jmgoyder

wings and things

Dementia adventures

Well today was a bit different from the norm in the sense that my visit to Anthony was fleeting. I was on my way to see a movie with my mother and I literally only had about 10 minutes to spare.

So I rushed into Anthony’s room, admitted I was in a rush (to go to work – my latest ruse) and he was delighted. I knew he was delighted because he smiled and seemed happy to see me so buzzed. I hugged and kissed him multiple times and his smile got bigger.

And when I said, ‘seeya’ he was absolutely fine!

Is it possible that a fleeting visit like this can bring the same amount of joy and comfort as a prolonged visit? Would friends and family be more willing to visit if they knew it could be easy, fleeting, short-lived?

Anthony doesn’t know he has dementia on top of everything else and I don’t see the point in telling him this. But he does know who we are – his friends and family. Sometimes he is confused about who is who but so what!

We still have a lot of joy, and a lot of joy to come, if Ants keeps living and defying the odds. He is an absolute legend and has taught me so much!

 

 

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Dementia dialogues: “Let’s go home.”

This hasn’t happened for so long that I had almost forgotten: Anthony’s wish to come home.

From between noon and 3pm today, Anthony tried, futilely, to get up from his armchair and kept repeating “C’mon, Jules, let’s go home.”

Over and over and over again, I kept making excuses: “I have to go to work at 3pm, Ants” – in reference to support meeting I was attending this afternoon; reassuring him that his long-deceased mother was fine; re-explaining to him that he was in a nursing home and had Parkinson’s disease; and telling him how much I loved him.

Similar stories were shared at the family support meeting and I love the fact that we can comfort each other simply by acknowledging that we are all going through similar experiences with our loved ones.

It is 40 years since I fell in love with Anthony, the cheeky, macho dairy farmer with a penchant for motorbikes and fast cars – a man 23 years older than me who stole my heart.

And, no matter how much I would love to bring him home, I can’t; he is immobile now.

Perhaps, instead of always trying to be positive, I should just accept the fact that this is a horrible situation.

I can’t be bothered with the categories and tags that I should attach to this post/blog. From now on I am just going to write my heart out in whatever way I can and this will be such a relief!

This isn’t home anymore, Ants, because you are not here.

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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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Blogging and reciprocation

Apart from the fact that my blogging has come down a notch in terms of frequency, I also have the guilts about not responding to others’ blogs so am going to catch up in next few weeks. In other words I am going to shut up and listen!  It has been a low period of time over the last few months and I so appreciate the support given to me by blog, Facebook and day-to-day friends. My turn now – to reciprocate.

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Dementia and experimentation

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!

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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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Values

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.
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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 misrecognition

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.

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