Chapter 513 - Just Like Old Times, a Year Ago

She agreed to go shopping this morning. We left at 0930, returning at 1230. To Target, intending to buy some pillows to replace our existing ones with stains. There were containers at the back door full of pillows, so we left those until on our way out. We first toured the ladies clothing area as we once did and of course selected odd garments on special.  Then we found some mattress protectors, a wooden block activity to perhaps help her improve her hand manipulation skills, a T-shirt and fleecy lined denim jacket for me. Two metres from the check out she insisted on having a new hand bag but I deterred her from a new purse; perhaps I was making a point, all the items totalled about $270. Then to the Coles shopping centre for two pairs of the black shoes, with velcro strap, that stay on her feet better than any others we have found and a pair of blue slipons likely to slip off easily but just for her pleasure. Then the paper shop for a couple of magazines for her, then a coffee for each of us, although hers was iced before buying a few thing at Coles then a sticky bun for her at the baker's. Having enjoyed herself perhaps she may wish to return to the routine of shopping each Sunday morning. She now entertains herself by opening and sorting the items.

On Friday my cousin from WA visited and I had invited them to lunch at the other Club rather than stressing myself with lunch but they became quite serious they would pay for lunch. For most of the several hours together we spoke about family history, my cousin floundering with the vivid details of our recent  mutual ancestry. Her tolerant partner accepted all this with good grace, well he seemed to anyway. I gave her an embroidery I stitched from a photo I took of her parents in 1988; not one of my best efforts perhaps, I've done little during the past 4 or 5 years. I must now complete the web pages I have been writing about our relatives descended from our great grandparents.

Her symptoms have changed this past week. Rather than strong dyskinesia beginning in early afternoon, she is strongly bothered on waking after 0600 and after settling into bed on the brink of sleep about 2100. On several nights I have given her a Kalma and of a morning a Bolus dose of 3.0 mL  before being assisted from bed helps. Most nights she speaks and laughs and "whimpers" loudly enough to wake me over the noise of my CPAP and an ear bud presenting Radio National into my right ear.

The rescheduled appointment with Dr F at West Beer was last Tuesday. He briefly tested her by asking her the year, day, month, location. She hesitatingly said "19" but remained in confused silence about the rest. I told him that Dr W., geriatrician, found in January that she had not deteriorated during the previous 6 months. Again the appointment was less than satisfactory, he excusing himself twice to leave the room for telephone conversations. However, he wants her to visit twice in the coming months when he and the Clinic Nurse J will attempt to fine tune the Duodopa flow rate. Also he will seek approval and prescribe Exelon patches, an Alzheimer medication, for her. I wonder what side effects will be experienced? A replacement Duodopa Pump is on its way because the one that has been in use began being unresponsive and slow to the buttons when changing the settings. Hallucinations are no longer mentioned yet she remains very interested in finding threads on the floor. Early on Tuesday evening after returning from West Beer I found that she had shredded onto the floor the incontinence pad she had been wearing.

Since last Wednesday she has complained at times of a sore bottom. Nothing was obvious at first until I noticed a red patch slightly north of where the sun has never shone. Dermaid 1% has been applied regularly and the problem seems to be easing. I have taken photos of the area and will probably take her to the doctor tomorrow. I have reduced the pressure in the rear panel of her wheel chair cushion.

Chapter 512 - It's Just Too Hard

A month since I last wrote here, and today I delayed by watching the "Insiders", a weekly political comment programme I usually only notice in passing, but today I watched to delay the inevitable work involved in resurrecting issues and attempting to write notes about them. Unsure whether  doing this increases my depression even though I will experience a sense of relief for having done so.

You know that I write notes each day, partly to ensure I complete important tasks, activities involving changes to her pump flow rate, glaucoma eye drops and changes in her behaviour and condition. Making these scribbled notes in spiral bound A5 notebooks is my only record of events affecting her welfare, and mine as well I suppose. Each 300 page notebook fills in 6 months and will just be another personal record to be destroyed. This blog is a summary, slightly less monotonous and boring and may last for a longer time, on line or in book form.

My attempts to get "training" for using our sling lifter has come to nought. We cannot avail ourselves with such training from the local hospital because she has a Level 4 Package, assumed to cover all her needs without the need to depend on public institutions. We have not bothered to further practise using the lifter. My intention was to take her to see her 97 year old aunt and fortnight ago asked questions on the web site of a motel in that area about their facilities without any replay yet. Perhaps I won't bother proceeding to organise such a trip.

Her appointment to see Dr F. neurologist  at 1345 Thursday 7th march was aborted because he was running at least two hours late, but the scheduled nerve conduction study was completed. No deterioration was seen compared to the same tests of a year ago. At this late stage in her treatment I learned that Levodopa is known to cause nerve atrophy and more noticeably when using Duodopa because of the more efficient uptake of the drug into the blood stream and therefore the brain. A professional may not word it quite as crudely as that but that is the gist I learned by searching on line. At 1430 on that day I decided a two hour wait followed by a 2 hour return trip home was too much so another appointment has since been arranged for this coming Tuesday. About $700 wasted from her level 4 Plan.

I have maintained her Duodopa flow rates at 5.5 ml/hr for daytime and 2.0 mL/hr at night. However, I discontinued Symmetrel at 0800 and 1200 each day from Friday 8th March. Her hallucinations were disturbing me, such as her "seeing" green and pink dirt on cupboards and floor, threads on the floor, threads wrapped around her fingers. The hallucination to convince me to discontinue Symmetrel happened after the Wild Dog carer put her to bed on our return from West Beer; she was picking at the fingers on her left hand, "pulling threads off" she told me, so I asked her to place the removed threads into my cupped hand, which she did and was satisfied there were no threads left so I put them in the bin. I am yet to tell the neuro.

Friday 8th March saw us meeting with the sisters for lunch at the club in the Highlands. She ate well but I can't remember her partaking in conversation. On our return home she continued removing a lacy cuff on a pair of slacks bought a few days earlier. She picked at the thread until the two parts separated then continued to pull at the side seam until it opened about 100mm; surprises me how loosely these clothes are sewn together. I had to smack her hands to stop her continuing; she defied me when I asked her to stop. Then I discovered that somehow she had confused the seam of one leg of the slacks she was wearing so that had to be sewn back together the next day. One pair of brand new slacks has had the cuffs of lace hacked off with scissors; I have yet to repair those. I'm sure I have mentioned in earlier posts of her need to make small pillows; she has been making one for several days now from an old pillow case, about 200mm in diameter, seams liberally held together with pins then tediously hand sewn together. Yesterday I had to pull out a pin that had been left inside, although leaving the small ball from the top of the pin inside. The object is taking on a ball shape as she progresses.

Last Sunday we went to to an amateur production of "Snugglepot and Cuddlepie" at a local church hall. Dyskinesias and heat bothered her for the two hours. She said she enjoyed the performance yet I wonder.

The Carers group in Hot Air City has offered me a respite of 3 nights away, similar to what I attended down on the coast the year before last. She doesn't want me to go; she does not want strange people looking after her at night. I have asked Wild Dog Carers to arrange care for her and to talk to her to ease her concerns. They have asked for a timetable/schedule.

Last Wednesday I returned home at 1430 following my weekly 5 hour respite when I drink coffee, lunch, read New Scientist, talk to mates and such exciting pass times. I found her and that day's carer out side rearranging the plants in the raised garden bed, they had filled the green recycling bin with vegetation trimmed from an unknown (to me) plant that has small mauve flowers and drapes down the brick wall. I delight in such plants that hang that way, and ivy, over the sharp hard edges of brick. The stuff will grow back over the year coming but just now it has the appearance of a bad haircut. She had had her hands in the soil digging, she gains pleasure from doing so. The carer had cleaned her just before I returned. She had small pricks and bruises on her arms from the activity. On Thursday or Friday I found a small beetle in her bed, puzzled, I kept in in a glass. Yesterday I noticed small red dots on the thighs of both legs. This morning's Wild Dog carer drew my attention to the same small red dots; realising such may be associated with the beetle I found I took some photos of it which was still alive in the glass.

I feel release now.