jmgoyder

Don’t panic – this ‘going with the flow’ stuff is not going to become a series, but I would like to emphasize one of Husband’s most beautiful attributes – the ability to laugh at himself. Yesterday, for instance, when he was home for the day, he was utterly unable to walk at all for most of the time, so I reminded him of our marathon the other day and, as I was re-telling the story, he and I both started to laugh at the ridiculousness of it.

Some people can laugh at themselves and some people can’t but I think everyone should be able to because it sure as hell beats crying or being embarrassed. It’s a really honest, transparent kind of laughing and I learned how to do it from Husband so I now laugh at myself a lot. I find this a lot more refreshing than all that self-analysis stuff that Son likes to do which is probably part of teenagerdom – dunno.

A while ago, when Husband was home for the weekend, we got out the abs machine I stopped using because Wantok the red-tailed black cockatoo destroyed bits of it (see long-ago posts). We got it out to take it to the dump. At the time, Julie-who-is-terrified-of-birds was visiting and she said she’d take it. All of a sudden, Husband, who had been sitting in a chair incapacitated, leapt up and onto (well not quite that fast) the abs machine and did about ten abswings. Son and I watched hysterically because none of us had been able to get to five, let alone ten. I was terrified Husband would have a heart attack or something but he did the ten swings after which all three of us had to help him up and then we all collapsed into laughter with Husband laughing the most!

Husband doesn’t laugh like he used to; it’s as if he’s forgotten how. He used to have this huge, loud laugh where his face all crinkled up but now the Parkinson’s has rendered his face impassive for the most part.  Son, pictured on the right here, has the same laugh thank goodness!

Well, having Husband home for the weekend, and even going out to lunch and various other plans, went awry over the last few days so I am learning not to anticipate anything with too much excitement anymore – and to always have a contingency plan!

For example, on the day I had planned for us to go to our favourite restaurant for lunch, Son didn’t want to and Husband didn’t either, so I left Son home, went into the nursing lodge and Husband was extremely mobile and eager to go for a walk, something I haven’t done with him before – well except on the farm – because usually he is too immobile. I was amazed as he led me rather speedily down the hallway from his room to the nurse’s station and to the locked doors which the nurses opened for us to go out into the sunshine.

“Well, your new meds. are working well,” I said, bemused as Husband pulled me along in the slipstream of his unexpected energy. We walked down the nursing home driveway then followed a sandy trail that backed onto houses on the same street and proceeded up a bit of a hill. At the top of the hill, I turned around and exclaimed over the ocean view which you can’t see from the nursing lodge. We had been walking for ten minutes so I assumed we would go back to the nursing lodge but Husband wanted to keep going down the other side of the hill which was very sandy and steep, so on we went! By then we were around half a kilometre away from the nursing lodge and Husband was beginning to falter and I was beginning to panic.

“It’s just around the corner,” he said.

“What is?”

“Bythorne,” he said (Bythorne is the name of our farm).

It was then that I realized that the same drugs that are making Husband more mobile might also be increasing confusion and hallucinations (I know this because it’s happened before).

He then said that he could see Bythorne and I had to gently remind him that home was 15 kms away, but he just said, “So? I can make it. What’s wrong with you?” Thinking quickly, I said I was exhausted and didn’t want to go any further, that I wanted to go back the nursing lodge, and he got a bit annoyed.

Just then an elderly woman approached us from the corner that Husband wanted to turn. She had a bunch of flowers in her hand and greeted us with great enthusiasm. I asked if she were going to the nursing lodge and she said yes and that she was visiting her old school friend who was 89 but whose name she couldn’t remember. Long story short, she and I eventually persuaded Husband to turn around and go back but then, of course, we had to climb this awful, sandy hill.

Well, with the 89-year-old woman holding Husband’s left elbow, me holding his right hand and him using his walking stick with his left hand we made the very, VERY slow journey back.  While we did so, the elderly woman introduced herself as Pauline and she asked us our names which, for some strange reason, gave her a fit of the giggles. A couple of minutes later, she repeated her question and asked me what was wrong with my father and I had to clarify that he was my husband. This didn’t make her giggle, but gave her pause and she then began talking rather incoherently about her friend who was 89 but whose name she couldn’t remember and, for the third time, we introduced ourselves to each other.

All of a sudden, Pauline, who was very agile, sort of sprinted ahead to the crest of the hill and said goodbye. Husband panting by now, muttered, “I don’t know why we couldn’t have gone to Bythorne, Jules, it’s not that far.”I apologized and continued trying to pull him along, little step by little step.

“What did you think of that lovely old lady?” I asked as we FINALLY reached the parking lot of the nursing lodge.

“A definite case of Alzheimer’s Disease,” he said, “poor old thing.”

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….