jmgoyder

There seems to be some mystery about whoever first said “the eyes are the windows to the soul” but I thought of this quote today when I was doing some more research into Parkinson’s Disease and, more specifically, Parkinson’s Disease Dementia which Husband was diagnosed with some time ago but I didn’t tell him. The difference between Alzheimer’s Disease symptoms and PDD symptoms is fairly arbitrary and both dementias can be rather bewildering for the sufferer and the carer because of the unpredictability of almost every moment.

I am very familiar with Alzheimer’s Disease because I worked as a nurse in nursing homes for years before I changed professions and, somewhat ironically, I wrote a book about it which I’ve mentioned before (so this is not a plug for the book!) Yesterday, I found myself doing what I had suggested in my book all those years ago – I listened to what Husband was saying and I went along with it. So when, at one point, he described how the cops had come into the room with taser guns and he had to defend himself, I asked how many and suggested they might be security people to protect him. This worked better than saying something like , “You’re talking a lot of crap; snap out of it!”

One of the most disconcerting symptoms of PDD is what Son calls the ‘shark eye thing’ during which Husband’s eyes go blank and sort of dead. This makes him look extremely malevolent and it’s quite scary. It’s almost as if he is in a trance which is probably what it feels like. Yesterday at the hospital, Husband had shark eyes and sometimes it was as if he were looking straight through me to something else, or somewhere else.

Hallucinations are another PDD symptom and these featured periodically during yesterday as well. I was getting so used to reassuring Husband that there was nothing on the table or behind the curtain that when he suddenly said, “There he is! I told you – it’s my nephew coming up the stairs,” I just said, “No, there aren’t any stairs” (which was true), and “There’s nobody there,” when his nephew walked into the room surprising us both! I did feel pretty stupid!

Another funny but not funny moment over Easter was when I had to dash up to the shop and leave Husband alone. “Please don’t go walking around outside,” I implored, “I’ll only be 10 minutes at the most.” When he protested, I reminded him of all the times he’s fallen over when I haven’t been there (another reason I had to quit work). Anyway all was fine when I got back. Later, however, just after I had locked the gang in and let the dogs out for a run, I went out to the clothesline to hang some washing out and Jack, the Irish terrier, ran in front of me and, yeah, you guessed it, I fell over – badly! I landed hard on one knee and thought I’d shattered it, the pain was so bad. I limped back into the house crying from the pain (I am a wimp) and Husband, after being very sympathetic, said, his eyes sparkling with concern and humour, “You really need to watch your step, Jules.”

I can’t believe those sparkly eyes of just a few days ago have sharked again. Perhaps I should trip over my feet tomorrow when I visit Husband in the hospital!

The following is a pic of a pic of our pre-Parkinson’s days!

Yes, I know, I know – I need to get a scanner; I also need to get some groceries and pick up the lawnmowers and pay some bills and catch up with the housework….

This morning, before 7am, I got a phonecall from the hospital where Husband is and the nurse wanted me to talk to him and calm him down because he thought he was being held prisoner somewhere and was very disorientated. On the phone, I couldn’t convince him so I went straight in and only came home a little while ago, after nearly 10 hours of sitting with him.

It was a very peculiar day, because one minute Husband and I would be having a laugh about this morning’s ‘episode’ where he terrorized the nurses with his walking stick and then tried to actually run away, and the next minute he would ask me why we weren’t staying at his nephew’s place in Perth since it was so close (we are 200 kms from Perth). Lucidity and ludicrousness competed all day, so I’m glad I stayed so long because this is new and I needed to see it. Tomorrow I will not go in because, as Husband is on 24 hour ‘watch’ now, my presence there means the nurse who would otherwise be watching him can do other jobs and I really think this new confusion needs to be seen by a nurse and reported to the doctor.

At one point, Husband asked me again where he was so I told him and he said, “I think I must be going mad!” I reassured him of course but a bit later, when this situation repeated itself, I said, “I think you could be right!” and he reached out his hand and squeezed mine very hard with a big grin on his face, then fell asleep.

When I finally had to leave to come home, I kissed Husband goodbye and went to find a nurse, but while I was speaking to her, I heard Husband call, “Jules!” so I raced back into his room to find him trying to clamber over the bedrails. I quickly settled him back into bed and he put his arms around me and pulled me close, kissing me repeatedly on the lips, cheek, neck and whispering, “I love you more than anything in the world”, to which I replied, “Same here!”

I left the hospital and came home a bit too stunned to shed any tears.

The following is a photo of a photo I got framed for Husband for a Christmas present a few years ago. The original photo was taken around 35 years ago with Husband on the left and his fantastic mother on the right. This was the same year I first met Husband and fell in love – not just with him, but with his mother and the whole family!

It has been a cool, sunny day with temperatures in the house at around 22 but, because Husband feels the cold so badly, he is sitting in front of a roaring fire with all the windows closed and a blanket on and I have had to escape before I die of heat exhaustion!

We have had this conundrum for some time. Husband’s Parkinson’s disease makes him more susceptible to temperatures but not always in a way that makes sense to anyone else. I have just put another piece of wood on the fire in a room that has become a sauna and have taken a picture with his permission. He seems to find it amusing that I can’t venture into the room without melting.

I am not amused – ha!