Chapter 394 - A Delaying Disappointment.

We wonder how soon she will be contacted to appear at Hot Air City hospital to undergo her L5 stenosis surgery. Early this week I rang to ask,  and was called back in the afternoon "She is 57 days into her waiting period of 90 days which has been extended by an additional 60 days due to Dr M's workload." This response motivated me to send a FAX to her neurologist asking for a referral to another surgeon, pointing out that we are covered by a highly priced private fund. I am puzzled that spinal surgery that may, just may only, help her to walk again, which she has not done unaided since her fall when she was in West Beer hospital at the beginning of May, be classified as "elective".

On Monday I took her to see the Practice Nurse J. at our GP's. J. was unable to inspect what I thought to be the beginnings of a bed sore because there was nowhere for her to lay down for the area to be inspected, so a referral to a Community Health nurse was arranged. Meanwhile I was to keep the area protected and dry (no Calmoseptine!) but when Community Nurse E. arrived on Wednesday the area was almost without blemish, no broken skin and to leave it uncovered. It was pointed out that he gauze I had over the area had bunched, therefore likely to cause further problems.

The reduction in pump flow rate from 6.6 to 6.4 mL/hr seemed to improve her condition early in the week, measured objectively by how much she kicked and the ease of handling her on and off the loo. Yesterday Wild Dog called me to collect her from Respite; her dyskinetic kickings had begun around 2PM and were too much for her to tolerate by 3PM. So this morning I reduced the flow rate further, from 6.4 to 6.2 mL/hr after re-reading instructions provided by West Beer suggesting the normal (whatever the hell normal may be) flow rate is between 2 and 6. Reminds me of our bitter experience gained at the specialised clinic down in Batman City when she suffered very bad panic attacks following discharge due to the quantity of anti-Parkinson meds given; then a local specialist seriously advised reducing the quantity, thus restoring her to an almost normal condition. As I must have said before, it's one thing to prescribe medications during hospital stays, or at brief clinic or consulting room check-ups but such situations are abnormal; experts should view patients over a 24 hour period in a typical environment, at home that is. We see her neurologist, Dr F., next week at 3PM, about the time her legs kick steadily if not violently. Unless I reduce the flow rate to an amount to eliminate dyskinesias.

No progress with a lifting device. The daily care supervisor from Wild Dog, involved by the OT, has been away for a week. I think the idea was for Wild Dog to loan or hire a lifter to us for trial.

Nurses, physios, OT's are all being told she sits on the loo for extended periods attempting to poop. She has the feeling that "something is there", about to come. I need to rouse on her to return her to her wheel chair. One day I simply left her alone; she remained en-throned for 3 hours. I tell her her mild haemorrhoids cause the feeling. All & sundry say she mustn't stay so long, get on, try, then get off. Otherwise she will develop "bed" sores. Even after 1/2 an hour, her bottom area is pink from sitting on the loo; someone suggested a special padded cushion. On Wednesday last, between 0700 and 2200, I noted 10 transfers, ranging from bed - commode, commode - loo, wheel chair - loo, which on that day did not include transfers wheel chair - recliner or wheel chair - car. I attempt to use the plastic slider as much as possible.

After bringing her home from respite yesterday the in-use DuoDopa pump failed to detect a new cassette (we change cassettes late each afternoon) and beeped continuously until I removed the batteries . All the same, she is now using the spare pump. Undecided whether to return the suspect pump, nothing may be found wrong, for now it seems to be operational again.

Chapter 393 - End of the Tether; How Far Away?

By Monday 10th August I decided a DuoDopa flow rate of 6.6 mL/hr had caused her much pain, discomfort and dyskinesia for the previous 9 days so I increased the flow to 6.7m not varying the rate since then. However, each afternoon I try to remember to turn the pump off for a half hour or so by 4PM for doing so seems to reduce the amount of dyskinesia she suffers, but is not always effective.

Up to the Highlands town to see the eye specialist again. He was pleased her eye pressures had dropped from  more than 30 down to  less than 20. Latanoprost is to be continued and a check up in 6 months.

After her shower the next day, Thursday,  she cross threaded the attachment to the PEJ tube. Around lunch time she felt squeamish, again at 3PM and also tired. When I replaced the cassette at 1530 I noticed that the DuoDopa had been leaking onto her clothing, how much was hard to tell. That evening she was quite calm, spending hours on-line unsuccessfully looking for knitting patterns until 2230.

The following day we saw the OT at Community Health for clarification of the "single texture" diet she recommended for her. The main criteria seems to be not to have thin liquids and lumps of food in the mouth at the same time. The OT also obtained permission for me to deposit the partially used DuoDopa cassettes in the Community Centre's disposal bins, located within the building. Some days later I called in with a large plastic bag containing some 70 or so cassettes.

Some days she is very sleepy, dropping her head while seated in the wheel chair, maybe for only a couple of minutes. This morning as I fitted the DuoDopa pump she woke and spoke to me so I told her what I was doing and to go back to sleep, which she did! I attempt to fit the pump around 7AM without waking her so that I can have a shower first then clean the stoma and have her ready for the Wild Dog carers about 0750. Should she fully wake there is an urgent need for the loo, but then she usually piddles into her night time incontinence pants or into the commode as there is insufficient time to transfer her onto the loo.

The OT H and assistant J came to see her on Monday 17th August. One of the first H noted was that the wheel chair needed more padding on its seat before she acquired bed sores on her bum. H will investigate assistance for a lifter device and arrange for demonstrations on the usage. That evening I ordered a special pillow for the wheel chair from Pelican; she doesn't like using it because she senses she will slip off the seat; it arrived two days later. In the mean time we tried an inflated donut shaped pillow, which upset her, almost sliding her onto the floor.

That same day she accidentally sat on her lower right arm while putting herself on the loo; unable to extract it. She screamed into the CB. I had difficulty lifting her sufficiently to remove  her arm. I thought the plight she got herself into should have been easy for her to resolve; another example of how far she has travelled?

Perhaps my imagination tells me she is punding more after returning to a  DuoDopa flow of 6.7 mL/hr, but she is re-arranging the contents of the kitchen cupboards again, the lounge room again, her sewing room again, She is always keen to have the wheel chair jammed into our small kitchen. She begins knitting projects then abandons them. A week or two ago she knitted a beanie, we bought an artificial rose to attach to it, then she decided the beanie had "rabbit's ears" so pulled it apart. Several sets of needles have a few inches of knitting on them. She bought quite a lot of wool for a cardigan for me, but not finding a suitable pattern on line (there must be thousands?) has not returned to it; perhaps that is for the best, rather than ruin the wool by unpicking a half completed work.

Yesterday, to my horror, I noticed an abrasion on the rear side of her upper left leg, where some flabbiness exists now that she has lost some weight. I can only imagine the broken skin was caused by inserting and removing the commode pan at shower times as well as infrequently when contents of the pan need to be emptied, and the lip of the pan rubs on the flabby part. I placed a bandage and Calmoseptine over the area last night on going to bed; looking clearer this morning, I applied more of the same. If I'm unhappy with the area tomorrow I'll take her to see the Clinic Nurse.

What I now refer to as "punding" drives one towards insanity, she needs to sort and rearrange things, she gets ideas fixed in her mind and won't budge (today she sat on the loo from 1100 to 1410 (3 hours!!) because "there is something there" and should she remain long enough it would come away, she won't believe me when I say it's haemorrhoids (which she has). I detoured her towards productive activity by asking her to sort, fold or hang 4 baskets full of washing from the last few weeks; in checking just now little progress has been made. When I prevent/discourage her from a rearranging activity she becomes obtuse; I become angry. This is not where I want to go.

I need someone to talk to at these times. Several days ago a mate rang to chat about our various age related problems, his wife's recovery from an L5 cyst operation, his handling of domestic matters this past month, etc etc, then when I attempted to voice some of our issues he patronised me about being a good carer for so long. What bull shit! Patronising is not much help when one needs to off load stresses and strains. Then he decided we should change the topic from illnesses to their planned 7 week holiday in South America before drifting onto the topic of his very young grandchildren. Honestly, I was relieved when I was called on the CB radio for help getting on or off the loo, I forget which, then he was hard to shut down before I hung up. I must speak more seriously to the psychologist I see each month; usually about inconsequential matters.

And I'm bored to death discussing techo matters with another mate once each week; from that I intend to escape to pursue creative activities on my own once again. I have mentioned to several people that looking back over my life I have tended to be a loner, for most years working on my own, interacting with as few people as possible, for many reasons, some of which I can readily identify.

A friend from down South rang to talk to her some little while ago, I must see how she is. And I must take the washing off the line, in the gloomy dusk.

Chapter 392 - Trending Downhill

Her dyskinesias have increased rather than decreased with the reduction of the Duodopa flow rate from 6.7 to 6.6 mL/hr. Perhaps her punding has reduced; perhaps I'm growing used to it. I told her that I will return the flow rate to 6.7 if there is no improvement by today, but I have decided to maintain it at for at least another week. For most of this week she complains of being unable to complete a poop, staying on the loo for upwards of an hour. She says there is a "lump" which she can't expel, and is afraid that if she stops trying then there will be a mess in her pants later. Yesterday morning this happened while still on the commode and consequently there was smeared shit on the commode and the loo seat. Yesterday and this morning her overnight bloomers leaked, wetting the satin draw sheet and the waterproof kylie sheet beneath. More washing. Last night I gave her an additional Movicol to see if extra bulking agent may assist her expel the last bit of poop.

Her toes on both feet are sore, very sensitive. A few nights ago she began bandaging both feet in cotton wool and tape on going to bed to stop her feet bumping together while in bed or touching the bed end. Fortunately an order from Pelican for a pair of special fleecy lined boots arrived 2 days ago to relieve the foot and toe pains; she didn't want them because of the expense. Last night one of them was kicked off, although she hadn't noticed, the other one keeping her feet apart.

The swallowing test report arrived in the mail, indicating the nature of the tests and the findings. A soft diet avoiding mixed food consistencies has been recommended. That is, a Single Texture Diet. Obvious I suppose that she must avoid small dry particles, but even lumpy pieces of meat or vegetable within soups and the like. Foods to avoid include watermelon, pineapple, runny sauces or gravy in stews or casseroles (that puzzles me!), obviously any breads, yoghurts etc containing seeds, salad dressings containing garlic. About 90% of what is in our fridge and cupboards is off limits to her!!!

She has attempted to dress a small doll; after pinning pieces of fabric onto the doll's body she began to snip off pieces to shape the fabric; ruined what she had so began again. Several times I think.

Chapter 391 - Wearing Out

She is no longer nodding off at breakfast, over her crumpet dripping with malt extract. Each morning after I assist her onto the commode, both legs kick together for some minutes and that I find novel, since at most times her legs kick/shake irregularly. The Personal Care lady this morning drew my attention to her legs; I simply said the legs kick in the morning before the medication is effective and again later in the day when her medication levels are high.

I seem to be assisting more frequently with helping her stand while Personal Care and I attempt to pull up her incontinence pants and slacks in position around her ankles. She leans forward onto her trolley, wheels locked, while we, one each side, each link an arm through hers and lift her and with our free hands grab at the pants around her ankles. As we do so, her bottom begins to bounce up and down at an ever increasing rate until all three of us tire of the effort and she drops seated back onto the bed. Three to four attempts are usually required to raise her clothes. She has to have her shoes on before these actions begin. Without shoes, she hurts her toes easily, which is strange since she usually is unable to tell whether her left foot is on the floor.

Her commode is the ideal device to use when putting on or taking off her overnight incontinence pants. Around 10PM the Duodopa pump is shut down and she uses the loo one last time while I spread the bloomers across the commode seat. The bloomers are the type that open out flat and have sand paper strips, obviously some sort of velcro, to attach the sides after wrapping around the body. I assist her to transfer from loo onto the commode, have her move a little to position the flattened bloomers before loosely wrapping the sides around her. Returning to the bedroom she lays on the bed where I pull tight the waist straps then the flap that comes up between her legs, giving that a good tug. The velcro tabs hold all in place but I add stick tape around and over those tabs for additional security and to prevent the rough sharp surfaces of the tabs from ever touching her skin. WE have had no overnight leakages for several weeks.

An early appointment at the local hospital for a modified barium swallow test last Wednesday. The speech therapist told me afterwards that her swallowing was reasonable and at the moment was no reason for concern. A report has been sent to our GP. Perhaps the swallowing is OK but something is causing food to form balls in her mouth, then she needs to spit them into tissue. She says different textures in her mouth at the same time cause this. Yet she is able to eat sliced tomato on dry biscuits and another time she is unable to swallow the skin of sliced fresh tomato.

On a Duodopa flow rate of 6.7 mL/hr (as set at West Beer hospital last week) her dyskinesias moved into mid evenings, sometimes earlier, sometimes later. That's good. But the most annoying part (to me) of her punding has continued. Have I mentioned the light weight jacket I bought that lacks sufficient pockets for my needs? She said she could add a pocket on the inside and stitch it exactly where an outside pocket is positioned. That sounded quite simple to me. So a square of fabric was stitched on using a running stitch, then she decided to go over that stitching with a zig-zig, unfortunately not in a straight line, then at least another row or two of zig-zag, before she decided to "strengthen" the new pocket pocket with bias binding, which has been snipped at, removed, more added. She was about to add another pocket onto the opposite side of the jacket until I argued with her not to add another one. She has been working at this new pocket, in fits and starts for about 2 weeks now, not continuously, perhaps an afternoon or morning here and there. A task she would have taken 1/2 an hour at most a few years ago. One afternoon I saw her attempting to thread the needle of the sewing machine; when I returned at least an hour later she was still attempting to thread the same needle  with the same piece of thread. She is persistent if nothing else.  A couple of days ago she was cutting at the strips of bias binding to trim them. The jacket has been abandoned for now after she began to add another piece of fabric, perhaps to make a pocket flap. I'm unable to dissuade her from these activities; it's simply maddening, I begin to lose my cool, I just have to walk away, not wishing to hurt her feelings. Today she began dressing a doll as a Sumo wrestler (the doll already looks the part); I'm interested to see the outcome. Because yesterday I reduced the Duodopa flow rate from 6.7 to 6.6 in the hope that the punding may reduce during this coming week or so.

Punding is just the most awful part of her problems. Obstinacy, single mindedness, irrational behaviour, concentrated attention. Watching her attempt a task that begins to go awry I see her fumbling to make corrections, making changes, pulling the whole apart and starting again. Much later giving up.

A few days ago she began to knit a beanie, a somewhat complicated design. She lost the site the pattern came from and when I was enlisted to find it again I discovered another site with a video clip demonstrating the technique. She watched the video several times, seemed to have mastered the pattern, yet she came home from Respite yesterday saying that she and another elderly lady had agreed the pattern was wrong, so possibly that project will be abandoned.

Last night prior to going to bed I found her digging through her sewing room looking for wadding to wrap around her feet to protect her painful toes. I convinced her to wear an old pair of woolly lined Ug boots to bed but these were abandoned as I got her into bed. I am about to order a bed frame to protect her feet. We had one on loan last year but she rejected it because her feet kicked against it.

On the way home from respite she said she felt better than on previous days, reduction in Duodopa flow rate perhaps? Here's hoping.