Chapter 366 - The Cost of It All
She has been taking one sachet of Macrogol each day for a week now. There have been fewer comments about "doing pebbles" and she may even be sitting on the loo for shorter periods now. Initially she complained of feeling bloated, a lump in her stomach but such seem to have gone.
Her nightly routine has settled to a pair of incontinence bloomers plus an additional pad from 10PM each night and somewhere between 5AM and 6AM she lets down the rail on her bed & goes to the loo, sometimes the commode. I am sleeping without interruption, except for my own piddle initiative around 4AM, but I still feel exhausted during the day and my Lumosity scores continue to sag as a result. Yesterday I opted out of attending the funeral, in Big Smoke, of our best friends' daughter, partly because a drive of 2 hours is beyond me at the moment and partly because of her toiletry needs.
A call from our GP's receptionist a few days asking her to attend for an appointment, no urgency, so I suppose the urine test she gave over a week ago does not show anything terribly nasty.
We have yet to contact Dr F. at West Beer to say that the scheduling of appointments to a spinal specialist and a consultation about Duodopa are not happening as he told us they would. Meanwhile the number of small nodules beneath the skin of her tummy area causes difficulty finding a suitable infusion point. I use the ultra-sonic vibrator on the area about once each week. Neither of us are eager to use other flabby parts on her body, parts likely to be bumped.
We were running slightly late this morning so I did not massage Tiger Balm cream into her hips, lower back and legs, sometimes across her shoulders. I am unsure whether there has been any beneficial effect. Tearful comments about tingling and burning in her legs reduced before I began massaging her with the vibrator, but I'm unsure.
Last Monday I collected scripts of 2 and 5 mL ampoules of Dopamine from the local hospital pharmacy. So I continue to prepare the nightly syringe with two 5mL and one 2 mL ampoules for the 12 mL required. Neither the Apomine nor Sinemet dosages have changed since last reporting in this blog.
Wild Dog care ladies continue to assist her shower and dress each morning. Not so much a luxury as a way to begin each day brightly and cheerfully without becoming bed potatoes. And she attends respite there on Tuesdays and Saturdays.
Having checked our bank transactions I decided to total our monthly expenses relating to her care.
Chemist, for Opsites (sealing to cover infusion sites), sticky tape, ointments, over-the-counter drugs (Vitamin D, Macrogol, Tiger Balm) approximately $150 per month.
Incontinence bloomers and pads approximately $150 per month.
Accessories for Apomine (infusion needles, syringes, saline, alcohol swabs) approximately $230 per month.
Daily Care (subsidised) approximately $270 per month.
Respite 2 days per week approximately $160 per month.
Thus, without including pharmacy fees for meds (none till 2015 because we exceeded the safety net by mid-year) our expenses are approximately $960 per month.
As the warmer weather returns her temperature regulation is causing her discomfort. She frequently has the wall mounted fans in the TV room and bedroom running. Any effort causes her clothing to feel damp. Two nights ago I ran the air conditioner (wall mounted in the lounge room, not ducted) but she quickly felt chilled in the bedroom (quite pleasant to my senses) so I turned it off again.
At this moment, on a cool damp grey Sunday morning she is enjoying making a quilt on the kitchen table.
Her nightly routine has settled to a pair of incontinence bloomers plus an additional pad from 10PM each night and somewhere between 5AM and 6AM she lets down the rail on her bed & goes to the loo, sometimes the commode. I am sleeping without interruption, except for my own piddle initiative around 4AM, but I still feel exhausted during the day and my Lumosity scores continue to sag as a result. Yesterday I opted out of attending the funeral, in Big Smoke, of our best friends' daughter, partly because a drive of 2 hours is beyond me at the moment and partly because of her toiletry needs.
A call from our GP's receptionist a few days asking her to attend for an appointment, no urgency, so I suppose the urine test she gave over a week ago does not show anything terribly nasty.
We have yet to contact Dr F. at West Beer to say that the scheduling of appointments to a spinal specialist and a consultation about Duodopa are not happening as he told us they would. Meanwhile the number of small nodules beneath the skin of her tummy area causes difficulty finding a suitable infusion point. I use the ultra-sonic vibrator on the area about once each week. Neither of us are eager to use other flabby parts on her body, parts likely to be bumped.
We were running slightly late this morning so I did not massage Tiger Balm cream into her hips, lower back and legs, sometimes across her shoulders. I am unsure whether there has been any beneficial effect. Tearful comments about tingling and burning in her legs reduced before I began massaging her with the vibrator, but I'm unsure.
Last Monday I collected scripts of 2 and 5 mL ampoules of Dopamine from the local hospital pharmacy. So I continue to prepare the nightly syringe with two 5mL and one 2 mL ampoules for the 12 mL required. Neither the Apomine nor Sinemet dosages have changed since last reporting in this blog.
Wild Dog care ladies continue to assist her shower and dress each morning. Not so much a luxury as a way to begin each day brightly and cheerfully without becoming bed potatoes. And she attends respite there on Tuesdays and Saturdays.
Having checked our bank transactions I decided to total our monthly expenses relating to her care.
Chemist, for Opsites (sealing to cover infusion sites), sticky tape, ointments, over-the-counter drugs (Vitamin D, Macrogol, Tiger Balm) approximately $150 per month.
Incontinence bloomers and pads approximately $150 per month.
Accessories for Apomine (infusion needles, syringes, saline, alcohol swabs) approximately $230 per month.
Daily Care (subsidised) approximately $270 per month.
Respite 2 days per week approximately $160 per month.
Thus, without including pharmacy fees for meds (none till 2015 because we exceeded the safety net by mid-year) our expenses are approximately $960 per month.
As the warmer weather returns her temperature regulation is causing her discomfort. She frequently has the wall mounted fans in the TV room and bedroom running. Any effort causes her clothing to feel damp. Two nights ago I ran the air conditioner (wall mounted in the lounge room, not ducted) but she quickly felt chilled in the bedroom (quite pleasant to my senses) so I turned it off again.
At this moment, on a cool damp grey Sunday morning she is enjoying making a quilt on the kitchen table.
posted by Kilpike | 11:02 am
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