jmgoyder

wings and things

Day off

I decided to take a day off from visiting Anthony so just texted Ming to visit after work and he texted “Sure” – brilliant!

Instead I have been catching up with laundry and housework and further decluttering. It’s astounding how making myself accountable to Dina is so effective!

The weather is winter warm so at one point I took off my jacket and …
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Well at least it wasn’t a cockroach!

My feeding of wheat to the peafowl and guinnea fowl is deliberately haphazard because there is plenty of ‘food’ for them without the wheat and I don’t like them getting too dependent. Nevertheless as soon as they hear the back door open, they start running towards me – it’s so funny.
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Then there is quite a bit of competition as to who gets to eat first.
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Yes, I know she looks like Gutsy but she isn’t.

After they’ve eaten their fill, they bask in the winter sunshine.
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I’m a bit rusty with the photography but wanted to take a few new photos to show the women I’m visiting in the nursing home, three of whom are not in the dementia cottage. Yesterday I visited Gertrude (not her real name) who has only recently become a resident. She has Parkinson’s disease too and she was commiserating with me about Anthony who she said was “so young!” I guess 79-year-old people do seem young to 90-year-old people! At one point we discussed the pros and cons of diseases:

Gertrude: Tell me, which do you think is worse – Parkinson’s disease or that other one? (She pointed to her head)

Me: You mean Alzheimer’s disease?

Gertrude: Yes.

Me: Well Anthony has both now so I’m not sure ….

Gertrude: Both? This isn’t fair for him.

Me: Well it’s not Alzheimer’s exactly; it’s dementia caused by his kind of Parkinson’s disease.

Gertrude: I don’t have that.

Me: No, I can see that! You don’t have the shaking thing either and Anthony is the same.

Gertrude: I’m improving and sitting in this chair is so much better than lying in that bed.

Me: Do you have pain?

Gertrude: Just a bit of arthritis. Nothing much.

Me: I’m so glad. Anthony doesn’t have pain either – such a blessing.

We exchanged a smile and a hug and I went back to Anthony’s room which is in a different section.

Well I better get back to finishing the jobs I need to list as “done” for my email to Dina tonight!

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Dina

I wrote about Dina from Chaos to Clear in previous posts, describing how this wonder woman helped me to declutter and reorganise the spaces inside and outside this house. The process was a twice-a-week visit from Dina, over a period of several months. She/we even tackled the sheds despite the possible presence of asbestos.

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During this process, Dina and I became friends. She visited Anthony with me (where we sorted a huge box of old photos and another box of old paperwork), and she even visited Anthony last week when I was away in Perth!

Dina also supported me in a face-to-face meeting with the managers at the nursing home about my desire to continue to visit various residents despite having resigned. Her presence at this meeting ensured that permission would be granted, and gave me the confidence to state that I was already a family friend of many of the residents.

Anyway, this week I suddenly found myself a bit overwhelmed again with a new accumulation of unopened mail, the dregs of clutter I was supposed to have eradicated/given away, and Ming’s stuff here and there untidying my newly tidy house. So I emailed Dina asking her to come back and help with these last jobs.

Then – the next morning – before Dina even had a chance to reply, I emailed her again to retract my request and that I could do it by myself but I needed to be accountable to someone.

Dina emailed me back saying yes and to just imagine she was there looking over my shoulder. So for two days now, I have been reporting back to her about what I’ve done, and she has been encouraging me (all of this via email). This kind of accountability has worked wonders in terms of motivation!

Depression (yes, I have it) sometimes means that the person afflicted wastes days worrying, and nights dreaming, about tasks that only take an hour or so. The fear of those tasks is, of course, irrational, but when you are in the throes of depression and/or anxiety, even the simplest of tasks can be overwhelming.

I haven’t admitted to many, including Dina, that I battle with depression but I’m sure she realises and I so appreciate her kindness and patience with me. And her incredible support beyond the call of duty!

Who would have known that when I simply googled “chaos” I would find such a beautiful friend. Thanks, Dina.

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“Illness separated”

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Yesterday I went to see the people who help people like me to access employment and/or volunteer opportunities. I thought it was about time I got out of my lady-of-leisure mode since resigning from my job at the nursing home several weeks ago.

The woman I spoke to (I will call her Sue) pulled up my records and I misheard her saying that Anthony and I were separated.

Me: No, no, we aren’t separated!
Sue: Illness separated?
Me: Oh, yes, I see. He’s in a nursing home.

Anyway, Sue was very helpful and asked me to come back today with various bits of paperwork that would help to get me back ‘into the system’.

Even though the phrase “illness separated” isn’t new to me, I hadn’t heard it for a long time so it shook me up a bit. Of course there is no other way to describe our situation in terms of the red tape but it still sounds weird, especially the “separated” bit. Oh well.

The views from Anthony’s nursing home window sometimes look uncannily like home and yesterday he ‘saw’ his nephew milking the cows outside and wanted to help. I looked out the window and tried to see what he was seeing (his hallucinations are, thankfully, happy ones mostly).

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Me: It’s okay, Ants, he’s just about finished milking.
Anthony: What about the fences?
Me: Ming’s taking care of all that.
Anthony: How much money do we have in the bank?
Me: Lots, thousands!
Anthony: Okay.

I think we might fall into the category of “illness inseparable” now but that wouldn’t tick the boxes ha!

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Hugs

Now that I have resigned my part-time job as life-style assistant in the dementia wing of the nursing home, it has been an absolute joy to continue to visit the women I’ve become so fond of.

The hurt has transmogrified (oh how much I love that word!) into the hugging thing and, this afternoon, I visited and kept it simple.

We just did a lot of hugging.

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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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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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