Chapter 334 - The Only Thing Keeping You Out of a Nursing Home ......

That's what he said, very bluntly, I was shocked, I became a little emotional without anyone noticing, and I came to a realisation of our situation not completely understood before. I felt fear, concern, responsibility, oh shit!

The speaker was Simon Lewis, Associate Professor in Cognitive Neuroscience (amongst many other titles) at the microphone in our local Club for the Parkinsons Seminar organised by our local PD group. Amongst all the other useful PD related information what Simon Lewis said that impacted me was this:

"The only thing keeping you out of a nursing home is your carer."

Simple words spoken to an auditorium half full with PWP's. Simple words, not addressed to me, no more complex than ideas others have advised me, like "You need to look after yourself as well", "You need some respite as well", "Make sure you take some time-out yourself"; and similar phrases. All spoken to me, making me feel a little selfish should I indulge myself; spoken to me - he who is still fit (?), healthy (?) and still has all his marbles in the game. Yet only Simon's words spoken to my PWP (as well as to 60 or so other sufferers) have ever made me realise how vulnerable she is, dependant upon my well being.

This morning, Sunday, is an example of our developing routine these days. Except that for unknown reasons this morning she slept through her 6am meds, only waking at 6:45am, most unusual. I rose to empty her overnight catheter bag, usually containing 800-1000ml but this morning only darkish 300ml. Then I completed 10 minutes of Wii Fit Hula Hoop hip rotations, the only exercise that prevents my lower back and hips ceasing into pains. Then I shower. Since we began replacing the Apomine syringe each evening at 10pm all I need to do before the Temporary Aged Care Program carer arrives at 8am to assist with her showering is to seal the Apo pump with sticky tape into its box and hang it on an elastic belt around her waist. One or other of us tidies the bed clothes. While she is showered I prepare the light breakfast we have. Showering and dressing takes about half an hour.

The following is also typical. She pushed her trolley  to the loo at 9:50am (having her 10am meds whilst there), remained throned for 40 minutes, needed help to get off and onto the wheel chair because she was unable to walk away. Back on her recliner chair in front of the TV she began to feel bilious, called for a large plastic bowl once used for Xmas cakes. I gave her some Mylanta to ease her stomach, read the cautions on the side of the bottle advising against taking the stuff within 2 hours of any other meds; she said she had had her meds at 10am. Since her meds are always 4 hours apart, taking Mylanta seems to be a no-no. She began having disquiet in her tummy, much flatulence, halfway through her Re-hab Hospital holiday so the symptoms were blamed upon the pureed food she was given after I mentioned she needed sauce on most meals (I bought a bottle of BBQ sauce while she was in there). Laying in bed in the dark hours this morning I concluded that her biliousness probably is due to the increases in Apomine; from 8 to 9ml halfway through the hospital stay, up to 10ml near the time she left and now to 11ml from last Thursday evening. Perhaps the amount of Motilium needs to be increased. I must contact Polly our PD nurse in Hot Air City about this problem. By the way, Polly also gave an excellent presentation at our Seminar.

Having described our morning routine, yesterday's was a little different. She needed the loo prior to the TACP carer arriving for the shower. She came out of the bathroom holding the catheter in her hand; it had popped out! An RN came on Wednesday to routinely replace the catheter fitted in hospital. While here, she showed the RN her gramma vines out the back. On returning, she fell at the back door without harming herself, her left leg having collapsed. On Thursday mid-morning the catheter gave her mild discomfort which passed after awhile. I rang the TACP emergency number to be advised they were unable to help so we should front up at the hospital. So we spent a pleasant hour and a half there and a new catheter was fitted.

Last Sunday she was able to walk well enough to shuffle her walker around the clothing area at Kmart where she stocked up on more long loose dresses (on special) to cover yet at the same time provide comfort and convenient access to the catheter bag on her leg. However she waited on her walker while I filled a trolley in the supermarket which I took to the car, returning to push her seated on the walker. Her left leg is becoming less reliable by the day.

On our visit to see Polly elastic stockings were suggested to assist maintaining her blood pressure. A pair of black ones were ordered through our chemist and each morning the TACP carer fits them.

Tuesday saw her back at Respite for the day, loaded up with bags she has made for their fund raising sale table. She usually works on such items for an hour or two each day, although slowness, fine finger movements, eyesight all give her problems when manipulating fabric and thread. I am sometimes needed to thread needles; she either uses her fingers for threading or nothing because she has difficulty manipulating mechanical threading aids; sounds contradictory doesn't it?

One day a physio came and ran her through the stages of LSVT BIG. I suspect a professional is able to help her more with this than I can.

Flu shots at our new doctor's on Thursday at 3pm. Although her leg bag was emptied prior to leaving it was about half full when we arrived at the doctors so I improvised opening the tap beneath the car rather than risk problems in the waiting room (well little children are allowed aren't they?). As it was, I needed to have my ears syringed and we arrived back home around 5pm.

Friday of course we attended the Seminar. I pushed her in on her walker, on which she remained all day (more comfortable than the chairs) and I was able to zip her out to the disabled loo for bag emptying when convenient.

In general her mobility has gone down the tubes. She fears the instability of her left leg, often pointing out the dystonia in her left foot. However, I sense that she has much less pain, cramping and tingling in her legs and feet. She sometimes mentions burning sensations in her legs. Occasionally a slight headache as she had this morning.

After a chocky coated biscuit this mid-morning she became bilious for a time without bringing up anything, yet called for the big bowl just in case.

At noon today she pushed her trolley around the kitchen table a few times until her left leg "burnt". By 12:30pm she felt a little hungry and asked for cheese and tomato on toast. By 13:35 she felt ill, called for the big bowl. I heard her retch once without voiding anything. Now at 2pm she has had her meds, hoping they stay down; she nurses the bowl.

Her current schedule:

Chapter 333 - The Busyness of Home

I brought her home Thursday before last, the 13th March. While taking several bags of clothing, clean and soiled, to the car prior to putting her into it, I realised some of the conveniences of living in a country town; parking (fee-less) at the side door of the hospital in the disabled slot, five minutes drive from home, a brand new re-hab section of hospital (we hear there are plans to modernise the remainder but in our lifetimes?). Our OT who instigated her entering Re-hab accompanied us to the car to supervise her getting in bum first, in a motherly way. She left hospital with several days supply of antibiotics to take plus a script for more should such be needed; they haven't. Plus several leg and overnight bags for the catheter. I'm given the soft message that she is likely to remain with a catheter till day's end. I've since ordered in ten of each and although the overnight bag can be used for much longer than one week, one of the RN's who is calling on us at home suggests replacing both bags weekly to avoid infection. The catheter itself is to be replaced monthly but I'm unsure, forgotten, who or where the replacement takes place. She will be managed for 12 weeks by people from Temporary Aged Care Program who will organise daily showering at 8am, regular visits from an RN, Physio, Social Worker, a sitter should I need to be away, transport if required, shopping if required, house cleaning if required, etc. People keep coming out of the wood work (or a cone of silence ;-) to help her; we had no idea that such help was available for her.

At 8am the next day, Friday, someone arrived to shower her. She is a little uncomfortable about this, for several mornings following she tended to be in the shower before help arrived; she was unable to see the danger of showering without assistance, even mine at times, and now after a week of help I think she has mellowed, not being so keen to have the process over before help arrives. I replaced the Apo syringe prior to the shower help arriving so the pump was placed into its little sarcophagus-like box with tape wrapped around same for water proofing. A couple of mornings she was quite active and capable, the remainder very stooped and shuffling. Around lunch time this first day I became stressed because her "leg" bag had not filled from empty at 7.15am even though she had drunk at least a litre of fluids. By 2.15pm there were signs of leakage, the bag was still not filling, so, not quite in a panic, I rang the TACP number for advice. The suggestion was that the thin blue hose from the catheter was possible kinked. I found no kink as far along its length I was able to explore; as I spoke to the RN the bag began to fill, probably due to her movement and partially standing while I explored. Later it was explained that the small hole in the end of the catheter can be covered by the bladder wall, thus preventing flow.

On the Saturday afternoon the lady her showered her on Friday came to sit with her while I spoke and demonstrated my new 3D printer at our Curmudgeons Computer Club. Having competent company for her was a great relief to me during my absence. After I returned home we went grocery shopping, although she remained in the car. That evening we noticed  bright red  spots around her right ankle, not itchy or painful, fading as the week progressed; forgot to tell anyone about the rash, now gone.

Her leg and foot tingling have mostly gone, to be replaced by occasional burning sensations, sometimes not long after taking her conventional meds. One new symptom - she detects that her legs are kicking sideways or actually dancing yet when she looks her legs are stationary. I have felt them without detecting the merest tremor while she feels the sensation of dancing.

She has not mentioned any delusions or hallucinations since returning home. While in hospital she described to staff that there had been a person sitting in her walker near her bedside, also a fire extinguisher that became a little girl; this resulted in the resident speaking to her Neuro in Hot Air City then deciding to reduce her Apo back to 9ml since such are side effects of the Apo. I am pleased no one informed me about this because I maintained her dose at 10ml.

On Monday at 7am she developed a "squeak" in her throat, a "burning up" feeling from her toes to her bum yet her temperature was 36.3 and her BP 148/92 73 and 15 minutes later she felt OK. The manager of TACP had arranged a GP appointment for us at another surgery after we told him that the GP's at the other place changed frequently. In an old refurbished house, we are not impressed with access or parking. In the waiting room we were each presented with 3 pages of medical history questionnaire unable to be completed on the spot (I returned the next day with what we had not completed). Our time with the GP was mostly taken up with describing PD matters, to the point where she became stressed that her 2pm meds time was approaching so we had to leave, by the back door since that provided almost level access back to the street.

Tuesday saw her return for a day respite at the "Sheltered workshop". That evening she began to feel ill, much flatulence at both ends. This has continued since.

On Wednesday morning she woke a little after midnight with a painful throb in her right hip and lower leg and Ice gel was applied. Quite vigorous dyskinesia in the right leg until she fell asleep about an hour after taking two Panamax. After waking around 2am for a Sinemet she was unable to sleep for quite some time. This has been her worst night since the catheter was fitted.

After breakfast on Wednesday she had a headache across her forehead from temple to temple. At 10am the Social worker visited, followed by one of the RN's who showed me how to replace the leg bag, since I did not know when the hospital fitted that one and a almost a week was gone since leaving hospital. I ordered a stock of both leg and overnight bags which arrived next day. Then in the afternoon her hairdresser arrived to cut her hair and mine as well, since that saves me wasting time at a barber's down the street, and my hair is cut better to boot! That evening she needed the wheelchair to get to the loo and when into bed her feet began "motionless dancing". When I emptied her leg bag before fitting the overnight bag, I noticed one little "tadpole" of black, probably blood, in her urine. None since.

Also on Wednesday we made a quick trip to her favourite clothing shop where she bought a number of slinky long dresses hoping such will cover the bag on her leg whenever we go out,  since most of the slacks she wares are too narrow to permit easy access to the leg bag.

We were driven on Thursday to Hot Air City to see Polly PD Nurse. Fantastic! I reclined in the rear, dozing and reading, occasionally being interrupted by comments from the front seat. The best part was not having to get her from the multi-story car park into the hospital - we were both much more relaxed for the appointment. We decided to maintain the existing meds and 10ml of Apo until direction for change is given by the Neuro. Polly will obtain a standby Apo pump for us, in case of failure this far from Hot Air City. Also, a PD data monitor is available, a PD Kinetigraph Logger, worn on the wrist like a Dick Tracy communicator, which will be loaned to her for analysis of her PD characteristics. I'm looking forward to seeing the device, although I wonder whether her slight wrist activity will reflect what happens to her legs. Polly agreed that replacing the Apo syringe on going to bed at night will help me minimise the down time of the pump, thus medication, which should be beneficial to her as well as reducing the amount of activity each morning. So from here on the pump is changed each evening. And when we receive a second pump I can prepare it before hand so the changeover will happen almost instantly. Using only one pump, at least 10 minutes is required for the pump piston to return back into the housing before a filled syringe can be fitted.

Around 4am Friday morning she needed the wheelchair to get to the loo; much wind, felt bloated, passed some lumps (she calls them "pebbles"), some very soft. I gave her glasses of soda water which eased her bloatedness. The RN who visited suggested Mylanta, so I bought some at the chemist while our cleaner was here.

She says the flatulence has eased by this morning, Saturday, even though she has made several trips to the loo simply to make loud reports. She also says there is slight burning in her throat (reflux?) so I gave her another Mylanta dose. A matter to discuss with our new GP on Thursday when we have flu shots. She is more her normal self today, sitting at her laptop catching up on endless emails, interrupted occasionally by reports in the loo; with some pebbles. Down the street later for food stuffs and, I suspect, more slinky clothes.

Chapter 332 - Not So Weary as Worn Out

She remains in Re-hab. I'm there every morning between 7.30am and 8.15am to remove the pump, sometimes a nurse assists with showering, while I prepare the pump and attach it. Most days I'm there for several hours in the morning then again in the afternoon, sometimes I have lunch there as well. She has become lonely and bored, rarely doing any crochet, has read one page of a historical romance I bought her to replace the e-book reader which she asked me to take home for she was afraid it may be dropped and break, watches little TV and skims the daily paper (whether local or Big Smoke papers, why does any one bother to read them?). She keeps telling me not to buy her "puzzle magazines" because the stories in them are junk; quite so but at least the puzzles give her some little mental stimulation so I intend to persist buying them for her. Yesterday she asked me to stay with her for company. I wonder which is worse, having another patient in one's room or being alone? The hospital staff are always in and out of her room, and she is taken for a walk around the corridors pushing her walker. When I've assisted her with such a walk her left leg usually fails her before completing the circuit.

She made a comment on Wednesday that her hand tremors are worse, although she thought herself more ON than OFF during the day, yet never attaining the "sense of freedom" she hopes for. Having her chart ON/OFF periods half hourly has not been successful, although one day she marked being ON most of the day with added up and down arrows to suggest waxing and waning. Perhaps so, I have only noticed that her leg dyskinesias are at times  quite brisk. Late that same Wednesday night, with her legs thrashing, bed clothes tied in knots, unable to sleep, she piddled the bed, then after a change of sheets she was unable to sleep until about 4am.

Polly the PD Nurse was given permission by the Neuro for me to raise the Apomine from 9ml to 10ml. "Can't be done unless the Re-hab doctor signs off on it" I was told. Rather difficult since the doctor was absent. Then a FAX had to be organised advising this change. So late on Thursday another doctor received the FAX and wrote the change on my PWP's sheets. So on Friday I filled the syringe with 10ml Apomine and 10ml saline. Amusingly, my PWP told the resident doctor sometime on Friday that the Apomine had been increased and then went storming off because she had not been told about it. I am rather pleased that none of the staff realised that I had increased the Apomine from 8ml to 9ml Friday of last week, on the verbal advice of Polly and the Neuro. I appreciate that a medication paper trail needs to be maintained, even though we are self medicating.

Also on Thursday we had a round table meeting with staff involved in her welfare to discuss the Transitional Aged Care Program. All up, we must have talked with all of them for an hour and then again in her room with the manager of the programme. ACAT need to assess her again to declare her eligible. Seemingly as a result of the meeting where I expressed my concerns about chocolate coloured piddle (after air exposure for an hour or so) that leaves slimy stick residue in the commode, a decision was made to insert a catheter that afternoon. Works well except for the one occasion when the plumbing sprang a leak. An initial pathology test indicated no UTI, but by Friday morning (after culturing I suppose) a bladder infection had been detected. I wonder just how long and how many useless UTI tests ago this infection began? She continues to experience a need to urinate which puzzles her.

I am hard pressed to say there have been any changes in her condition now, on her third day with 10ml of Apomine. Her "conventional" PD pills remain unchanged since I last reported them. She sweats so much her face looks as if she has been in a sauna, and most of that I suspect is the high humidity in the hospital rooms, because I sweat like a pig while there as well. She says she is drinking a lot yet I somehow doubt it. This morning she asked a nurse whether there was a fan available, but no, people sometimes brought in their own. So I went home to collect a small fan, then did some shopping for dried fruit and jubes for her, then took the lot to the hospital. One matter of minor note is that the tingling in her feet and legs has changed to a burning sensation. Also she has been experiencing the shudder sensation, "someone walked over my grave" feeling, whenever she nods off, causing her to wake with a start. Each evening meal arrives sometime after 5.30pm so clashes with her 6pm meds and that can't be good for her at times.

She has had few phone calls, mostly because the hospital phone system to the wards has been defective for most of the time she has been there, but now seems to be fixed, and there seems to be a general ban on patients ringing out. She has only had two visitors; a lady who is a hospital visitor from our Parky Group and our neighbour at the rear. Partly my fault because I did not broadcast far and wide that she was in there.

Chapter 331 - Weariness

Calls on Monday from the OT wishing to book her in on Wednesday to the new Re-hab section of the local hospital. After some phone call ping-pong we agreed for her to do so on Tuesday about 10am. When that time came she was feeling very OFF, so rang the hospital to delay admission until around 11am, into a 2 bed room, although it's unlikely she will need to share with anyone. When we parked outside the hospital she was quite positive that the day was Saturday because the number of parked cars was less than usual; a similar comment was made later; each causing me concern.

As usual with PD meds, the staff locked them in a drawer and when I went in to the hospital day, Wednesday, at about 7.45 to demo the Apo pump, the ward sister figured out that apomorphine was a category S4 drug therefore had to locked in a safe, so that is where the ampules have remained ever since. That same nurse was intent on dispensing the PD meds and as she did so for 10am my PWP yelled "That's the wrong colour, it should be blue!) (no cognitive problems with this one!) after which the nurse decided that she can obviously cope with dispensing her own meds, so she has continued as at home, sorting the meds into labelled pill bottles, except that the drawer in the bedside table is sometimes locked, more often not. Down the street I bought two new money belt bags for the pump, the original one we bought was becoming a little tatty. Also, she needed some jubes to eat. I told friends bumped into in the supermarket where she was and later rang the neighbour at the rear.

I went to the hospital again around 8am on Thursday as a precaution in case the pump gave the nurse any bother. It had; she was unable to prime it, simply because she had not filled the syringe to 20ml, rather only to 15ml. I said to the nurse "More juice is needed to make it up to 20ml" so she scurried off to where ever she needed to do it; I felt concern because I was not specific about Apomine or saline, so when the nurse returned, I clarified that she would have used 4 ampules, and she agreed. The pump had been primed and only contained 22 hours worth of fluid. Damn, for that meant the next change would be due around 6am the following day. My PWP was showing concern about all this, saying that she was able to trust me. The nurse decided that if I didn't mind, why didn't I come in each morning and change the pump over myself. So I have done so, each morning giving the appropriate shift nurse a quick overview of the pump. Unfortunately other patients' needs tend to call them away, and this morning, Sunday, was the first time I was able to show a nurse taking down the pump and setting it up as well. And by today the pump has returned to our approximate 8am changeover without having to mess about wastefully with an extra filling, since an allowance of about 1/2 an hour for a shower moves the start time of the pump forwards. Each morning I take a pack of 5 ampules  with me

The above problems illustrate the lie to the distributors of Apomine providing training to local hospital staff. Yes there was some sort of demonstration around the time we became involved with the stuff, but I suspect only to the palliative care nurses, one of which was assigned to us but he has now left the area. I hate to think of the issues that may arise should she go into the medical wards of the hospital. So there were a couple of boo-boos in Re-hab as described above but they are understanding enough to permit us to perform our own meds. And the nurses are each very interested in learning about the procedure.

On Thursday, she was given a "leave pass" for an appointment with Polly the PD Nurse in Hot Air City. Polly obtained permission for the Apomine to be increased by 1ml to 9ml plus 11ml of saline This change was implemented on Friday. While there, Polly arranged for a cognitive test for her; she gained a score of 96% so I am relieved, my fears are unfounded. The score reminds me of a character in "The Botswana #1 Ladies Detective Agency". Polly believes the LSVT BIG programme was too tiring for her, when I mentioned that she has been unable to cope with very little of the routines at home. On the return trip we called into home for her to gather some knitting etc but she was not up to looking for patterns and needles, so settled on a couple of incomplete carry bags needing some hand stitching. I am afraid she will become bored silly without some hand activities.

Each day since the Apomine was increased she has experienced dull headaches, frequently freezes, sometimes on the loo and requires the assistance of two nurses to extricate her. She has filled in a couple of my ON/OFF charts, not showing any improvement. Walking with her pushing her walker around the hospital corridors, I am able to detect when her left leg begins to fail; there is a distinct change in the sound of her footsteps.

Although I have not seen as much of her these last few days, I like to think perhaps there is less dyskinesia. She says her left foot continues to have a sideways pulling force upon it, as if a string is attached to the big toe. The Re-hab resident doctor was stern with her about calling for loo assistance 4 or 5 times each night. The OT and the Physio have told her not to concentrate on her feet (when dyskinetic) and the motion will cease; I wonder what they think is wrong with her.