Chapter 454 - It's Just Not Worth The Effort

That's what I said, to which she replied "What's not worth the effort?", to which I failed to respond. This morning I rose about the usual time, a little after 0600, gave her two types of eye drops, replaced the cassette on her Duodopa pump, changed the setting to the daytime rate and started the morning Dose. Then off to watch a half hour lecture while tread milling 1.5 kms, then I showered and dressed. About 0730, after putting her shoes on, I transferred her on the Sara Stedy into the loo, discovering that her nightie had been tucked into her overnight incontinence pants, thus piddle had capilloried out of the pants onto the Kylie sheet; some more washing. Left her on the loo while I packaged full incontinence pants and dirty tissues into a plastic bag the placed in the garbage. While I prepared our breakfasts the Wild Dog carer arrived to shower and dress her with incontinence pants and pad, bra and socks I laid out for her (I leave them to choose outer clothes). Her breakfast of fruit juice with Movicol and Benefibre added, a small container of yoghurt, a small container of diced fruit in jelly, Vitamin C tablets, a toasted muffin with butter and lemon butter were ready for her about 0810 when she appeared fully dressed, in her wheel chair. Until after 0900 she had digressed to fiddling with fabric and pinning a home-made bag for her pump onto her bra. I like to take her for an "outing" shopping on Sunday mornings, a sort of religious experience, but we need to be there by 0930 to stand a chance of finding a disabled parking slot. This outing takes all morning; should I go on my own, I'm down and back within an hour. So is it worth it? It's now 0928.

Much later. Down at the shopping centre there were at least 5 disabled slots; I needn't have stressed. It's just that a normal slot is too narrow to shoe horn a non-walker into the car from a wheel chair and using a slot at the end of a row where the passenger door opens into the traffic stream is highly dangerous. Anyway, a slow wheel around Kmart without buying anything, followed by buying several craft magazines at the news agents, then a coffee and a hot chocolate before some super market shopping using one of Coles special wheel chair attachable trolleys to be home again about 1215. I was quite done in by the time the stuff was placed in the fridge and cupboards.

I have heard her tell several of the Wild Dog staff that she is unable to sew anymore. I think to myself that she finds fault with what she begins to sew, stitch, embroider or knit and on finding a minor flaw she destroys the work done in attempting corrections. A week or so ago she knitted a reasonable length for some sort of cap without unpicking and knotting the work done into a knotted mess, but I am yet to see her continue with the job. I have encouraged her to embroider again designs she completed years ago, partly to motivate both of us with similar pursuits. She has great difficulty seeing and threading the embroidery machine; declining eyesight and less than manipulative fingers are not a good combination. The designs she has stitched are being attached to small pillows she is making. The jewelers head mounted lenses with LED lighting I bought for her were too heavy and flimsy and uncomfortable for her.

On Friday Wild Dog asked me by email whether she could be interviewed for her "story" to be published in some of their promotional material, along with a photo of her. I gave her a copy of the email, showed her their web pages, to be met with her instant rejection of the idea. Today her reaction has mellowed, now willing to be interviewed without a photo being taken. I'll ask again tomorrow.

I recently read a layman's description of PD in which I noticed mention of body posture symptoms, stooping and sideways tilting of the body (I forget the technical terms). In a flash I realised that the stooping she exhibits from early afternoon when I have her stand in the Sara Stedy for transport to the loo is just that, a PD symptom when her medication is too little. So I began having her take a Bolus dose of 2mL at 1 or 2 hourly intervals. Unfortunately the Bolus doses are somewhat irregular (I am distracted with other matters and forget) and I have not recorded her standing ability onto the Sara prior to this "trial" but I am confident that her ability to stand vertically has much improved into late afternoon. She has not shown any signs of panic and excessive dyskinesia with these extra doses as she did when the continuous daily dose was some 2mL higher. Also, she deteriorates in about a 1/2 hour from being able to stand easily to a vertical position to standing with much difficulty and bent at the waist. Once she begins to show signs of dyskinesia and bending, a Bolus dose seems ineffective.

On Thursday I collected her next month's supply of Duodopa from the chemist. Returning home I discovered her beginning to re-arrange my collection of books stacked on my jerry built bookshelves along the wall of the passage way down to the laundry. She had decided the books looked untidy (they do) so she wished to arrange them by size, even though she had no hope of reaching the upper shelves while seated in her wheel chair. She yelled quite a bit when I dragged her wheel chair away. Her cleaning, sorting and moving contents of cupboards is her major activity lately. Even she has trouble finding items she has moved. She has returned to her sewing room cupboards again.

Now in a calmer mood, I think the effort is worth it after all.

Chapter 453 - When is a Fall Not a Fall?

Yesterday to Bunnings , a variant for our Sunday shopping outing. A tap fitted water filter (to replace the plastic box in the kitchen), weed killer (for obvious reasons) and punnets of pansies for the raised garden bed (she coerced me to remove old flowers, tomato plants and mint running wild on Saturday).While I fitted the filter to the kitchen tap, she took her wheel chair outside to find more weeds in the garden; she has a fascination to dig her fingers into the garden soil. Hearing her call, I went outside to find her in a heap on the paving near the side gate. No harm done, not even to either of us dragging her back up onto the wheel chair. I can only assume she leans too far forward in the wheel chair, which then tips. At least the second time this has happened out there.

Last Wednesday she and J from Wild Dog almost completed to the design started on the 10000. Except that the top thread had not been threaded correctly on the fourth last colour, a rats nest on the underside of the design, bobbin removed and not replaced correctly causing come needle holes in the casing that needed a little repair. Anyway she was then able to complete it. Onto another design (I hooped it). She has difficulty seeing the needle for threading, even with several lights on the sewing area and her fingers have difficulty manipulating the thread into what must be one of the easier automated threading mechanisms; almost as if she had never done it before, but is getting better with practise.

Her hour or two of sleep each afternoon continues, waking to better mobility as I see from her ability to stand easily in the Sara. After a session on the embroidery machine she seems to sleep better at night. The designs being stitched show Janome colours which need converting to Isacord colours and she is easily confused with a number of colour charts she wishes to use when only one is needed. A further complication is the very small size of the numbers printed on the ends of the Isacord spools.

She is unwilling to attend the local craft group after the first time. I'm unsure whether this is because someone may have "helped" her with the knitting she took along (since pulled apart) or whether she had difficulty coping with their chatter.

Since the choking episode earlier in the week, she is avoiding any lumpy food, even soft pasta in a frozen dinner. Her throat was sore for several days but is now better. Several meals have been thrown out. We are at the point of needing to puree food for her. I'm no longer providing drinking straws for her.

We had 'flu injections on Thursday and on Friday night she was "burning up".

Chapter 452 - Frightened

Last evening I heated a quiche, sweet potato chips and a few brussel sprouts (all from the supermarket) for our meal. I had placed our plates on the small collapsible tables near the TV in the back room and returned to the kitchen area. On turning around I saw her with mouth open, eyes wide open attempting to cough but making slight gurgling sounds. I began thumping her on the back until I asked myself how long I should keep this up before pressing the alarm system button; then she gurgled, expelling some brussel sprout. I think I yelled her name repeatedly during the back thumping. She coughed and spluttered; I gave her some cold water. She didn't eat the meal; it went into the bin. Her throat was sore. A short time later a Wild Dog carer arrived to help her to bed. Honey was recommended to ease her throat, I gave her a spoonful after she was in bed. A few drips ensured.

Her throat remains sore this morning, although she ate her breakfast of yoghurt, diced fruit in jelly followed by a waffle with malt and ice cream, then raided the fridge for the scrapings in the almost empty ice cream carton.

Having taken the comments by counsellor R (mentioned in the previous chapter) as meaning "creative" and "uplifting" I told counsellor D that I will have a stitched design to show her at my next appointment. The design of lilac against a wall was completed on Sunday not quite to my liking so version two must be started. Anyway, I thought the two of us may motivate each other by each working on embroidery designs. Yesterday I set up the Janome 10000 for her. This morning she is unable to to thread the machine without guidance; she has forgotten the procedure repeated thousands of time on a few short years ago. I hooped some calico and stabiliser for her, so the most difficult part for her to do was the threading, made easier by the 10000 having an almost automatic needle threader. Her failing eyesight and obvious immobility of her hands makes a hard job of it. She stitched about 4 colours of a design she used several years ago, taking about 2 hours, much of which was spent getting lights and a lens in position for her to see what she was doing. She acted as though this was her introduction to the machine, rather than being the one she hated to see me fumbling with when it was bought maybe 12 years ago.

On Sunday, the day that is tending to be our shopping day, I felt quite weak and "rubbery" and was disinclined to drive. So yesterday at 0900 I went on my own, leaving her at home where she had decided to count her collection of small change. I was home again a little over an hour later, having spent almost $300 to tide us over the silly season of Easter. As I walked in the door she had just finished counting the change, a total of $99.50 she said.

Cupboard re-arranging has slowed somewhat, but being a slow learner, I continue having difficulty finding items in the kitchen.

Most afternoons she has a sleep for an hour or two. A bolus dose just prior to her feeling of needing to lay down may benefit her, but she seems unable to remember to press the button unless told to do so. Yesterday I found her grasping the railing on the accessed side of her bed. "Why?" I asked, to be told that she was in danger of rolling off the other side, the side which is against the wall as well as having the railing up. While in bed she often asks me to check her feet for being twisted; by that she means "crossed"; she is unable to tell and usually her feet/legs are uncrossed.

Last Saturday I wanted to take her along the river path but no, she didn't want to go because if I felt "bad" there was nowhere for me to rest. Also, she is afraid I may tip her out of the wheelchair, even though the path is new, without cracks or bumps and is quite wide.

She has begun inspecting the seams on the insides of clothing and pillow cases and then trimming any loose threads. An old zip fronted cardigan was treated in this way; "I'm going to throw it out" she said, before changing her mind to modify it to have a V front - we'll see.

Chapter 451 - A Calmer Week

Her rearranging of cupboards was less intense this week, some re-visits to the kitchen sink cupboard and the cupboard with the glass panels. She also attacked the fridge. Yes, perhaps a lot of tidying needed doing but I am having difficulty finding things that from my point of view are are in inconvenient positions and "like" are not always with "like".

My concern for her right foot was unnecessary. On Thursday the physio AB down at the hospital checked both legs and found no change in either. Wearing the caste on the left foot for at least a couple of hours each day as well as using the pedals was recommended. Each morning now while waiting for Wild dog carer to arrive to shower and dress I have her pedal; each evening after getting to bed I will attempt to fit the cast for a period.

Some months ago the counsellor D I talk to suggested I contact a support group in town but its office was always closed, phone calls went unanswered and there was no response from a web site query. Recently a friend told me the organisation had moved and went under another name. So on Wednesday I found the place, entered unannounced, to be politely listened to by a bloke R for half an hour. His only advice was to consider my "spiritual needs" by which I think he implied more than simple religious help, because he attempted to explain when I suspect I reacted a little. Other than that I don't remember him saying anything and I drew the conclusion there was no help for me from them. But then, I really can't remember asking for help other than attempting to describe the situation we were in after 25 years of PD. I came away from the place running late for an appointment to speak to D, who knows of R. I suspect that the inexperienced and unknowing don't see PD as a "mental" disease on a par with Alzheimer's and dementia. Or that carers are the same irrespective of the conditions experienced by the cared for one.

A beautifully fine day on Saturday encouraged me to take her along the recently constructed pathway along the banks of our little river. Since the access to the path was too steep at our end I drove a couple of kms to a more accessible spot from where I pushed her in the wheelchair almost back to our end of the path. An enjoyable walk except for her fear that I may push the wheelchair off the concrete path onto the grass and soft soil along side, tipping her out and perhaps into the river. Another example of her unwarranted fears of motion and physical positioning.

Then on Sunday morning at 0400 (unsure whether that was Daylight Saving or normal time on this transition night) she woke me to lower the side rail of her bed for her to sit with her legs over the side, her legs were very dyskinetic. About 20 minutes later I realised that I hadn't reduced her pump flow rate from 5.2ml/hr to 2.2!! After stopping and disconnecting the pump the dyskinesias eased, she dozed breathing deeply. At 0610 I restarted the pump at 2.2ml/hr but failed to record in my note book  when/if I changed it back to 5.2 and whether I gave her the Morning Dose. I don't think I replaced the cassette because at 1635 she noticed it was empty without a sign of medication in the cassette. Then as I replaced the cassette I noticed the setting was 5.2, the correct value.

But for all my mistakes she had a good Sunday morning being wheeled around Target and the supermarket for the weekly shopping.

She continues to experience a sudden need for loo and sleep between 1400 and 1600 each day, after which she tends to be in a good state for about the same length of time she had slept