jmgoyder

wings and things

Beware of the dog: a cautionary tale

I wrote about the accident yesterday, naively thinking that if I regurgitated the stones in my throat, it might be possible to reach a place of calm, cathartic peace. How stupid was that!

The dog was here, again, its initial growl sounding like a lullaby until, once I had written my words down, it began to bark madly as if I had done/said something wrong. So I edited what I had written until the dog swallowed my extra words, until it attacked my thumping heart and painted it red with slices of stillness, until it put its big paw against my throat and whined until I woke up.

Jet black, this dog blends into the evening sky invisibly, sleeps in the pocket of the dark blankets around my feet at night, wakes me up every morning with the audacity of its sudden absence – not my best friend, not my worst enemy, but my closest companion.

Of course I hate the presence of this black dog, and its black eyes, and its black waving tail, and the black fur of its snuggly black snout but recently I have noticed the growing yawn of its absence. Hurray!

That dog was blocking out the sun with its big, dark presence, its ridiculous attempt to be a metaphor, its wolfish editorial antics. Beware of the dog.

I wrote about the accident yesterday, naively thinking that if I regurgitated the stones in my throat, it might be possible to reach a place of calm, cathartic peace. How wonderful was that!

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Wheelchair walking

Apparently, despite the fact that we are in Winter here down under in the southwest of Western Australia, the weekend will be sunny.

So I have decided to do something new and different and take Ants for a wheelchair walk tomorrow. Not only is this a way of getting him into the sun, it’s a way of me getting some exercise!

Also, I am contemplating using my blog to write more regularly again about how a marriage survives the dementia that comes with advanced Parkinson’s disease. Instead of blathering on about this and that, I will focus my blog-writing into a bit of a PDD theme. 

Since volunteering at the nursing home, I have learned so much and I seem to be in a perpetual state of quiet joy, playing dominoes and cards with various residents, doing the daily walk with dementia residents, rushing in and out of Anthony’s room for quick hugs.

The wheelchair walking will be a test of my physical strength (I am very unfit, physically) and, as the nursing home is close to the beach, and hilly, it will also be a test of preventing Anthony from toppling out of the wheelchair when we are going downhill!

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From listless to listful

Over the last few weeks I have discovered something wonderful about lists. You know, the kinds of lists that read like this:

Monday:
– pay bills
– ride bike
– groceries (don’t forget toilet paper!)
– change bedsheets and do the washing
– vacuum house
– write 1,000 words of new book
– ring plumber
– buy new hoses to replace leaky ones
– see Anthony
– cook a healthy meal
– catch up with other people’s blogs
– wash car
– plan next week with Ming
– ring Mother to arrange lunch
– start new filing system
– get prescriptions from chemist
– book lawnmowing people
– do tax
– return library books
– start taking photos again
– start praying again
– make soup
– make a cake for Anthony and Ming
– go to bed earlier and get up earlier
– do a cull of clothes
– sort out rubbish to take to the dump
– do tomorrow’s list

Okay so, despite the fact that none of the above tasks is, in itself, onerous, it was this kind of list, that rendered me listless. (Interestingly, the word ‘list’ derives from the Middle English word, ‘pleasure’). I would only ever be able to accomplish a few of my listed tasks, I would then feel like a failure….

Eventually, I realized that this kind of list-making was making me extremely unhappy, so much so that I could hardly face each and every day. I resented each and every task I didn’t get done and each and every goal that went by the wayside.

Nevertheless, every night I would make another list for the following day. Energized by a pre-midnight spark of incentive, I would make more do-able lists. But with no job to go to, with no Anthony at home to care for, and with Ming out of school, there was rarely anything on my lists that couldn’t wait, so it felt as if I were continually failing myself.

As a result, the familiar depression curled itself into a small bundle of rock-hard heartburn that only left me alone when I was asleep. So I slept away many days in June until, on the 29th, I woke up with a new idea; I would write my daily lists differently; I would write them backwards instead of forwards; I would write what I had done every day instead of what I should do.

Monday:
– paid all of the bills
– communed with dogs
– did all folding and put a load of washing on
– cleaned kitchen meticulously
– made a cake!
– saw Anthony from 1 – 4.30
– bought a bunch of coriander for the first time in my life
– made a curry from scratch
– washed hair
– communed with birds
– watched a show with Ming
– began reading a library book

To have done even some of the things I had listed as to-do for weeks (but not done), catapulted me out of my fug and into a fantastically different way of seeing each day. Now, with my listful notebook always handy, I list every single little thing I do on every single day – everything from washing my hair to planting strawberries; everything from poaching eggs to making friends with a new resident at the nursing home; everything from catching up with long-lost relatives to picking camellias for Anthony’s room.

This new listful method has also evolved into a better daily routine whereby I am in the nursing home every afternoon, seeing Anthony, doing the volunteering, seeing Anthony again and usually getting home by 6pm.

It is so wonderful to NOT be listless!

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Volunteering 2

Ev, the Events Coordinator at Anthony’s nursing home, doesn’t work on the weekends usually, so I asked her if I could do some of my volunteer work in the Dementia wing and she said yes! She told me that they have activities between 3 and 6pm and I could join in any time, so today I had my first taste of what this would be like. I knocked on the main door (it’s a locked section) and I got a nice surprise when the staff member who opened the door was Jill, who I already know because she brings three women residents for a walk around the nursing home every day at about 3pm and they pass by Anthony’s room where we all exchange waves and hellos. Once I explained I was now a volunteer, she was delighted and asked me to come for the walk. I was thrilled.

Jill always holds 91-year-old Wilma’s hand as they walk; Beryl (80s) usually walks by herself; and Meg (80s) holds her daughter, Cheryl’s hand. All three women residents are extremely mobile, cheerful and vocal (including singing as they walk) and all three also have dementia. Towards the end of the walk, Beryl put her left hand lightly around my right elbow and I felt a pang of joy as she asked me again what my name was. Back in the dementia wing, we all sat outside in a lovely patio and Jill organised some memory games. At 4pm, my hour was up so I excused myself and thanked the staff and residents for having me. Beryl squeezed my hand and said goodbye.

On the way back to Anthony’s section of the nursing home, I felt a sense of happy nostalgia for the years I worked in nursing homes, the years I wrote about dementia in my PhD and a subsequent book. I also felt a bit of melancholy nostalgia for the years of writing during which Anthony would help me fine-tune my argument which was about the importance of listening to, and conversing with, people with dementia, regardless of how the conversation might meander between memory, fantasy, lucidity, sense and nonsense.

It was amazing today to see staff and residents so compatible and cheerful but what really got to me was the mutual respect shown. I worked in several nursing homes in the late 1980s to 1990s and I never once saw what I saw today: staff and residents having fun together in a prolonged way!

Rushing into Anthony’s room so I could tell him all about it, I found him still asleep in his chair the way I’d left him an hour previous. I sat down in the chair I always position next to his and put a favourite DVD of ours into the player I only bought a few days ago The IT Crowd. Ants kept sleeping while I watched a few episodes but, every time I guffawed, he would open his eyes and smile, then tell me to turn the hoses off.

[To blog-friends, I’ve decided to post on weekends and do comments and read blogs during week now. I feel a bit out of touch!]

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Volunteering 1

It has taken several weeks to sort out the red tape of me volunteering at Anthony’s nursing home. Okay, let me explain: I will now get paid a small allowance if I do 15 hours of volunteer work per week at a not-for-profit organization.

As it happens, Anthony’s nursing home is not-for-profit so last week the Events Coordinator, Ev, showed me the ropes and suggested things like playing cards with Nat, an 83-year-old woman with Parkinson’s Disease and numerous other afflictions, who is in a wheelchair. Then Ev said, “You can always bring Anthony to sit and watch.” My heart did a somersault.

Well, since I already know Nat, it wasn’t exactly difficult to break the ice on Monday, but I was still nervous. I got to the nursing home before noon and helped Ants with his lunch and explained the volunteer thing then I left my bag and scarf in his room, so he would know I was coming back. Then I went to find Ev who wheeled Nat up to the dining room so we could sit at a table for the most complicated card game I have ever played! [more about that tomorrow]

Nat: At a loose end are you, love?
Me: No! I’ve become a volunteer here and you are my first victim, Nat.

Nat cracked up laughing. She is quite famous for her huge, loud, beautiful laugh. Then she said, “Go and get Anthony.”

So I did.

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My second home

Anthony

In my last post, I wrote a bit about how, instead of taking Anthony out for drives or bringing him home for the day, I have begun to make myself home in his room in the nursing home. For those who don’t know, Ants has advanced Parkinson’s disease with encroaching dementia, advanced prostate cancer and several other conditions. He is 78 and has been in the nursing home for nearly two and a half years. I have already blogged about the heartbreak of that mutual decision, and written about the ongoing ups and downs since then.

Several weeks ago, I realized that I had to stop getting Anthony up and out, and back home, and visiting friends and relatives, and going to restaurants etc. because I could no longer lift him in and out of the car, wheelchair etc. Well I could actually, but the physical strain and emotional stress of all of this maneuvering was taxing for both of us, and Ming too of course.

You see, all of the above jobs were infused with a panicky anxiety. Will the pills work today? What if I can’t get Ants to the toilet in time? Will he try to walk around the farm/restaurant and fall again? What if I have to get the ambulance out to the farm? Will he be too cold and insist that every heater is on? Will Ming cope? Will I cope? Will Anthony cope with going back to the nursing home after being out and about? Will there be more tears than we have already cried?

So, almost as an experiment I guess, I began to spend more time in the nursing home, something I couldn’t have done even a year ago – too boring, too sad, too scary, too confined, too uncertain – I hated it. But gradually, over many weeks now, this has become the norm and the fact that I am spending several hours a day with Ants in the nursing home means that he is no longer so desperate to come home and often, by late afternoon, he thinks he is home.

I keep long-lasting stuff, wine and snacks in one of Anthony’s cupboards, bring a favourite food every day (blue cheese, chocolate, olives etc.) and sometimes it’s a little bit like a party. If the heater isn’t on, I turn it on, put a blanket on Anthony’s legs and do up his jacket up (he is always cold). Then I turn the television on to whatever our program is for the day (Master Chef, Midsomer Murders, Neighours). During the commercial breaks, I mute the TV so we can talk but lately Ants is having a bit of trouble with speech so I have to help a bit. Yesterday he couldn’t get the sentence he wanted to say out so I told him I could read his mind and not to worry. And I can read his mind.

But then his words came out:

ANTS: You make me nervous, Jules.
ME: Why?
ANTS: I’ve fallen in love with you again.
ME: Hell, Ants, we’ve already done that!

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‘At home’

It is several weeks now since I began the routine of making myself at home in Anthony’s room at the nursing home. Sometimes I am there from noon to 5pm, but mostly from 2-5pm. The fact that I am always there at sundown has been a plus, and sometimes Ants thinks he is at home. My mother visits him at least once a week and told me that I had made a little ‘Bythorne’ there (that’s the name of our farm). I now write everything Anthony says to me in a notebook because I am fascinated at how someone with encroaching dementia can to-and-fro from past to present, from memory to imagination, from anxiety to exhilaration. But his grief when I leave to go home can be very upsetting because I have to explain that I am going back to Bythorne and he has to stay in the nursing home. Anthony doesn’t always understand this and thinks I am abandoning him so it is always a difficult ‘goodbye’ but I think I have figured out how to make it easier with a bit of banter – not sure yet.

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Smiling

This afternoon Anthony was, as is usual now, in his armchair in his room at the nursing home and a bit confused. I put the heater on, zipped up his jacket, put a rug from home on him and changed the TV station to “Neighbours”. Anthony’s hands were cold, so I took the heat bag my friend Jen made and microwaved it for 4 minutes in the kitchen (staff let me come and go from kitchen area now), took it back and put it on his lap, placed his hands on it and put the rug on top.

Anthony was really drowsy – has been all week – but at one point I was able to rouse him (by punching him gently in the shoulder). His eyes were blank until they met mine and I said, “Ants, I love you more than anyone in the world.” Suddenly my eyes filled up with tears.

There wasn’t much response so I tried again, more shoutingly, “Anthony, I just told you that I love you more than anyone in the world, and my eyes filled with tears, and you ignored me!”

Anthony looked into my wet eyes, and his drooping mouth (caused by Parkinson’s disease) curved upwards into a smile. I realize that doesn’t sound like much but to get a smile from this previously jovial person who is now so disabled, is a small miracle. The only thing that annoys me about this smiling scenario is that I have to work very hard to get a smile out of Anthony whereas Ming just has to walk into his room and shake his hand and – BINGO – Anthony smiles – grr!

I’m so grateful for the decades of smiling we did before smiling became an effort for Anthony – not because of sadness but because of how PD affects the muscles of the face. So nowadays I come into his room with a huge smile every single day.

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Routine to the rescue!

I have never been that crazy about routine. As a younger person I had a reputation for being a bit erratic, despite being a nurse and then a lecturer (jobs in which I was never late but always nearly late!) When Anthony went into the nursing home (nearly two and a half years ago), there was a lot of grief, confusion and uncertainty, but no routine.

Now we have a routine and my heart has stopped racing around anxiously. It is so simple and easy and I wonder why I didn’t do this before but I guess the new routine coincides with a noticeable deterioration in Anthony’s mobility and mind function.

For a couple of weeks now, I have been going into the nursing home for most of the afternoon. In Anthony’s bedside cupboard I have lots of snack foods and drinks, cup-a-soups, brandy, wine, chocolates and sometimes I bring fresh cheese and olives.

If the heater isn’t turned on I reach up and press the button, after kissing my husband hello. Then I put a blanket from home on Anthony’s legs, adjust the chair, change the TV station to something I want to watch, move my chair right next to his and hold his hand.

Sometimes (lately) Anthony says, “How do you always know where to find me?” Sometimes he can’t get the words out – they stumble and crouch, frustrated, just above his lips. Sometimes he drools into what we call ‘the dribble rag’ because his swallowing reflexes have slowed down. Sometimes he tries to squeeze my hand in his and there is a small smile.

So I am now in the nursing home with Ants from 2-5pm most days and sometimes from noon. Does this make me a caring-wife hero-type? No! I don’t even understand what has happened to me to make me all-of-a-sudden so attentive! I love him, of course but I hated going into the nursing home for awhile/off and on. Now I actually can’t wait for 2pm every single day.

This routine has really helped me cope.

PS. This new routine means I don’t have much time atm to follow, comment on other blogs but you are all on my radar.

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A new phase

I think Anthony has entered a new phase of Parkinson’s Disease just in the last week or so. Taking him for drives, or home for the morning or afternoon, or out to lunch, or to visit friends/family has all-of-a-sudden, it seems, become something we don’t do any more.

This new phase is partly due to a deterioration in Anthony’s physical mobility, and his current sleepiness. The transition from Anthony and Julie gallivanting off for the day to Anthony and Julie sitting in his room at the nursing home, watching re-runs of Master Chef, has been strangely enjoyable for me.

Today I had to take Ming to town to get the bus to Perth at 8.45am so I thought I may as well go straight to the nursing home and spend the day there. After seeing Ming off, I found myself in an I-can’t-wait-to-see-Anthony-mood (a mood that is capturing me more and more).

So, for the first time ever, I spent the entire day at the nursing home (from 9am – 4pm). Partly, I did this as an experiment to see if I could cope. But my other reason was to see if Anthony would like me being with him in the nursing home rather than going out; he did! I will now plan all of my writing etc. to be done in the nursing home.

I’m not blogging as consistently as before – hope to catch up soon with blog friends.

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