Chapter 437 - Bad Signs

Bad signs from me, not her. I can't remember whether I wrote about an event that happened about a month or so ago, an event that frightened me. One Wednesday morning , a respite day for her at Wild Dog, I left her to collect knitting and such to take with her that day while I did whatever I do out here in my dungeon. When I checked if she she was ready I found her at the kitchen sink, seated in her wheel chair, having un-potted the Peace Lily her younger sister had given her over a year ago when she was in West Beer hospital having the Duodopa plumbing installed. Imagine the lily, root ball exposed, sitting in the sink, soil and pebbles on a plastic bag, with the small plastic pot beside. She was probably correct that the lily need re-potting; yet she had no soil or larger pot to hand. I just went wild, grabbing the handles of the wheel chair to withdraw her from the small kitchen space, then began to shake the wheel chair back and forth. She yelled loudly. I thought "This is like shaking a baby to death" before I realised what I was doing. I stopped, wheeled her out of the way then cleaned up the mess. I felt foolish. After taking her to respite I bought a larger pot then re-potted the plant. Then I rang the local Community Health Centre to make an appointment to speak to the psych person I used to regularly visit, just to speak to a non-judgemental person, only to find she was away for a period. Another name was offered, I accepted, then later was called by a coordinator who had to ask a range of questions again because I had not been there in the last 3 months or so, all most annoying to me, but having set up another appointment for some weeks later, I was most relieved and felt "safe".

The appointment was for last Wednesday while she was at respite, on our wedding anniversary.Whether reports from previous meetings or due to the approach of this new person, I was able to relate the instance of my loss of control quite easily to a sympathetic ear. We agreed to meet again following a brief respite organised by a carer organisation in Hot Air City which the lady approved of, suggesting I needed more respite because the incident as I described it was a tipping point.

The respite in question involves two nights, a whole day with a half day either side. Since neither of us want her to go into the Wild Dog home even for such a short period., "in home" care is being planned which involves a carer in attendance for three nights plus a nurse, contracted from another agency, visiting at 0600 and 2200 to administer the Duodopa pump. During each day she will be taken to Wild Dog's respite activity centre for about 6 hours by a wheel chair friendly taxi. We have a meeting with Wild Dog staff tomorrow to discuss the details. I hate ti imagine what this will cost, but seemingly will be funded by the care organisation in Hot Air City.

For the first time in ages we attended our local Parkie support group meeting last Thursday. Of interest was a comment by someone who has had DBS. In speaking about an hour's sleep giving her an hour of relief from dyskinesias, he said he does not need to sleep, but simply to lay down for a short while whenever he has problems in order to recover. I am still unable to locate any practical tips for using sleep to dispel her dyskinesias. The FitBit remains attached to her right leg, recording her excessive leg movements.

Her recent bowel cancer test gave negative results. She is very relieved; had to force herself to open the letter. Her sleep test results are available but I forget to follow up for a report.