depression | jmgoyder

Full of beans!

by jmgoyder

A long lost dream is coming true via a tall man with red hair, named Dan, whose business is called Full of Beans. Thanks to him, my vegetable garden is being created! If it weren’t for being invited to join the gardening group I would never have known about him, so I am very grateful. Ironically, I can’t attend tomorrow’s get-together because Dan is coming back to do the planting and I want to learn.

One of the things that really appeals to me about Full of Beans is that it provides an ongoing maintenance service for gardening novices like me.

Okay, so gardening friends far and wide may see this as a kind of cheating on my part (employing someone to make me a vegetable garden) but oh well. I am already crazy about what Dan has begun to create and can hardly contain my excitement.

Anthony was an avid gardener, despite not having much time, with milking the cows and looking after his mother. Nevertheless almost everything he planted, over 50 years ago, still survives. But he was never the least bit interested in growing vegetables. A couple of years into our marriage, I asked for a vegetable garden but he said there was no room. I argued that there was plenty of room (5 acres around the house!) to no avail.

And, as Ming grew up into an adolescent, he formed the same opinion. It was just a small dream of mine but neither of them would have a bar of it. That’s okay; they just weren’t interested and maybe didn’t realise how much I wanted the vegetable garden. I couldn’t do it by myself so one year my brother came out and dug me a patch and every single gigantic zucchini gave me a thrill. But that went by the wayside in the face of Anthony’s mysterious deterioration in health (we didn’t know about his Parkinson’s then) and the fact that I was working full-time that year.

Now that Anthony is no longer cognisant of our shared reality; now that Ming is in a fantastic relationship; now that I am learning how to be completely alone, a vegetable garden seems profound.

A long lost dream is coming true via a tall man with red hair, named Dan, whose business is called Full of Beans.

http://www.fullofbeans.com.au

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An argument about Anthony’s smile

by jmgoyder

You know how I’ve been saying how wonderful it is to see Anthony smiling again, and that I’ve been crediting myself with having made a huge effort to get that smile back? Well, Ming disagrees.

Today was a day off work for Ming so he went to see Anthony and I had a day at home. When he got back he told me that he had Anthony laughing!

Ming: Mum, Dad never lost his smile!

Me: You don’t see him as much so you don’t know – anyway you can always make him smile because you’re Ming!

Ming: So can you and so can anybody!

We left it at that; after all there is no point having an argument about a smile. Nevertheless our brief argument got me thinking about Anthony’s Parkinson’s ‘mask’ (the blank, unblinking, slack-jawed expression on his face, typical of PD). And I realised that the only reason I see this more than anyone else does is probably because, when I visit, I am there for hours so I see the fluctuations.

For example, when staff come into Anthony’s room and banter or flirt with him, he smiles; when friends and relatives visit, he smiles; when Ming and I visit, he smiles. So perhaps I should adjust my thinking to the possibility that it has become easier to conjure/coerce that smile? Maybe Anthony’s smile, and even his laugh, was always there, always ready to be there.

Maybe it was my own smile that went missing for so long.

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Swings and roundabouts

by jmgoyder

Yesterday I said, rather blithely, “I refuse to be sad” (about Anthony’s Parkinson’s disease etc.). This morning I realised why it’s possible for me to say this.

Anthony isn’t sad!

It’s as simple as that. Okay, so saddish moments come and go, and the first year of him being in the nursing home was a hell of mutual sorrow. But, in retrospect, it was me shedding most of the tears, not Anthony. In fact often, when I left to come home, he would comfort me.

But it’s now that matters and in-the-now neither of us is sad, which is a bit of a miracle really. The weird irony is that I would not be able to cope with Anthony’s illnesses if it weren’t for his own emotional resilience. I’m not very good at emotional resilience, but Ants is.

People often think that the person in the nursing home is the vulnerable one and that he or she is the one in need of comfort. But sometimes it’s the other way around; it’s the visiting spouse or daughter, or grandson, or friend, who is in need of comfort.

Anthony comforts me!

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Sep 18

Leaps and bounds!
by jmgoyder

Gardening: I have planted vegetables in one of the beds that Jake (my lawn and gardener friend) has created for me. I have no idea whether these lettuce, cucumber, corn, parsley and tomato seedlings will grow up but here’s hoping. I’m a bit too nervous to ring Jake and ask if I have planted these things in the right places – i.e. should they be in the grave-like mounds or in the gullies? Just in case, I did both.

Chooks: Six quite different chickens are gradually getting used to each other with minimal violence. They have a lovely yard so hopefully peace will soon reign.

Lunch: I seem to be going out to lunch a lot lately which is something I only ever did very occasionally before Anthony went into the nursing home. This feeling of freedom is relatively new to me. It was always there of course and Anthony was never one of those dominating, bossy husbands who insisted on the adding cream and more butter and salt to the mashed potatoes. Wait a sec. – yes he did!

WELL, IT’S BETTER THAN NOTHING, YOU GARDENING, CHOOKING, LUNCHING PEOPLE!

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Sep 14

Keeping a record
by jmgoyder

Yesterday, after writing about Anthony not coming home, not asking to come home, and sometimes not remembering home and/or thinking he is home in his nursing home room, guess what?

He asked to come home. Not once, not twice, but repeatedly throughout the late morning and early afternoon. I was so taken aback because this hasn’t happened for ages – maybe months – so I was a bit unprepared. He kept trying to get up from his armchair (he needs help to do so) and, every half hour or so, repeated, “Come on Jules, let’s go.”

Me: It’s too cold and wet today, Ants. Let’s wait until the weather is better.

Anthony: I can light a fire in the fireplace.

Me: We don’t have any kindling.

Anthony: I’ll chop some in no time.

Me: It’s a bit late in the day, today. What about tomorrow morning?

Anthony: You’re unreasonable (removing my hand from his).

Me: What? Are you angry with me now?

Anthony: I haven’t been home for months. You keep stopping me!

After a couple of repeats of the same conversation, more or less, I decided to end it by promising to pick him up at 10.30am today and bring him home. Once that was established, he reached for my hand again and we continued to watch the television and eat olives.

When I got home last night I wondered if this sudden relapse into homesickness (which was a two-year nightmare for both of us which I blogged about on and off) might have been triggered by my conversation with Anthony’s nephew the other day about the possibility of bringing Ants home for the day. In retrospect, I should have steered this conversation away from the topic of ‘home’ (especially within Anthony’s earshot), but I had no way of anticipating that the idea would somehow stick and re-emerge days later.

Okay, so today was when I was supposed to fulfil my promise to Anthony that I would pick him up at 10.30am and bring him home. This may sound callous but I had no intention of doing this, simply because I can’t physically manage him by myself; he is too heavy.

So I made myself wait until after lunch to go in and see Anthony. And I have to say that it was with a mixture of dread and curiosity that I entered his room (with my bunch of camellias).

To my great relief, it was immediately apparent that Anthony had forgotten yesterday’s ‘home’ conversation. Instead:

Anthony: I didn’t expect to see you! You are good at geography.

Me: Look at these camellias!

Anthony: You’re so early! (It was 1pm)

Me: How do you like my boots? (I was wearing colourful boots)

Anthony: A bit way out.

Me: How Dare you!

Anthony: Sit down and shut up.

Me: Don’t you tell me to shut up!

Anthony: Can you put that that that trolley up in my room? (pointing to his walker) – also that woollen coil (pointing to the blanket on his knees).

Me (putting walker into his bathroom and closing door, readjusting his knee blanket): Okay – are you warm enough?

Anthony: Yes.

Me: Right, so can you stop fussing about the stupid blanket? It’s just a blanket!

Anthony: Yes, but look at the little fella (there is always either a child or a pet on Anthony’s lap from around 4pm).

Me: Yes, it’s a beautiful sight, beautiful.

Anthony (after a bit of a slumber): Jules?

Me: Yes? I’m here, Ants.

Anthony: Can you roll me up?

Me: Do you mean put your feet down? (I had his feet up in the armchair) How’s that?

Anthony: Bloody beautiful.

I always have pen and paper handy to scribble down my conversations with Anthony. Today and yesterday have been interesting in terms of his alertness (some days he sleeps and/or drowses during my visits).

It sometimes seems a bit odd to me that I am so fascinated by what is actually a tragic situation but Anthony has always inspired me in one way or another. At nearly 80, he has the most extraordinary resilience; he is positive without meaning to be; and he never complains except to say he is “a bit tired”.

Keeping a record of these conversations seems important somehow. For me, these transcribed tidbits of conversation make me feel as if I have a handle on our situation; that I can somehow control it into a manageable story that Anthony will appreciate.

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Sep 9

Restful
by jmgoyder

Sometimes I feel a bit guilty for being so totally relaxed and lazy in Anthony’s nursing home room. Okay so I did a bunch of paperwork there today but, for most of the afternoon, I just put my feet up on his knees and watched West Wing while he slumbered on and off.

I think this restfulness is good for both of us; he wakes up from a nap and almost always says, “Jules?” For me, it is good to be there because there must be many, many other times that he asks for me but I’ve gone home.

Most of the staff now know the white lie I want perpetuated – that ‘Julie will be back soon’ – and this seems to comfort Anthony (and me of course!)

This afternoon, as Anthony slumbered, I quietly packed up my things and put a pillow on the chair next to his, where I usually sit. He suddenly woke up and said:

Anthony: Where are you going, Jules?
Me: Just to get some groceries, Ants. I won’t be long.
Anthony: I am crazy.
Me: No, you are NOT crazy!
Anthony: I’m crazy about you.
Me: Oh … well, so you should be!

I no longer think being restful is a lazy thing; it beats the hell out of anxiety, and it beats the hell into acceptance.

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Aug 22

Whoops!
by jmgoyder

Oh I am such an idiot!

Okay, this is what happened. I stayed with Anthony later than usual this afternoon because his favourite nephew arrived for a visit and I didn’t want to miss out on that. Then, Anthony’s 5pm dinner arrived as the nephew was leaving, so I ended up helping Ants with the soup, mornay and dessert.

Once that was done, I turned the television onto the ABC News channel and put it on mute as I gathered my stuff to leave. Usually I say I am going shopping, or to the chemist and I’ll be back soon but tonight I told the truth.

The only reason I admitted I was going home was because the first thing he said to me when I arrived this afternoon was:

You didn’t come back last night. Where did you go?

Now the trouble with lies is that sometimes you forget them. So I said:

I can’t remember!

Anyway, as I was putting a jumper on him, and getting a blanket for his knees, and putting the two camellias I’d picked into water, and settling myself into a chair next to him, I suddenly remembered. The following is our conversation:

Me: That’s right! I remember now!

Anthony: You always say I’m the forgetful one.

Me: Well I’m getting just as bad. Anyway, I went home to make the pea and ham soup – remember I showed you those massive ham hocks?

Anthony: Where is the soup?

Me: Whoops – I forgot to bring you some. I will tomorrow. Sorry!

Anthony: Well I’ve just come back from U. and I.’s place in Serpentine. [Note: these relatives are deceased, and Serpentine is 160 kms north]

Me: Really? So you must be exhausted!

Anthony: Yes. So I just want you to get some paper animals in the glove box.

Me: Okay – anything else?

Anthony: A couple of paper animals.

Me: Which ones?

Anthony: Well, they should be in the letterbox … but dead.

Me: Don’t worry, I’ll take care of it.

Anthony: You might be sitting on them. Get up.

Me [getting up]: Nope – no paper animals.

Anthony: They don’t appear to be there.

Me: You’re hallucinating again, Ants.

Anthony: You always say that.

Me: Can you just shut up so we can watch the series?

Anthony [fussing with the blanket on his knees – a constant thing]: The little chap’s had a good day; he hasn’t moved much.

Me: That’s good. It means he’s happy, Ants!

So the fragments of our afternoon conversation ranged from eloquent to incoherent, nonsensical to logical, silent to noisy etc. and I still haven’t figured out if the ‘little chap’ on Anthony’s knee is baby Ming or a dog!

All in all, it was a great afternoon but, just as I was leaving, Anthony suddenly became agitated.

Anthony: But you can’t leave me here. We need to be in the same bed.

Me: I have to go home to rescue the pea soup and I’ll come back tomorrow morning.

Anthony: Why can’t you stay here with me tonight? I don’t know this place! I’ve only ever stayed here once before and it’s where J. and P. got married.

Me [sternly]: Listen, Ants, you are in a nursing home and you are sleeping here tonight and I am going home but will be back tomorrow morning.

Anthony: No!

At this point one of the wonderful carers, having overheard our conversation from an adjacent room, came into Anthony’s room to reassure him and I gave him a millionth kiss and left.

It’s the first time for ages that I have felt distressed driving home. No tears but just distressed that he was distressed.

So an hour ago I rang the nursing home and the nurse-in-charge told me that he had just been settled into bed but she would go and check again. She is, by far, Anthony’s favourite and, when he was upset and confused earlier he actually asked for her by name, describing her as the nice one in the red shirt. She has even been nicknamed his ‘girlfriend’.

Anyway, I’ve now decided to never ever tell Ants that I am going home – never! I will go back to saying things like:

Just going to the chemist to get toothpaste; what kind of chocolate do you feel like; do you want beer? etc. AND: I won’t be long – see you soon….

No more whoopsies!

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Jul 29

‘Thunking’
by jmgoyder

Thinking versus thunking (I like thunking!)

3.10am: There is something quite exciting about hopping out of bed at 3am, wide awake, dashing to my writing room and switching on the computer and, aha, engaging with various friends. It seems somehow illicit to be up and about, drinking coffee while the sky is still black night, listening to absolute silence, reading thousands of words, smiling at photos on my screen ….

4.03am: Me chuckling that it is now just after 4am and nobody is going to tell me to go to bed.

4.38am: Ming’s favourite phrase is “Do what you want to do!” This type of 21-year-old wisdom sustains and motivates me whenever I am stuck. I feel grateful for this wonderful son of ours who, having recovered from two spinal surgeries, his father’s transition from home to nursing home, the car accident that injured so many and was his fault ….

For all of the above reasons I prefer to thunk rather than think because too much thinking can do your head in whereas thunking allows you to step aside. It might be just a tiny step (an ‘i’ to a ‘u’) but it makes a hell of a difference!

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Jul 24

Predicting unpredictability
by jmgoyder

I think one of the most difficult things for carers/families/friends of people with Parkinson’s disease, Alzheimer’s disease, or any disease that involves dementia, is the unpredictability of every single day.

Two days ago I sat with Anthony all afternoon and he slumbered the whole time away even when I punched him in the shoulder a couple of times to make sure he was alive. Instead of waking up, he just kept chuckling in his sleep – over and over again! So I just sat there next to him with my arm around his shoulder and watched TV and ate my lunch. A few hours later I informed the nurse-in-charge that he was a bit sleepy and that I was a bit worried he might have had another TIA (mini-stroke).

Me: I’m going to leave my scarf on the chair next to his, so he gets the impression I will be back soon. Is this okay with you?

Nurse-in-charge: Of course!

Later that evening, I rang the nursing home to see if Ants had woken up and the nurse-in-charge reassured me he was fine and that she’d showed him my scarf (an indicator that I would be back).

Me: You are okay with me not coming back?

Nurse-in-charge: Of course!

Okay so I have blogged about this before – this kind deception thing whereby I leave Ants to come home but always say I will be back soon. The reason I do this is because it is kinder than saying I am coming home without him.

This tactic has worked for many months. I turn up the next day at the nursing home and Ants doesn’t seem to recollect that I didn’t return the previous evening.

But today was different! I did my usual:

Me: Just going to get some groceries, Ants – I’ll be back later.

He looked at me with an expression of such lucidity that I was taken aback.

Anthony: You didn’t come back last night, Jules.

This is so weird! Today he remembers yesterday’s promise of tomorrow, but has forgotten so many of yesterday’s tomorrows that every single today is confusing even for me!

Bottom line in this kind of situation is to simply go with the flow I guess?

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Jun 25

Dina
by jmgoyder

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.

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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