jmgoyder

wings and things

Parkinson’s Disease Dementia and FEAR

I don’t think many people recognize, and acknowledge, the kind of fear that a person with any kind of dementia can experience. Anthony has PDD but can still vocalize his fears, especially after the sun goes down (Sundowner’s syndrome).

About 15 minutes ago, I rang him on his new phone and he actually picked up (doesn’t always remember how) and he was frightened and utterly delusional, thinking that he was at his brother’s house and that a storm had destroyed it, and asking me to come and rescue him. His words were garbled and frantic. I tried to calm him down, then told him I would ring the nurse but he said I wouldn’t be able to get hold of a nurse because of all the workmen were around and it was dangerous.

So then I rang the nurse and told her and she said she would go and check on him and get back to me. There is now an anti-anxiety drug that has been prescribed for these occasions so I reminded her of that.

Now I am waiting for her phone-call. As I wait, I think, with great distress, about how, from time to time, Anthony becomes absolutely terrified at night. PDD and, paradoxically, some of the medications used to treat it, can cause hallucinations, paranoia, confusion of space and time, and fear.

Anthony’s bouts of terror usually only last about half an hour which is the same amount of time it would take me to drive into town and ‘rescue’ him.

When is scared like this, he becomes more articulate despite the fact that what he describes isn’t real. Very soon, I think, he will not be able to talk at all, so it is very important for me that I understand his fear, and try to reassure him. I was in this afternoon, seeing him, and there was no indication he might have one of these ‘episodes’ despite the fact that he was very confused.

I am not just spilling my guts here – I am also saying that if your loved one has dementia but has ceased to speak, they might have the FEAR thing too so your voice on a phone, your visit, your touch, a hug, a cake, a blanket or a cup of tea might just alleviate that.

My heart breaks for those suffering this kind of fear in silence. I just spoke to the nurse and Anthony is apparently okay again and he is being put to bed but what if he is still really afraid? I am so worried, but I won’t be able to see Ants until tomorrow morning by which time he may have forgotten the fear. Oh I hope so.

He is, and always will be, my hero.

[ps. not keeping up with other blogs atm – sorry]

27 Comments »

Parkinson’s disease dementia and life expectancy

Okay so I googled this today with a mixture of guilt and curiosity. In watching Anthony’s physical and mental abilities diminish over the last year, I have become increasingly concerned that (a) he will become very depressed; (b) his confusion will cause him anxiety; and (c) he will suffer physical pain.

Some of these things are already happening of course but, so far, he is not in physical pain and – remarkably, in my opinion, – is not depressed in any clinical sense. He is plagued by bouts of immobility and incontinence but we have both accepted these aspects of PD. Recently, however, the confusion of dementia has caused us both anxiety. For example, if he is home for the day, he will often talk to Ming and me even when we aren’t in the room. And sometimes, in the nursing home, he will think we are all home on the farm, and can’t understand where Ming and I are going when we leave him.

It is over seven years now since Antony’s PD diagnosis, and just over two years since he has lived in the nursing home. He is sad a lot of the time, mainly because he misses me, Ming and home, but mostly he is resigned and heroic in the way he has accepted now that he is too heavy for a single person to lift (in and out of bed etc.)

As much as possible, I have tried to inject a daily dose of joy into our equation but sometimes that isn’t enough and visiting him yesterday with my youngest brother and his youngest son, although wonderful, gutted me when we had to leave him, leaning on his walker, waving goodbye, with two nurses ready to take him back to his room.

How long will this go on? I catch myself wondering if sudden death would be better than this excruciatingly slow journey into an illness that has no cure, that ends with severe dementia, and that robs us of the energy we once had to adore each other. Of course the love is still there – maybe more than ever – but it is no longer a gleeful, adventurous, exciting love; it is more like a needy, obligatory, remembered love – not quite real in the here and now.

My grief and love for Anthony are in equal proportions and every single day it’s as if they draw straws to see which one will win – usually love, but not always….

27 Comments »

The littlest peachick

Yesterday morning, just outside the back door, you took bread from my hand for the first time,
even though you are the littlest peachick.
Surrounded by your peacock father and his brothers, surrounded by your peahen mother and her sisters,’
you raced all of them and won each piece of bread I tossed onto the ground,
even though you are the littlest peachick.

Your big sister didn’t stand a chance and you gobbled all of her bread bits until I gently brushed you aside,
littlest peachick.

This morning, just outside the back door, I saw you again, but this time you were all alone.
I thought you were a pile of leaves blown together by the wind,
until I saw your little legs pointing upwards like the bare, autumn branches of a bonsai.
I went outside and approached you cautiously, not wanting to see what I already saw, that you were very dead,
my littlest peachick.

Your mother, big sister, and all of the others, came over very quietly to look at your dead body.
Then, just as quietly, they all stepped back, turned around and went away,
my littlest peachick.

IMG_3666

This morning, the farm is strangely silent. Your family, usually so noisy and boisterous, has withdrawn from the vicinity of your death.
Out in the paddock, they nibble halfheartedly at the grass, looking up and around frequently, as if sensing danger, bewildered, as I am,
at your mysterious death,
our littlest peachick.

I see you now, from the corner of my heart’s eye,
high up in a tree that is so beautiful that it has no name.
You are no longer little; you are huge and your rainbow wings span the sky as you fly in and through the marshmallow clouds
of where you are now.

The littlest peachick.

34 Comments »

Anzac Day

Today is Anzac Day (fyi http://www.awm.gov.au/commemoration/anzac/anzac-tradition/) so I went into town this morning to join Anthony for the nursing home’s memorial ceremony. Many of his forbears fought in various wars and he has always become very emotional, as his mother used to, on this day of remembrance, so I wanted to make sure he was okay.

I was surprised to find that he wasn’t particularly interested. The ceremony was an abbreviation of those held elsewhere, probably due to having to fit it in between breakfast and lunch routines, and the usual under-staffing on a public holiday. I sat next to Ants with my hand on his arm during the service but now that he is so bowed over (partly due to Parkinson’s disease and partly due to his spinal condition) he no longer looks up so I had to kind of hold his head up when the flag was raised.

By 11am we were back in Anthony’s room and he was very wobbly (‘wobbly’ is the term we coined some years ago to describe what happens when PD is in full force; his eyes become glazed, he begins to dribble, and he can’t move, talk, focus without prompting). A nurse came in at 11.10am to give him his 11am pill but none of his meds seem to work like they used to so I had to feed him his lunch using a spoon. Like all of the residents in the high care wing of the nursing home, he has to wear a bib. We bantered a bit (well I did) about me having to feed him like a baby and that garnered a small smile from him.

By 1pm, I wanted to go home to my chores and said so. Anthony briefly rallied asking why he couldn’t come too and (for the zillionth time) I explained that, as it was already the afternoon, he would just get more wobbly and too heavy for me blah blah, and he gave me the usual stony look. I then reassured him that I would bring him home tomorrow morning because my youngest brother is visiting with his youngest son.

Tonight I rang Ants at about 6pm and he answered it (yay!) but I had to shout because he has forgotten that he has to hold the receiver to his ear, despite how many times I have showed him how. I could hear his voice saying ‘hello’ but as if from a great distance, so I yelled, “PUT THE PHONE NEXT TO YOUR EAR!” He finally did so and this was our conversation:

Me: It’s ME, Julie, your wife!
Anthony: I don’t know where Julie is.
Me: I’m Julie – it’s me, Ants!
Anthony: Oh, Jules ….
Me: I’m just ringing to say good night.
Anthony: Tonight?
Me: I’m ringing to say good night, Ants.
Anthony: Oh that’s very sweet of you.
Me: So I’ll see you tomorrow morning, okay?
Anthony: Where are you?
Me: I’m home.
Anthony: Is Mum with you? (He meant his own mother who died decades ago).
Me: No, but Ming is. So I’m saying good night and I love you.
Anthony: I … you … bye….

Next year will be the 100th anniversary of ANZAC day and I wonder if Anthony will still be here. If he is, I know for sure that he will not remember what the day commemorates because once dementia kicks in, it kicks hard and that is what is already happening.

The photo below was taken by Jane, one of Anthony’s nieces, at his 75th birthday party here, over three years ago. He doesn’t look like this anymore.

Anthony listening to speech

LEST WE FORGET.

22 Comments »

Macular degeneration

My mother doesn’t like to be written about because she is very private about her life, but, as I’m not so private, I would like, here, to salute her for the following:

When my mother was just in her 40s, Dad died of a heart attack. Not long after that, she developed breast cancer and had to have a mastectomy and chemotherapy. Then, about ten years ago, she began to lose her hearing. Two years ago, she fell and broke her hip and then, just as her hip had healed, she fell off her bicycle and broke her pelvis and wrist. And now she has macular degeneration and has to have six-weekly injections into her good eye to prevent it from getting worse (I took her today for one of these).

Despite all of these situations, my mother is an absolute inspiration to all of us and is as active now, at 79, as she was when Dad died and before. She will do anything for anyone and her volunteer work is beyond belief. She has more energy and compassion and generosity than I will ever have!

After the car accident, six months ago, my mother and my brothers’ families had to deal emotionally with repercussions, injuries and enormous anxiety and yet she always remained calm and in control and absolutely supportive of all of us. My own pain of regret had nowhere to go except to my mother and she helped me to figure out how to keep going. (AND she visited Anthony on all of the days I couldn’t when I had the rotten pompholyx condition).

This kind of mother is rare – the kind of mother you would dream of having – and it doesn’t seem fair that she would now be afflicted with macular degeneration, but she is. A fact. Life. Age. Hardship.

And what is Mother doing tonight? She is probably going to ignore the pain in her injected eye and work on the scrapbook she will give Ming when he turns 21 next January She has done this for each of the grandchildren preceding Ming and she has done it for my brothers and me when we each turned 50.

She is funny, clever, artistic and an absolute legend. And she is NOT old!
She is always NEW!

My/our mother xxx

67 Comments »

Easter Saturday, Parkinson’s disease and a picnic

Today, Ming and I picked up Anthony from the nursing home, took him out to my mother’s place, picked her up, then went down to the foreshore near her home for a picnic. It was a perfect day, sunny, but with a breeze, so we grabbed some takeaway (sushi and chicken rolls) and managed to find a gazebo right near the water. Now that Ming’s back has half healed from his second spinal surgery, he insisted on doing all of the maneuvering of Ants in and out of the car and the walker/wheelchair we recently bought, and, except for when we picked Ants up, he was pretty mobile – bonus!

After our main food, my mother and I went to the nearby shop and bought ice-creams for dessert, two banana paddlepops for Ming and me, a magnum for her and an ice-cream sandwich for Ants (he loves these). We were surrounded by seagulls of course and Ming, like a little boy, loved chasing them away.

Then we went for a long drive around the estuary until we got to a semi-hidden beach where Ants said he wanted to have a swim. Having never swum in his life, this was a funny request, so we simply drove back slowly, dropped my mother off at her house, then headed back to the nursing home.

On the way back, Anthony became even quieter than usual, knowing, I guess, that the outing was nearly over, so I turned the car radio up and the three of us bopped a bit, with Anthony tapping his leg and Ming complaining that the radio station was too mainstream and that Ants and I had no taste – brat!

Once we had delivered Ants back to the nursing home room, and got him comfy in his armchair, he was showing signs of fatigue, confusion and the kind of misery that sometimes hits him when we depart. He loves the way Ming and I banter, so when we leave him, despite turning the television on for him, I can see how the silence of our absence hits him. I can see it in his face when this happens because he raises his chin a bit, sort of defiantly, and gives us a glare that is a mixture of love and grit.

He knew that Ming and I were going to a barbecue tonight at a friend’s place and that it would be just as impossible to take him to this as it would be to have a swim in that beautiful ocean. Usually I don’t tell him about these social occasions, so that he doesn’t feel left out, but this time I had to in order to explain why we had to go.

If it weren’t for the various photos I’ve taken over the last few years, I probably wouldn’t see as clearly how much Anthony has deteriorated. The photo I’ve included here is from a bit over two years ago when we were still able to do the restaurant thing easily. Back then, he was more upright, more mobile, more able to eat using a knife and fork, more vocal, more himself. Now, going to restaurants or to people’s houses for a sit-down meal is very hard because, with PD, he is only able to focus on one thing at a time (one voice, one activity, one sound), so the picnic idea was much easier.

When we picked Anthony up this morning, the nurse-in-charge said he had become aggressive again, punching out at the carers, and swearing (totally out of character), so I promised to have a word with him and I explained to her that it is part of the dementia engulfing the PD. She nodded in understanding but when I mentioned it to Ants he just muttered that he had to fight because he is often kidnapped.

I am sad, yes, but no longer ‘tragified’ because what would be the point? This is only going to get worse, not better, so the four of us just have to accept this and do the best we can (I include my mother in this foursome because she is a rock and very much a part of our own little family dynamic).

DSCN1244

51 Comments »

Oh how much I miss the dancing days!

I was going to write something both poignant and eloquent but have hit a blank tonight. Nostalgia I guess. I tried to show Ants how to use his new phone to no avail this afternoon. Then, just a moment ago, he actually answered it!

Anthony, Julie and her mother, Meg, on wedding day 1993

A Goyders Dardanup

The treasure chest of memories of my dancing days with Anthony (and Ming too) is a constant source of absolute joy in the face of what we are going through now. This afternoon Ants was more frail and confused than I have ever seen seen him and I got a bit of a shock.

So, yeah, I miss the dancing days.

42 Comments »

Blog blessings

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….

IMG_3775

…. saying thank you with me!

53 Comments »

A very quiet house

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.

46 Comments »

Taboo topic: poo!

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.

69 Comments »