jmgoyder

wings and things

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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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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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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“Look after yourself.”

I used to absolutely hate it when people said this to me. Over many years, so many people have said the following kinds of things:

You need to look after yourself, Julie!

You should get out more, Julie!

You’re exhausting yourself, Julie!

You don’t have to visit Anthony every day, Julie!

You should sell the farm, Julie!

You should smoke pot, Julie!

You need to get a life again, Julie!

This sort of well-meant advice enraged me at the time, and I resisted it, but now I am beginning to think that maybe – just maybe – it is time to make a bit of a change. A friend visited Ants the other day and, when this friend asked Anthony how I was, Anthony said, despondently, that he hadn’t seen me for days. But I had seen him the previous day! Admittedly I haven’t been into the nursing home as much as usual due to the new puppy (who, having only just been vaccinated, can’t be taken anywhere until next Friday due to the parvovirus outbreak), but it was frustrating to find out that Anthony hadn’t remembered my previous day’s visit.

And this is my dilemma: on some sensory level, Anthony notices my absence and conflates the single days I don’t visit into several days, so feels neglected. On the other hand, I might be with him day after day and he will still forget and this is a cognitive/time issue. This is an impossible conundrum that I wrestle with constantly but, due to the puppy situation, I have seen less of Anthony than usual over the last month.

The fact that, despite his now advanced Dementia, Anthony has noticed my absence, is terribly upsetting for me. On the other hand, I am beginning to realise that I actually do need to care for myself better. But I had to come to this realisation by myself and not succumb to all the ‘should’ advice.

When Ants was home and Ming was little we had an idyllic little triangle of love for each other; it was magic and it went on and on, for years and years, despite the onset of Anthony’s many illnesses (including kidney cancer in the first year of our marriage).

I will never, ever abandon him and not visit, but perhaps it really is time to re-find myself, look after myself. If I can learn how to do this better, I will be more effective in the carer support groups I am helping to facilitate.

Look after yourself.

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