jmgoyder

wings and things

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

We have been lucky so far in that Anthony has not been privy to his own experience of dementia because it has been so gradual, over so many years. He is not distressed about having dementia because he doesn’t know he has it and this is a blessing. In fact, Anthony is hardly ever distressed about anything, which continues to amaze me. I reminded him yesterday that he was the best person I had ever met in my life. He liked the compliment but was a bit mystified at my rather emotional expression of such praise.

Anthony: Why?

Me: You accept the things that come your way; you don’t let the Parkinson’s disease get you down; you are calm and content; and you are so good for me!

Anthony: You’re not so bad yourself.

Me: Well thanks, but you know how I am – intense, frazzled, up and down; you are kind of like a balm!

Anthony: Well I wouldn’t go that far, Jules.

Me: I’m the one supposed to be supporting you but it is mostly you who supports me – emotionally I mean.

But this afternoon, we had a completely different kind of conversation:

Anthony: Okay, let’s go.

Me: Where?

Anthony: I want to go home to see Mum.

Me: But she isn’t there, Ants.

Anthony: Where is she?

Me [thinking oh no, I have to lie again!] She’s as J and R’s (his sister and brother-in-law, both deceased).

Anthony: Well we can go there then [trying unsuccessfully to get up out of his armchair]

Me: I think they’ve gone out for lunch.

Anthony: Well we can join them and then go to the farm.

Me [grasping for straws]: But what if the doctor comes?

Anthony: You always do this.

At this point I decided to go quiet and put the television news on in the hope of distracting Anthony away from the topics of his mother and the farm. I was holding his hand and could sense his restless distress in the way he was squeezing mine and trying to get out of his chair. It was 2.30pm, by which time Anthony’s mobility is usually shot and his lucidity faltering, so I decided to wait silently in the hope that the mother/farm conversation would be forgotten.

While I waited, I could see from the corner of my left eye that he had turned his face towards my profile, imploringly, but I just pretended to be lost in the ABC news. I ignored the wave of sorrow that suddenly washed over me and tried to get my thoughts together, just in case….

Anthony: Hey, hey [squeezing my hand harder]

Me [looking at him in mock annoyance]: What now!

Anthony [with a little smile at my retort]: I don’t understand why you don’t like Mum anymore. Why can’t I see her?

Me: Okay, Ants, I didn’t want to remind you of this because I didn’t want you to be upset but your mother died many years ago. Remember? I was with her in the hospital when she died and the funeral was in Perth where she is buried in the K cemetery.

The expression of bewilderment on his face was heart-breaking but he coped with the same kind of resigned acceptance he expressed all those decades ago when his mother did die.

Anthony: Thank you for telling me, Jules.

Me: Are you okay, Ants?

Anthony: Not really.

Me: What can I do?

Anthony: Can you just take me to the farm – my farm?

Me: Okay, now I have to tell you another upsetting thing, Ants. You are in a nursing home and I can’t lift you anymore so we can’t go back to the farm – well, not today anyway. Ming gets back from Perth tomorrow so maybe then. That way he can help me.

Anthony: You always say tomorrow.

Me: Please, Ants! I would bring you back to the farm right now if I could. I can’t lift you! I love you with all my heart but I just can’t manage you physically. That’s why you are in a nursing home!

Anthony: But I’m getting better every day. Why don’t you believe me?

Me: I do believe you – I absolutely totally believe you but you have to trust me too okay?

Anthony: Don’t cry, Jules….

It’s okay, I am not crying now but I wanted to write this situation/conversation into my blog in order to show how easily the past and present can either collide, or slip and slide in the mind of someone who has dementia. As Anthony is usually so accepting and content, I wasn’t expecting to have to negotiate my way through such a complicated conversation. I think I managed it fairly well, but I could have done better and I wrestle with that.

On the other hand, these kinds of dementia dilemmas are what so many of us face. I am so glad to be volunteering for the various organisations that focus specifically on dementia, on the carers and, vitally, those who actually have dementia – like my wonderful Anthony.

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Dementia dialogues 12

Anthony: How do you always find me? It’s remarkable!

Me: I have a really good map, and a really good memory.

Anthony: You look beautiful.

Me: Wow, thanks, Ants! You look good too.

Anthony: I need to get rid of this moustache.

Me: What? You don’t have a moustache, Ants – you haven’t had a moustache for years.

Anthony: So what do I have?

Me: Well, you have a lack of moustache I guess….

Anthony: Mmm.

Me: Could we resume this discussion tomorrow?

Anthony: Yes, just bring chocolate.

 

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Green juice adventures

I am a lover of green juice – a devotee, a fan, an advocate! The idea of green juice is what wakes me up in the morning, what keeps me going during the day and what EXHAUSTS me in the afternoon/early evening. Why the latter? Because I make it myself.

Let me explain the process in detail. I’ll even include a timeline.

3pm: Go out to your luscious vegetable garden and try to ignore the 35 degree heat.

3.05pm: Go back to the house to get a hat, a sweat band, and a container into which you can place your freshly harvested greens, and try to ignore the flies in your nostrils, the ants between your toes, and the possibility of a snake in your vegetable forest.

3.10pm: Once you have found your garden scissors (this may take awhile, so try to remember to remind yourself to always put them in the same place so that you don’t have to dig the entire garden up looking for them), begin to harvest your amazing produce.

3.30pm: Try not be too alarmed by the fact that all of your spinach and all of your celery plants have somehow become trees. This is because you haven’t been out to the garden for some time, but don’t feel guilty; after all, it’s hot, dirty and insecty out there. Just cut a few branches off the spinach and celery trees.

4.15pm: Take your container of beautiful green vegetables to the wash house and plunge them into a sink of cold water. If they won’t all fit, take some of the smaller greens into the kitchen and do the same. Have a little rest.

4.30pm: Cut up some apples and carrots and a bit of ginger. Put these into a big bowl with the washed greens from the kitchen sink. Make sure your wonderful cold press juicer is responding to electricity and BEGIN juicing!

5pm: Don’t be upset if you forgot to change out of your white shirt; green is a lovely colour!

5.05pm: Pour the results of this exciting process into the bottles you have waiting-and-ready for the wonderfulness of this green juice and put them straight into the refrigerator. Try not to think about the recent theory that if you don’t drink freshly pressed juice immediately, it won’t ‘work’. Allow yourself a few sips of the elixir and feel the surge of energy this provides you with. You will need this energy because now you have to clean the juicer.

6pm: Now that you have washed and rinsed the many parts of the amazing juicer you bought online, have a little rest again. You may indulge in a little green juice (delicious!)

6.30pm: If you are struggling to reassemble the juicer for tomorrow, you may open a bottle of wine. A single glass of this kind of juice can help immensely as you perform this semi-final task. Try not to panic if the top bit doesn’t quite screw into the middle bit of the bottom bit of the juicer. Instead, use this experience as a kind of meditation. If moments become minutes and minutes become, well, hours, you can either call on someone to help you, or just do that whole breathing thing until the juicer is ready for use again. Do NOT swear at the various parts of the juicer that won’t cooperate immediately; do NOT send an angry email to the manufacturers (because they did their very best and, after all, this is a very superior juicer); and, above all, do not give up on loving the green juice!

7pm: The last stage of this green juice adventure is the most challenging; force your son and husband to drink it. If your son says that there is a bit of grit in it, just smile calmly; if your husband spits it out, try not to be offended. You did your best.

And all of that leftover green juice is yours!

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An ‘aha’ realisation

Today I did some volunteering at another nursing home before going to see Anthony. I told him I had just come from work (I call the volunteering ‘work’ because Anthony’s lifelong concerns about money are still a big part of his psyche).

Anthony: So how much money is in the bank?

Me: Thousands!

Anthony: How many?

Me: (pulling a fictitious figure out of the air) $35,000!

Anthony: That’s not bad.

Me: What do you mean ‘not bad’? My job is making us rich! You should be proud of me!

Anthony: I am, Jules.

Me: Ants, the reason we are so wealthy is due to all of your shares and your hard work. We don’t ever have to worry about money again because you are such a good provider!

Anthony: But did you turn the pump off?

Me: Ming does all of that now.

Anthony: What about the calves?

Me: All safe, tethered and beautiful. You should be proud!

Anthony: I fixed that fence this morning.

Me: I know – thank you. Everything is fine now.

Anthony: But what about Mum?

Me: Ming is with her – she’s fine.

Anthony: Okay.

Me: I have to go back to work now – will you be alright?

This was our conversation at about 4pm today and I used ‘work’ as a way to leave him with the assurance that I would be back soon. As I’ve said before on this blog, telling Anthony that I am going home often distresses him because he wants to come home too – of course!

I have been naming the above such conversations as “Dementia dialogues” and I sometimes worry that this title may be construed as demeaning or patronising to Ants and other people with Dementia. This is certainly not my intention.

As I was leaving, we had this conversation:

Anthony: You don’t have much of a life do you.

Me: What are you talking about, Ants? I have you and Ming – what more do I need?

Anthony: But we’re all split apart.

I was so shocked by the lucid poignancy of this statement that my heart felt like it did a somersault. Anthony said this without a flicker of unhappiness and I remembered how factual he used to be – how pragmatic.

And then, just now, before I began to write this post, I realised that Dementia might affect, and sometimes kill, physical and cognitive memory, but it doesn’t necessarily affect emotional memory.

I told Ming what Anthony said today and he punched his heart softly.

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Dementia dialogues 0

Me: I love you so much, Ants.

Anthony: I wonder sometimes.

Me: What do you mean?

Anthony: The way you treat me.

Me: What?

Anthony: Like a bag of old rags sometimes. Look at yourself in the mirror!

Me: I don’t understand, Ants!

Anthony: It’s all right – I forgive you.

Me: Forgive me for what? I am doing my best! Why are you being so horrible to me?

Anthony: I just want to go home and see Mum!

Me: But she’s fine, Ants!

Anthony: This has been boiling up for ages.

Me: I don’t understand.

Anthony: Yes you do, and you only barely put up with me!

The above was an uncharacteristically angry and semi-lucid conversation during which I got my notebook out to record things exactly as they were said.

A marital row, I guess – no big deal. Anthony’s sudden mistrust and cynicism about me yesterday carried itself into today but was less acute. I hope this angry thing won’t last long.

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Dementia dialogues 23

Me: Daaaarling!

Anthony: Jules!

Me: Why do you look so surprised?

Anthony: Well, I was going up the passageway and I saw her. It was extraordinary.

Me: Who did you see?

Anthony: You.

 

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Laughter

One of the best things about my relationship with Anthony is that we are usually on the same page when it comes to humour, AND we are both able to laugh at ourselves. Today, I was feeding him his lunch and this was our conversation.

Me: You like this chocolate mousse stuff don’t you?

Anthony: I didn’t always.

Me: Well you obviously do now – you’re like some sort of lizard with your tongue sticking out for every mouthful.

Anthony: Delicious.

Me: Okay well I have to go to work now (volunteer job) so is there anything you want?

Anthony: Your hair ….

Me: OMG yes, yes, yes, my hair is due for a trim – anything else?

Anthony: It’s a matter of urgency.

Me: Urgency! Are you kidding? My hair? How dare you!

Anthony: But your face is beautiful.

Me: Too late for that kind of rubbish, Ants – you’ve done your dash!

Laughter … the most wonderful, magical thing in the world.

 

 

 

 

 

 

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Dress rehearsal

It’s now been a bit over a month since I thought Anthony was on the brink of death. In the space of a couple of days, he had suddenly become unable to chew and swallow food in the ordinary way, and, on two occasions, had been unconscious for several hours.

The fact that these two ‘end-stage’ things happened in a matter of days convinced me that Ants was definitely on the way out – soon. I was catapulted into action, messaging family members, making appointments with funeral directors, our lawyer, meeting with my best friend, the Anglican priest who blessed Anthony with the last rites, picking songs for the funeral, and asking nearly 20 people to be pallbearers ….

And then, as my new friend Moira described it, Anthony “did a Lazarus”. Okay, so that is all very well and I am glad, but the panicked anxiety and anticipatory grief I felt during that week has left a bitter taste in my brain. I feel as if I have been tricked, deceived; here I am all ready for Anthony’s death but the joke is on me because he is still beautifully alive, holding my hand and watching a movie with my mother and me… today.

Ming, our son, our one child, always gives good, sensible, pragmatic advice to me. He is an absolute rock of a person and has had to cope with Anthony not recognising him several times recently. Ming is philosophical about this because he already knows how dementia works.

No dress rehearsal prepares anybody for the death of a loved one.

 

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Caring for the carer

I am on the brink of facilitating a couple of carer support meetings, so I thought this would be a good place to air some of my thoughts beforehand.

Carers/care-givers – who care for and/or about loved ones who suffer from diseases like Dementia – are, according to the latest research findings, amongst the loneliest people in western society. The loneliest people are, of course, those with Dementia, especially those in care, like my husband, Anthony.

I have always loved being alone and am comfortable with solitariness. I am not naturally gregarious but I do enjoy the company of friends. Until recently, I have never actually felt lonely, but now I do – acutely. I miss Anthony being home with me, with Ming, milking the cows, chopping firewood, lighting the Aga, cooking steak on the barbecue, washing the car, watching ‘The Bill’, snuggling up in the big bed with toddler Ming in the middle.

But these memories are now nearly two decades old. More recent memories are stark with the years of frustration, avoidance, anger, sorrow, exhaustion – mine mostly. Having to quit my job in order to take my husband to the toilet, to stop him from falling over, to hide the car keys so he wouldn’t try to drive, to turn taps off that he’d left running, to open the vegemite jar when he couldn’t….

For awhile Ants and I hid what was going on from little Ming but it wasn’t long before Ming had to help out. I became so exhausted that I ended up in hospital and after that Ming and I shared the night shifts with Anthony.

And then – years later – the nursing home decision, the subsequent paradox of guilt and relief and now – more years later – the ongoing grief and loneliness. I miss him so much!

I am very glad to have the opportunity to facilitate these carer support groups because I have developed a few ways of coping better than I used to. Until I became involved, as a volunteer, with these groups, I had no idea that there might be some support for carers out there somewhere. If I can be a part of this, I will be so glad!

 

 

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