wings and things

Another day with Anthony

After the fright of the other day when Ants was unconscious for so many hours (much longer than usual), I now realise that my being there every day is important. (Confession: I have been taking ‘days off’ here and there recently).

The first interesting thing about this is that, according to staff, relatives, and visitors, if I am not there, Anthony asks for me and is sometimes fretful.

The second interesting thing about this is the whole time warp thing: i.e. I rush in to see Ants on my way to getting the car serviced, seeing whether we have won lotto, buying chick starter etc. so it’s a very brief visit. And he always knows that I will be back soon, even when I don’t come back that day/night. Five minutes can equate to-and-fro with five hours – or vice versa.

The third interesting thing about this is Anthony’s daily mention of Ming. He never does this in a needy way; he is just always very curious and loves seeing photos of Ming, including Ming’s latest Halloween antics/costume at the restaurant where he works. These photos (as well as the photos of Ming on the walls of Anthony’s nursing home room) are always a buzz – “There he is!” Anthony will sometimes say.

When I told Ming about the frightening day, I cried because I was scared that we might lose Anthony suddenly (which, of course, we will). In telling Ming about my day with Anthony, I realised, and saw, how alike they are: generous, sensitive, gregarious, easy-going, beautiful.

Another day with Anthony…
… enhanced by the fact of Ming.


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]


Dementia is not contagious!

A lot of people are afraid of dementia, whether it be Alzheimer’s Disease, Parkinson’s Disease Dementia (my husband Anthony’s type), or other variations. It isn’t just the fear of developing the disease one day, it is also the fear of anyone who has the disease.

As someone who worked in nursing homes for many years, dementia doesn’t scare me at all but I guess, if you haven’t had that kind of experience it could be scary visiting a loved one who used to be the life of the party, or extremely energetic, or with a dry, sarcastic wit (Anthony) only to find them either silent or saying what sounds like nonsense.

But it’s not that scary once you get used to it – it’s not! You learn how to listen differently, you learn how to be comfortable with silence, you learn how to love the person again for what he or she is now, instead of pining for an impossible past. You learn to be unafraid, you learn how to give, you learn how to go with the flow, you learn how to treasure each and every moment no matter how bizarre or strange.

“I just want to remember him/her the way s/he was” is a common sentiment expressed by friends and family of people with dementia and this is understandable, yes, but it is also cruel and selfish and horrible because people with dementia are not dead. People with dementia might be confused, cognitively, but there is nothing confusing about the emotional need to be hugged or acknowledged or visited. Why is this so scary for so many of us?

Before this happened to Anthony, and despite my nursing experience, I, too, found it incredibly difficult to visit people I knew who had developed dementia on top of everything else they were already suffering. Can you imagine how terrible it would be to be so sick, so confused, and then abandoned?

There are not too many visitors at the nursing home where Anthony resides and, when I was a nurse, there were very few in the three nursing homes in which I worked. Loneliness is universal and has nothing to do with age or dementia. People with dementia are lonely; people with dementia are human; people with dementia are often aware of the dementia and need comfort and reassurance, or just a hug. A 5-minute visit is enough to make a bad day good.

This is not about Anthony exactly because he gets a lot of regular visits from family and friends but, because I am in there nearly every day, I see the blank, lonely expressions on many of the other residents’ faces and have now made friends with several people there who never seem to have a visitor. I have also made friends with the relatives who do visit but we are a tiny group.

And the point of this little rant? If you have a friend or relative with dementia, please don’t abandon them. They need you. If they don’t recognize you, so what? Just give that person a hug or a pat on the shoulder and then you can go back to your life knowing that you will probably have made that person’s day shine!

BTW dementia is NOT contagious! (Anthony said that to me today).


Ghost train

Last night Ming and I watched one of those poltergeisty movies and we were so terrified throughout that it became funny and I couldn’t stop laughing! It reminded me of the ghost train incident of many years ago.

The memory still sits in my gut, raw, un-relinquished – a regret that I can’t rewind and delete. I comfort myself with the thought that all parents do heaps of things unthinkingly, unwisely – don’t they?

Tentatively, I reminded Ming about the ghost train the other day, and he giggled. Momentarily relieved, I assumed he was over it. But I couldn’t help noticing that his giggle was accompanied by a slight frown, a slight blanching of the complexion, even a slight stiffening of the limbs.

He was around three years old at the time. We were having a holiday in Adelaide, when we decided, on impulse, to go to the Adelaide Show.

Ming was terribly excited by the crowds, the fairy floss and the ghost train billboard advertisements. He kept pointing to these and saying, “Ming wanna go on that thing, Mummy – pweese!” He was fascinated by the pictures of ghosts, skeletons and monsters.

So I bought us tickets, told Anthony we’d meet him in the closest coffee shop and Ming and I waited in the queue. This is when I had my first tiny qualm. Children much older than Ming were coming out of the ghost train ride looking a little worse for wear and I got a bit nervous. Then, all of a sudden, it was our turn and we were strapped into the tiny cart and off we went.

Just before those horrible black doors opened and we were whooshed into the 2-minute nightmare, I whispered to Ming, “None of this is real, darling – it’s all pretend.” Why, oh why, didn’t I say this to him earlier?

At the halfway point, he was so terrified that, seeing a tiny crack in the wall to the outside – a sliver of light, a glimpse of another queue – he screamed, “Ming wanna go back!” But it was too late. Our cart was thrust, once again, through another set of black doors, and red eyes, ghostly hands and skeletal breath seemed to touch us as we progressed, surrounded by the bloodcurdling screams of those behind and in front of us.

I held Ming close as he began to cry. His fear was so potent that my own heart started to race with remembered childhood nightmares of spooks, of bogeymen – the dark fear of the unknown.

Then, whoosh, we were back in daylight. It was over. I picked Ming up and hoisted him into my arms. He was trembling. I hated myself.

In the car, on the way back to the motel, Ming remained silent while I told Anthony about the ride, how scary it was and how badly I felt. But Anthony just laughed and said, “I’m sure Ming’ll survive, Jules – you worry too much.”

Then, from the back of the car, came a querulous voice. “Andony?  Mummy and me neeely got gobbled up by the monsters, but we surbived.”

I made my decision then and there: no more ghost trains. Ever!