jmgoyder

wings and things

Anthony’s ‘girlfriend’

There is a lovely woman (I will call her Mary) who works as supervisor during afternoon shifts at the nursing home. She and Anthony have such a rapport now that his slow smile stretches into a grin when she enters his room to give him his 4pm meds. The three of us now joke that she is his ‘girlfriend’.

Today was no exception:

Mary: Hi Anthony, I’ve got your pills.

Me: Ants, it’s your girlfriend!

Anthony: Hi … (smiling)

Me: It’s Mary, Ants.

Anthony: Hi Mary.

Mary: Here are your pills, Anthony.

She and I then got chatting while Anthony swallowed his pills (it sometimes takes awhile). I had my one remaining PhD student’s nearly-completed thesis on the table and was checking it for typos. Mary was curious so I told her I used to work at the university and that I’d done a PhD too years back and turned it into a book about Alzheimer’s disease. She asked if she could read it so I gave her the copy I have in Anthony’s top drawer. Then she got called away.

A few moments later, I asked Ants if the pills had gone down.

Me: Have you swallowed them?

Anthony: No.

Me: What? Do you need water? Open your mouth. Yes, they’ve gone down, your mouth is empty.

Anthony: No.

Me: What do you mean ‘no’?

Anthony: Ring the … girlfriend. She might have them.

Me (laughing and hugging him): I don’t need to ring her – she’s here! And the pills have gone down, trust me!

I continued to read the thesis when all of a sudden Anthony belched loudly. I put my pen down and glared at him.

Me: How dare you burp in my presence!

Anthony: I’ll have you know … I’m whatshername’s boyfriend.

I find it absolutely amazing that, despite the confusion of Anthony’s dementia, his sense of irony and humour can be so extraordinarily spot on!

After laughing my head off, I took my leave with the usual excuse of ‘just going to get some groceries’.

Anthony: Don’t be too long.

Me: I won’t and just remember I am your real girlfriend.

Anthony: No you’re not – you’re my wife.

It was a very happy drive home.

Another irony is that Mary has borrowed my book which is based on a similar experience from my years-ago nursing days. The way Mary and Anthony interact parallels my experience with a patient I called ‘Joe’, whose refrain became the title of the book “We’ll be married in Fremantle.”

Perhaps the fact that I no longer work in the dementia wing is, despite the difficulty of having had to make this decision, a good thing. As I am now a lady of leisure again, I have much more time to write about the subject of dementia which is so close to my heart and has been for over 20 years. Now, of course, it’s even closer with Anthony in its grip.

My mother and I had a laugh on the phone today because she had visited Anthony in the morning and, after an hour or so, he suddenly said, “Are you going home now?” Having been dismissed, she gathered her knitting and left after giving him a hug.

Me: How come you asked my mother to go? She was hurt.

Anthony: I didn’t.

Me: You asked her if she was going home and she took the hint!

Anthony: She’s not you.

Okay, so my mother is out of the competition but there is still Mary to worry about – haha!

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Still Anthony

A couple of years ago I read Lisa Genova’s novel, Still Alice and, over the last couple of days, Anthony and I watched the movie. For those who haven’t seen or read the story, Still Alice is about how a linguistics professor, Alice, is diagnosed with early onset Alzheimer’s disease at the age of 50 and how she and the family cope.

I suppose it was a strange choice of film to watch with a husband who has Parkinson’s disease dementia (and was probably a contributing factor in the grief I felt the other evening). But yesterday, as he and I watched the final scenes, he suddenly became quite engaged in Alice’s deterioration, and asked me what was wrong with her. I keep the dvd controller close so I can pause whatever we are watching whenever Anthony says anything.

Me: She has Alzheimer’s disease.
Anthony: It’s worse now, isn’t it.
Me: Yes.

I had paused the film at a particularly stark close-up of Alice’s confused expression (Julianne Moore is brilliant as the character Alice). Anthony and I both looked at her face for a few moments then I hit the play button again and we watched silently as the movie came to an end.

Unlike Alice, Anthony has not had to experience the creeping horror of knowing he has dementia. He still doesn’t know and I don’t tell him because I don’t want him to be afraid or embarrassed. So, when he asks where his mother is, or how she is (this is a frequent question) I just say that she is fine.

Anthony: Is she at home?
Me: Yes.
Anthony: Is Ming there too?
Me: Yes, and they’re both fine.
Anthony: So when are we going to Golden Valley?
Me: When the weather gets warmer, Ants. It’s too cold today.

Anthony’s mother died over 30 years ago and Golden Valley was his childhood home so the only ‘real’ aspect to these conversations is Ming.

I’ve recovered from my grief episode of the other evening and, since watching Still Alice, realise how lucky we are that Anthony has never had to go through that fear-of-dementia experience because it has just happened, insidiously, slowly, kindly even. He doesn’t know he has dementia; he still recognises all of us; there is still a lot of laughter and Anthony’s one-liners are hilarious.

Anthony: You need to brush your hair.
Me: I just did!
Anthony: Do it again, it’s not right.
Me: I’ll shave your head if you keep hassling me!
Anthony: Feisty!

Still Anthony.

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Grief

Tonight I am in a state of such grief about Anthony that it is as if my eyes are inventing tears over and over again. I know he is cared for, and popular with staff, and I know he has gotten over his terrible fear of the hoist but of course I still worry.

Mostly I can manage the grief, but sometimes I just have to succumb to it by crying and crying and crying until I, once again, reach a point of acceptance, and the anticipation of tomorrow when I will see Anthony again.

Ming and I talked about it tonight – this grief thing – but we were unable to come to an agreement about how to cope. We both love Anthony so much; we both feel guilty to have placed him in the nursing home; but we are also happy that neither of us has the burden of care anymore.

We can just love Anthony now and that’s what I said to Ming tonight. But the grief is potent and present and debilitating.

I just hope that Anthony knows how much I love him, even when he forgets who I am.

Grief has gutted me lately, but it’s not going to win!

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Paperwork phobia

I have a bit of a paperwork phobia.

I don’t go to the post office anymore because it is too scary. Ming usually collects the mail on his way home and brings it to me in my writing room. I politely thank him or else say:

TAKE IT AWAY, TAKE IT AWAY, TAKE IT AWAY – JUST EAT IT!

I don’t quite know why I have this phobia because most of these letters are relatively harmless, even innocuous, and I pay most of the bills online because I don’t have an email phobia (luckily). It would be good to admit that my paperwork phobia was due to my objection to so many trees being cut down to create all of this mail but, even though I agree with myself here, it’s not that. It’s more to do with the envelopes and what might be inside them.

So the letter(s) sit on my desk briefly, threateningly, until I throw carefully place them, unopened, into the box of things-to-do.

Once the box is full, I take it to the nursing home and place it on Anthony’s bed. We hug and I explain it is a ‘paperwork day’ and that I need his moral support. It is only then that I have the courage to open all of the envelopes, file anything important and trash the rest. This usually takes about 10 minutes.

Okay so this is a bit tongue-in-cheek but also very true. I literally can’t seem to do the paperwork unless Anthony is by my side and, once it’s done, I am so happy that I get a bit frolicky and this gets a smile.

I also have a bit of a phone phobia ….

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The enormous power of humour

There are all sort of theories out there that encourage people to combat their despair, depression, and personal tragedies, with positive strategies and tips. Many of these theories and tips are extremely helpful. In fact there are probably more resources now than ever before and it can be a confusing array for someone who is in despair. Nevertheless, despair is despair is despair and I have found, within my own ongoing situation with Anthony’s Parkinson’s disease and other situations (which we all have), that accepting these moments of despair is much more useful than trying to frolic them away on the back of platitudinous clouds. Clouds wouldn’t be clouds if they were constantly shot through with those over-heated parasites of despair. Don’t get me wrong; I am not in despair but it does have a habit of visiting me unexpectedly from time to time and last week it became such a pest that I had to politely ask it to leave. And, hey presto – whatever that means – it was gone! Okay I have my nouns, verbs and metaphors a bit mixed up but what the hell; I don’t teach at the university any more so, as far as I’m concerned, my sentences can do what they want. And the point of this post? The enormous power of humour. Ming, Ants, Meg and I watched our favourite comedy series this week and, even though Anthony’s ability to laugh loudly like he used to, has gone, there were a lot of smiles. The despair left the room with its tail between its legs and, next time it decides to pay a visit I will be armed and ready – with laughter! There is so much more I could say about this but I will save it for another post because it can be quite exhausting laughing despair away!

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Anthony’s room

Every day I look forward to going in to the nursing home to be with Anthony. His room has now become home to me; Ming throws his big self onto the bed, my mother knits, friends and relatives visit us here, and staff are welcoming with cups of tea and jokes. I love being in this room.

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The only child

Anthony and I decided to just have one child, Menzies (Ming). I don’t quite remember now why we made this decision but it was probably due to the fact that Anthony was already nearly 60 when we got married. I do remember, however, that this was a mutual decision.

Now that Ming is 21, Anthony is in the nursing home, and I am once again a lady of leisure (ha!) it is with some astonishment that I look at this boy/man. How on earth did Ming survive all of those years of Anthony’s illnesses? How did he manage, as a teenager, to share the ‘night shifts’ with me? How did he put up with my anxious, endless tears? How did he not mind the way I would escape to my office when I came home from my job at the university? How did he cope with the fact that our once boisterous life became so quiet and desolate as Anthony’s Parkinson’s disease encroached? And how did Ming undergo his two spinal surgeries, give up football, his dairy farming job, and motorbike adventures, with so much dignity and acceptance?

I am so proud of him. Ming is the loud, boisterous epitome of how Anthony once was; he is the life of the party, the polite guest, the gentleman; he is never shy but often uncertain. Last night I came home to see him on the front lawn with his arms outstretched. I stopped my car on the driveway and rolled down the window and this was our conversation:

Me: What are you doing?
Ming: Just wanted to greet you with a hug!
Me: Why?
Ming: You are the only person I really trust.
Me: I visited the women in the dementia cottage today.
Ming: Why?
Me: Because I love those women! It doesn’t matter that I’m no longer employed – I can still visit.
Ming: You are the most beautiful woman, Mum, I really mean that.

So proud – our only child.

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Today

Okay so I’ve been reading Tolle and trying to do all of that ‘being in the now’ stuff and I think I have a better handle on things.

In dementia there seems to be an unhappening; today is simply today, this minute, second, moment is just that. Memories are painful and confusing and the future is bleak. Now becomes all-important.

So today I visited my friends in the dementia cottage with a completely different attitude. As an ex-staff member I felt the wonderful freedom of just being a visitor!

I did a whole lot of hugging today.

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Just being there

One of the things I’ve learned over the last year or so is that I don’t need to do anything, go somewhere, think of an activity, plan an event, force Anthony to converse, figure out how to get loved ones to visit him more, stress myself wretched with ideas of how to make his life better … I just have to be there.

So that is what I do now – an undoing really – a breath-saving realisation of how simple it is. I sit next to this beautiful husband of mine, with my hand on his shoulder, or stroking his head, watching television, talking about the past, sharing secrets, rejoicing in our son, Ming, smiling at each other, joking about silly things ….

We are so conditioned to do, do, do! It is such a great relief to simply be there, to embrace the long stretches of silence when Anthony is dozing, to quietly rejoice in the fact that our love has not been diminished by his disease, to just be.

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Making friends with dementia

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

In my PhD research and subsequent book about dementia – eons ago – I talked about how, no matter how nonsensical or confusing the person with dementia’s stories were, it was still beneficial to have those conversations, to participate in what I called ‘storying’.

Fast forward to now and working in the dementia cottage has been an absolute gift. I have a job, albeit part-time, in which my role is that of “Lifestyle Assistant”.

Over the last several months, as both a volunteer and employee at the nursing home where Anthony resides, I have become more and more enriched by the relationships I’ve formed with the residents in the dementia cottage. Partly this is due to putting into practice much of what I learned and believed all those years ago when I simultaneously worked as a nurse in a nursing home and embarked on my thesis.

This job has taught me so much, not just about dementia itself and how it affects people differently, but about how vital friendship is to those who have dementia. Common sense really but it is often assumed that if the person with dementia doesn’t recognise you, you may as well not bother visiting, conversing, relating to them. But why? That person with dementia still needs your friendship even if she or he doesn’t know who you are anymore.

On entering the dementia cottage, I am mostly unrecognised as someone any of these ten women have met before (every yesterday has usually been forgotten), but I am still made to feel welcome, and warmly greeted by those who can still speak. The first thing I have begun to do, during my 3-7pm shift, is to greet each of the ten women individually, either with words, or a hug, or a joke, or the offer of a wheelchair walk.

I realised the other day that the reason I love the job so much is simply due to the fact that these women have become my friends, so much so that I have begun to miss seeing them on my days off. Since I only work six four-hour shifts per fortnight, that’s a lot of missing! I love these women (despite the fact that Anthony has often told me that I throw the word “love” around a bit too freely!)

The point is this: my ten friends with dementia may not know who I am, but I know who they are. I’ve read their histories, learned their personalities, and have now figured out which activities individual people most enjoy.

Dementia can be a cruel, debilitating disease which renders the victim helpless in so many ways. People with dementia need friendship but those of us without dementia should consider the possibility that we also need their friendship.

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

But I will know who he is and, if he asks, I will simply say, “I’m your best friend.”

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