lost our farm, and often asks me where Son and I are living! This is a good example of dementia replay and it mostly happens between the twilight hours of 5 and 8pm. That is a lot of hours for anyone to be anxious.
During the last week or so, it has been distressing for me to witness how dementia replay has allowed the past events, resolved long ago, to re-insinuate themselves into the present so much so that my reassurances are often forgotten by Husband the following day. No matter how many times I say that the situation is all over, it keeps creeping back into his sentences. He wants to visit, he wants to reconcile, he wants to reprimand, he wants to keep our farm safe from harm.
How to handle dementia replay:
1. Reassure the person that everything is okay now. And, if that doesn’t work,
2. Change the subject. And, if that doesn’t work,
3. Make up a story that contradicts the unpleasant memory and stick to it.
How not to handle dementia replay:
1. Do not agree with the person’s anxiety.
2. Do not dismiss the person’s anxiety.
3. Do not engage in unpleasant reminiscences to do with the person’s anxiety.
If an unpleasant situation is over in real life/real time, do not buy into dementia replay in order to try to fix it all over again. One of the mistakes I made recently was to arrange for Husband to meet with the person who is more or less estranged. It was only when I realized that Husband wanted to clear the already cleared air, that I knew I/we would be replaying a toxic situation, so I cancelled.
These are Husband’s most pressing questions/statements to me lately:
“That group tried to get me to sign again last night but I didn’t. Please don’t sign anything!”
“Where are you living?”
“I can come home and help you; I’m much better now. ”
“Where is Son?”
“Don’t worry about [ex-partner] – I’ll sort him out tomorrow.”
This afternoon, I am going into the nursing home armed with a multiplicity of good memories. I will not ignore Husband’s anxiety but I will override it with a bunch of beautiful do you remember whens?
To be continued….
[Note: this is a first draft of an article that I would like to submit to the Australian Journal of Dementia Care, so any feedback is appreciated!]