jmgoyder

wings and things

Routine to the rescue

I’m not crazy about the idea of routine and now that I am once again a lady of leisure unemployed, there is even less incentive to exit the world of spontaneity and knuckle down.

In my recent interview with the finding-another-job people, I stated that I only wanted part-time work because I liked to spend the afternoons with Anthony in the nursing home. I also stated that I would be happy to do something completely different from my previous jobs (lecturer, nurse etc.) So it’s with a degree of mild excitement that I am now looking at outside-the-box possibilities. We shall see!

In the meantime, I have settled into a routine of being with Anthony from just before noon until about 4pm. This way, I can help him with his lunch; make sure he is warm enough; get him comfortable in his electrical armchair; give him chocolate, bananas and beer (but not all at the same time); and just be there, very close, one hand on his head and the other hand inside both of his.

This arrangement is great and our mutual friends and relatives now visit us at the nursing home. I am free to make visitors coffee or tea (our friend, C, visited this afternoon and it actually did feel like we were all home at the farm). I also have plenty of long-lasting snacks in Anthony’s cupboard, you know, like nuts and stuff, plus red wine, brandy, scotch and warm beer. The ready availability of this kind of sustenance also helps to make Anthony’s room homey and, I hope, welcoming.

If I am meeting friends for lunch, I simply go to see Anthony a bit later in the afternoon and then stay later in order to help him with his dinner. So I think the fact that I am now always there in the afternoon has become something he can now rely on; it gives both of us a definite daily expectation. It also frees my whole morning up so I can do other things like the exhilarating tasks of housework, washing and cooking for a fussy son ha!

Sometimes I feel incredibly lazy and unproductive sitting on the side of Anthony’s armchair with him, watching Dr Phil or a television series, or Master Chef. But, thanks to either the ‘pause’ or ‘mute’ buttons, I can always stop whatever show is on and we can converse with each other and/or visitors, AND the wonderful staff who are so affectionate and friendly to both of us

Today, Anthony was quite vocal and ‘with-it’ until about 3pm when he thought his mother’s eye-glasses were on the floor (yes, the hallucinations are getting worse but not distressing yet, like they used to be at home).

Anthony: You are popular, Jules.
Me: What do you mean?
Anthony: Everyone always wants to know when you will be here.
Me: No, it is YOU who is popular, Ants! The staff here love you!
Anthony: I don’t think so – I think it’s you.
Me: Rubbish, Ants!
Anthony: I beg to differ.

But a couple of hours after this lucid conversation, as I was about to leave to come home:

Me: I’m off now to do the grocery shopping, Ants, okay?
Anthony: Is everything in the shed?
Me: Of course!
Anthony: What about the calves?
Me: They’re fine; Ming is taking care of it – don’t worry.
Anthony: Don’t be too long, Jules.
Me: I’ll be back as soon as I can.

And, after one last kiss, hug, joke, lie, I come back home to this beautiful farm and begin to accept that this new routine is working.

Anthony’s face is no longer as expressionless as it was six months ago….

IMG_4200

He is smiling again!

42 Comments »

Weird and wonderful

Anthony had visitors today when I arrived – his oldest friend, F, who often drops in with his wife, J. But today it was F with his eldest daughter, T.

He/we have had a lot of visitors lately and most people say, when I go outside to see them off and thank them, that Ants looks better.

The weird and wonderful thing about this is that he actually has started to look ‘better’, feel better, respond better, smile more readily, quip sarcastically, banter with me and with visitors.

I find this both fantastic but also bewilderingly fascinating because Parkinson’s disease doesn’t go backwards; that’s impossible? And yet, like the couple of nephews who visited on the weekend said, “He seems to be improving!”

Of course, in physiological terms, Anthony is not improving (i.e. although occasionally still able to walk with the use of a walker and the help of two carers, he is mostly immobile). But his cognitive wit, his innate positivity, and his unique grin, all seem to be returning.

My determination to spend most of every day with Ants, usually sitting on the arm of his armchair so I can put my arm around his shoulders, has certainly improved his mood. Not that he is ever in a bad mood anyway; he is one of the most even-tempered people I have ever known, but I now wonder if the regularity of my visits and the habitual things I do/say on arrival are making him happier. Another factor is that my own mother visits Anthony when and if I can’t get there and that, too, is a regular occurrence.

Currently, this is the pattern of our exchanges:

Me (entering his room at 11amish): DARLING!

Anthony (slow smile): It’s you.

Me: Move over so I can sit next to you – hurry up!

Anthony: You need to brush your hair (he always says this!)

Me: You always say that – shut up! Maybe I should get the haircut you’ve just had?

Anthony: The hairdresser kidnapped me.

Me: Well it looks good, Ants – very distinguished! Okay so let’s put our show on before lunch arrives.

Anthony: Don’t you have to go to work?

Me: Not today.

Anthony: So how much money is in the bank? (He always says this too).

Me: Stop worrying about money – there’s plenty – tens of thousands, and that’s all thanks to you!

Anthony: I love you so much, Jules.

I am beginning to think that this daily banter, the habit of watching a show, eating lunch together, regular visits from my ma and other relatives and friends, might be the reason this amazing husband of mine seems to be improving!

Anyway, I suppose I should stop wondering about all of the whys of this weird and wonderful experience and just be grateful.

55 Comments »

“I’m gonna love you like I’m gonna lose you….”

There are many lines in this song https://www.youtube.com/watch?v=DC8FsIdVi9Y that echo one of my many recurring dreams about Anthony and me.

When I last posted, I described a dream where Ants had miraculously recovered; now that is definitely a beautiful dream.

A less beautiful, recurring dream is the one about death. In this dream, Anthony is dead and my dream-self is grief-stricken. But then my real-self wakes up from the dream and realises that he is alive after all. Many of the lyrics of the this song really got to me and are as follows:

I found myself dreaming…
Split second and you disappeared…
Wake up in tears with you by my side…
Breath of relief when I realised…
Whenever we’re standing…
No, we’re not promised tomorrow

Ming of course is not at all keen on either listening to, or reading, the lyrics of this song and, now that he has become musically superior to me, he likes to throw me his opinions:

It’s soooo repetitive, Mum!
It’s so cliched – oh, Mum, you can’t possibly like this song!
NO I DON’T WANT TO HEAR ABOUT YOUR ROMANCE!
Yes, let’s have a chat about love … I like this girl who….
NO I DON’T WANT TO HEAR ABOUT YOUR HEARTBREAK!
I’m off to my shed now, Mum. Love you!

I think I might just listen to the song one more time before I go to bed because I don’t care what the Ming says, this has become my song for Anthony.

32 Comments »

The Good Wife

The Good Wife is an American television series that began in 2009 and is still going! https://en.wikipedia.org/wiki/The_Good_Wife

Now that Anthony and I have finished watching the British version of House of Cards, I decided to go shopping for something just as lengthy and discovered a box set of umpteen episodes of The Good Wife so I bought it.

It’s a great genre for Ants – legal drama, no blood, attractive actors of both genders, recognisable characters … ah and that’s where it gets interesting.

Okay, so we are into around our fifth episode of Season 1 of The Good Wife and there is a scene that triggers a memory for Anthony. He says something so I hit the pause button:

Me: What did you say?

Anthony: She used to be married to Alf.

Me: Who? You mean her? (pointing to the frozen screen of the television where the main actor in The Good Wife is smiling).

Anthony: Yes!

Me: Ants, we are watching TV!

Anthony: But I remember her and she was with Alf.

Me: Alf just got married two days ago but not to her.

Anthony: My mistake (sheepish grin). But can you just get the dogs out of the room?

Me: You’re hallucinating, Ants. There are no dogs in the room – it’s just you and me.

Anthony: I believe you but they’re still there.

Me: (giving him a hug) I have never loved you as much as I love you now, Ants.

Anthony: You’re a good wife.

Me: I agree – so can we keep watching our series?

52 Comments »

Photos

Untitled 2

I have now brought almost all of the photos from this house (in frames, albums, and boxes) into Anthony’s room at the nursing home, to sort through. I began to scan some of these about a year ago but then lost the impetus. Well, the impetus is back! It will be so great to scan photos into my computer and get rid of the bulk!

A few photos, taken recently, will take precedence in a possible photo book. Thanks, Ashtyn and Gordon, for letting us hold your beautiful baby boy!

Untitled

30 Comments »

Sundown

When the day begins to close its curtains on the sun, people with advanced dementia often become restless. This kind of agitation is called ‘Sundowner syndrome’ and I’ve written about it before.

Anthony is definitely affected by the syndrome and, by around 4pm, he is quietly distressed and confused. I am adapting as well as I can to the difference between 11am and 5pm; i.e. at 11am Ants is lucid and able to express himself verbally, but by 3pm he sometimes thinks that the television show (at the moment Doc Martin) is actually happening in real life, and by 4pm he begins to descend into such a state of confusion that when I say, “Okay I’m off to get some wine”, he just replies, “Don’t be too long, Jules!”

The domestic and care staff at this nursing home are so wonderful and many have become friends; they all know that it is best to say to Anthony that ‘Jules will be back soon’.

Today I bumped into the wife of a beautiful man who, before he died a year ago, was next door to Anthony. She is elderly too and using a walking frame. Let’s call her Trudy.

Trudy: So how is your husband?

Me: Very confused now … well, you know how it is.

Trudy: You wonder what they are really thinking don’t you.

Me: Yes. You must miss him so much.

Trudy: It’s a year now.

And her eyes filled up.

Anthony and I are so lucky to have each other and he is luckier than most because he has a younger wife who is determined to ensure he is cared for. It is a bit of a unique situation because most of the residents’ spouses are either deceased or struggling with their own health challenges.

When I visited a totally lucid 95-year-old woman today, she expressed so much concern about her 70-ish son that I felt a bit awestruck by her courage and compassion.

Jane: He had to have a shoulder operation.

Me: So when will he be back?

Jane: So what’s your name again?

Me: Julie – you know, my husband is two rooms down. How’s your pain?

Jane: It’s not the pain, I just feel so exhausted all the time as if I’ve been run over by something.

Me: Like a truck?

MUTUAL LAUGHTER

I want to keep writing about this ongoing story of dementia; I want to critique the various interventions that are in place; but I also just want to BE with Ants.

IMG_4596

37 Comments »

Babies

Today, my niece and her husband visited Ants and me in the nursing with their firstborn, my first great-nephew. I also have a great-niece of about 18 months of age who is, apparently getting used to her strange, new, tiny cousin!

IMG_0470

We also visited another of my niece’s auntie’s mother-in-law in a section of the nursing home adjacent to Anthony’s. Everywhere we went there were looks of admiration, surprise and joy from both residents and staff.

Anthony was a bit nonplussed and didn’t even seem to understand that he had, once again, become a great-uncle. We couldn’t put this beautiful new baby into his arms because it probably wouldn’t have been safe due to his PD. Oh well, I got to hold the little beauty momentarily before he started crying, and then I gave him back to my niece for a feed.

I have deliberately left names out of this post for the sake of privacy but just want to express my gratitude to my niece and her husband for bringing their beautiful baby in to see Anthony.

It is kind of weird to be a great-auntie to two babies now but it is also wonderful – absolutely wonderful!

21 Comments »

Day off

I decided to take a day off from visiting Anthony so just texted Ming to visit after work and he texted “Sure” – brilliant!

Instead I have been catching up with laundry and housework and further decluttering. It’s astounding how making myself accountable to Dina is so effective!

The weather is winter warm so at one point I took off my jacket and …
IMG_4546

Well at least it wasn’t a cockroach!

My feeding of wheat to the peafowl and guinnea fowl is deliberately haphazard because there is plenty of ‘food’ for them without the wheat and I don’t like them getting too dependent. Nevertheless as soon as they hear the back door open, they start running towards me – it’s so funny.
IMG_4569

Then there is quite a bit of competition as to who gets to eat first.
IMG_4575
IMG_4586

Yes, I know she looks like Gutsy but she isn’t.

After they’ve eaten their fill, they bask in the winter sunshine.
IMG_4591
IMG_4594

I’m a bit rusty with the photography but wanted to take a few new photos to show the women I’m visiting in the nursing home, three of whom are not in the dementia cottage. Yesterday I visited Gertrude (not her real name) who has only recently become a resident. She has Parkinson’s disease too and she was commiserating with me about Anthony who she said was “so young!” I guess 79-year-old people do seem young to 90-year-old people! At one point we discussed the pros and cons of diseases:

Gertrude: Tell me, which do you think is worse – Parkinson’s disease or that other one? (She pointed to her head)

Me: You mean Alzheimer’s disease?

Gertrude: Yes.

Me: Well Anthony has both now so I’m not sure ….

Gertrude: Both? This isn’t fair for him.

Me: Well it’s not Alzheimer’s exactly; it’s dementia caused by his kind of Parkinson’s disease.

Gertrude: I don’t have that.

Me: No, I can see that! You don’t have the shaking thing either and Anthony is the same.

Gertrude: I’m improving and sitting in this chair is so much better than lying in that bed.

Me: Do you have pain?

Gertrude: Just a bit of arthritis. Nothing much.

Me: I’m so glad. Anthony doesn’t have pain either – such a blessing.

We exchanged a smile and a hug and I went back to Anthony’s room which is in a different section.

Well I better get back to finishing the jobs I need to list as “done” for my email to Dina tonight!

22 Comments »

Dina

I wrote about Dina from Chaos to Clear in previous posts, describing how this wonder woman helped me to declutter and reorganise the spaces inside and outside this house. The process was a twice-a-week visit from Dina, over a period of several months. She/we even tackled the sheds despite the possible presence of asbestos.

IMG_1451_2

During this process, Dina and I became friends. She visited Anthony with me (where we sorted a huge box of old photos and another box of old paperwork), and she even visited Anthony last week when I was away in Perth!

Dina also supported me in a face-to-face meeting with the managers at the nursing home about my desire to continue to visit various residents despite having resigned. Her presence at this meeting ensured that permission would be granted, and gave me the confidence to state that I was already a family friend of many of the residents.

Anyway, this week I suddenly found myself a bit overwhelmed again with a new accumulation of unopened mail, the dregs of clutter I was supposed to have eradicated/given away, and Ming’s stuff here and there untidying my newly tidy house. So I emailed Dina asking her to come back and help with these last jobs.

Then – the next morning – before Dina even had a chance to reply, I emailed her again to retract my request and that I could do it by myself but I needed to be accountable to someone.

Dina emailed me back saying yes and to just imagine she was there looking over my shoulder. So for two days now, I have been reporting back to her about what I’ve done, and she has been encouraging me (all of this via email). This kind of accountability has worked wonders in terms of motivation!

Depression (yes, I have it) sometimes means that the person afflicted wastes days worrying, and nights dreaming, about tasks that only take an hour or so. The fear of those tasks is, of course, irrational, but when you are in the throes of depression and/or anxiety, even the simplest of tasks can be overwhelming.

I haven’t admitted to many, including Dina, that I battle with depression but I’m sure she realises and I so appreciate her kindness and patience with me. And her incredible support beyond the call of duty!

Who would have known that when I simply googled “chaos” I would find such a beautiful friend. Thanks, Dina.

37 Comments »

“Illness separated”

IMG_4288

Yesterday I went to see the people who help people like me to access employment and/or volunteer opportunities. I thought it was about time I got out of my lady-of-leisure mode since resigning from my job at the nursing home several weeks ago.

The woman I spoke to (I will call her Sue) pulled up my records and I misheard her saying that Anthony and I were separated.

Me: No, no, we aren’t separated!
Sue: Illness separated?
Me: Oh, yes, I see. He’s in a nursing home.

Anyway, Sue was very helpful and asked me to come back today with various bits of paperwork that would help to get me back ‘into the system’.

Even though the phrase “illness separated” isn’t new to me, I hadn’t heard it for a long time so it shook me up a bit. Of course there is no other way to describe our situation in terms of the red tape but it still sounds weird, especially the “separated” bit. Oh well.

The views from Anthony’s nursing home window sometimes look uncannily like home and yesterday he ‘saw’ his nephew milking the cows outside and wanted to help. I looked out the window and tried to see what he was seeing (his hallucinations are, thankfully, happy ones mostly).

IMG_4282

Me: It’s okay, Ants, he’s just about finished milking.
Anthony: What about the fences?
Me: Ming’s taking care of all that.
Anthony: How much money do we have in the bank?
Me: Lots, thousands!
Anthony: Okay.

I think we might fall into the category of “illness inseparable” now but that wouldn’t tick the boxes ha!

30 Comments »