Chapter 150 - The House with No Mats

She had her leg dressed twice during the week. Inderal is only taken once each day at 6pm. A plain Sinemet has been taken around midnight several times in the hope that this will stabilise her sleep patterns, although she is still rising for the loo 3 times each night.

Yesterday the clan arrived for the annual get-together at our village hall. She surprised me the night before by preparing onions for the BBQ and generally collecting and packing food items to be taken to the hall. She surprised herself by being involved in the kitchen at the hall, though I expect that others hardly noticed, because that is the accepted behaviour of family women folk on such occasions. The ordinary can be very exceptional. By the end of the day she was feeling badly, then her 6pm meds failed to kick-in until well after 8pm.

Around 9:15pm last night I was entrenched in my dungeon drowned in an on-line juke box playing classical when I heard her voice sharply calling my name. I found her crumpled on the floor, she had just left the kitchen area after retrieving her CB radio when she stubbed her right foot on the edge of the carpet square we have under our dining table. She was unable to rise. She had called me on the CB, but with mine stuffed in my jeans pocket and music playing loudly, I failed to hear her. Fortunately the intervening doors were ajar. I had two attempts to raise her. She had pain in her right knee but was able to walk. I seated her in her chair and applied the vibrator for awhile, that eased the pain somewhat. She later admitted there was also a slight discomfort in her left knee and elbow. Fortunately the graft area on her left leg was untouched by the fall. Her funny way of kneeling on her bed while getting in gave her some gyp.

When she surfaced this morning "The place looks awful without mats!" "You'll get used to it" I said as I finished tying string around all the mats around the house and dragged them up the ladder into the roof. Well, all but one - my splash mat around the toilet in the second bathroom and she has no need to get close to that one. I almost had the entire job completed before she appeared to discourage me. Not quite proactive enough for a PD environment but one alert is sufficient.

A friend suggested that over the Xmas period we visit them while they are in Big Smoke for a few days. It is such a simple thing to sleep in strange average sized beds or those instruments of torture called sofa beds and complete ablutions within the confines of a bathroom filled with all sorts of nick-nacks and junk and have no way of raising herself off the toilet and steps every which where. Congestion and fear are hand in hand.

I wonder in what ways I fail to recognise the needs of others with disabilities?

Chapter 149 - A Flat Week

At a little after 9am this morning she has just woken. I make some notes about last night, a blur to me although I know she was sitting outside for some of it. I have taken to recording daily notes again so that we can track changes even if some are not understood on later reading. Last night for instance, after going to bed at 11pm she woke uncomfortable 30 minutes later and to the loo. She says that when discomfort wakes her then the effort in attempting to reposition her body triggers a need to urinate; so loo visits at 0:30, 2:30, 4:30 and 5:10; the latter when she called me to help her out of bed because she was too stiff. She then sat outside to take her 6am meds and breakfast a little later before returning to bed at 7am. We are contemplating her again taking some meds prior to bedtime. Her, on average, two trips to the loo during the day suggests to her that she has nothing else wrong. Each night time this week has been similar to the forgoing, sometimes she sits outside earlier and longer.

Some highlights during the week. On Monday the dressings on her leg were replaced and after returning home she slept for 2.5 hours. Tuesday I decided to take a country drive about 60kms to buy some photo frames at a shop that I found had closed for good so we compensated by an expensive yet tasteful lunch in the cafe attached to the local wood crafts display shop. The trip tired her. She was feeling dippy by lunchtime on Wednesday so slept for a couple of hours. Attendance at our local PD group followed by another change of dressings filled our Thursday. We saw the latest Richard Geere (spelling?) movie Friday afternoon. We completed the week with afternoon tea around the corner with our friends. As you can see, I am attempting to have her involved in an outside activity each day rather than simply sitting in the house. She continues to do her puzzles but little computer activity and no embroidery at all. On Saturday she double checked a document that I had proofed and found several discrepancies which I had missed.

Each alternate day she dons the plastic legging to have a shower on her shower chair. I need to help her. Most evenings I insist we walk at least part way to our village hall, rest on a bench then return home. Last evening she wished to post some letters so we went all the way to the hall - she was out of breath on arrival there and on our return home.

She has begun reducing the Inderal, so for some days now she has had 1x Sifrol and 1x Sinemet Cr at 6am, 12 noon & 6pm but Inderal only at 6am 7 6pm.

She was fed up with the PD meditation voice on the MP3 so I replaced it with plain meditation music tracks which I have not been able to encourage to play continuously, now she wants the PD material back again. My job for today.

Chapter 148 - Return to the Past

She is home now. I collected her from the hospital last Wednesday morning after 8 nights in our local Hilton. The surgeon removed the clamps (stitches were not used) from her skin graft at Tuesday lunchtime while she was under general anaesthetic. His experience removing the melanoma decided him to work on a stable leg. Her Caring Physician may have cast doubts though; he believes that neurological patients should not be anaesthetised; but I suppose it is a matter of draining the swamp while ignoring the crocs.

Did I mention that she developed a slight cough on Friday 31st after a sleepless night? Concerned, I brought in her bouncing ping-pong ball lung exerciser given to her for breathing exercises when she had her kidney operation down in Hot Air City. When a nurse saw/heard her using the device she was told that she could have asked for one as they have them in stock. That is certainly pro-active nursing.

Last Saturday she mentioned to the nurse that her bum area was very tender. Initially ignored, closer inspection revealed 4 small "splits" (a euphemism for the beginnings of bed sores i suppose). A thin film of plastic was placed over the area because "that is better than applying cream". She was having hip and back pains so I went shopping for a small battery powered vibrator/massager which was very effective in easing her pain. A nurse gave her a liquid pain killer rather than the regular Panadol tablets and she found the rapid effectiveness most helpful, even in reducing her tremors (this has been a noticeable effect of Panadol on her PD, I wonder whether others have noticed this?).

On Monday a nurse who had been on leave returned and immediately declared the pedestal fan, that she had been using to ease her temperature fluctuations, "dangerous" and unplugged it. The nurse accused her of having panic attacks and asked what medication she was using for the condition. Just another ignorant professional unaware of some of the side issues of PD. The nurse said that the building was air conditioned so there was no need for extra cooling - I suppose this is why the windows are left open rather than to let in blow flies through the broken screens. Later when a friend visited, the fan was plugged in again and remained that way until she was discharged.

After our initial discussions with the nursing staff there were no further problems about her medication times except one morning a nurse stated that meds were given after "obs", not before. Although on Tuesday because she was in the theatre at noon her meds were delayed until 2pm, then she had to point out that she wished to delay the 6pm meds till 8pm. That night she had little or no sleep. A prisoner and his guard were given a so-called "private" room across the corridor. Lights and a lot of talking kept her awake. On Tuesday afternoon as I was walking past the nurses' station I overhead someone I later learned to be the physio expressing surprise that someone who had been given a skin graft needed to be assessed before being discharged. her inability to get out of bed and stand unaided must have convinced him otherwise.

One afternoon while I was present while she needed 2 nurses to assist her onto a commode chair to be trundled to the loo. I noticed that the nurse (the one who declared the hospital supplied pedestal fan "dangerous") unplug a power cord from the wall while the bed was positioned to position the comode chair. I thought no more about it. Neither did the nurse. In the wee hours of the following morning she found she was unable to adjust the tilt settings of the bed which had at least 4 controls to position separate sections. She was laying in a position that had become uncomfortable to her. No one responded to her alarm which was working this time. After a considerable time a security guard wandered by & asked whether he could help. He found the 3 pin plug on the floor and commented "These beds are worth $6000 and they wreck them by allowing the batteries to discharge."

Another cause of restless sleep during the whole of her time in hospital was due to the 4 bed ward on the other side of the corridor being used as a store room for mobility aids and beds. You need to imagine the lay out of the wards - off each side of a central corridor there are 4 bed wards. There are no doors; instead there are privacy curtains across each ward entrance (the width of the ward) and around each bed. So there is no sound or light proofing between wards and corridor. And at any time of day and night items of equipment are taken to and from the "store room". When she asked why the equipment is stored in the "store room" she was told that the bureaucrats had decreed that this one and only hospital in our town had too many beds for the size of the population so therefore it was deemed necessary to close that ward. Worthy of a mention in that old TV series "Yes Minister". She was able to alert a nurse on Wednesday morning that the prison guard had sat all night in a chair made more comfortable by a pillow he had borrowed from a vacant bed in the adjacent ward. The guard returned the pillow early in the morning. Thoughtful of him, but we do hope some ill patient does not need to lay his/her head upon the pillow in days to come.

The surgeon was agreeable to her being discharged on the Tuesday afternoon but after a physio checked her she needed to show that she was able to walk independently. I had brought in her new collapsible walker with which she practised that night and Wednesday morning. Although we had considered asking for an ambulance or a "disabled" taxi to take her home we settled on our 4WD. Two nurses accompanied us to the vehicle and helped her get in. We were home about 11am.

She found all the hospital staff helpful & attentive, some more so than others and at times some showed signs of tiredness and stress.

At home about bout 1pm she asked me to look at the bed sore area on her bum. There were blood stains on her pants and several small areas were weeping on her right cheek. Once again, supplies left over from the private hospital in Hot Air City came to our aid - a zinc cream preparation for nappy rash and bed sores. I applied a goodly layer of the white tacky stuff. She suddenly felt very tired so I helped her fully clothed into bed; on her side, not her back. Concerned, I rang our friend around the corner in our Village. We discussed a number of alternatives then I settled upon ringing the hospital where I spoke to a junior person who referred to someone senior and I was advised that someone would call me back. Frustratingly, I heard no more until 3pm when our doorbell rang. There stood a strange woman carrying what I thought was a plastic tool box. A District Nurse, contacted by the hospital, had called in on her way to somewhere else. There are aspects of our creaking health system that actually work! I showed the nurse into the bedroom where the patient was waking. The bed sores were inspected. I was to continue applying the zinc cream twice a day. The nurse commented that part of the skin damage had been cause by the sticky tape that had held the plastic "skin" onto the affected area. We had told the hospital that she was allergic to the glue on band-aids. The nurse did not touch the dressings on her graft because she was to visit the surgeon the following day and he is very particular about others interfering with his work. The nurse recommended a large plastic sock to keep the dressings dry while attempting a shower. The nurse planned to return on Friday.

Thursday back to the surgeon for the dressings to be changed. We both saw the graft area for the first time; an area some 6 or 7 cms in diameter that looks dark grey with a matrix pattern upon - I immediately thought of a burn mad by the inside surface of a waffle iron. The experts said this was good, the graft had taken.

The District Nurse returned on Friday, took various details for the inevitable reporting procedures, advised what assistance we can obtain if we need it and she will return once the surgeon feels his part of the job is complete. The nurse also showed us how the use the plastic "legging" that I bought at the chemists. The thing looks like an elephant sized condom. Very comforting to have a caring person show an interest in her problems.

In my view she has reverted back to the condition she was in prior to visits to the physio and her return to the Falls Unit at the hospital and prior to her beginning Sifrol. I am having to help her in and out of bed again, help her to rise from chairs, just like before. Yesterday I helped her shower while seated on her commode shower chair after placing her left leg in the elephant condom. She needed drying and dressing. After that I queried whether she would prefer me to contact family and cancel a planned visit today. She did. Family were understanding.

When I returned from supermarket shopping yesterday afternoon she said "You can do it much more quickly without me."

She has mentioned that a smell is coming from the graft donor site that has been covered in plastic film since Tueday last week. There are no signs of temperature, pain pr throbbing so we just hope there is nothing amiss until she sees the surgeon hopefully for the last time tomorrow.

Today is our 45th wedding anniversary. I hope to take her to the club for lunch although she is not keen. She needs to get out and about. Sitting in a chair all day is little good for her. I on-line ordered some lace embroidery designs for her while in hospital; she is yet to look at the files.

Late update - she did not wish to go out for lunch so we compromised on an afternoon tea at the club.

Chapter 147 - Not a Pleasant Week

The hospital called early Tuesday morning for her to come as soon as she was ready rather than the appointed time late morning. A shortening to the tension of waiting.

Last weekend she thought she may be unable to suffer the operation because she had developed a bad case of sniffles, dripping nose, although without a rise in body temperature or blood pressure. When she checked by phone with the hospital on Monday she was asked to cough into the phone then told that it sounded OK and to present next morning anyway. This must be a form of "on-line" diagnosis?

So on Tuesday I left her at the hospital around 9:30am. When I called back near lunch I was told that she would be awake after 3pm. So she missed her noon meds and the 6pm were late about half an hour. As expected, the staff locked the bedside drawer in which were her meds. But only the ones they supplied. Hers were left in her little bag, except for Sifrol which the hospital pharmacy did not stock. I pointed out to the nurse that she had been administering her own meds for 18 years and was told that the bureaucratic system demanded that the meds be locked away. Next morning I complained at the nurses' station about the tardiness of meds delivery, suggesting I would raise a stink even though I realised that at times their duties to other patients may need to take priority. The drawer remains locked. However, the meds have been provided on time, usually early, ever since. Someone seems to written up a standing order for this to happen. Perhaps they observed the tremors in her legs, the left of which is not to exercised.

She has been in pain without complaining about it. In the first 24 hours she had a shot of morphine but since she has only wanted Panadol. She is capable of #1's on a bed pan but is unable to accomplish #2's "laying on a bed pan" (in her words) so the two staff lift her from the bed onto a commode chair then wheel her to the loo. The surgeon is most unhappy about this because he says her left leg must be completely rested and not take any weight or pressure. Fair enough, yet the stress of attempting to perch on a bed pan is much more likely to cause her left leg to tremor sufficiently to be equivalent to running around the block. He is concerned that the graft may not take and an ulcer develop. The leg remains securely wrapped in its bandaging.

What we understood to be a hospital stay of about 4 days will now be at least a week, for the stitches will be removed in theatre under general anaesthetic next Tuesday. The general because the surgeon finds her leg easier to attack without tremors present. This is a concern because her "Caring Physician" has often said that general anaesthetic is just like removing the brain, washing it in chemicals then replacing it and is not good for anyone, let alone patients with neurological problems. But then he is not a cutter and has also said on several occasions that the "blemish" on her leg was OK, just needed monitoring.

She has accepted being in a public ward. A few nights ago when she needed attention her alarm button failed to work and the woman in the bed opposite had to use her button to summon a nurse. The DB9 plug on the wall had fallen out because there were no retaining screws to hold it in place. So she was relieved that she was not isolated in a room on her own. I have since brought a screw from home so now the DB9 cannot fall out when there is movement on the cable and the control box of buttons. In that same box is a very small speaker to provide sound from the overhead TV set, although the sound level is so low that TV dialogue is inaudible. When she mentioned this to the nurse yesterday he said he would put in a work order but it will be Monday before anything can be done. The other night a woman brought from theatre refused to be placed in a public ward, demanded a "private" room because she was a "private patient", so after some debate was wheeled away. I wonder whether she pays the $200 each month like we do? These so-called "private" rooms in this hospital are more like isolation rooms where critical, dying and prisoner patients are placed and priority is on a needs basis. We think she is safer in a more "public"area.

The last time she was in this hospital she did have the luxury of a "private" room for a short while until a cancer patient needed the space. In that room the window was propped up with a rather weathered roll of toilet paper. In her present room the window will remain up without help although the fly screen is damaged so that it will not remain clipped in place. In consequence of this and I suppose other similarly damaged fly screens on other windows, each day I have seen several very large blow flies droning through the ward and hallway. On one occasion, I was accompanied in the lift by a blow fly. A smart one, why fly down toward the kitchen area when you can take the lift? When the flies were brought to the attention of a nurse the reply was " we are not allowed to spray in the hospital any more". I think that is a good idea, but I wonder where the flies' feet have been and what their feeding tubes have sucked on? Apparently the catering staff who deliver the meals are a greater danger to patient health because they have been directed not to touch patient items on those tiny over-the-bed roll-around tables so if there is insufficient space to place food trays then the trays are to be taken away. There was a piece of tissue or bandage, slightly stained, beside an un-occupied bed opposite hers. She told me that she had heard that only the cleaning staff are permitted to collect such things dropped on the floor.

The night before last she developed some chest congestion which she brought to the attention of the staff. So I brought in the ball sucking machine she kept from her stay in a private hospital in Hot Air City and that seems to have helped her. One of the nurses complimented her on using the device and said she could have been supplied with one from this hospital. Perhaps so, but why was it not automatically offered as it was in the other place where it was decreed that it was to be used regularly?

Several days ago she discovered that her meal was not as she had ordered for bed #43. The woman in the opposite bed #42, a diabetic, noticed hers was incorrect also. When they compared the dishes, they realised that their food had been "swapped" together with the menu sheets returned on the trays which showed the correct name and bed number. I tried explaining this at the nurse's station last night and the result was a puzzled stare. I found it difficult to convey the message without sounding confused myself. Yesterday the woman in #42 moved to another hospital so today may be interesting - I have predicted that she will receive no food at all.

I sent to all & sundry an email containing the hospital's switchboard number because I thought concerned friends & rellies may prefer to speak with the horse's mouth rather than hear or read vague summaries of her condition from me. Many have. Unfortunately the hospital restricts when calls can be connected to the room (she does not have dial-out capabilities on the bed-side phone) and other calls are mis-directed. Consequently our daughter made at least 2, maybe 3 or 4, attempts before she was connected.

Yesterday in late morning I found her sleepy, tired and un-washed. She had hardly slept Thursday night, due to discomfort & some pain. When the staff came after breakfast to wash her she asked that to be delayed because she was about to sleep. She later mentioned to them that her rear end felt very tender. At first they thought there was nothing to be concerned about, then after discovering a couple of spots they applied ointment and some bandage patches (so she says, I did not look).

Having said all the above, the staff have been considerate and helpful, even though they often show signs of stress and weariness. As we do ourselves. Should there be a next time, and with increasing age there will be, we will opt for a private hospital in Hot Air City. That certainly will cause contact difficulties for us but will minimise other stresses.