jmgoyder

wings and things

Apr 3

Telephone traumas

by jmgoyder

Over the last six months it has become increasingly difficult getting hold of Anthony on the phone. He has one of those big mobile(cell) phones with big digits but he is now too confused to answer it. When it rings, he either doesn’t realize it’s a phone or else he presses the wrong button and ‘hangs’ up immediately. Until recently I was able to reach him around three times a day if I kept ringing (especially on days I couldn’t get into town to see him) but now I am lucky to reach him once per day.

So, at the suggestion of a couple of nephews, today I cancelled his mobile(cell) phone account and spent an hour on the phone to Telstra to set up a landline to his room. I had already bought an old-fashioned handset with enormous numbers on it and tomorrow a technician is coming to the nursing home to get the line working. Poor Anthony is (hopefully temporarily) confused about what is going on as I did all this Telstra business on the phone from his room in the nursing home.

It would be so wonderful if he is able to manage answering this new phone because then all the people wanting to ring him would be able to cheer him up. The disadvantage, of course, is that if he is sitting outside in the sunshine (often) he won’t be able to answer it, but, with winter coming, he is more likely to be in his room anyway.

Fingers crossed!

Family Friendship LOVE STORY Parkinson's disease

40 Comments »
Apr 2

A Sunday drive

by jmgoyder

Going for a drive with Anthony, which I now do quite often, has proved to be a great success. If I am doing errands in town, I take him with me and he sits in the car while I do banking, post office, grocery and other jobs. He loves sitting in the car and watching passersby and it is a way of being together that doesn’t entail the heavy lifting of him in and out of the car except for when I collect him from the nursing home and take him back.

By lifting, I don’t mean lifting the whole of him but, in order to get him out of the car, I have to help him twist around, then grab my hands, then we do a 1-2-3 attempt to get him standing up. Then he can usually walk with the walker but sometimes not so I have to get the wheelchair. (I have now bought one that can be folded one way or the other). Getting him into the car is easier; I just use my bum to push his bum into the seat, then I lift his legs in if he can’t, then I get into the driver’s side and sort of shove him over because he has become very crooked and leans over to one side. Then I put his seatbelt on and we’re off!

I have decided to do this more frequently, rather than bringing Anthony home or taking him out to eat, or visit people, because it is so much easier on my back than the constant transfers necessary in those sorts of outings. On Sunday we went for a long drive down to the small, picturesque town where he was brought up, Balingup, and I learned a bit of a hard lesson in that I suggested we go to the pub there for a drink and some fish and chips. Ants was more mobile than usual so he managed the walker, very slowly, in and out of the pub, but once seated, he kept nearly falling off the chair because he leans so badly to the right. I had to sit on that side of him and keep pushing him upright (not particularly gently I might add!)

Here is our conversation while we ate fish and chips:

Me: Sit up for God’s sake!
Ants: You’re so rough, Jules.
Me: Wipe your moosh – you have fish all over it!
Ants: Give me the dribble rag.
Me: You had it – argh, it’s on the floor!
Ants: I have to go to the loo.
Me: What? Oh no!

After a very strenuous and slow trip to the loo with me, we got back to our table to find the fish and chips cold of course, but the beer was good. By then, however, I just wanted to get Ants back to the nursing home because I could see he was faltering (like clockwork 3pm), but he didn’t want to go.

Ants: But I’m having a good time.
Me: Too bad – I have to get you back before dinner.

It took around 20 minutes to get Ants out of the pub and into the car and we were off again! But then another problem – our thermostatic incompatibility – occurred.

Ants: Jules, I’m freezing. Put the heater on.
Me: What? It’s boiling in this car already!
Ants: Is there a blanket?
Me: Okay I’ll bring one next time, wrap you in it and put you in the boot (trunk).
Ants: You’re so sexy when you get mad.
Me: Get your hand off my knee – I’m driving!

So for the hour it took to get back I had the heater on Ants and my window open so I didn’t suffocate or sweat (I am avoiding perspiration at all costs due to the stupid pompholyx).

Long story short: I got Ants back into his room at the nursing home and comfortable in his chair, put the ABC channel on his TV and then told him I was going home and would see him the next day.

Ants: Where are we staying in Balingup?
Me: No, I’m going home to Bythorne.
Ants: So where am I?
Me: Wattle Hill – the nursing home.
Ants: Who is going to look after me?
Me: The nurses.
Ants: But they always kidnap me.
Me: No that’s just your Parkinson’s confusion – nobody is kidnapping you, Ants!
Ants: Are you sure?
Me: Yes, you’re safe and in good hands and I’ll see you tomorrow.
Ants: Give me a hug.
Me: Okay, and I love you so much babycheeks!

I got home around half an hour later and Ming asked why I was so exhausted and, when I told him about the day, he suggested that, from now on, I just do the drive thing and not get Ants in and out of the car so much.

Ming: I don’t get you, Mum. Why do you keep bothering?
Me: Because he’s my husband and I love him.
Ming: But this is not good for your happiness – you deserve it way more than Dad!
Me: Why?
Ming: Because he’s old and you’re still young!
Me: So does that mean you deserve to be happy more than I do because you’re very young?
Ming: Of course!

Okay – a few lessons learned here (I think!) One thing for sure is that our car is going to accumulate a fair bit of mileage in the coming months!

Happier days:
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Family Friendship Grief Happiness LOVE STORY Parkinson's disease

58 Comments »
Apr 1

Blog blessings

by jmgoyder

I began blogging in November 2011, with no clear intention other than to write something every day, which I have for the most part. The subject matter meandered from birds to Anthony’s Parkinson’s disease, to Ming’s teenage-hood and scoliosis, to our personal struggles. I dabbled in novel and romance writing, briefly promoted my book about Alzheimer’s disease, attempted some poetry, began to write about Anthony’s and my love story, posted pictures, and generally wrote a whole lot of this-and-that.

In view of the miscellaneousness of my posts, I suppose “Wings and Things” isn’t a bad sort of blog title so I’m sticking with that because it allows me to meander in the usual way. This is obviously not good for the stats as themed blogs get more ‘hits’ but, despite wanting to make more people aware dementia sufferers should be treated with more respect, I don’t care any more about the stats.

One of the things that has astounded me about my blog journey so far has been the incredible friendships wrought (with people I may never meet in person), and the mutual support system enabled via WordPress. The blogs I subscribe to are an eclectic mix of bird, photography, illness, writing, grief, dementia and philosophical blogs (to name a few) and it is often very difficult to keep up. The good thing is that most bloggers understand this difficulty and don’t mind if you don’t read their every word/post – phew!

I would never go to a support group, I already have enough friends in my non-blog life, and I am not naturally gregarious, so I am rather astounded at how much I have come to depend on the bloggers with whom I have become close – an extraordinary community made up of some of the kindest people I have ever come across. I also enjoy offering my own friendship and support to these fellow bloggers and this has become a meaningful part of my life.

This blog has also connected me better to my already-there friends and family, sometimes disconcertingly. For example, I said to my friend the other day, “Guess what happened yesterday?” and she said, “I already know, Jules – I read your blog.”

Oh!

So, in the spirit of miscellaneous gratitude, here is Diamond, our shyest goose….

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…. saying thank you with me!

Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

53 Comments »
Mar 30

A very quiet house

by jmgoyder

As many of you already know, Ming lives in an old shed we began to renovate for him years ago (before Anthony went into the nursing home). It has been a very long process but also very exciting. Once it was finally finished, with a new paint job, lino on the floor, windows put in, electricity connected and his bed moved out there (around six months ago) he began to sleep out there regularly. But it wasn’t until recently that he moved all of his stuff out of his old bedroom (in the house) to the shed. Then, two days ago, he moved our old refrigerator in there too so he now has that and a microwave, so he can be (sort of) self-sufficient when it comes to meals.

Ah, meals, yes – a contentious issue for Ming and me. You see he has always been extremely fussy with food. No, let me rephrase that; he has always been extremely FUSSY with food! Let me exemplify. As a newborn, he wouldn’t breastfeed or take a bottle without our coercion (Anthony’s confidence that he’d had this problem with calves, and he could fix it, was unfounded and Ming actually lost some of his scrawny birth weight in his first month of life). He simply wasn’t interested in any sort of sustenance full stop. That first summer of his life I had to actually syringe water/milk/custard/mashed banana into his sweet, rebellious little pursed lips. It was an absolute nightmare.

Long story short, he survived on the bare minimum for years. During toddler years it was crackers and orange juice and sometimes butter, but nothing else. Eventually I took him to a naturopath who did some magic and he got a bit of an appetite but he is still (at 20) one of the most unhungry people I have ever come across. He just doesn’t seem to have a normal appetite reflex thingy – a weird anorexia? Mostly, he doesn’t think to eat, meals are haphazard and then suddenly he will eat four steaks in five minutes.

Needless to say, Anthony and I gave up when he was a kid and just let him ‘graze’. And now that he isn’t a kid any more, he either rejects meals I prepare or says he isn’t hungry. So, a few weeks ago, Ming and I made a decision that has actually saved my sanity (and probably his). When it comes to food, he fends for himself. He buys and prepares his own food and I am not to interfere.

Well, since I don’t eat that much anyway, this has come as a bit of a relief. But it is so hard to let go of 20 years of trying to feed the brat and let him fend for himself.

But it’s so weird and so quiet now and it only hit me tonight. With Anthony now in the nursing home, and Ming in his shed, there is no need any more for me to buy, prepare or cook food for others, so there is no sound of something simmering on the stove or in the crockpot and, because there is nobody in the kitchen any more, the television is off, it is very quiet.

All those years ago, when I first met Anthony and his mother and family, this was the noisiest house I had ever entered – loud voices, radio blaring, eggs and bacon sizzling, kettle boiling, Aga thrumming, dairyhands eating, and big, boisterous Anthony yelling for more toast-and-marmalade please.

So now, with all of that fading into history, and Ants in the nursing home, and Ming in his shed, and food no longer being something any of us share any more, the house is deathly quiet and strange and a little bit unfamiliar.

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

46 Comments »
Mar 28

Stress question

by jmgoyder

Why is it that some people cope better than others with stress? This has always mystified me. How?

For example: two people can experience the exact same grief, joy, shock etc. and one will take the experience in his/her stride, and the other one will be emotionally overwhelmed. The former person is the one who organizes the funeral, party, and/or contingency plan. The latter person, bathed in grief, joy, shock, may not be able to get out of bed in the morning.

Lately, I have felt a mixture of these two responses to sudden change and I have to admit that, mostly, I am the latter person. No matter how much I want pragmatism to beat the hell out of misery, it doesn’t always work and, when I took Ants for a drive today and his head bent to the left side (Parkinson’s), and he kept forgetting, then remembering again (due to my prompts haha!) that is was our 21st wedding anniversary.

Perhaps the answer to the stress question is this: Accept what is; make the most of every single hour of every single day; and get back on that bicycle!

It has been a difficult few months so thanks to all friends for encouraging comments to me and my extended family. Ming’s court case (adjourned three times now) is happening mid-April and there is a bit of hope that his dangerous driving charge might be downgraded thanks to the letters from my brothers’ families to the police.

Oh to be a duck!

IMG_3773

Animal blogging Family Friendship Grief Happiness LOVE STORY

79 Comments »
Mar 20

“I have accepted my Parkinson’s.”

by jmgoyder

Today I met one of the Anglican priests from my mother’s church (well, it’s my church too but I hardly ever go), because I had asked her to pray for me and my pompholyx and for Ants too. She is a beautiful person about my age who came out to the farm a few days after Ming’s car accident and prayed for us and for the whole family, and her name is Sarah.

We met in the parking lot of the nursing home at 1.30pm which was, coincidentally, the same time my mother was planning to meet me to visit Ants. I would have gone into the nursing home with Sarah but unfortunately, after showing her my hands, I burst into tears so had to ring my ma and say Sarah and I would do the praying thing outside and come into the nursing home presently.

So Sarah and I found a seat outside and she prayed and anointed my hands and blessed me while my nose dribbled as I stopped crying. Neither of us had a tissue so I had to wipe my nose on my shirt before we joined my ma and Ants.

They were sitting outside in a little garden area and, after the introductions and greetings, not knowing how much time Sarah had, I got straight to the point.

Me: “Ants, remember how Sister R. used to come over and anoint you with her holy oil?” (Sister R. is a Catholic nun who has been our friend for decades and, despite Anthony not being the least bit religiously inclined, he used to love this).

Ants: “Yes.”

Me: “Well Sarah can do that now.”

Sarah: “Do you want me to, Anthony?”

Anthony: “Mmmm.”

Me: “Yes.”

So Sarah prayed for Ants and anointed him and then we all sat back and had a conversation.

We talked a lot about life, the accident, our kids (Sarah has a daughter nearly the same age as Ming), my mother’s unfortunate collision with a glass door the other day, and my hands. Then Sarah asked Anthony various questions – about his childhood, his siblings, Ming and so on – that elicited answers. I admired her skill at drawing him out because his conversational skills are now very hesitant. Sarah was also very good at waiting silently for his response – fantastic!

Then, in answer to a question about something entirely different, Ants suddenly said this: “I have accepted my Parkinson’s and I still have the power to swear at people I don’t like.”

Oh how much I love this man!

Thank you, Anthony.
Thank you, Mother.
Thank you, Sarah.
Thank you, God (but only if you heal my hands and foot).

On the other hand, maybe I will have to accept my Pompholyx, just as Anthony has accepted his Parkinson’s disease.

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

62 Comments »
Mar 17

Taboo topic: poo!

by jmgoyder

We all do it but, after the age of around 4 or 5, it becomes a bit taboo to talk about poo. It is an intrinsic part of everyday life but is clothed in secrecy. In nursing homes and hospitals, however, the activity of the bowels is all-important: “Have you used your bowels today, Mr Smith?”

Years ago, when I worked in a hostel for multihandicapped (I don’t know if that is the politically correct term any more; suffice it to say that all of the residents were people with both intellectual and physical disabilities), we had a chart in the shared bathroom in which we had to record daily poo production in cups. Don’t get me wrong – we didn’t use cups, but we had to look at what each person produced and imagine how many cups it might equal.

As a nurse and/or care-giver, you get so used to poo that cleaning it up becomes more of a tedious than a revolting job. At least now there are plastic gloves and pull-up adult nappies which makes things a lot easier on the carer and the sufferer.

I don’t want to personalize this into an Anthony-and-Julie situation here; I just want to speak generally in a way that kind of (hopefully) demystifies this particular type of incontinence and makes it easier to cope with.

The first time it happens it is, of course, humiliating and ghastly for the poo-victim and quite frightening for the carer. Above all, do NOT make the person feel worse than they already do. The next thing you need to do is to remain extremely calm and pragmatic. Just do what you have to do as quickly as possible and try to remember your 5-year-old poo jokes. The ability to hold your breath, and the invention of room deodorizer, are good additions to the situation.

My point: being able to use your bowels means you are still a living, breathing, eating, functioning person, so pooing is a very good thing. So rejoice in the poo! Don’t be afraid of it! It is normal!

It can also be a great conversation starter: “Remember the time when you ….?” Raucous laughter may sometimes accompany these conversations, which is a hell of a lot better than misery.

Just saying…. it might be you one day.

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

69 Comments »
Mar 16

Guilt

by jmgoyder

I thought it was time I owned up to the fact that I am definitely not the wonderful, caring wife all of the time. The reason I am admitting this is because hopefully other care-givers will forgive themselves for the things I have to forgive myself for.

Anthony’s visits home are becoming more difficult and, consequently, less frequent. For example much of today was spent in the world of ablutions. With Parkinson’s disease, everything slows down and continence is a problem. Luckily, Ants (who looked after his own mother when this happened) doesn’t get the least bit embarrassed any more by the ‘accidents’ and I try my best not to be impatient and/or revolted.

On our second slow trip to the bathroom, I growled at him, “This better be the last bloody time, Ants!” And, to my shame, I also said, very impatiently, “Just walk, Ants – it’s only two more steps to the loo – WALK!” But, as soon as I raised my voice, he whispered, “Sorry, Jules” and my heart broke and I became gentle again.

After the toilet adventures, we were all back in the kitchen while I prepared lunch – another ordeal because Anthony isn’t good with cutlery now and makes a terrible mess which distresses him. Also, he can’t swallow properly so drools a lot (we always have a ‘dribble rag’ nearby) – I escaped to my little office at the back of the house. I should have been in the kitchen with Ming and Ants but, even after just a couple of hours, I wanted to escape.

Ming wanted to escape too and it was almost as if he and I were doing shifts with Ants. While I dealt with the ablutions, Ming escaped to his shed and, while he and Ants ate lunch, I escaped.

I am not sure what I am escaping from but the diminished presence of Anthony seems to suck the energy out of me. We sit together and there is NO conversation most of the time. He is silent, blank-faced and so bent over that his face nearly touches the table.

One of his favourite shows was on TV (Doc Martin), but he can no longer focus or understand what is going on, so, at one point, I turned the volume down so we could talk but by 2.30pm he was beginning to visibly wilt. At that point, Ming came back from his shed again and I whispered, “Can you take him back now? I can’t stand another minute of this nothingness.”

So Ming has just taken a reluctant Ants back to the nursing home and I am wishing that I had hugged him more than three times. His Parkinson’s is beginning to win over the medications now so he is increasingly immobile – it will be a wheelchair soon. Then he will be bedridden. Then he will have to be tube-fed.

Yes, life is a good thing and today had its good moments as well, of course, but to die sooooo slowly from this ghastly disease is a form of torture – not just physical, but emotional.

I love Anthony so much but I couldn’t wait for him to be gone again and I will have to forgive myself for that. Again and again. Guilt.

blogging Grief Happiness LOVE STORY Parkinson's disease

73 Comments »
Mar 15

A conversation with dementia

by jmgoyder

I realize that the title of this post sounds odd but sometimes, in my conversations with Anthony, it is as if I am talking to two people: 1. Anthony-familiar (Ants); and 2. Anthony-with-dementia (AD). Here is a rendition of today’s conversation in the nursing home.

Ants: When did you get here?
Me: Right this minute.
Ants: Where did you come from?
Me: Home.

AD: Ming and I got all of those calves rounded up and into the paddock in front of the house. They are all in good condition.
Me: Oh! When did you do this?
AD: Yesterday, after you left. We also fixed the fence.
Me: That’s fantastic – thank you.
AD: You don’t need to thank me – it’s my job.
Me: Yes, but it’s a relief to know all of the calves are okay and the fence is finally fixed. I was a bit worried.
AD: Ming is a good worker.
Me: Well you and Ming are a great team. It’s wonderful that you are teaching him how to do these things because I wouldn’t have a clue.
AD: We just need to fix up the other boundary fence now [trying to get up out of his chair]
Me: Well Ming isn’t here now so can we wait until tomorrow when you come home?
AD: Okay.

Ants: Bloody rotten about Ming’s back.
Me: Well your back isn’t the best but look how well you coped.
Ants: I think his is worse. He could have done anything if he didn’t have that back.
Me: We just have to accept it now, Ants – Ming has.

AD: I’m still going to need his help though, on the farm.
Me: Of course!
Ants: Tomorrow?
Me: Yes.

Tomorrow is Sunday so I will be picking Ants up around 10.30am to come home for the day, and Ming will take him back to the nursing home in the afternoon. Ants has requested smoked salmon and avocado sandwiches so that is easily done.

I would be lying if I said I am looking forward to tomorrow because, no matter how much I want Ants home, and no matter how much he will love being home, it is going to be an extremely difficult day for Ming and me. There will be a lot of lifting, toiletting, confusion, frustration, barely restrained angst (Ming), and barely restrained sorrow (me). By 3pm Anthony will begin to falter and by 4pm he will be unable to walk at all so I will have to get Ming to take him back to the nursing home at 3pm and Anthony will get upset.

On the other hand, perhaps I should just alter my thinking a bit. We will have four hours together, the sandwiches will be delicious and we will give Anthony a million hugs. In fact, I reckon the whole hug thing is underrated because, during today’s conversation, I decided to give Ants a hug every time it got a bit too confusing for me and his big/small arms around me were much more powerful than any words.

I will just have to tell Ming to go easy on his habit of hugging Anthony rather ferociously because it scares the hell out of Ants!

blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease

44 Comments »
Mar 14

Dementia and bewilderment

by jmgoyder

Yesterday afternoon Ming and I visited Anthony at the nursing home in the late afternoon. I had blue cheese, crackers, olives, pate, pistachio nuts and ripe plums. We had a bit of a feast together and everything seemed okayish except that Ants was quite confused (which is normal after 4pm).

Then, when we went to leave, I kissed and hugged Ants and told him I loved him but his face was stony. Ming lingered a little longer with Ants and told me later that Anthony had said, “I don’t know why I love her any more.”

Of course I was very hurt to be told this but I explained to Ming that Anthony has these extremely lucid moments in the late afternoon (in amongst the confusion of not quite knowing where he is, temporally and geographically) where he feels/KNOWS he has been abandoned.

“Who will help me get to bed?” Anthony had asked me earlier.

“Where am I?”

“Will you tell the somebodies that I am here?”

“But where are you living?”

I am much more patient with Anthony’s confusion than Ming is – of course – and Ming finds it difficult to match this very sick, old man with the guy I fell in love with all of those years ago. Telling him stories about the way his dad used to be helps a little, but not much, not any more. Stories about Anthony’s robust energy, laughter and farming prowess fall short for Ming because he has no memory of the Anthony-before-illness. None.

Sometimes I wish I could give Ming my own memories of Anthony but I can’t.

And yet, when I see Ming talking to anyone and everyone, and being the life of the party, and taking over various responsibilities on this farm, I see Anthony all over again – the way he was – and his Ming clone buoys me up!

Anthony’s bewilderment is mine too and it is very hard to realize now that he thinks I have abandoned him. “I don’t know why I love her any more.”

blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease

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