Chapter 537 - Relief in More Ways than One

My growing concerns that her piddling and pooping activities are less frequent and of smaller quantities may be unjustified.

On Wednesday 23rd the appointment for her to see Dr P. the ophthalmologist was encouraging; eye pressures were 21/23 but  vision is blurred in her left eye, as if there is a film over it the patient says. The doctor considers that the eyes are pinker than normal, prescribed Tears Again and Siguent Hycor and asked her to return next month. The scripts were filled the next day and commenced; the Tears Again spray was for 3 times each day and the Siguent Hycor  before going to sleep at night. Next morning, Friday, both eyes were puffy, pinker than usual, weeping and she said itchy. I rang the surgery and as Dr P. was not there that day, I left a message and followed up with a detailed email. About an hour later the surgery rang back with a message from Dr P. saying to discontinue the Siguent Hycor for one week then begin again. By yesterday her eyes were much improved and this morning were normal, except the sensation of film over her left eye. Also, on Thursday we bought a pair of cheap reading glasses with x4 magnification, probably to no avail because she doesn't seem to be using them.

For Wednesday's appointment, rather than take the exit to drive along the country road to the town, I continued up the 4 lane to the more northerly town then doubled back the few additional kms. Then after the appointment we had lunch at the club where we usually meet the Ugly Sisters. She ordered a Mediterranean Salad, mostly consisting of Tofu pieces, cashews, some feta, tomato pieces and a reasonable amount of greenery. We knew she couldn't eat the latter and she found the Tofu somewhat tough to chew and swallow. When served, the waitress queried whether we needed "take home " boxes - I said "No thank you". Yet when I later went to the snack counter for coffee and cakes she asked a waiter for such a box and when I returned she was picking bits and pieces from her plate to place in the box. I think this was the first time I have felt embarrassed about her behaviour, she was behaving like a child. The box and contents are still in the fridge here at home and I later learned that the contents were for me, not for herself. The box and contents need throwing out.

On Wednesday she saw that she needed to fast before the blood test next day; I sometimes wonder which of us is declining cognitively. So on Thursday she had no breakfast because I had made an appointment for her to have a blood test, suggested by the GP after I "stood in" for her at the appointment I made the week previously when I was becoming concerned about her bowel regularity and on that morning I had left her at home because her bowels had suddenly been very loose. So after the blood test was taken and she had a scheduled B12 injection we spoke to the female GP who suggested using Movicol occasionally as well as Benefiber. Then we bought the x4 glasses mentioned above before having lunch at the new local cafe. Thursday was the very best day she has experienced in a very long time, I did not notice any dyskinesias during the whole day. Except for becoming very stressed and in consequence very sweaty at 2030 (in bed) this had been a perfect day! Since then I have attempted to reproduce the circumstances by not giving her the usual vitamin C and D tablets, chewable calcium and benefiber without much luck.

Since Tuesday last she has not had a bowel motion of any sort, until this morning. I have given her Lax-sachets and Movicol Junior after the lady GP said it was OK to cautiously intermix these bowel encouragers. I am concerned that her PD has begun to badly impact her intestinal muscles which I understand causes the constipation problems for Parkies. So I see this as just another nail in her proverbial so I must include in our routine regular doses of stool softeners, mild laxatives as well Benefiber. And of cause continue encouraging her to take more fluids. This morning I got her up slightly earlier than usual onto the commode then to the pedal machine. She did not piddle much in the commode possibly because her overnight pull-ups were soaked, and had leaked onto the "greeny" on the bed (the green disposable sheet covers the washable "bluey" blue sheet which protects the usual bed clothes). I gave her two Movicol Junior satches mixed in fruit juice. Then after pedalling for some 5 minutes I asked whether she had done anything more; she thought she had; and had she done what! A massive dump (of which I had to take a picture), quite soft. A person in normal health would surely have noticed its passing. As I disposed of the commode pan contents I almost regretted giving her the two Movicol Juniors a short time before, but quickly realised even should she fill her pants in an emergency, that is better than intrusive procedure, beginning with enemas.

A few minutes ago she rang my phone. I found her wheel chair stuck in her sewing room, needing the loo. She was unable to sit comfortably, stress began dyskinesias which discourage bowel motions. She passed 3 small marbles. About to transport her back to the wheel chair she decided she needed to lay down so there she rests until she rings me again.

Now at midday she remains on the bed, mouth agape, sleeping quietly.

Chapter 536 - In a Stupor

I just woke, woke to the sound of tortured cardboard. When I remember each lunch time I try to watch the international comedy presented by PBS from the USA detailing what that fool Trump has committed. And today I fell asleep, waking after the programme finished to see her attacking my plonk cabinet; more precisely pulling the bottle of Johnny Walker Green Label out of its container, then proceeding to dismember the container. "Why are you doing that?" "I want to put wool in it." "But why pull it apart?" "To get these bits out" she said, lifting the lid on the rubbish bin to show me. Then when she told me she intended to glue the box back together with timber glue tucked away in her sewing room I said that I will do that for her. I liked the box sitting on top of my cabinet reminding me of of my cousin from over in the West, a gift from earlier in the year while on a visit. the naked bottle sitting there now is simply tawdry, especially since it is empty, the contents having disappeared a glug at a time during the cold winter months.

Her leg dyskinesias were so vigorous this morning I hesitated to leave her at the Dance for Well Being group this morning while I went for batteries for my hearing aid, hardly used since my left ear was infected, only to find the "clinic" closed for staff training, both the single receptionist and one therapist I suppose. When I returned some 20 minutes later she was still kicking wildly, seated in her wheel chair. At completion when I collected her her clothing was quite damp from sweat. At home, after the loo, she was still kicking with her feet on the recliner and as she dozed the activity ceased. Some Sustagen and chocolate biscuits must have been calming, for as I dozed watching PBS she began the activity described above. The sound of a tin baking dish falling onto the floor calls me to investigate. Not a baking dish but an empty Sustagen tin I left on the bench top, knocked onto the floor while she was looking for a sharp pointed knife and hurriedly returned to the drawer. She went looking for glue in her sewing room, digging through several drawers before I noticed a yellow cased glue stick in a container on the floor. She told me that was what she intended to glue the dismembered cardboard box back together. Pointing out that PVA glue was much better, I used that instead, temporarily holding the edges together with sticky tape. Once secure, I imagine the misshapen box will be thrown out.

When I began the 6AM pump cassette change etc on Monday 14th October I was surprised to find the cassette tubing was screwed into the side port of the PEG stoma fitting. Had she done that during the night or had I mis-connected it at 1750 the previous evening? The latter I suppose. So the duodopa had been pumped into her bowel rather than her small intestine for 12 hours, ending up in much the same place but I imagine its uptake may have been poor, as my notes for that day indicate; poor mobility getting her up, did  two turds into the commode bowl (a good thing), needed to slide her off the commode onto her bed to complete dressing her after a shower, wanted to lay down again. By lunch time things were normal again; she had been cleaning in a corner of the room for more than an hour, mid afternoon she sorted puzzle books again, a snooze for awhile then she trimmed an edge on a piece of fabric.

Concerned about her lack of bowel activity and excessive sweating, on Wednesday I gave her several electrolyte tablets in water, insisting she drink this as well as other fluids. I made an appointment for her to see the GP the next afternoon. Fortunately, shortly before I took her to the GP appointment she had the "trots" so I left her at home while I made the appointment on my own. I described what had been happening with fluid intake etc. He suggested that she may have had constipated diarrhoea and to ensure she drinks sufficient fluids. Then he gave me a script for another blood test which I am yet to follow up.

 A few days ago a completed an on line survey from UNSW about carer welfare, taking about 30 minutes. I did not bother to keep a copy of my responses. In a section about issues causing carer stress I think I only gave a really high rating to a question asking my response to serious health issues about myself. I have been thinking about that more often lately, perhaps as a result of my left foot fasciitis and the thought of being laid up (with better shoes and inserts it's almost resolved). For if I'm immobile then she will have a stint, or longer, in a nursing home. And I begin debating with myself whether it better I or she "goes first". I have little wish to contemplate either situation.

I continue to bandage the toes on her left foot to protect the small scabs on the two toes. The scabs are quite dry and hard but I don't wish to see them knocked off. Over in the suburban development a cafe has opened and our two visits there have been pleasant. I had hoped we might have lunch there today but her dyskinesia problems decided against that. Tomorrow a check up at the ophthalmologist will show her eye problems only need a new pair of reading glasses to finish the job. She has been reading small print but how well I have no idea.

Having finished scribbling here I went to see how she was; needed her feet up again and asked me to vacuum the portion of her sewing room carpet covered in small pieces of wool and fibre. The remnants of a knitted blanket "needing fixing" that she brought home several years ago from the Wild Dog care group she once attended. Wool of various colours had been knitted into small squares then stitched together to form a rug; the sort of thing well meaning people make for geriatrics to drape over their legs while seated in comfortable chairs. In her mind there was something wrong with this rug she brought home, from time to time inspecting it yet never getting around to the "fixing". I suspect not all the squares were the same size. Several weeks ago she seriously began the fixing. She began scissoring the squares apart, hacking into the squares and doing so required the loose threads to be pulled apart and dropped on the floor. She continued doing this for several hours at a time, over several days. What has happened to the remains of the rug I'm unsure. From time to time bulging plastic bags are marked for the garbage bin. With all her activities, in her mind's eye she sees that an action needs doing yet is unable to stop the action once it goes wrong. I am puzzled that she never becomes upset about what I see as failures. It pleases me that many of her stitched projects are stored away, only occasionally being displayed to new carers from Wild Dog when she seems to relive the pleasure of seeing things well done, even if a decade or more ago.

Chapter 535 - Too Young to Forget, Too Old to Remember

I have been scribbling this blog since 2006 in an attempt to record the changes in her condition to be referred to occasionally for medical purposes as well as to keep a few interested people (not many these days) aware of her condition because I find explaining matters verbally somewhat difficult. Also because no one ever asks about her progress I assume they read this blog (although I sometimes doubt it) so I need not bother to wonder about their lack of interest. What began me writing along this line today is my daily recording of each daily event as it happens, in a range of notebooks, beginning I can't remember when and having established the habit of using A5 sized spiral bound pads. Recently I have begun to rely on my note taking as a proof of my having completed daily tasks about her care and I now find I must check these notes frequently because my memory is not what it used to be. During the past year I began writing the date and D for "day" and N for "night" on the labels of the Duodopa cartridges as I replace them on the pump, once each morning after 0600 and again around 1730 each day. Also, when there were more eye drops needed after her glaucoma/cataract procedures, I set an alarm on my phone for these and Duodopa  activities. Even so, I have cancelled alarms while engrossed in other activities without completing tasks. On Thursday evening, the night of her birthday, I had not changed the Duodopa cassette at 1730 and discovered the cassette completely empty the following morning. Also, I had changed the overnight flow rate to 2.2 rather than 2.0 ml/hr. Consequently, Friday did not begin well. So I have decided to record in my notebook each night that I have checked the pump cassette and settings before I turn out my light. Similar mistakes have been made during the last year and are always recorded, although doing so does not correct the problem of my forgetting in the first place and later not checking.

On Friday that did not begin well we met the Sisters for lunch at the RSL up the 4 lane. Although contributing very little to the conversation, she enjoyed herself none the less. That morning she scraped the scabs off the knuckles of the two toes on her left foot (mentioned in previous posts), leaving blood stains on the carpet. Each morning I apply Betadine before bandaging the toes. Fortunately there is no sign of infection. This morning I left the bandage and sock on her left foot, covering all in a plastic bag held in place with a rubber band. Of course her dyskinetically kicking leg and the Wild Dog Carer took insufficient care under the shower, so the bag filled with water.

I am concerned that she has had minimal bowel motions since last Sunday, just the occasional marble or two. She is difficult to encourage to drink more fluids.

Her main activity during the week, maybe 2 or 3 hours for several days, was attempting to untangle a skein of "wool" which is now mostly shredded and thrown out, retaining only a few small bundles. Yesterday I found her snipping pieces of velvet cloth and was told she had dismembered a cushion (one of those "U" shaped ones to avoid pressure sores) and was making another pillow. She continues the snipping today.

Almost time for lunch after which I must motivate myself to go down town to buy some more bandages.

Chapter 534 - Another Week Begins

We spent a number of hours yesterday watching episodes of Downton Abbey, something almost endless we can watch together. Toward the end of the last episode of Series 2 (we had watched some 3 episodes) and she lost interest, wishing for something humorous. And her leg dyskinesias were bothering her. The toes on her left foot bothered her as well. So I found some episodes of Kath & Kim which she later said she did not understand. At early evening she felt she was slipping off the wheelchair so I re-positioned her slightly. Later, as I went to prepare her for the arrival of a Wild Dog Carer, cleaning teeth and the loo, she again said she was slipping. And that was what she did - slipped off the wheel chair onto the timber floor. I was stressed about what to do; all precautions tell me not to lift my partner, call the ambulance since wild Dog Carers are prohibited from lifting as are our village management. Each time something similar has happened my mind races through the consequences. So I placed a lounge chair behind her, bent my knees, wrapped my arms around her and lifted her onto the chair. Then positioned the Sara Stedy for her to stand into. Just as she was seated therein a knock on the door from the Carer. So we wheeled her onto her bed and with some difficulty changed her into nightie and incontinence pants; then using the small green slide moved her onto the commode onto which she was seated just in time to receive the largest bowel motion I have ever seen. The Carer cleaned her while I cleaned the pan. We cooled her perspiring body with a damp towel. Once comfortable, both fans blowing on her she went to sleep, quietly through the night.

This morning she is quiet. The toes on her left foot remain tender so they were lightly bandaged again. After breakfast I read some on line stuff then went looking for her to find her beginning to put clothes away from the four baskets full that have been at the bottom of my bed for almost a week. I know it sounds beastly for me to leave such jobs for her, usually on Wednesdays when a Carer can help her, but she becomes engrossed with sorting and filing activities,  although whether she find such entertaining or enjoyable I have no idea. I find if I attempt to be too persuasive about such jobs then she resists and busies her self with whatever she has to hand. So I have not bothered trying to interest her in the baskets of washing. This morning I found her having started the job digressing to hanging up my used trousers and shirts which I had left on a shelf; well I am a bloke after all! I cleared that stuff and loaded the washing machine and also roughly placed washed sheets and pillow cases in the linen press. I hear that the washing machine has finished its job so I will check on her progress with clothes sorting. It takes ages for her to put the clothes away, over and above the time taken to be neater than me when I do it alone to be rid of the task.

Chapter 533 - Onwards Down a Slippery Slope

Last Wednesday 2nd October for a checkup by the ophthalmologist. Her eye pressures were 34 and 23, higher than was expected. She was unable to read by either eye further than the top to lines on the eye chart. I was asked to reduce the frequency of Prednefrin eye drops from three time to once per day in the morning and to continue Ilevro as before, once at night. Prednefrin increases eye pressures. These eye drops are to be discontinued from next Wednesday and Optifresh can be used for eye lubrication. She continues to read on her eBook, but the font is so large there are only 7 or 8 lines displayed on the tablet.

I have spent this last week stressed because a re-application questionnaire for incontinence support arrived in the post for her from Medicare. This is the first time since she became eligible for the support that her eligibility has been questioned. I have now learnt that having a Home Care Package cancels her eligibility. In consequence her additional incontinence support from the state government also ceases because its eligibility criteria depends on the other. I imagine there is a strong possibility that the value of the benefits may have to be refunded. Woe is us.

While parked at our village hall last week collecting our mail one of our neighbours from around the corner began chatting to me than asked permission whether it was OK to speak to her seated in the front seat of the car. A few words were exchanged then the woman left. Her cognitive decline must be more evident than I realised even though it has been evident to me for about a decade. Yet obviously not to the geriatrician she no longer wishes to see, and at the last appointment with him he stated that there had been no decline since the previous one some 6 months before. And that reminds me of the time I was asked by the coordinator of the Dementia Carers' Group I attend that I not speak of PD because other potential attendees may think any one caring for a PD victim may think they are can readily attend. I accidentally found   "The Parkinson's You Don't See: Cognitive and Non-motor Symptoms"  at https://www.youtube.com/watch?v=S2LP_5PC9LU which dates from 2014.

I collected her repaired Brother sewing machine yesterday. Several weeks ago I caught her disassembling the machine to fix it because "it would not sew". Previously I had been able to "fix" her problems and demonstrate that the machine worked. This time a spring was removed and an adjustment cam was loose. This time I was unable to make the needle threader to work after replacing the parts. The repair report states "Repair needle threader, reset needle bar alignment and adjust auto thread cutter". The screwdriver that is part of the machine's tools has been "lost", not that doing so prevents her from using scissors and such like to "repair" anything.

She needs to open boxes, drawers, folders to see what is inside. This past week she decided to re-file her many folders of embroidery, quilting, knitting etc designs all contained in plastic sleeves in 3 ring binders or the type with many plastic fingers. The latter were dismantled and some of which were broken. The many fingers of those don't align with 3 ring binders so she did not ask for a hole punch but instead attempted to force metal rings through the plastic sleeves, a mess resulted, so now there are loose covers, sleeves and broken plastic bits pushed, by me, into cupboard space just to get rid of it all.

We often buy balls of wool (not really wool is it?) at the junk shops, some of which she knits into squares for no specific purpose that I know of, usually dropping a few stitches unnoticed until the ball runs out, then she decides to undo the knitting, resulting in knots and tangles, so what was once a large ball becomes a number of smaller balls after knots are cut out.

She has wrecked a number of slacks after finding loose threads in the cuffs and, well, pulling one thread loosens others and so one. Several have been cut along the leg seams because they were not made correctly and need fixing. Such things eventually find their way into the rubbish after she returns to the task, weeks later, unable to remember what she had intended to do with the repairing.

Today she has taken a set of "hand made" cups and saucers out of her tall cupboard and lined them up on the lounge room floor. I attempted to discourage her but she becomes aggressive and compulsive, so I am learning that my attempts to direct her to other activities. This morning I took four washing baskets of washed clothes into the bedroom for her to put away, a task she likes to do even though she takes hours to do a little of a normally half hour job, usually done on Wednesdays when a Wild Dog Carer is looking after her. Today I must have been too early or too late with my suggestion for the activity. Anyway she has now distracted herself by arranging the contents of another cupboard. I suspect much of her problem is her eyesight, needing to busy herself and realising that knitting and sewing are presently beyond her abilities. I try to interest her in watching TV but she does not concentrate, becoming easily distracted, and even though we subscribe to four streaming sources (which is mostly juvenile crap for immature adults from the USA) perhaps her eyesight is a problem here as well; I suppose it has to be.

Last Sunday R&K passed through on the way to some where else. We were to meet at the Soldiers' for lunch. On such a beautiful morning we went down the street early, partly so I could buy a cheap photo frame (that's a non-relevant story to this waffle). She was half asleep and dyskinetic so I left her in the car where she slept for an hour before I took her inside. Inside her leg dyskinetics worsened so I rang R&K to say "let's cancel" and to call in on their return on Thursday. Thursday was little better but we met for a bit of lunch although she was unable to swallow much of the fettuccine she ordered and her legs were bad. On Friday morning she complained  of two painful toes on her left foot; skin had been damaged on the joints of two toes; whether from her shoes on Thursday or rubbing on bed clothes that night. I have placed band aids and later bandage over the toes, which remain painful this morning.

My left foot plantar fasciitis problem was not mending after buying new shoes and using an ice pack so yesterday I took myself to the podiatrist who attends to her toe nails, bought a pair of $60 shoe inserts from him and following his advice bought a pair of $160 casual lace up shoes. The most expensive shoes I have ever bought, remembering that my early years at school were attended in bare feet and I can still remember the sensation of walking into the chook yard to retrieve eggs with greenish-whitish-blackish chook shit oozing between my toes. I'm telling myself my left foot is feeling better. Should this become worse she may end up in a nursing home sooner rather than later.

Postscript Sunday 6th October.
Between 1315 and 1730 yesterday afternoon she was sorting, handling, counting her best cutlery trying to find a missing splayed. Only one drawer full not needing the time spent in repetitious activity. I was not involved in counting the items. She just said one was missing. I do not see why, I'm sure we haven't used them in years. She was not stressed, simply kept handling the utensils, removing each set from the drawer then replacing them, she said she was not counting but knew that one was missing. I am tempted to check myself but fear she will return to this pointless task she wasted 4 hours on yesterday. Today Daylight Saving is upon us once more causing some impact with her medication timing.