jmgoyder

wings and things

Miscellaneous

One of the things I have had to do in all of the recent decluttering is to toss some things into a miscellaneous box to be figured out at a later date. Despite the fact that this box is getting rather full it is good to know that I have one place to put anything that I don’t recognise. I will hold the object out to Dina and say, “Do you know what this is?” (Usually it’s some sort of ancient tool – an artefact from Anthony’s past). If neither of us can figure it out, it goes into the miscellaneous box – perfect. Then it’s over to ‘the Ming’.

I thought it might be quite fitting to write a bit of a miscellaneous post, having discovered that ‘miscellaneous’ is a definite, and quite acceptable, category. So here goes:

Most of the grapes are ripe now and I can just pick them and eat them whenever I go outside. I think it’s just the one vine and the wild birds get to them as fast as I can so there is almost no point picking them. They grow just outside the back door and I’m not sure if Anthony planted them or if they were there before the family came here.

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The figs are nearly finished for the year as the heat is getting the better of them – and the butcher birds (which Gar, Anthony’s mother, used to hate). Last year I just let most of them fall of the tree and frizzle in the sun but this year I have given many bags away to friends, family, the local pub, the restaurant where Ming works (my mother and I went there today for lunch and the fig and coconut muffins were a hit), neighbours etc. I have also eaten quite a few with Ants in the nursing home. I also went to another restaurant and asked if they wanted figs and they said YES and I asked what I would get in exchange, suggesting a lunch voucher and they said yes to that too, though a little less enthusiastically.

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After lunch with my mother today I went in to the nursing home to spend some time with Ants before my 3 – 7pm shift in the dementia house. I had my camera with me so took some photos through his window of the outlook from his room. This garden area – one of many – is where he often ‘sees’ calves and often asks me to go out and check if they are all okay, which of course I always do and the calves are always okay.

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Periodically, I rearrange or change the pictures on his walls. The photo of younger Anthony has pride of place very high on one wall where there happened to be a hook and he rather likes looking up at himself!

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Me: You really like looking at yourself don’t you! Such vanity, Ants.

Ants: Men need to love themselves.

Me: Why?

Ants: In case nobody else does.

Okay I am kind of cheating here as the above conversation happened over a year ago. Ants doesn’t articulate so well anymore but he sure as hell likes looking at the photo and so do I. It kind of pulls us both into the time warp of when we first met.

Then there is the oil painting of cattle that I commissioned from an artist friend years ago; a calendar my mother made of moments/months in our lives (e.g.. Ming recovering from his first spinal surgery); and one of the few photos of Anthony and his mother in her latter years, that I had framed for him once upon a time.

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Then I took a picture of the rose plant I gave Ants not long ago. Everybody has remarked on their blooms and many people, including Anthony, thought they were real until I finally had to own up to the fact that they were VERY expensive fake roses made of silk. Some people are still fooled though, especially when I spray them with rose perfume – haha!

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Well now that all of the ancient rose trees on the driveway of the farm are either dead or dying, the fake rose tree seemed like a good idea. In my defence, I am hopeless at gardening and every time I water something the pump makes the electricity bill soar!

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Just before 3pm, after watching Judging Amy with Ants, I went into his bathroom and quickly changed out of my t-shirt into my new uniform, put my name tag on and explained I was going to work. He always only remembers a bit of this new situation so I have to explain again that I am not going somewhere else but will be working just next door and that I might be able to see him a couple of times during my shift. This reassures him and whenever he gets anxious I just tease and tickle him into his new half-smile and all is well.

This afternoon it was a bit too humid to take many people for a walk outside or through the complex and it wasn’t until I took a teary S for a wheelchair walk that I saw Ants again (just as I saw many of the people in the high-care section as S and I did a lap of the gardens and hallways).

S. Who’s that old chap?

Me: My husband.

S. Not bad-looking!

Me: Keep your hands off him, S!

S. (chuckling and sticking her tongue out at me) All right.

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Miscellaneous….

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Silence

Lately I haven’t felt like reading or writing anything much. Despite this temporary aversion to words, I have plodded in and out of other people’s blogs and/or Facebook posts and have begun copy/pasting bits of my own blog into a possible book about Anthony and Parkinson’s disease but the initial buzz of this latest project has abated to a low hum. I know that this is worthwhile so will continue but re-reading the bits and pieces of posts I have written over the last three years of our unwilling venture into the landscape of Parkinson’s disease and dementia seems to have rendered me wordless. I draw enormous encouragement and inspiration from other people’s words but have become sick and tired of my own wilting voice.

The strangest thing about my own silence has been in acknowledging other people’s silence, especially those with dementia with whom I interact at the nursing home in my new part-time job as ‘lifestyle assistant’. Initially (a few weeks ago) I accompanied the wheelchair walks with my loud voice – admiring flowers, pictures on walls, the automatic door, the delicious smells coming from the kitchen etc. But, over the last couple of days, I wheeled various women around the gardens of the nursing home property in silence – just listening to whatever they had to say or, if the person were unable to speak, I shut up too. The unbusy silence of these short journeys seemed somehow wrong at first but I now see how my silence allows whoever is in the wheelchair to smell the roses, see the pictures, hear the greetings of staff, touch the hands or shoulders of other residents, and converse with everyone we come across.

I have never loved a job as much as I love this job, but some of the lessons learned, via the different kinds of emotional suffering people with dementia endure, leave me speechless. Touch has become much more important than words and, even though I am a huggy person, hand massages aren’t really my forte but these really work in calming some people down.

Now that Anthony has entered this dementia phase of Parkinson’s, I am learning once again how to listen better, how to shut up, and how to be comfortable with silence. I really believe in this silence thing now but am not sure. I know that with Ants my silent presence in his room, or wheelchair walking around the grounds, frees him from the responsibility of conversation now that he has kind of lost track of language.

Anyway, perhaps, sometimes, silence IS golden.

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Up hill and down dale

One of the things I do during my afternoon shifts at the nursing home is to take wheelchair-bound residents for a ‘stroll’ around the grounds or, if it’s too hot, through the facility, or both. Until I got this job, and before volunteering, I wasn’t familiar with the layout but now I am; there are four ‘houses’ each with its own name, but all almost identical in design (kitchen and dining room in the centre, living rooms x 2, patio area and garden, and bedrooms all private and each with an ensuite, at the opposite ends of a hallway.)

Anthony is in the ‘high care’ section at the centre of the facility and this is more hospital-like in terms of design.

The ‘Dementia house’ (obviously not called that, and named after a significant person, but, for the sake of privacy, let’s call it ‘The Lodge’) has ten permanent residents, all women, most of whom are mobile but three of whom require wheelchairs to go any distance. I absolutely LOVE going for a walk with these beautiful women up and around the curves and corners and small hills of this facility, inside and outside, down hallways, through gardens, into other ‘houses’ to visit.

I only do a few short shifts per week (3-6pm) and the job description is “Lifestyle assistant” so am still learning how to be more creative with activities, games (not my forte!) But what an absolutely WONDERFUL job! To be able to socialise, converse, have fun with people who have dementia. The thing I like to do most is going for a walk and sometimes this is hilariously rewarding like the time I took Suzie past Anthony’s room, and we waved (even after just a couple of weeks, Ants has come to expect this and waves back), and Suzie said to me, “Poor old bastard”.

I retorted: “That’s my husband, Suzie!”
“Oh sorry,” she said, chortling with mirth.

Okay, back to the up hill reference: Fiona is heavy and wheel-chair bound so I get a bit terrified now because the other day, as we were going UP the driveway, her wheelchair decided that DOWN might be better and I briefly lost control and we landed gently into a rosebush, unharmed. Fiona, who constantly hums a refrain of a hymn I am yet to recognise, giggled, sitting regally in her wheelchair while I struggled with thorns.

All names have been changed to protect the privacy of these people with the exception of my beautiful husband, Anthony, who, when I was wheeling someone past his room the other day and waving as we always do, called out, “You’re getting faster, Jules!”

But, by the time I am finished my shift and go back to Anthony, he is so confused and sleepy that saying goodbye isn’t difficult because it is now possible to comfort him with “I am just going up to the shop to get some bread.”

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The Anthony book

A few months ago a professor friend of mine – an historian, prolific writer and a colleague from my recent university days – suggested that I might write a book about Parkinson’s Disease framed around the blog and my experiences with Anthony. The professor said that he would be happy to read whatever I wrote and that he would give me feedback.

At the time of his visit, I was buoyant with the discovery that I now looked forward to, and enjoyed, my visits to the nursing home, and was able to spend many hours of the day there.

Since then I have begun to copy/paste various bits and pieces from posts I have written since November 2011 into a document that journals the various transitions Anthony, Ming and I have made since Anthony’s permanent admission to the nursing home in early 2012, nearly three years ago.

One of the most significant things I have discovered since perusing my blog is that I would never have remembered the sequence of events, the emotional turmoils, or the ways we coped, if not for the blog.

So now, on the brink of a brand new year, I’ve decided to write the book and report progress via the blog (as an incentive!) on a daily basis. Or something like that!

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Mischief

Anthony: I’m in constant pain.

Me: What? Since when? Where is the pain? Oh my God, I’m so sorry, Ants – you never told me this before!

Anthony: Oh, these things (stretching his arms out), and these other instruments (stretching his legs out in a rather swaggery way).

Me: What kind of pain is it?

Anthony: Agony.

Me: Well why the hell didn’t you tell me this before? I’ll ring the doctor! For God’s sake, Ants, I’ve been telling everyone for ages now that the best thing about your situation is that you are not in physical pain, and now you tell me this!

Anthony: Um… (beginning to do his half-smile)….

Me: So you are kidding? Joking?

Anthony: Just stirring you up, Jules

Me: You want pain? I’ll give you pain! (We have an arm wrestle on the side of his armchair and I win.)

He is so tired that his eyes weep; my laughter is raucous and I apologize but he says he loves my cackle; I leave to come home and he says, unsadly, see you tomorrow.

If Anthony were in physical pain, we would not be able to cope the way we are coping now.

And if Anthony didn’t have his mischievous sense of humor, everything would be horrible. Okay, so everything isn’t wonderful but it is definitely not horrible with Ants in the picture.

(I have learned how to make chili hot chocolate, which Anthony loves, so I might put an extra chili into the mix tomorrow – ha!)

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Holiday

Ever since I began blogging, in November, 2011 (I had to go back to find this!) I have been amazed by the generosity of strangers, the friendships formed by commonalities, and the understanding when certain bloggers, like myself, just can’t keep up with those amazing, yet tenuous, friendships.

The fact that WordPress has gone a bit AWOL in terms of this blog (yes, I have contacted the Happiness engineer people) has actually given me time to reflect on what I really want to do here, on this blog:

1. Reading: Keep in better touch with blog friends, but don’t feel guilty if you can’t.
2. Writing: KISS (keep-it-simple-stupid!) – also, keep it short.
3. Photography: Learn from others.
4. Personal: If you are having a difficult time with the whole life thing, and you can’t blog, that is absolutely fine.

I so appreciate all of the blog support I have received from friends, relatives, bloggers and family, but I just cannot keep up at the moment and feeling bad not to have even answered comments! So yet another blog break is in order, so I can spend more time with Anthony and write my soon-to-be famous novel ha!

Nothing dramatic – just a little blog holiday.

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Blog email notification mystery

For some reason I am no longer receiving any blog notifications via email. This means that I will need to go to the Reader to catch up I think. Have any other bloggers been encountering this problem? In the meantime, it is going to take me awhile to catch up on blog friends’ posts.

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Blog blessings

I began blogging in November 2011, with no clear intention other than to write something every day, which I have for the most part. The subject matter meandered from birds to Anthony’s Parkinson’s disease, to Ming’s teenage-hood and scoliosis, to our personal struggles. I dabbled in novel and romance writing, briefly promoted my book about Alzheimer’s disease, attempted some poetry, began to write about Anthony’s and my love story, posted pictures, and generally wrote a whole lot of this-and-that.

In view of the miscellaneousness of my posts, I suppose “Wings and Things” isn’t a bad sort of blog title so I’m sticking with that because it allows me to meander in the usual way. This is obviously not good for the stats as themed blogs get more ‘hits’ but, despite wanting to make more people aware dementia sufferers should be treated with more respect, I don’t care any more about the stats.

One of the things that has astounded me about my blog journey so far has been the incredible friendships wrought (with people I may never meet in person), and the mutual support system enabled via WordPress. The blogs I subscribe to are an eclectic mix of bird, photography, illness, writing, grief, dementia and philosophical blogs (to name a few) and it is often very difficult to keep up. The good thing is that most bloggers understand this difficulty and don’t mind if you don’t read their every word/post – phew!

I would never go to a support group, I already have enough friends in my non-blog life, and I am not naturally gregarious, so I am rather astounded at how much I have come to depend on the bloggers with whom I have become close – an extraordinary community made up of some of the kindest people I have ever come across. I also enjoy offering my own friendship and support to these fellow bloggers and this has become a meaningful part of my life.

This blog has also connected me better to my already-there friends and family, sometimes disconcertingly. For example, I said to my friend the other day, “Guess what happened yesterday?” and she said, “I already know, Jules – I read your blog.”

Oh!

So, in the spirit of miscellaneous gratitude, here is Diamond, our shyest goose….

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…. saying thank you with me!

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Another little blog break

One of the unexpected bonuses of blogging for me has been the very real friendships formed, the mutual support, the shared humour, the shared grief. The lessons of life that I have learned through other people’s stories, and interactions, have taught me how to better do empathy and sympathy, and forced me to feel the difference.

Thanks so much for those of you who have commented, ‘liked’, and given me your friendships. For those of you who are bloggers, I am struggling at the moment to keep up with your writings, so please forgive me for that. For Facebook friends, same thing really!

Ming goes to court in three days. Apparently he and I simply appear, his charges will be read out, and the case will be adjourned by our lawyer until the end of February. So I really need to concentrate on all of this at least until the beginning of February, and blogging will go on the back burner for the time being.

Hard to believe now that when I began blogging it was all about the birds.

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A tip for taking people with Parkinson’s disease out and about

As Anthony’s Parkinson’s disease (diagnosed several years ago now) has worsened, it has become increasingly difficult to take him out, or bring him home from the nursing home. For a few months last year, I relied on the wheelchair taxi because he had become so heavy to manouevre. Then, with some tweaking of his medications (by his specialists and doctors) and with a renewed sense of determination on my part, and special attention to timing, I began again to take him out by myself.

The timing of Parkinson’s disease medications is vital. If Anthony doesn’t get his 11am pill, he is paralysed by noon. The staff at the nursing home have been brilliant at getting this right. This means that if I pick him up for lunch he is able to walk (using a walker) to the car, get in with just a bit of a shove from me, get out again with a 1, 2, 3 pull up from me, walk into a cafe or whatever, eat some cake, and walk (using the walker again) back to the car.

His next scheduled pill for the day is 4pm but I really think it should be 3pm because that is the time that he always begins to falter, with his words, movements etc. so, if he is home, I give it to him early because we have had some extremely difficult situations where I just cannot get him to move his feet at all, let alone walk. I guess we are getting to the stage now where I have to bring both the walker and a wheelchair with us if we go out.

The person who most inspired me to take Anthony out more is Terry at http://terry1954.wordpress.com/

Terry has been looking after her brother, Al for years and Al doesn’t just have PD, he also has MSA (see Terry’s blog for what this is like). Al is now bedridden and on the brink of death with Terry constantly by his side. She has always inspired me in the way she copes with pragmatism and prayer in equal amounts.

But, before Al reached this stage, Terry used to to take him out and about, to his favourite shops and restaurants. I read about these escapades with mixture of delight and admiration, but what really struck me was how much joy this gave Terry herself. She is the person who gave me the impetus to take Anthony out and about more.

And, if I get the timing right, Ants and I can still have a rollicking time (well sort of!) However, here is where Terry and I are different; she took Al to places Al liked to go to (she is unselfish), whereas I now take Anthony to places I like to go (I am selfish).

However, that is my tip: instead of seeing it as a chore to take someone with PD or any other disease out of the nursing home for a bit of a break, think of where YOU would like to go. That way, the outing is transformed from a job into a joy.

Just don’t go to the beach (wheelchairs don’t do well on sand!)

This post is dedicated to Terry and Al.

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