Chapter 469 - Decisions

I decided a few days ago to cease increasing her nightly Duodopa dose as instructed by Dr F. There were some issues this week suggesting to me that perhaps the nightly dosage had peaked but now I'm unsure. I really don't know what to do. I thought to prepare a report for the clinic nurse but now I'm unsure; pointless to ring anyone to attempt to describe a week in the life of her as I'm sure I couldn't get the point across. What is the point? That she suffers, so what? I planned to email a report to the PD Clinic at West Beer but in writing the stuff below I am now wondering whether there may be an improvement in her condition, so I will wait and see. Tonight her overnight dose rate is scheduled to increase from 2.8 to 3.0 ml/hr. The FitBit is around her right ankle on most days; some days I forget to reattach it after showering; interestingly some days show negligible dyskinesias, but some show a lot.

Sunday, Monday, Wednesday, Thursday she needed to go to bed mid afternoon. The carer on Wednesday (one of my respite days) phoned me about 1330 to come home to help her to bed. Mid afternoon sleeps have been needed before and are good for her since she wakes refreshed I believe.

On several days she has complained of her face and head tingling; I wondered whether she was having a stroke so had her "grin" and raise her arms, no signs of imbalance. Then on Friday she described, in my words, that her "head goes funny, can't think straight, can't sew, hands don't work, when knitting doesn't know what she has done, and in bed feels inclined to lay on her right side". When I attempt to clarify such feelings she becomes stressed.

Then yesterday, Saturday at 0620, "everything is loose, can stop and start, can't explain well enough for you to understand, body not stiff, not painful, legs not stiff, tingling." After taking her to the loo on the Sara Stedy, then the commode to the pedal machine she decided she wished to do sit-stands at the frame. Then she had a good idea, for me to attach a block of wood beneath the heel of her left shoe to support that leg so she can walk; that idea set me thinking and I suggested a shoe with a platform heel; she didn't think much of that at all. Anyway, at KMart this morning we bought 2 pairs of such shoes, one or both of which I will return should the idea not work.

Last Monday we had lunch at the club (to celebrate a birthday of mine from a diminishing stock of them) before buying her a new "old" 3G phone that has buttons on it, so no more so-called smart (arse) phones for her. I had earlier accepted a 1000 GB bundle, with phone calls thrown in, from our ISP provider so we needn't be bothered about excessive long duration phone calls. I now wonder whether the VOIP connection is worth the cost just to provide the diminishing few a cheap way to call her. Then on Wednesday I talked her into using the new phone to call a friend on her birthday in Batman City, just as practice with the new phone. She reluctantly made the call. After the call was over, she said to me "M [the friend] speaks to me as if I'm a child." Is this the reason she avoids ringing friends and relatives any more? Do they each give her the same impression? Any of you that may read this dirge, please remember her feelings.

Also in that 1000 GB bundle was a small box with a TV "router" in it, probably with a Raspberry Pi like device inside and saves tying up a laptop, so that I can provide her with movies and TV series. Unfortunately most of the content is imported "culture" from the Land of the Free; even average quality material from Pommy Land would be better. She now likes to listen to the on-line radio I bought for her, although I have only set up 3 stations for her so far.

I have admitted defeat in giving her Normacol, the only product that gave her reasonable stools. Irrespective of what I mix the grains into, she invariably retains them in her mouth while swallowing the yogurt, jelly, custard. The grains become stored in her cheeks and eventually have to be spat out. She doesn't comprehend the benefits of taking the stuff, so now I'm mixing 3 heaped tea spoons of BeneFibre in fruit juice for her and I'm expecting a bout of the trots soon.

She has been in bed twice this afternoon.

Chapter 468 - Wearing Thin

Sitting in the car with the windows down last Sunday afternoon (she needed fresh air) the gusty freezing wind blew dust into the car and something lodged in her right eye while I was returning Cole's special wheelchair attachable trolley. I was unable to see what was in her eye, so at home I applied some Liquigel eye drops while she sat on the loo before going to bed for a nap. When she woke about an hour later her eye had cleared.

That night the night flow rate of Duodopa was increased from 2.6 to 2.8 ml/hr as directed by Dr F. The following days Monday and Tuesday her condition was normal.

Then on Wednesday 6th from 0400 her condition was horrible; she banged the fan remote control on the bed's monkey bar to wake me; she thought the Duodopa pump was near her feet; her legs were very dyskinetic; she kept speaking of "electricity" in her legs and abdomen; there were cords wrapped around her legs and body; her eyes were wide; she was cold. Rubbing her legs spread the "electricity" feelings. She thought I should be able to see the cords. I checked the pump flow rate was at 2.8 then stopped and disconnected the pump at 0600.  I gave her some fruit juice. Then her head was "boiling". When asked whether she wanted the fan on she said "There's no electricity". A little later her left foot "had a brick on it" then it "was blowing up". She began to calm down, became drowsy but at 0700 was still bothered by "cords" then slept a few minutes, became quiet and docile. At 0730 I attached and started the pump. Her feet began to tingle. I transported her to the loo, she not being very mobile I began the morning dose of 8.0 ml. The Wild Dog carer arrived near 0800 to shower and dress her. The remainder of the day was "normal"; I even went to one of the clubs on respite. The increased nightly flow rate of 2.8 has been continued each night since without frightening incidents.

Thursday was a shopping trip to Hot Air yet we failed to buy anything. Friday at Bunnings we bought some shelving for her to sort her sewing room stuff into. I added castors so that she may be able to wheel it about.

Others issues this week, minor in nature, I not up to writing about, I'm just to weary this early on a Sunday morning. Tomorrow I'm a year older and am feeling it.

Chapter 467 - No Laughing Matter

A few nights ago her chattering in her dreams woke me, then she laughed, a happiness laugh, almost gurgled. I lay awake wondering what in her past was she recalling; was I there? or were our kids? I can't recall the last time I heard her laugh in happiness, not even giggle, although a few mornings ago one of the Wild Dog carers came to the kitchen after helping her dress, saying "I saw her smiling". I have grown so used to her expressionless face that I take no notice yet wonder what others think. She has spent most of the past week adding finishing touches to a knitted beanie she made; a simple thing long in the making. She was unable to fully see the beanie mounted on her head, even with several mirrors so I too some shots with my phone; blank face stared at me.

The dyskinesia of her legs seems to be reducing as shown by the charts from the FitBit on her right leg. Tonight the overnight Duodopa flow rate will be increased from 2.6 to 2.8 ml/hr.

Her obsession about cleaning continues, joins on cupboards, furniture. At the moment she is chopping up a decorative candle, placing the pieces in a long stemmed vase so that another scented candle can be positioned on top and in so doing makes a hell of a mess on her clothes and the floor. This morning while I had her on the pedal machine she mentioned that a person was attempting to mount a cow (as if it were a horse) on next door's front lawn. I was unable to figure out what object was causing the illusion.

She borders on refusing to take 10ml of Normacol in yogurt or custard. I think she should have two doses a day. The stuff is appreciated when she passes a large stool, although yesterday she passed nothing. This morning I gave her 10ml in Sustagen.

Now to see if she wants to go shopping. Last Sunday I had to call the NRMA because the car battery was flat when I returned with groceries; she had remained in the car because it was raining. A couple of return trips to Hot Air City this week should have put some life back into the battery; lately I have only made several 5 km return trips each week. I need to replace the battery though because unreliability in the care of a wheel chair bound person must be avoided. Yesterday a carer was with her while I had a pot of tea and a chat down at the club. She had to ring me to tell me I was already 10 minutes late returning home at 1230!