Chapter 522 - Not Quite the Outcome Hoped For

Yesterday, as we drove from the motel we stayed at in town Y on Saturday night my feelings suggested further trips away from home were unlikely. Not that we experienced any great difficulties. Just that I had entertained hopes of both of us feeling more satisfied with this short escape.

We left home about 1030 on Saturday. An hour later I drove into a disabled slot in the car park of the RSL Club at Y, rather than parking in the main street with high curbs, the street that was once the main highway. We had lunched at the club years previously in the days when we met friends (he now dead) in a number of towns, so I knew where convenient parking was located. Feeling somewhat guilty I thought we should at least have some lunch at that club. She decided on a Neapolitan pizza which she found very tasty; it was too, for she shared a piece with me. I omitted telling her that much of the flavour was due to the anchovies partially submerged into the cheese topping until after we had finished eating. She had never eaten anchovies, considering them the be "horrible hairy things".

After lunch we walked the length of the shopping area on both sides of the main street, only venturing into a tightly stocked junk shop. The only newsagents' had closed by the time we reached it so I was unable to buy her something to read, as I had forgotten to pack her eBook reader, although she did not seem to mind. Mid afternoon we booked into the motel at the northern end of the shopping area. The room and its bathroom were both quite large, fortunately so for our suitcases, wheelchair and collapsible commode took up a fair bit of space. She decided she must have the roll-out bed/lounge rather than the double bed which was much higher and may have presented difficulties getting her in and out of it. The meal we enjoyed in the room was excellent, only marred by not eating it in the restaurant which she wished to avoid.

Our early morning routine was unchanged so I began her pump maintenance matters as usual a little after 0600. She had found the roll-out bed most uncomfortable and for once she had been cold. She hadn't mentioned this during the night otherwise the air conditioner could have been left on at a reasonable temperature. On the drive home she complained of pain in her shoulders and back. Attending to someone on an adjustable bed is much better than on a low roll-out I had found. The new collapsible commode/shower chair met my expectations even though it feels somewhat frail. When used as a shower chair the many nooks and crannies of its structure prevent complete drying so I will need to leave it assembled and not in its carry case to air dry. We drove from the motel about 0930 and arrived home shortly before 1100 on Sunday.

Once home she needed to lay down and sleep and her back ache developed into a pulsating head ache so I gave her two soluble Panodol. She slept for about an hour. Then when I began to put things away in the bedroom she decided it was time to do a little spring cleaning so I got the vacuum to remove fluff and dust from behind the beds and she continued wiping down surfaces using baby wipes which we use for cleaning her stoma. We both slept well last night.

Last week while enthusiastic about going away I ordered a webbed access strap for the door on her side of the car, a car seat slide for her and a wide lifting belt with handles and velcro closure. All these items arrived this morning, a shame I hadn't ordered them a day or two earlier. This morning I fitted the two items to the car and we used the belt for a toilet visit. In testing the seat slide (which consists of two padded pieces which slip easily across each other) in a transfer from her big wheel chair onto her car seat I almost had her slip onto the garage floor; so with it I must take great care. Our intention is to make chair to car transfers much easier on both of us. Some time ago I had bought a lifting belt that joined at the front with a plastic clip and a narrow belt but I felt such was unsafe with her stoma and tubing. The new belt is quite wide with overlapping velcro fastening. Even so, it does not seem to fit as well as I had expected.

She continues to shred the thick cord from a couple of pillows we bought recently. Simply to make soft filling for some sort of small quilt or large pillow she is trying to make. We could have bought sufficient filling and still had two pillows. On Saturday she took two large balls of "wool" to knit into something while away but when she realised too many stitches had been dropped in the midst of a jumble of strange stitches (she was stitching two threads, one from each ball) she gave up, pulling the creation apart to begin again. I untangled the jumble. Then again yesterday afternoon after returning home for her next attempt failed as well. She knows what she wants to create yet when things begin to go wrong she is unable to make corrections without pulling it apart and beginning again. I am reminded of once seeing a piece of video of a spider trying to spin an orb after the spider had been damaged in some way by research scientist.

My doubts about venturing away from home again are lessening as this day drags on. We have made the first step and perhaps with practise I will become more confident about moving and transferring her in unfamiliar surroundings. One way or another, I need to be able to attend to dressing her and showering her without using the Sara Stedy for transfers. There are times when myself and a Wild Dog carer are required to use the Sara Stedy when she is unable to stand easily. Of late her upper arms are painful from the effort she herself uses and I need to apply Voltaren for pain relief. My lower back is becoming quite painful as well. So we are reaching the time when her pants and slacks must be replaced by rolling her side-side on her bed after sliding to/from wheel chair or commode and transfers are kept to a minimum. Planned toilet breaks may help to eliminate "urgencies". I do so ramble on.

My repeated comments about her poor eye sight when she asks me to thread a needle for her may be bearing results. A short time ago such a comment by me resulted in her saying that if she could be assured her PD "shakes" would not be a problem then she may think about a cataract operation. She thinks maybe she could talk to her eye specialist who would do the job.

Chapter 521 - A Good Day

"That was a good day" she said as we drove from the car park beneath the Club on Wednesday. "Yes it was" I agreed. Our daughter and grand daughter had driven from Pivot City last Tuesday to visit us to introduce us to our first great grand daughter, now almost a year old. You, the reader, will imagine many of the comments that we can make about the first of the next generation of our family line and all are true. There is no need for me to repeat them. Many years ago we dropped a rose petal onto the stream of life and in turn other petals float into the distant future.

They arrived on Tuesday evening, having driven all day with few stops. They had booked into a motel which saved me assembling temporary beds for them and more than likely gave them greater comfort. I was surprised the young one was awake and quite happy after being confined in a car all day. Then I was really surprised to see her waving at the image of her father, at home, on a tablet; so this is how the current generation begins in the 21st!

On the Wednesday we met at the Club for lunch. I had previously queried the availability of gluten free meals, for both our daughter and grand daughter are intolerant, and was surprised that almost all dishes were gluten free and most of those that were not so could be made so on order. However, at the time no  gluten free sweet dishes were available so we all benefited by not indulging. Then a wander about the shopping centre to buy appropriate items for an evening meal. Out of about a dozen photos taken of the four generations of eldest girls (for that is what they are) in our family line, only one image had all four looking forwards at the camera (well, phone actually) at the same time and with suitable facial expressions, and for one in particular, the ravages of PD were most evident.

We didn't see the three girls before they left for home on Thursday because the smallest failed to wake them early enough; they left the motel about 10AM. Then in the evening a message to say they were home again. We are now able to see the almost daily images of our great grand daughter courtesy of an application installed on my better phone (the one not used for phone calls); a shame that the phone of my Person with PD has no screen for her to be able to show off the little one.

The collapsible commode/shower chair arrived on Friday. It was "dry" tested by using the small green slider board as a transfer medium before we visited Target to buy two large wheeled and two small suit cases, all of which fit into our small car, including the collapsible wheel chair. That same evening I booked a motel room for next Saturday at the next town down the 4 lane as an experiment to see whether we are able to cope away from home, for at least one night. The booking was made prior to me slipping off the high of having our visitors into my usual pessimistic mood. After we have a satisfactory overnight stay next Saturday I intend to plan a short trip for her to see her 97 year old aunt followed by a big trip down south.

Meanwhile she continues to shred the "rope" thick threads of two cushions in an effort to make pillow filling as well as filing and stacking craft magazines, which we don't tend to buy so many any more.

Chapter 520 - Calm Following Storm

The past week was on the poor side of average as far as her dyskinesia and ability to stand into the Sara were concerned. Until Thursday.

On Wednesday evening I forgot to change the cassette on her pump and I failed to check for a "D" or "N" I write onto each cassette (through the spy holes I made in the pump carry bags) before turning out the lights. Consequently the cassette was bone dry at 0620 when I came to replace it at 0620 Thursday morning. I calculated that the cassette was empty from about 0500. After replacing the cassette the flow rate was set from the night rate of 2.2 to the day rate of 6.0.. By 0715 her leg dyskinesias were bad and she wanted to get up. She had difficulty standing into the Sara and then onto and off the commode and I strained to assist her. On the pedal machine she was able yo pedal unaided except her left foot was straighter than usual so the toe of her show tended to brush the base of the pedal machine. By 1030 I had trouble helping her stand into the Sara for her to use the loo. By mid afternoon the dyskinesias were bad. At 1600 she removed her cardigan and turned on the wall fan because she was so hot she was sweating. Ambient was about 17C. Her body temperature measured in her right ear was 35.7C. Dyskineasias remained bad through 1700 when I changed the flow rate from 6.0 to 2.2. At 1900 the Wild Dog Carer and I were unable to have her stand from the wheel chair onto the loo, so I used one of the slider boards to move her onto the loo then off onto the commode then off that onto her bed, along with much effort on our parts. I wondered to myself whether this was the beginning of the final slippery slope. Since I have not been placing the FitBit on her right leg in a long time I have no real idea of how long the dyskinesia lasted. At 2100 I checked the pump flow rate and that the cassette had been changed.

Come Friday morning I expected the worst. At 0630 after I set the pump for daytime running and gave her her eye drops she told me she felt she was losing her "balance", and this as she still lay in bed. Expecting the worst I attached the FitBit to her right leg at 0820. Most of the morning she spent attempting to untangle a ball of wool. The Fit Bit shows dyskinesias began about 1400, although I was unaware until 1530 when she called to go to the toilet and I gave her a bolus at 1540 and increased the flow rate from 6.0 to 6.5 at 1545 and by 1545 the dyskinesias ceased, although she was hot and sweaty, needing the fan on.. At 1710 I noted that her head was bobbing. The cassette was replaced at 1855. Around 1900 when the wild Dog Carer arrived she was standing into the Sara without difficulty. Flow rate was changed from 6.5 to 2.2. By 2250 she woke me asking remove the additional quilt, feeling hot and was trembling quickly but the Fit Bit did not record anything. So a surprising day after yesterday.

Saturday began much the same, although she felt extra cold on the pedal machine from 0700 when I placed a blanket over her as well as a knitted poncho. The Fit Bit was off her leg from 0750 to 0900.
I noted at 1300 "No dysks yet" but on looking at the Fit Bit later she had a burst of dyskinesia between approximately 1045 and 1115 but she does not usually bother to tell me. So at 1135 I gave a bolus and the dyskinesias stopped soon afterwards, although that was unusual. Dyskinesias began again at 1215 so the flow rate was increased from 6.0 to 6.5. Dyskinesias began again at 1600, a bolus at 1720 when she was hot and sweaty, and continued until 1900 when she was able to stand into the Sara without assistance.

Today Sunday began well. She commented that when I flushed the side port of the PEG-J fitting she was able to sense the cold water (often she does not) in her stomach and on this occasion she experienced a cold sensation in her shoulders. No pedal exercise today because the Wild Dog Carer (new) had been instructed to come at 0740 instead of 0750. The morning was problem free so we went shopping for 2 hours from 0930. She has been knitting the remainder of the time (now 1530) and is doing so quickly and without mistakes I think. Dyskinesias began at 1430 and a bolus was given almost immediately. She noticed that her left leg was more agitated than the right one. The left began tingling accompanied by an urgency for the loo. At 1445 I increased the flow rate from 6.0 to 6.5.

Now at Sunday 1530 the Fit Bit shows only a few low level pulses. An email on Friday gave us wonderful news of a visit to look forward to next Tuesday week!!