What if this happens to us?

I’m very grateful to have a small, already-established readership of this blog, due to the fact that I linked it to my primary blog at jmgoyder.com, wings and things. I’m also glad not to have too many readers while I am still feeling my way here.  My intention in this blog is to write articles about dementia, Parkinson’s disease, nursing care, and any other related issues that crop up, with a view to publication in magazines and/or journals. As my book about Alzheimer’s disease was published way back in 2001, and subsequent articles a few years ago, I want to draw from some of the material and research already done, but add my current thoughts, now that my husband is in a nursing home and has Parkinson’s disease dementia (PDD). Obviously, my previous publications were written at a time when I had no idea this would happen, but in re-reading and re-writing some of what I already wrote so long ago, I have been struck by the fact that maybe, now that I am no longer a nurse or a PhD student, but a wife struggling with my husband’s deterioration in health, I might have something useful to say. Time will tell.

With my primary blog, I post daily (when the internet is working!) but with this blog, posts will be haphazardly irregular as I sort my thoughts and feelings out with this new perspective on, apart from other things, dementia and dementia care, and the difficulty of writing through the grief of days like today when Anthony was so confused. I will keep the articles to a maximum of 500 words.

One of the purposes of this blog is to provide tips to carers of loved ones in nursing homes and to, hopefully, alleviate the fear and anxiety that surrounds the horrible disease of dementia.

The thing that stuns me most is that, in marrying a man 23 years my senior, why did I never contemplate the question: What if this happens to us?

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Just a minute

I have so much more to say about this, but hesitate because I don’t want anyone to feel bad. On the other hand, why the hell have people who adored Anthony before he went into the nursing lodge abandoned him now? He isn’t dead!

Just one minute, one handshake, one kiss, one hug, would be enough to cheer Anthony up.  One minute, 60 seconds, big smiles, massive memories, will hopefully give him a good night’s sleep,

To those who visit Anthony regularly, thank you so much. To those who don’t, please know that one minute will be enough … just a minute.

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Dementia and feeling useless

Until Parkinson’s disease made so many things impossible, Husband was extremely good at fixing things around the farm. He was also very good at fixing things in the context of an argument – a gentle man, a practical man, a peace-maker, and a man with very good calf muscles!

Even though Husband had already been diagnosed with PD, I continued to work part-time at the local university and do the school run of dropping off/picking up Son from high school. I didn’t become nervous about leaving Husband alone until I came home one day to find him lying face-down in the vegetable patch. I didn’t become nervous until Husband tried to show me how to connect an imaginary electrical cord into a water tank.  I didn’t become nervous until Husband thought a team of people were cutting down his favorite tree.  I didn’t become nervous until Son said Husband, who had stopped driving, had taken off in the car and Son had to follow him in the old ute to make sure he was okay (a hair-raising experience after which we took the keys out of the car). I didn’t become nervous until Husband was unable to get himself up out of bed to go to the toilet, unable to open a jar of Vegemite, unable to understand a movie, unable to laugh, unable to squeeze my hand, hold his coffee cup without spilling it,  go to sleep,  wake up,  know what day it was.

One of the most difficult things about having any sort of incapacitating illness is feeling useless. That’s why it was so wonderful the other week when Son brought Husband home from the nursing lodge specifically to help us settle an argument with each other. It must have given Husband such a thrill because he keeps mentioning it. This may well be why he wants to revisit various situations in his past life story, in order to ‘fix’ them. I tread a fine line here between real and surreal, past and present, resolvable and not, but, as Husband has always been so adept at right-side-upping the upside-down, I am willing to embrace fiction as a way of reassuring him.

Okay, back to the situation of feeling useless, one way of making someone feel useful is to ask questions. Who do I order the kerosene for the Aga from? What do we do if the rabbit problem gets worse? Should I get some gravel for the driveway potholes now or wait until it stops raining? What should we do about the shed that is falling down?

Husband always says he will come out and help. At first I used to say things like, how the hell can you help when you can’t even bloody walk? Now I say, okay, that is a great idea. Sometimes he says bizarre things like how lonely it is driving home by himself. Sometimes he asks where his mother is and is she okay.

If someone/anyone fixes something/anything, it proves that they are useful. And useful people are thanked all the time. Okay, so how often do you think residents in a nursing homes are thanked for anything? What if staff and visitors were encouraged to ask questions of the person with dementia? What if this same person were asked for advice, for an opinion, a weather prediction – anything?

[This is a work in progress so any feedback appreciated].

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Dementia replay 1

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!]

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