Chapter 133 - Mother's Day

A poor day for her. Although she slept well last night, only a 4am loo visit, woke to the 6am alarm, she was unable to return to sleep again. Too shaky to attempt a shower until 10:30am when she washed her hair seated & using the new rail for holding the shower rose down low. It needs improvements because the screw-to-tighten rail I used tends to work loose & fall down. After washing her hair she called me to return the shower rose to its normal position for here to complete the shower. Later, after drying herself & partially dressing she called me again for help. By 11am she decided to have a couple of Panamax because these tend to lessen the shakes for some strange reason.

I'm looking at my little notebook, wondering what to record here. I try not be be repetitious and boring but that's just the way it is. She has a good day, and we say why? She has a bad day, and we say why? A good day tends to follow a night of undisturbed sleep with maybe only one loo visit until 6am, minimal shakes to take a shower without requiring assistance drying & dressing, a day with average shakes & stiffness, definitely no panic attack symptoms, a day watching DVD movies or music, maybe some emails, completing her puzzle magazines. She doesn't ask for much. She is wired to laugh or giggle quite easily, just like her amputee aunt. Some people are designed to cope.

A couple of Saturdays ago she went to the little social group at our hall, seeming to enjoy the company. I thought she would wish to return, yet each Saturday since we have "forgotten" or she is not up to it. I do not press the point.

Last Sunday was a good day. Holding on to my arm we walked with friends about the rough ground at the pumpkin fair at the little village halfway to Hot Air City. She needed to sit as much as possible during the hour or so we were there. Returning home to our friend's place we shared some food and a bottle for a couple of us. I expected Monday to be bad but not so, no help needed showering & dressing, then we saw her physio who wants her to attempt more sessions on the treadmill and the exercise bike. Unfortunately she has little self motivation and I try to avoid being called a bully.

Her tendency toward panic attacks has waned since first seeing the physio & reading the book the physio referred to. On Thursday I took the book to our PD Support Group and was surprised when most Parkies there acknowledged, after some chatting, that they had each had panic attack symptoms. some even referring to the feelings of dread. We will get a copy of the book for the group's library.

Her days early in the week were "good" until after the Thursday meeting, after which we stayed at the club for a meal with some others. Staying cooped up at a table for nearly 2 hours then another hour for the meal may have triggered a turn for the worse. She has not been coping very well since.

A pretty little present by post a few days ago & a flower arrangement delivered to the door today were good for her, yet I suspect that these occasions make her realise what she has been robbed of.

She was concerned this morning that she could see a cob web hanging from the bedroom ceiling light, a deficiency in my cleaning abilities perhaps, thinking that she may have been hallucinating. She wasn't I was pleased to confirm. In speaking of hallucinations she acknowledged that she has had none since discontinuing the ant-depressant prescribed by the neurologist, intended to help her sleep.

I subscribe to the PD CARE group (as well as some other PD groups). Many of the posts I just delete, some I keep for reference and others I am simply amazed at the complicated symptoms some PD patients experience and am thankful that she has minimised her medications to the extent that she has. Some of those people have had the disease for much less time. Some carers must be going through hell.

And that's Mother's Day, grey & no sunshine.

Chapter 132 - Grumpy Old Fart

A couple of days ago we went shopping. Firstly through Kmart where we found clothes hangers on the shelf that she had placed on a rain-check weeks ago, a pair of slippers & a pair of shoes (well, those complicated looking runner things) for me and an impulse bought $55 exercise bike that will take several hours to assemble for her. I asked them about replacing the gas springs on the stepper bought months ago that is too strong for her to use - no luck. Then to Coles to buy a few items plus some because friends from Hot Air City were to visit next day. She stood up quite well to all this, pushing the trolley while I pulled it, stood in line at the checkout while an old duck never stopped yacking to the check-out kid, walked off talking & left one of her bags behind. By the time we returned home I was literally stuffed & expressed my feelings, obviously showing signs of stress & weariness. Packing & unpacking $200 worth of food items half a dozen times (you count the handlings from the supermarket shelves to home in the cupboard) is too much for an aging bloke! I was tired & irritable. Actually, it should be getting easier since the quantity is less these days for a given $200. Anyway the foregoing waffle is just to indicate the way we are beginning to think about our futures, for although she went to bed at 10:30pm she was unable to sleep so rose & watched a movie until after 2:30am. She told me next morning that thoughts of what will happen to her should I take sick or worse kept her awake, tending to bring on panic attack symptoms. I must admit similar thoughts are in my mind those mornings when I rescue her bent over, wet, in the bathroom after a shower, or in the middle of the darkness when she is unable to struggle out of bed for an urgent loo visit.

Our Hot Air City friends came with acquaintances from over west on a year-long van trip around the country. Although we were somewhat stressed tidying the house and doing some food preparation we shared an enjoyable day with them.

On Monday last she had another assessment to attend the re-instituted "falls" group at the local hospital. She was the only person in 2 days to turn up for an assessment so I wonder whether the group will actually start. Next Monday week we were told.

I have not suggested the treadmill again. The last time she performed some of the private physio's stretch exercises she had tingling sensations around the back of her head, concluding in a pain over one eye, so I have not encouraged her to try again just yet and I don't think she ever tries to do stretches while I'm out the back here in my dungeon. The "panic attack" book she ordered, after the physio gave her a copy of a page from it, arrived - at the front of the book is a warning that reading the book may initiate symptoms and gives methods to overcome them. I have yet to look at it.

Lately she has been walking better. Last night when we walked up to the hall to collect our mail we were nearly run over by one of our geriatric neighbours cutting the corner onto our side of our narrow street, even though there was a street light about 20 metres behind us. His car passed me with a few centimetres to spare. I hope she didn't meditate too much last night on that being a good way for her to lose the use of her carer.

I must check on her, probably still in bed and then proceed to assemble the new exercise bike.