jmgoyder

wings and things

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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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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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 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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Living with and without Anthony

Six months ago I was interviewed on ABC radio about Dementia and this morning the station rang me asking if I would have another chat by phone so of course I said yes. Two hours later the phone rang and I was on the air again with Geoff Hutchison.

He introduced me by saying something like “We are talking to Julie Goyder about living with and without Anthony” and I thought this was a wonderfully simple, and yet profound, way of describing the situation.

When someone you love is admitted into a nursing home, especially if she or he is your spouse, the mutual loss can be heart-breaking and often entails feelings of guilt, fear and uncertainty. The intensity of these emotions (for me, at least) lessens over time, then sometimes erupts into the kind of depressive episode that overwhelmed me recently. For some reason, the phrase “living with and without Anthony” really got to me because that’s exactly how it is – a sort of limbo.

Nevertheless, I no longer see the fact that Anthony is in a nursing home as a tragedy. After we both accepted that this was how it had to be, it has been wonderful to see how well-cared for he is (and certainly better-groomed than he was at home!) And, as I’ve said before, not having to care for him has reignited by ability to care about him. We can eat, drink and be merry as long as I don’t have to take him to the toilet ha!

In helping to facilitate a couple of carer support groups lately, one thing comes across loud and clear. The carers – both those who look after their loved ones at home and those whose loved ones are now in permanent care – are suffering. Some of these carers are elderly themselves so the physical, emotional and psychological toll on them is massive, especially if their loved one has Dementia.

The projected statistics and associated costs of Dementia are alarming; so too are the repercussions on that burgeoning group of people who care for family members with Dementia. In recent times, more attention has been given to these carers but there is no easy solution and many carers are reluctant to seek help anyway. Why? Because it is embarrassing to ask for help, embarrassing to admit you aren’t coping, embarrassing to be confused by your loved one’s behaviour etc. And then there’s the shame. I remember when we had to make a fairly quick decision to accept Anthony’s respite room in the nursing home permanently. Anthony’s Dementia was in its early stages then so he knew what was going on and he felt abandoned, but he still agreed. My sense of shame lasted two years.

I wish I could convince others that placing someone you love in a nursing home is NOT something to be ashamed about; that admitting that you are not coping is NOT embarrassing – it’s the truth; that succumbing to Depression is NOT unusual if you are caring for someone with Dementia. There are some desperate stories out there (one caller to the radio station outlined her own experience this morning).

Living with and without Anthony is just the way it is; it’s difficult but it’s do-able. And so many of us do it silently. I choose to share my thoughts rather loudly here on the blog because there is a Dementia crisis that needs attention.

After I tried, ungently, to reposition Anthony in his armchair the other day, this was our conversation:

Anthony: Have you ever heard of the word, ‘fear’?

Julie: What? Am I supposed to be in fear of you?

Anthony: I won’t enlarge on that.

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Dementia and Depression

The title of this post is a bit misleading (intentionally) because it implies that Depression is an off-shoot of Dementia and, yes, sometimes this is the case.

Anthony, who recently turned 81, has Parkinson’s Disease Dementia but, even after having been in the high-care section of a nursing home for five years, he is rarely depressed.

Julie (that’s me), who recently turned 58, has Depression in the clinical sense – i.e. she has a disease in much the same way that Anthony has a disease. But, like Anthony, she is rarely depressed. There is a rather wonderful irony here.

I am not quite sure why I wrote the above paragraph in the third person except for the fact that I have been so deeply embarrassed by my diagnosis for so many years now that I find it difficult to admit. Admitting it now is my way of combatting the stigma that still exists, and rejoicing in the fact that there are treatments; that I have been helped by these treatments (medicinal and psychological); and that I have become sensitive to others who suffer like I used to.

In recent weeks I have had the most ghastly outbreak of Depression and yet, paradoxically, I have been able to function normally whilst visiting Anthony, looking after the new puppy, and interacting with friends and family. Ming is, of course, my priority, my favourite person, my rock but also, perhaps, my downfall in the sense that I feel I have failed him in so many ways.

There is a huge difference between Depression and being depressed; the former is a condition and the latter is a temporary mood. Obviously this is up for debate and I would appreciate feedback.

Dementia, on the other hand is, at least for Anthony, irreversible and ongoing/worsening. And yet he has the most amazing ability to comfort me, and to be so accepting when I leave him to ‘go to work’ (my latest ruse).

Me: I have to go to work. Will you be okay?

Anthony: Well, I’ll have to be, won’t I.

Me: So what would you rather have – me here with you or me making money?

Anthony: The money.

This has been a bit difficult to write so thanks for listening x

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The Anthony story: (notes on writing)

Of course I don’t want to call this book The Anthony story (boring title!) but it’s a working title for the moment and allows me to quickly reference posts that are about Anthony’s PDD. I did this way back with the Love story posts and, more recently with the Dementia dialogues posts but unfortunately I keep giving up on my writing goals.

I really want to write something that makes a positive difference to the lives of people with Dementia and those who care for them (friends, family, staff).

Of course Anthony’s story is already written on my blog, in an intermittent way, over the last five years or so. I think, if I were to do nothing else but rewrite/edit this story, it would only take a few weeks. But I keep hesitating, hibernating, hiding….

I’m not quite sure why I have such a sense of fear in writing this story. Perhaps it’s to do with my self-consciousness about the fact that this story is actually about me more than about Anthony. Yes, I think that’s it! After all, Anthony is mostly content whereas I am sometimes a mess.

Those of us who care for a loved one, either at home, or in a nursing home, are probably the most unnoticed group out there. Red Cross, Bethanie and Alzheimer’s Australia groups have now begun to acknowledge and support this growing group of people and I feel so glad to be part of this.

Me: I am writing a book about you, Ants.

Anthony: No, don’t do that, Jules.

Me: Why?

Anthony: You talk too much.

New title of book – Dementia adventures?

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The Anthony story: Chapter 1.1

ENTERING LIFE IN A NURSING HOME

I remember being absolutely terrified and, when I look back, I realise that my terror was simply a reflection of Anthony’s fear of the unknown I guess. The view from his window was, and still is, of a lawned area which I am so grateful for because now that is where he ‘sees’ people and livestock and dogs, via his hallucinations.

He had been hospitalised so many times during 2011, that it was a surprise to me that there was no television. Hospital rooms always have televisions and Anthony was used to watching the news channels. I didn’t want to leave him in such quiet emptiness so I raced down to the closest shop and bought him a television and got it working that day. I remember feeling a sense of desperate urgency that he would have something/anything to distract him from the fact that he was being left there.

January 2012: The bed looked so small, the wardrobe looked so large, the walls looked paint-chipped in places, but all in all, it was satisfactory. I can’t remember who did the admission interview and Anthony, of course, no longer remembers any of it, but at the time it seemed a terse introduction to a respite situation that, just weeks later, would become permanent.

During those interim weeks between respite and permanency, I was busy with looking after Ming in Perth, 200 kms away – his pre-operative preparations, the spinal surgery itself, and his post-operative recovery. I remember racing back and forth from the hospital in Perth to the nursing home in Bunbury and reassuring Anthony that Ming was fine. Back then, despite Anthony having very clear signs of Dementia, he understood what was going on and why he had to be in the nursing home. Nevertheless,  he argued with me that he would be fine at home on his own and I had to keep reminding him of his falls (back then I only had to turn my back for a second and I would find him toppled on the ground).

I don’t think there was any question of Anthony being permanently admitted to the nursing home at that time. Certainly there was no question that Ming’s post-operative health would be my priority. So the fact that Anthony’s nursing home room became available in a forever way was both a relief and a shock. Anthony and I had numerous discussions over the week we had to make the decision and all of those conversations are now a blur to me. But I do remember him conceding in the end; his pragmatism took over and he didn’t shed a tear as we signed the forms. I can hardly bear to think of how abandoned he must have felt, but I do remember how the hot tears burned through my body, my eyes, my skin, during that first year.

It’s so different now! The Dementia component of Anthony’s PDD has made it easier for me to convince him that all is well on the farm, to thank him for fixing the fences yesterday, to talk about the party we had last night, to ask his advice about toilet-training little Ming, to fixing pumps, how to cook his mother’s salmon mornay, or do I look better in a skirt or jeans.

Whenever you enter a virtual game, emerge from a dream, or find yourself identifying with a character in a novel, or a blog, or a movie, you are going to come face-to-face with the difference between real and unreal.

Yesterday Anthony thought he saw a close neighbour, Mick, on the lawned area outside his room. As usual I went along with this. Then, this morning, I bumped into Mick at the local shop (I hadn’t seen him for years.) Such a strange and wonderful coincidence!

Yes, Dementia has its tragic sides, of course, and every single individual’s experience of having this disease is different. I have learned how going with the flow is sometimes not enough; sometimes you just have to go with the moment-by-moment situation.

When Anthony says, “I don’t understand what’s going on, Jules” it breaks my heart. But when he says, “I’m glad we painted that wall blue” (the wall behind his television), it is the perfect opportunity for me to begin a conversation, no matter how bizarre, and we can even have a laugh.

After all, when the ‘now’ Anthony was the ‘then’ Anthony, he would never have had a wall painted blue.

 

 

 

 

 

 

 

 

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The Anthony story: Chapter 1

Having decided to write a book about my husband’s Parkinson’s disease dementia (PDD) and how our son and I have dealt with Anthony’s condition, I reluctantly went back to blog entries.

My reluctance was only due to the fact that we are now coping well, so I didn’t particularly want to re-visit the traumas of Anthony’s escalating disease, his admission to the nursing home, and the hearbreaks of that era.

Nevertheless, I did go back in time, via my blog, to discover that during the December of 2011, Anthony was in a Perth hospital for the third time, with a specialist trying to get his PD medications ‘right’. Not long after he came home, he had what I now know was a TIA (a mini-stroke) and I called the ambulance. The hospital experience was frightening as Anthony became totally disorientated.

As Ming was due for major spinal surgery for scoliosis in early February, we gratefully accepted the respite room, at a local nursing home, for Anthony from the 4th January, 2012. This was a godsend as I knew I could no longer leave Ants alone on the farm and I needed to be in Perth to look after Ming post-op.

On January 24, 2012, Anthony’s respite room became available permanently and we had a week to make that decision. Even thought it was a mutual decision, between Ming, Anthony and me, and we all agreed, the pain of this decision was ghastly and, for me particularly, agonising.

I wish that I had known then what I know now, about how to make this experience better. Back then, Anthony wasn’t as confused as he is now with Dementia, so he must have felt abandoned regardless of how many hugs and words of comfort I gave him.

Today, he removed my hand from inside his and carefully placed it on his table.

“Why did you discard my hand, Ants?” I asked

“I thought it might need a rest, Jules.”

 

 

 

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