jmgoyder

wings and things

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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Who are you and why are you so nasty?

I have a rather nasty taste in my mouth at the moment because I have been reading about some people’s taste for nastiness, or cyber-nastiness to be exact – well that’s what I call it anyway. A few moments ago I saw a lovely photo on Facebook (yes I am back on it!) of a black man reaching his hand out to a white baby.

I liked the photo and its caption and found it heart-warming. So I was surprised to read some very nasty comments and interchanges in response to the photo. Various critical points were made by some and phrased politely, but other people became quite hateful in their comments.

Lately I have been seeing more and more of this on the internet – people voicing nastiness with such ferocity it is breathtaking. Of course, with Facebook and WordPress and other social media sites, there are rules, but obviously this is almost impossible to monitor unless someone is being obscenely abusive.

The thing that most bothers me about this trend is the anonymity with which nasty comments, statements, opinions etc. are made. I read a couple of news feeds and often a human interest article will be attacked by certain readers and then readers will attack each other with no respect for the fact that we are all real people. Many of the nasty things written on social media sites would never be said face-to-face because in real-life, real-time situations, there is usually an expected decorum. Not so on the internet. Anybody can pretty much say anything they like to anybody else behind the safety of their computer or phone screen.

But why? Why do so many people expend so much time and energy on being nasty on the internet? I was the recipient of some rather nasty commentary on my friend’s blog the other day. The person commenting was not known to me so I was flummoxed by his passionate diatribe against my rather innocuous comment and he proceeded to crowd my friend’s post with long-winded speeches against me, and against my friend who rose to my defense. I responded a few times then gave up because I realized everything I said just seemed to fuel his irrational fury. I would love to recount the dialogue but respect my blogger friend’s privacy so suffice it to say that my initial comment had nothing to do with politics, race, gender or religion – ie. it was not an attackable comment!

The experience was a learning curve for me, so I am glad for it because it has made me even carefuller of my words than I already was – ha. But the main thing this experience showed me was what cyber-bullying might be like for a young person. One of the things this particular bully did was to make assumptions about me and to label me; when I didn’t immediately reply, he equated my silence with guilt; when I did reply, he launched another sermonesque attack. Even though I was astounded and felt extremely misunderstood, I wasn’t hurt – more bemused I guess.

But if I had been 12 or 15 or even in my 20s, I would have been profoundly hurt and affected. And this, I think, is what is so worrying about social media for our beautiful young people. If you read of cases of cyber-bullying and its effects on so many young people (including suicide), it is easy to brush this off as a passing phase, a bizarre incident, or ‘my kid isn’t on Fbook so s/he’s okay’.

I am not saying that my above experience was a case of cyber-bullying exactly. After all, I am an adult and I can take it. But if I had been a kid, I would have crumbled.

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When things go wrong

This morning, on our way to town, Ming and I had a ferocious argument, with him yelling and me shrieking and both of us swearing and me crying.

Our first stop was the chemist so I left Ming in the car, slammed the door, wiped my eyes and went in to get a few things with a big fake smile on my face. It took awhile for a couple of prescriptions to be filled so I went back to the car to find Ming with silent tears rolling down his cheeks. I got into the car and sobbed an apology which was reciprocated, then we just sat in silence for a few minutes, staring dully though the windscreen.

Then we began to talk:

Ming: There is something wrong with me. I’m ruining your life.
Me: There is nothing wrong with you and you are not ruining my life.
Ming: Then why does this keep happening?
Me: Because you keep losing your temper with me and I keep overreacting.
Ming: I just want to make things perfect and it never works.
Me: Yes, and that includes me?
Ming: Yes, well, no – I just want you to be happy.
Me: Well I just want you to be happy too. But you are a bully!
Ming: I think we should go back to counselling.
Me: I agree.
Ming: Sometimes when I wake up, I just want to go back to sleep.
Me: Same here.
Ming: I want to be a child again.
Me: So do I, sort of.
Ming: Am I really harder for you than Dad?
Me: Physically, no, mentally, yes – emotionally, about the same.
Ming: But I’m only trying to help.
Me: By nagging me, reprimanding me, trying to control me, yelling at me?
Ming: You said we’d leave today at 11am.
Me: So we left at 11.10am – was that a tragedy?
Ming: No, but you’re always letting me down – you never want to leave the house.
Me: I’m having a bad time with lethargy.
Ming: Same here.
Me: So we need a plan of attack. From now on we will make a daily plan for each day. We’ll do one chore together and one separately, schedule it into the day and allocate a definite time. Neither of us is allowed to renege or be late. We’ll write tomorrow’s plan tonight and sign it like a contract.
Ming: That’s what I’ve been saying for ages, Mum – teamwork!
Me: Okay, I don’t particularly like that word but yes, you are right.
Ming: Shake hands then?
Me: Okay.

We went on and did the rest of our town errands and got home smiling. I feel terrible about the horrible, cruelly sarcastic things I said to Ming, and for screaming at him like a psycho, and he feels terrible for his control-freaky temper, but maybe we had to have this crash in order to wake up.

I am hopeful.

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Doing ‘the right thing’ dilemmas

I was brought up well-versed in the art of turning the other cheek and, in principle, this is a rather useful art.

However, I think there comes a point where your cheeks become too raw and swollen and you know you have to stop the hands that keep slapping you.

When Anthony and I announced our engagement, nearly 20 years ago, it was met with various kinds of shock. We knew there might be shock; after all, he was a bachelor in his late 50s and I had just entered my 30s.

Almost without exception, our friends and family expressed delighted shock, but there were two people who didn’t and, even at our wedding, would not speak to us. Ants and I didn’t care at the time because we were on a newlywed high!

But, once the honeymoon was over, I had to learn, in increments, how to deal with these two people. Their bullying behaviour astounded me! It went on and on, year after year, even when Ants became so ill.

But it’s Anthony’s birthday party tomorrow and, as always, he said, “Do the right thing, Jules.”

So I made the phonecall and invited them. Just doing the right thing – ha!

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Bullying 2

I’ve been reading quite a bit about bullying lately, not just because it is a hot topic, and an enormous problem in cyberspace, but also because I’ve only just begun to realize, with the benefit of hindsight, its impact. I don’t usually like labels, but ‘bully’ is a very handy concept in that it enables you to put the bully/bullies into a kind of metaphorical ‘bully box’ and toss them away.

Now, obviously, bullying is not a new problem, but it seems to have been talked about much more over the last 12 years or so. There is very little I can add to this burgeoning discourse. I am more interested in the characteristics of a bully and in trying to figure out why a bully is a bully. I’m also curious about whether a bully can change. As is probably obvious, I am fascinated by this topic.

Characteristics of a bully (including possible reasons for the bullying personality):

  • Often bullies have poor communications skills, so use shouting and swearing to get a point across.
  • Typically, bullies will be devoid of empathy and may not even understand the meaning of the word.
  • Bullies may use the following tactics: invasion (arriving aggressively on your doorstep unexpectedly); coercion (the surprise attack method of getting you to do something); complaint (to make you think you are in the wrong); charm (pretense of friendliness to get something from you); and/or inane smalltalk (to bore you into submission).
  • Interestingly, bullies may never have been bullied themselves but, instead, may have been over-indulged children who have learned that tantrums work.
  • Many bullies show a ghoulish interest in real-life crime and horror, enjoy playing cruel practical jokes, and may even inflict physical harm to animals or humans.
  • Bullies are often irrational, dishonest and lacking in emotional intelligence.
  • Often, bullies are flamboyant, attractive, ‘larger-than-life’ and sometimes even popular (in a party context).
  • Some bullies are preoccupied with wealth and may be ‘sycophantish’ towards anyone who is wealthier.
  • Most bullies do not have any idea of what a conscience is.
  • Bullies are often very miserable people.

Tips on how to deal with a bullies (this is what I’ve done and it’s worked):

  • Recognize the bullies as bullies
  • Say ‘no’ to the bullies. Ask them to leave you alone and, if they don’t, seek professional support.
  • Put the bullies into the metaphorical ‘bully box’, toss them away and then forget about them.
  • Forgive their ignorance.
  • Forgive them for hurting the people you love most in the world (that’s a difficult one!)

Then SMILE!!!

Note: These are just my own thoughts on the bullying issue, gleaned from my own experience. I do hope, however, that some of this might be helpful to others.

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Bullying

No words.

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Love story 107 – Canny confusion

This afternoon, when I visited Anthony in the nursing lodge, he was confused in some ways and canny in other ways.

“You said you were coming earlier.” CANNY because I was a bit late.

“There was a wedding here this morning – awful people.” CONFUSED

“So who owns Bythorne now?” CONFUSED AND CANNY

“Is he trying to take it again?”CANNY because he remembers some of the horrible family stuff that happened when we got married.

“So where am I now?” CONFUSED

I haven’t seen Anthony this confused before. He even thought his beautiful older brothers, now deceased, were helping Ming and me out on the farm. But the thing that struck me most was his anxiety about another relative who had been such a bully that we had to banish him. That was the best thing we ever did, but the fact that Anthony is still worried about this and worried about me, and that his memories are so lucid about a situation that is long gone, disturbs me and breaks my heart.

As Anthony’s PDD (Parkinson’s Disease Dementia) progresses, will his memories of the bully dominate or will his memories of our blissful little family dominate? I don’t want him to be afraid and confused like this. I don’t want him to remember horrible stuff.

In my new Godzilla mode, I want to smash those horrible memories to pieces; they are now beginning to splinter into Anthony’s mind in such a disturbing way. Why else would he have asked the same questions again and again?

“So who owns Bythorne now?”

“Is he trying to take it again?”

My answers:

“You own Bythorne.”

“Not a chance in hell!”

Yes, I am a little angry.

60 Comments »

Godzilla

It is the beginning of my third day of being Godzilla since my tranformation on Sunday night and I am gaining a whole new perspective from my great height. One of the interesting things I’ve realized is that I have never been the boss here. It has been an old-fashioned sort of marriage with Anthony making all of the decisions to do with the house, garden, farm etc. Mostly this was fine with me and I deferred to him because (a) he was an older man; (b) I married into an already established home; and (c) I didn’t mind or care about the garden and house decisions.

Don’t get me wrong. Ants was never bossy or overbearing; it’s just that as a retired dairy farmer, he naturally took responsibility for all the home stuff and I went out to work and pursued my academic career. But now, when I look back, I see that I did not make any of the decisions. He did. For example, I couldn’t simply ring up and get someone to help us repair a pump or a fence or an electrical fault. This was always Anthony’s territory. Occasionally this would drive me mad and we would argue, but not often. Usually I would just give up and leave it to him.

On the other hand, we did make some decisions together – a new mirror, carpet, a car, new tiles for the kitchen, Christmas presents for Ming, and we had enormous fun doing so, but the final word was always Anthony’s. He was the boss. I was under the thumb, but the thing is, you see, I didn’t mind and anyway I was preoccupied with my teaching job and my writing.

As his health began to deteriorate dramatically (nearly 5 years ago), I wanted to buy a ride-on lawnmower to make it easier but he wouldn’t let me and that was that. I wanted to get reticulation but he wouldn’t let me and that was that. Many of my female friends were amazed at my lack of assertiveness and autonomy; after all Anthony was never dictatorial or bullying or nasty – it’s just that the power was his from the outset I guess and so I have never felt any sense of ownership in terms of this home that I love, this farm that I love. In fact all of my toiletries are still in a travel bag under the sink in the bathroom; I have never unpacked them!

Blip ahead to now (8 months since Ants went into the nursing lodge and 7 months since Ming’s scoliosis operation), the dynamics shifted subteley and I found myself under someone else’s thumb – Ming’s. Initially, I was so proud of him for taking on this role of ‘man of the house’, and he took the reins of control with alacrity. But several weeks ago, this arrangement began to fall apart – his bossiness exhausted me, and the bossier he became the more defeated I became. To top it off, my sorrow about Anthony kept clashing with Ming’s anger about Anthony and we began to avoid each other.

Of course there is a lot more to this but on Sunday it all came to a head and I finally realized I was actually being bullied, and I drew the line and took back a control that I never had in the first place. For a kid who is unfamiliar with the word ‘No’ this has been an interesting transition, so we are both experiencing brand new roles and it is rather wonderful! I love being the boss and today I have a lawnmowing man and his son out here getting the place back into shape and teaching Ming how to do stuff and I orchestrated it, I made the decision – me!

Even Godfrey, the Godzilla of ganderdom, has a new respect for me. Yeeha!

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Anti-bullying tactics

1. Identify the bully [this is Godfrey, the godfather of ganderdom].

2. Contemplate what to do with the bully situation [Bubble and Baby Turkey contemplating Godfrey].

3. Plan out a strategy.

4. Walk away from the bully.

5. Attack the bully if need be [Baby Turkey attacking Godfrey, with Bubble supervising so that Godfrey doesn’t get hurt, but is taught a lesson].

6. Turn the other cheek [Woodroffe and Diamond demonstrating this].

7. Ignore the bully and leave him next to the rubbish bins for at least one hour!

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