jmgoyder

wings and things

Jun 28

Purpose

by jmgoyder

I have a new sense of purpose, having returned from the Happiness and its Causes conference in Sydney. Ming and I delivered a talk entitled “Dementia Dialogues” in which we described our experience of Anthony’s Dementia. I have already written about this on Facebook so will not repeat myself here.

The conference experience was both fascinating and enriching with an eclectic mix of scientific and experiential approaches to happiness. Kindness (both to others and ourselves), generosity and gratitude were recurring themes and Ming and I learned so much.

One of the best outcomes for me was the sense of purpose I now have in terms of writing the book I have been trying to write for so long, but didn’t know where to start. In preparing notes for our talk, I had unwittingly created a loose framework for this book and, since I only had time to convey some of the points Ming and I wanted to make, those notes are a great incentive.

My plan is to write a short-ish book, with very short, easily digestible chapters, about the strange and wonderful conversations I share with Anthony, Ming, carers, relatives and friends. In this sense I think that the title “Dementia Dialogues” will work and I plan to pitch it to Penguin publishers.

Instead of a rather vague sense of purpose, I now think I have something more concrete and this blog is a great platform from which to test my ideas. I’ll try to limit chapter drafts to 500 words and post on the blog from July 1st – hopefully two per week.

Several weeks ago, I told Anthony I wanted to write a book about him and he said “No”. When I asked why, he said something so interesting, but so poignant, that I was taken aback.

“Because I don’t exist,” he answered, cryptically.

At the time, I reassured him, of course, but I didn’t have that sense of purpose I have now; I didn’t have the right words, even for myself.

You do exist, Ants, and our ongoing story is my purpose.

Alzheimer's Disease; Dementia Anthony blogging death death and dying dementia depression Family Happiness Humour joy laughter LOVE STORY nursing homes Parkinson's disease Parkinson's disease dementia PURPOSE Wings

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Jun 19

Magnificent

by jmgoyder

I am spending as much time with Anthony as possible before Ming and I go to Sydney for five days. Yes, anyone would think we were going to the moon for a year but I do worry, mainly because I was unable to visit Anthony for so long when I was in hospital. I know my mother will visit him every day (she is absolutely wonderful) but there is something quite visceral about the way he misses me that has nothing whatsoever to do with cognition.

It is more to do with the passing of time; the longer the gaps between my visits, the more he suffers the unspoken pain of simply missing me – just my presence.

Today, I stayed with Anthony for hours, feeding him his lunch in the common dining room where he often is now; taking him back to his room to half-watch Dr Phil, Master Chef and Judge Judy; him listening speechlessly to the rapid pace of the conversation I had with my mother when she visited; looking bewildered as I left, until I promised to bring more chocolate.

At one point (it was probably one of Judge Judy’s calmer moments), I said, “This is great, isn’t it, Ants.” I had purposefully put my hand between both of his, then tucked them under his knee rug.

“Magnificent” he said.

Alzheimer's Disease; Dementia Anthony blogging death death and dying Family Grief Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

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Jun 14

Happiness

by jmgoyder

In just over a week, Ming and I are off to Sydney to speak at a conference. Check out the link!

Home

The title of our talk is – yes, you guessed it – “Dementia Dialogues”. I am hoping to convince the audience that it is still sometimes possible to derive, and give, great joy within the context of Dementia. Ming and I are simply going to cite a few examples of the funny and poignant conversations we share with Anthony. We only have a 15-minute slot, so our talk has to be succinct, a bit like a TED talk I guess.

I emphasised the word “sometimes” above because I am well aware that our own experience of Anthony’s Dementia is not necessarily like other people’s and I recognise how lucky we are to have a husband/father who is so resilient. The other day, when I got to the nursing home earlier than usual, and was able to feed Anthony his breakfast in bed, I asked him if he was comfortable and he whispered a booming “EXTREMELY!”

Anthony’s sanguine nature is a wonderful ‘plus’ when it comes to Dementia but every single person who has Dementia is just as individual as those of us without Dementia. Now that I am involved in support groups for carers, I have heard a fair few horror stories and I do remember our own horror story before Anthony’s admission to the nursing home. So I guess another point I want to emphasise in our conference talk is that the idea of placing a loved one in a nursing home needn’t be a tragedy.

I haven’t blogged for so long that now I’m rambling – ha! It’s good to get the words out. Now I just have to prepare for the conference – yikes!

 

 

 

 

Alzheimer's Disease; Dementia Anthony Australia blogging death death and dying depression Grief Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia Western Australia Wings

30 Comments »
Apr 20

The dream

by jmgoyder

I have various versions of the same dream about once a week. It’s always some sort of party, or wedding, or get-together but the venues change from dream to dream. The ‘characters’ in these dreams usually include old friends, close relatives and always Ming, but he is often either a baby or child.

In each of these weekly dreams, Anthony is extremely incapacitated and in a wheelchair; the destination is hours away from the safety of the nursing home; and it’s only when we get there that I realise I have forgotten his medications for Parkinson’s Disease (the timing of which is vital).

So, in each of the dreams, I am either searching my handbag for a stray pill, or trying to decide whether to drive all the way back to the nursing home. I am totally panicked and trying to figure out who can help me get Anthony from his wheelchair out to the car, but people are milling around him, happy to see him but concerned about him being in a wheelchair etc.

Because this is a dream I am, of course, leaping tall buildings and smashing windows and unlocking safes in my frantic search for Anthony’s pills – all to no avail. So I get back to the party, or whatever it is, and am relieved to see that Ants isn’t slumped too badly in his wheelchair. I rush to him and kneel, apologising for forgetting his medications and all of a sudden he gets up and is fine – robust, loud, laughing and hugging me as if the whole thing was some sort of bizarre practical joke. The relief that washes over me in the dream is so wonderful that it wakes me up.

So, when I wake up, it takes me about a minute to get my bearings and realise it was a dream but it never makes me sad. Instead, this recurring dream gives me enormous joy because it reminds me in so many ways how fantastic our life together has been.

I hope I get that dream again tonight.

Alzheimer's Disease; Dementia Anthony Australia babies death death and dying depression Embarrassing moments Family Friendship Gossip Grief hallucinations Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Teenagers

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Mar 21

Absence makes the heart grow fonder

by jmgoyder

I have been fluey for over a week now so haven’t seen Ants except for a quick visit on a day I thought I wasn’t fluey. But it seems to be a bit of a boomerang flu that keeps coming back so I have been staying away from the nursing home just in case it’s contagious and also because I am tired.

It is so, so, so hard not to visit him because I wonder how he is, mentally and emotionally. I already know that he misses me when I don’t come in for several days (like lately) and he seems to feel my absence in a visceral way. Sometimes he will say things to me like:

  • you abandoned me
  • who is your boyfriend?

And I am always too flabbergasted to give a coherent answer, which makes me look and feel guilty even though I am innocent!

Some staff members have told me that Anthony is particularly difficult to put to bed if he hasn’t seen me for awhile. This is so unbearable for me to imagine. I can’t ring him because he forgot how to answer a phone years ago.

I just rang the nursing home to give Ants a message that I will be in tomorrow and spoke to a beautiful nurse who said she would relay the message. But the burden of guilt is still terrible for me – terrible – and I think many carers of loved ones with whom they have been separated, due to the nursing home decision, feel the same.

See you tomorrow, Ants!

 

 

 

Alzheimer's Disease; Dementia Anthony blogging death death and dying depression Family Friendship Gossip Grief hallucinations LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

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Mar 15

How to interpret a conversation that doesn’t make sense

by jmgoyder

One of the most difficult situations, when caring for and/or about a person with dementia, is how to make sense of that person’s unflow of words, or else silence.

Anthony’s previously loud voice has, over time, diminished to a whisper (Parkinson’s disease) and his ability to put words together coherently has been affected by Dementia. So conversations (as in the ‘dementia dialogues’ I write about from time to time) are becoming more and more difficult. Sometimes I find myself trying to interpret sounds, rather than words, and sometimes I find myself trying desperately to read his silence.

I haven’t seen Anthony for five days because on the weekend Ming, Meg and I attended my nephew’s fantastic wedding down south. This was an eight-hour return trip so we stayed the night.

And now I have a cold, so my determination to get to the nursing home in the late afternoons has been thwarted despite good intentions. The guilt, and missing Anthony, is difficult to cope with but obviously I don’t want to spread germs in a nursing home environment.

One of the greatest comforts to me is the relationships formed with other bloggers and it has been wonderful to reconnect with them over the last few days. I was feeling guilty about not reading other people’s posts when they were reading mine but I now realise that blogging doesn’t need to be like that and that people are more than understanding of bouts of silence.

At my nephew’s wedding,  I was, as we all were, filled with joy for the happy couple and their gorgeous little daughter. But, later in the evening, I experienced a moment of such intense misery that I could hardly breathe because of Anthony’s absence. My nephew and Ants have always had a wonderful connection, and I know that Anthony would have wanted to be there. Anyway, Ming got me through that moment and I went back to party mode -ha!

A few weeks ago, this was my short conversation with Anthony:

Me: Ants, is it okay if I write a book about you?

Anthony: No!

Me: But why not?

Anthony: Because I don’t exist.

I will never know what Anthony meant by this; was he being cryptic, humorous, philosophical? Was he being deliberately or accidentally poignant?

As Anthony becomes more silent, these transcribed ‘Dementia dialogues’ have become absolutely vital in terms of giving me conversational cues. Topics like the town he grew up in, our son, Ming, various nephews and nieces, farming, fences, cattle, the dairy …. all of these topics are interesting and important to Ants.

Eventually, Anthony will probably be totally silent so, from now on, I am going to record every single word he says.

Alzheimer's Disease; Dementia Anthony blogging death death and dying depression Embarrassing moments Family Friendship Grief hallucinations Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

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Mar 6

Dementia and experimentation

by jmgoyder

Yes I realise this sounds a bit like the title of a horror movie (and in the past few hundred years people with Dementia were misunderstood, undiagnosed, and treated cruelly under a regime of ‘care’). So the idea of experimenting is a little fraught.

But now (2017) the institutionalised care of people, like Anthony, who suffer from dementia, is kinder. So the ‘experimentation’ I refer to in the title of this post is my own.

Let me explain:

I was recently made aware that Anthony was exhibiting antagonistic behaviour toward carers, particularly in the late afternoon when they were trying to put him to bed. It was a terrible shock to discover this so yesterday I decided to go to the nursing home later than usual. I already knew, via hearsay, that it had now become necessary to put Anthony to bed earlier rather than later and that 4pm was the ideal time. If it were left any later, he would become more rigid and resistant to the hoist, the handling, due to the confusion of his sundowning (a late afternoon phenomenon that exacerbates the confusion of Dementia).

Once I realised this, I decided to adjust my visits from early to late so that I could calm Anthony before and after the bed-time ritual. Yesterday, I did this for the first time: I was there in Anthony’s room before the carers came in to put him to bed; I told him I would be back very soon to give him his evening meal, and vacated the room for about 15 minutes. When I returned, Anthony was comfortably in bed, happy to see me again and even happier for me to feed him his meal.

And, when I left him, he was smiling. So I guess this will be my new routine from now on. I have resisted the idea of a routine until now but I think it’s probably time I paid attention to the rather obvious findings of this experiment.

A. Anthony is more prone to exhibiting antagonistic behaviour later in the day;

B. Anthony is more confused in the late afternoon;

C. Anthony may settle into sleep better if I give him a good-night kiss, even if it’s only 5pm.

So it’s useful to know that later-in-the-day visits are more comforting to Ants than morning/noon visits. This way I can be around before and after the bed-time routine and, hopefully, diffuse Anthony’s distress, fear, and confusion.

Me: Ants, the nurses are going to put you to bed and then I’ll come back to give you your meal, okay?

Anthony: Okay, but it’s a bit unorthodox, Jules.

Perhaps I am the one being experimented on – ha!

Alzheimer's Disease; Dementia death death and dying depression Embarrassing moments Uncategorized

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Feb 21

Values

by jmgoyder

Ming and have both sought psychological help over the last few years and one of the most difficult questions to answer is “what are your values?” I think this is a very tricky question, but an important one. It is also a question that I have found extremely challenging to answer.

Stereotypical answers might be: health, family, financially okay, great relationships, good job, political stability, beautiful kids, long life etc. but these are too vague and I don’t like my own vagueness.

Perhaps the question should be rephrased to “what do I value?” This turns the noun ‘value’ into the verb ‘value’ and, in my opinion, makes the question easier to answer. For example, I know what I value most, whereas I can’t quite pinpoint what my values are.

What do I value most?

  • Kindness (the giving and receiving of);
  • My son’s growing wisdom;
  • Anthony’s smile;
  • Authentic relationships with family and friends;
  • Humour;
  • My ability to write about dementia;
  • The new puppy, Pip;
  • Honesty; and
  • Salad.

I haven’t been very good lately at looking after my physical, psychological and emotional health but, like many, I baulk at self-helpy stuff. But there is nothing wrong with self-help! After all, the best way of helping others, which is something I feel passionate about, is to get yourself on track first, surely.

Ming comes home tomorrow from a 6-day intensive beginning to a diploma in psychology which he will complete in around 15 months. He seems to have found his niche and I can’t wait to hear about all of it; we have already had some fascinating phone conversations.

Even pre-dementia, Anthony would never have understood Ming’s passion for helping people; nevertheless he would be so proud if he understood. Often Ants still thinks Ming is a toddler so when this great big man steps into the nursing home room it can be a bit confusing.

Ah yes – other things I value:

  • Laughter;
  • Still being in love; and
  • Ming.

Alzheimer's Disease; Dementia Animal Anthony Australia blogging death death and dying depression Embarrassing moments Family food Friendship Grief hallucinations Happiness Humour joy laughter LOVE STORY Marriage My published writing Uncategorized

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Feb 20

Dementia dilemmas: Silence

by jmgoyder

Anthony is gradually losing his ability to speak clearly and coherently; his voice is soft and croaky and his sentences are sometimes incoherent and don’t make sense. I have to face the fact that the ‘dementia dialogues’ that I write from time to time will no longer be possible as Anthony’s vocal and cognitive skills decline.

Of course, not being able to write our funny little conversations isn’t at all significant in the face of Anthony’s impending silence. I have to admit that I am dreading the possibility that he may stop speaking altogether, but many people with dementia do.

I will miss his one-liners, his ‘I love you too’, and even his sometimes impossible-to-interpret statements like “That’s part of its beautifulness, Jules” when he was referring to something I didn’t understand a few weeks ago.

If this anticipated silence becomes a reality, how will he and I both cope? At the moment, I can easily mind-read and interpret what he is trying to say, so I can affirm that I understand, even if he is asking me to get the cows in, find the car, book the restaurant, give Ming a paddock, cook mornay, take him to Tasmania, visit his mother ….

Over the last weeks, sentences have diminished to single words and sometimes even the single words are unrecognisable as words; sometimes these are just faint sounds. When I can’t understand what he is trying to say, I will ask him to clear his throat and repeat what he just said. Usually my lack of understanding elicits a faint smile or a slight shaking of his head as if to say he has given up and then he will lapse into sleep again.

It is hard to reconcile this diminutive, quiet man with the loud, boisterous, vociferous presence he used to be. On the other hand, Anthony still has an amazing vitality, a spark; he still has a presence. He is popular with staff and he probably has more visitors than most. When a group of us happen to converge in his nursing home room, his delight is obvious but is not necessarily vocal.

Perhaps he will never lose his ability to speak entirely, but, just in case he does, I am preparing myself for conversations that only require a ‘yes’ or a ‘no’; a shaking or nodding of the head; a squeeze of the hand; eye contact; a hug; a kiss; tears and laughter….There are lots of ways to communicate that don’t depend on speech.

Nevertheless, I already find the sound of Anthony’s silent days incredibly challenging. It’s not tragic, or particularly depressing; it’s just the way it is and might be. Yesterday and tomorrow don’t really matter when it comes to today.

So, from now on – ever single today – I will treasure every single word that Anthony is able to utter. But I will also embrace silence.

[Knowing Ants, he will probably come out with an eloquent paragraph when I am least expecting it!]

Alzheimer's Disease; Dementia Anthony death death and dying depression Family Friendship Grief hallucinations Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

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Feb 18

Dementia and misrecognition

by jmgoyder

Ming has been the first of the two of us to be misrecognised by Anthony because Ants keeps forgetting that Ming is now a 23-year-old adult, and not the toddler he often thinks he sees in his nursing home room.

Anthony always knows me but, on the other hand sometimes, when I am sitting next to him, he will talk about Julie to me not quite realising that I am Julie.

Neither of these misrecognitions is tragic – well, they don’t need to be! After all, Anthony is not deliberately misrecognising Ming by thinking Ming is one of Anthony’s numerous nephews. Of course the first time this happened Ming was understandably annoyed and hurt but, since then, he goes with the flow and often says, in his big, booming voice, “I am your son, Dad!”

I am quite prepared for the day that Anthony might not know who I am at all; after all, I know how dementia works and how it manifests itself differently for each and every individual. Why would I be hurt by something that can’t be helped? If Anthony’s dementia worsens, which of course it will, then it may be inevitable that one day he won’t know who the hell I am. I am ready for that.

I’ve said this before but will say it again; if Anthony stops knowing who I am, it doesn’t matter because I will always know who he is. This misrecognition thing that happens with dementia doesn’t have to be seen as a tragedy; after all, the person with dementia has absolutely no intention of breaking your heart by not knowing who you are. You can still be the most trusted, and most loving person, in his/her life.

Anthony: Where is Jules?

Me: Right here, Ants.

Anthony death death and dying depression Embarrassing moments Family Friendship Grief hallucinations Happiness Humour joy laughter LOVE STORY Marriage nursing homes Uncategorized

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