jmgoyder

wings and things

Magnificent

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 everyday (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.

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Happiness

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

http://www.happinessanditscauses.com.au/

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!

 

 

 

 

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The dream

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.

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Pip, the therapy dog

Recently, I have been at a bit of a loss for words, not for any particular reason, just feeling quiet. Also I have been quite preoccupied with Pip, our four-and-a-half-months-old miniature schnauzer.

I am training Pip to be a therapy dog and we are now a few weeks into “puppy pre-school.” So far, she is very good at sitting for food but not very good at obeying any other commands although she is house-trained simply because she is an inside/outside dog; and luckily she chooses outside to do her business.

Pip is already relatively well-behaved in the three nursing homes I take her to, including Anthony’s. For the most part, I keep her on a leash but in Anthony’s room she will now settle on her own pillow on the floor near his armchair for a good couple of hours. I keep her pillow, a container of dog biscuits and a water bowl in one of Anthony’s cupboards. In the other two nursing homes, the joy I see on some of the residents’ faces, when they see, pat or even hold Pip, is beautiful.

Anthony smiles at the way I fuss over Pip and I keep hearing myself sounding like an old woman with a little dog (ha!) But, despite his initial reaction to her puppyhood “It’s just a dog, Jules”, he and she have now bonded.

Me: Do you love her, Ants?

Anthony: Well who wouldn’t, Jules.

At home, Pip is now a hurricane of energy; she races in and out of the house and terrorises Jack, our Irish terrier who is still so in awe of her that he stands back when I feed them both and only eats Pip’s leftovers!

Every morning, I am greeted first thing with a deep growl from Pip, which is her rude way of asking me for breakfast. The closer I get to the refrigerator, the deeper the growl. Ming and I are getting a lot of laughs out of this hilarious new addition to the family.

Apparently I can register Pip as a therapy dog once she has undertaken further training so I am looking into this.

So, even though I’ve gone a bit quiet lately, it’s an accepting kind of quietness. I found out the other day that Anthony is now a ‘full hoist’ which means he is unable to walk at all. I had assumed that he was still maybe able to walk, using the walker, in the mornings, but I guess I was a bit nervous to ask the question because I didn’t want to know(?)

Oh how much I wish I had made more of the last time I saw Anthony walk using his walker – that shuffle-sprint-stall that I have known for nearly a decade. It seems impossible that he would now be more or less bed-ridden but I am an idiot to not have seen this coming.

And, as I contemplate whether to cry or not, I see from the front window of what used to be Anthony’s mother’s bedroom – now my study – a black fur-ball of absolute joy racing towards the front door.

Yipping with delight, Pip enters the quiet.

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Absence makes the heart grow fonder

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!

 

 

 

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How to interpret a conversation that doesn’t make sense

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.

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Still Anthony

One of the things I’ve been most grateful for over the last few years of Anthony’s dementia is that his personality hasn’t changed. He is still easy-going, gregarious, humorous, accepting and gentle. Like Alice in Lisa Genova’s book, Still Alice, Anthony is still Anthony.

Or he was.

The other day, about an hour before Ming and I were due to give a talk to a group of Dementia Practice students, he rang me from the nursing home to say that Anthony had broken a staff member’s hand.

What?

Apparently Anthony has been exhibiting out-of-character behaviours recently, partly due to a urinary tract infection. He is antagonistic and physically resists being put to bed etc. It is painful for me to imagine such scenes as Anthony doesn’t behave like this when I am there so this has come as a shock to Ming and to me. I also feel terrible that someone was injured.

But, picture this:

You have no idea where you are. It’s 4pm but you don’t know that. Two women in uniform approach you with a big piece of machinery [hoist].They are trying to explain something to you but you don’t understand – something about a bed. As they begin to undress you, you try to say no, that you are cold, but you can’t remember the words so you lash out. You are so terrified that the adrenaline kicks in and you fight. If you could flee, you would, but your legs won’t work. You wonder where Julie is and why she’s not there. Who are these women, with their gentle voices and strong arms and why are they putting you into the machine?

Anthony is scared.

In one of the support groups I attend, a woman recently described how her husband’s gentle personality switched overnight; he became angry, jealous and threatening. She said, “I didn’t recognise him. He was a different person.” At the time I thought how lucky we were that this hadn’t happened to Anthony.

Ming and I admitted to the Dementia Practice students that the possibility of Anthony’s personality changing was a brand new challenge. Perhaps I should visit later in the day than earlier so that I can calm Anthony down. I know I thought of this idea ages ago, for different reasons. I’ll ask the staff what they think when I go in today.

I have been preparing myself for the possibility that one day Anthony might not recognise who I am.

It never occurred to me until now that one day I might not recognise who he is.

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Dementia dilemmas: Silence

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!]

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Dementia and deceit

I absolutely love the idea of fabulation (making up stories), especially in the context of Dementia. After all, if Anthony can tell me that there are calves frolicking outside the window of his nursing home room (not true), surely I, too, am allowed to fabulate. The only difference, I guess, is that I am doing it knowingly; I am lying on purpose in order to comfort him, to make him happy.

For example:

Anthony: I fixed all the fences and the trough leaks this morning.

Me: Is that why you’re so exhausted?

Anthony: Yes, and I rode the bicycle.

Me: How far?

Anthony: About 20 miles!

Me: Bloody hell, Ants, you are overdoing it!

Anthony: I know.

Me: Ming can do some of those jobs for you – he wants to.

Anthony: He’s too young, Jules.

Me: He’s 23, Ants.

Anthony: That’s someone else. Our son is too little.

Me: Well, when he grows up he wants to be just like you.

Anthony: Oh.

Me: Ants, remember that lotto ticket we bought last week?

Anthony: No.

Me: Well we won a lot of money.

Anthony: How much?

Me: Thousands! We will never have to worry about money again. Isn’t it wonderful!

Anthony: Are you sure?

Me: Absolutely, so I am going to take the money and run off to Hawaii!

Anthony: You would never leave me.

Me: Yeah, I was just kidding, Ants. So what do you want me to do with all this money?

Anthony: Put it in the freezer.

There is no bicycle, no money and very little reality to this kind of conversation but it helps! Sometimes I feel like an actor in a play where ad-libbing is the norm. My fabulatory conversations with Ants often resemble something Samuel Beckett might have written.

My attitude may seem controversial but, as a farmer, Ants has always been worried about money, so it seems logical to fabulate the idea that there is plenty. Why not? It is a comfortable lie and now he often greets me with the question of how much is in the bank account. If I told him that his pension was not quite covering his nursing home costs and that I was eating into my superannuation to survive, he would be worried.

I don’t want him to be worried and I love the way he responds to the news of our (fictitious) burgeoning bank account. I also love the way he is under the impression that he is still farming, and farming successfully.

Anthony: That was a good party.

Me: Which one?

Anthony: The wedding.

Me: Oh, yes, it was brilliant!

Sometimes I feel acutely the surreal experiences of having been privy to these fabulations that Anthony thinks have happened in reality. He doesn’t know that he has Dementia and he often doesn’t realise he is in a nursing home.

One thing that is absolutely certain in our relationship, and that is free of fabulation, is that we love each other very much.

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New kid on the block (and the reason I haven’t been blogging lately)

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Well, here she is – Pip – a miniature schnauzer who is just eight weeks old. Once she has had her next vaccinations, I will be able to take her with me to see Anthony and other people.

The story behind her name: years before Anthony and I were married, I lived in a little cottage a few kilometres from his farm. I was undertaking my first year of university studies and feeling, I guess, a bit isolated. I was also suffering a severe case of ongoing unrequited love for this beautiful but idiotic older man who, instead of proposing, bought me a miniature dachshund puppy that we called Pip.

That Pip was the most beautiful gift, and the best friend I had ever had until she died many years later.

I was recently reminded (via a photo) of the special bond I had with that first Pip and how her company helped me through doing all of those assignments in that small cottage all alone. I was only in my 20s then and terribly naïve; I couldn’t understand why Anthony didn’t love me back. It is only in retrospect that I realise how taboo it would have been for him, a middle-aged farmer, to contemplate a romance with me.

So, instead, he gave me Pip.

And now we have a new Pip and I am, once again, not alone.

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