Chapter 456 - Daily Trivialities

She blames the quantities of eye drops I administer her each day for not being able to sew; Ganfort & AZOPT at about 6AM, four Polytears at about 8AM, 12 noon, 2PM and 6PM (when I remember) and another AZOPT at about 10PM. I on-line ordered a device of 12 audible alarms to help me give these drops and make changes to the Duodopa pump at appropriate times. My incompetence prevented me programming the alarms correctly at my first attempt; I must try again. Several times in the last month I failed to replace the cassette (once it ran dry for several hours), forgot to change the day and night time rates and this morning forgot to trigger the Morning Dose of 8.0 mls. One night I woke about 2AM to find her wildly dyskinetic; one mid-morning she was hopelessly stiff and slow when I forgot to change to the day rate, and this morning she was very stiff and slow for the lack of the Morning Dose. All this even though I attempt to write changes, administrations, observations in a notebook; spiral bound A5 notebooks that last about 6 months. Sometimes I can't read my own writing and abbreviations on review. And if I am distracted by other activities, such as taking her to the loo, I omit to make notes at the time, needing to "catch up" later, which is error prone.

Her complaint that the eye drops prevent her seeing well enough to sew is true for a short time after application; but the main problem is her inability to apply her lost skills to the tasks. Some weeks have passed since she last attempted to knit, or sew, or to embroider standard designs. Instead, she repeatedly rearranges her sewing room cupboards and boxes, or book shelves (she was recently upset when I wheeled her away from my large book case), or CD collections, or clothes, or cottons. Last November I bought her some quality fat quarters (has not attempted to make use of them) and some yarn for arm (?) knitting, which was attempted once then abandoned. Recently, to help her see better threading needles I bought her a head mounted jewelers' lens with LED lighting but that was too uncomfortable or heavy and then I damaged the damn thing trying to improve it. Then at the craft show several weeks ago we bought a clip-on set of lenses for her glasses yet they don't work for her either. Since yesterday she has applied herself to sorting out the kitchen cupboards again.

Several suppliers of incontinence aids responded to my request for samples. From vague notes I made (she is unable to give meaningful comments) about those that tended to leak, holding capacity and comfort factors, I will order one type of medium size of "pants" rather than "sticky tab" types.

The counsellor I irregularly talked to about all and nothing has retired without suggesting a follow-on person (perhaps it's thought I have no need on). So I emailed the Caring organisation in Hot Air City about talking to someone there, even if it means an hour's drive each way, time to be fitted into my Wednesday respite days. A geographically distant cousin mentioned Valerian, an insomnia aid, so I bought a bottle of 30 tablets of a well known brand at the chemist. Although I was told to expect several weeks for them to be effective, I think after having taken a tablet  at bed time for the last two nights I have slept better and returned to sleep more easily after a loo visit, yet that may be not real.

To West Beer PD Clinic last Wednesday. She told the neuro on duty that she cries a lot (news to heartless me). When I described what seemed to be the beneficial effects (in terms of reduced dyskinesias and not needing to sleep in the afternoon) of taking 2ml bolus doses of duodopa at 2 hourly intervals from 11AM which I thought was equivalent to taking a daily rate of 5.4 - 5.5 ml/hr rather than 5.2 ml/hr she calculated the equivalent at a bit over 5.5ml/hr before recommending the pump be set at 5.4 ml/hr, where the pump is now set. Needless to say, in our opinion, she is experiencing more dyskinesias and is able to stand erect less in the sara now. She has also needed an afternoon sleep on Thursday and Friday, this afternoon I took her for a drive. The "experiment" will be continued for a week.

Chapter 455 - Wondering

I keep wondering where we went wrong about her left foot. Who should we have consulted when we heard comments about dystonia of her left foot? I can hardly remember who made such comments. Why was the neuro (Mal, appropriately perhaps, was part of his name) disinterested in performing a nerve conduction study on her legs once her left leg began "giving way"? The neuro who introduced her to Apomorphine at the Hot Air hospital "discharged" her from his care, sending her back to Mal. She was referred to West Beer after an assessment at Hot Air hospital, and that referral initiated the cancelling of the Hot Air hospital performing a nerve conduction study (and who requested it be done in the first place)? I don't remember who suggested finding a physio; we did so finding a lack of interest in her problem. Not until after neuro F. referred her for a spinal check resulting in an ineffective spinal operation on her lumbar region, then a referral to our local public hospital for a physio to fit a cast to her leg. That has been ineffective, partly because we did not exercise her leg as well as we could have. A half-hearted attempt has been made to wear it again on the advice of the physio. A frame was constructed for her to exercise sit-stands from her wheelchair and I relegated that to the Wild Dog carer who comes for 3 only 45 minute exercise sessions each week, concentrating mostly on upper body activity. Yesterday I tested her ability to sit-stand and found she automatically pulls herself up by her hands, rather than pushing on the arms of the wheel chair, and once "up" she is unable to place weight on her left foot, even though she says it's not painful to do so. I feel guilty that I have given so little interest in the matter. I have just placed the removable cast on her left foot, much to her annoyance, for 1/2 hour while she did a couple of sit-stands. Then she had ideas for her to get out of bed at night to use the commode. Various positions of wheel chair, commode, sara at bed side were impractical. I promised her I will bring a walking frame down from the attic to  experiment this afternoon.

I am convinced that bolus 2ml doses of Duodopa from her pump at 11AM, 1PM, 3PM & 5PM minimise dyskinesias from mid-afternoon, giving her a much better experience during the day. She remains reasonably mobile getting on and off the toilet on her own during the morning and by mid to late afternoon I need to convey her on the Sara Stedy, almost suggesting that more frequent bolus doses may be helpful. Unfortunately, no matter how hard I try, I usually miss or delay a bolus dose or two which degrades her mobility. For instance, this last Saturday I was down the street at 11AM and asked her to give herself a bolus. She assured me at hour later that she had done so, and I believed her, then I forgot about a bolus at 1PM so by 2PM when I gave her one her legs were very dyskinectic, so I doubted she had one at 11AM. I am puzzled why the extra bolus doses don't result in the early signs of a panic attack as when I was requested by West Beer to gradually raise her hourly rate by 0.2 ml over a number of weeks. I must set an alarm for regular boluses.

A meeting with the incontinence nurse at Community Nursing resulted in my sending emails to companies for samples of better incontinence aids. This is partly an effort for more assistance in buying supplies. At present we are subsidised about $500 per year and the supplies I buy are about $1400 per year. Looking into this matter has challenged me to ask her if she wishes to use the toilet between 9-10PM when I change the pump settings for night time running and apply her final eye medications for the day. Sometimes she does, sometimes not, and if she does I find that I am able to lower and raise her overnight incontinence pants, carefully installed by Wild Dog carers at 7PM, when I take her to the toilet on the Sara Stedy. And then in the mornings at 6AM I change the pump settings for the day, give a Morning Dose (8.0 ml) and her eye drops, then about 6:30AM once she is reasonably mobile, I take her to the toilet where her overnight incontinence pants are removed. These actions reduce the amount of urine collected in the pants, overcoming leakage problems, wet patches on kylie sheets and extra washing as well as improved comfort for her.

Last Friday we drove to the club where we occasionally meet her sisters for lunch. Although I had written the correct time and date on the calendar on the fridge, I took her there a week early. So I took her Mother's Day shopping instead, intending to meet for lunch next Friday. A few weeks ago I forgot to take her to an appointment to see the clinic nurse for  a B12 injection. Am I losing it?

There is more to write but this chore is tiring and depresses me.