wings and things

A bit like the weather

At the nursing home, Anthony was up and about this afternoon at about the same time he was in bed yesterday. He was lucid, mobile, vocal and quite jaunty.

To me, Dementia resembles the unpredictability of the weather, about which you can do nothing. The other day, a tree was uprooted and fell down during a storm; the next day it poured with rain; the next day it was bright sunshine; and today it is a bit of both.

There is nothing anyone can do about weather fluctuations – nothing. Forecasts can be wrong and often the weather will change drastically from what was expected to something totally different. A storm may shove a sunny day aside and vice versa. And there is nothing you can do about it. Nothing.

Dementia is like this in so many ways. One day, at exactly 10am, Anthony might be able to answer the phone and have a coherent conversation with me; the next day he might be unable to do either. Despite the careful timing of his PDD medications (just like I used to do at home), sometimes he has a huge appetite and other times he has forgotten how to eat. Sometimes he can almost run, using his walker and other times he can’t even take a single step and we have to get the wheelchair.

With over ten years of nursing experience up my sleeve, and a PhD about Alzheimer’s Disease, you would think that I’d have more understanding of the kind of nuances that occur when Dementia has climbed onto the back of another disease like Anthony’s Parkinson’s. And yet, every day is a surprise for me – sometime wonderful, sometimes awful, and sometimes in-between … a bit like the weather.

So what do you do when the weather isn’t what you expected?
You accept it of course, because you have no choice.

[Note to blogger friends: I am still not receiving email notifications of your posts so have been using the WP Reader. This is a much better way for me for the time being but I am not keeping up with you all and I apologize].


Telephone traumas

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!


Another psychotic episode?

It is nearly 9.30pm here and I just got a phone-call from the nurse-in-charge at the nursing home who wanted me to calm Anthony down because he had, once again, become aggressive and was very confused. Ming and I tried, on the phone, to talk him into going to bed but he just kept ranting and mumbling incoherently and Ming gave up. I then tried, over and over, to convince him that nobody was trying to hurt him and that the staff just wanted to put him to bed, but it became impossible, so I hung up and rang the nurse back and she said she’d never seen him like this (she is his favourite nurse).

I asked if I should come in but she said no and not to stress and they would sit him down in the foyer (where he was apparently standing and yelling) and wait for him to become too tired to resist going to bed. When I apologized to her, she was so reassuring that it would all be okay that I nearly burst into tears, and, when I said “I can’t bear it for him that he is becoming so distressed so often”, she said something comforting about how she and the staff knew him, and knew that this was different behaviour, and that they were sad too.

Once I’d hung up the phone, I marvelled that I had taken Anthony to a special friend’s 80th birthday party today and he/we had had a great time, despite him being in a wheelchair and not quite ‘with it’. In her speech, the birthday girl even thanked Ants for coming to the party and that really touched me (she and my ma have been friends forever).

It has been suggested to me that taking Anthony out might not be a good idea because, when I take him back to the nursing home, he seems more confused and exhausted than before, and he is, quite obviously, becoming a difficult patient/resident. But, what the hell – I WILL continue to take him out, and bring him home, because I love him and miss him and I want to hold his hand. (I have always found couples that constantly hold hands slightly nauseating – ha – but now I don’t!)

PS. If anyone calls me wonderful or amazing I will bop them! This is just how it is – how it is.

Anthony listening to speech

This photo is of Ants three years ago, on his 75th birthday. He turns 78 in a few weeks – quite a survivor!


Disengagement dilemmas

It is nearly 1.30 in the afternoon and I haven’t yet rung Anthony. This is very unusual.

Usually, I ring him multiple times per day beginning with the morning phonecalls. When I say multiple times, I mean multiple attempts. The big, easy-to-use mobile we got Ants goes to message bank after exactly 13 rings, so my system is to let it ring 12 times, hang up, and do the same thing a couple more times. I usually get him on the third try.

But, even when he answers the phone, he often can’t hear me because he is forgetting how to hold the phone to his ear, so I have to yell my side of the conversation. And sometimes, he starts pressing numbers on his phone and unintentionally cuts me off, so I have to begin the whole ritual again. I often have to ring the nurses to help Anthony answer his own phone.

I do this phonecall thing in the morning, in the afternoon, and in the evening regardless of whether I am visiting him or not (an average of every second to third day now).

When it works, our morning conversations are light-hearted (Ants is lucid), our afternoon conversations are mournfully hopeful (he is sad and wants to come home), and our evening conversatioms are bizarre (he is confused).

It is nearly 1.30 in the afternoon and I haven’t yet rung Anthony. I will wait, with my hand poised near the phone, with his number carved into my brain, with my heart splintering, until 4pm.


Because otherwise I will go stark, raving mad.

This is a very heavy love.


Sometimes I get a bit freaked out

Tonight on the phone Anthony asked me when I would be coming to join him at the Captain Stirling for a beer.

The last time we were at this pub I was pregnant with Ming – 19 years ago.

Tomorrow, when I bring Ants home for the afternoon, I will ask him about this because who else can I ask? He is my confidante and likes me to talk to him about him – weird but good too, I think!