Chapter 460 - An Ordinary Week

Nothing of consequence. Glaucoma and PD routines unchanged. The Carer from Wild Dog, 1/2 hour late on Tuesday evening was turned away because I already had her in bed. An excuse about office scheduling was given as the cause, but they are supposed to ring if running late. An email of my concerns resulted in a phone call of apologies and asking for my ideas on overcoming their problem. When I recounted a tale we were told that may be the reason some some clients may still be eating a meal or insist on completing a computer game at a carer's arrival the response was that I should not have been told that.

To escape the house on Friday we drove 40 kms to the small country town we often visited some years ago. I had not realised how disability unfriendly the place was. Firstly, the town has reverse-in angle parking, the gutters are deep and very few and narrow ramps and only two disabled slots, one on each side, thus awkward for wheel chairs. Only about 3 shops have step free access, all the remaining older shops have at least one step at least 10 cms high. We had coffee, hot chocolate and apple slices before returning home. She took the few rows of knitting with her. A knot prevented her doing much, and before returning, we sat in the car for some 10 minutes untangling the knot.

I had scheduled a Wild Dog carer to take her shopping for 2 hours yesterday morning while I had a pot of tea and yarned with a friend in the club. She only bought some coloured pencils and an art pad. She was tempted by a Slow Cooker for $25 at a junk shop but it was too heavy to carry on the wheel chair. So later after some lunch we found a similar cooker for $20 at KMart In the evening she chopped the vegetables bought about 3 weeks ago, mixed the soup stock items she wanted last week end and the whole has simmered in the new cooker over night.

An item she shouldn't have bought was a box of lollies, described on the rear as "crisp coconut specialty with whole almond centre". She took several minutes to spit out the mouthful of grated coconut, a bad choking hazard for her. I rather like them!

During the week she chopped off the narrow bottoms of trousers bought last Sunday so they will be easier to get on and off. And an older pair have had all the seams cut out to make them smaller to fit her. In attempting to sew the pieces together she became intent on disassembling the sewing machine when the top thread insisted on tangling in the bobbin holder; the problem was an incorrect size of bobbin. Later she intently read the machine's manual from cover to cover, at one point exclaiming "I didn't know it did that!" after reading about the lever that cuts both top and bobbin threads; very strange, since she always uses the lever when sewing in the past.

Last night once in bed she was very dyskinetic, wild actions with her legs and tightly grasping bed rails and/or the monkey bar. She needed the wall fan on full to cool her as well as the gel filled pad to cool her head. At 2300 I gave her 2 soluble Panadol because the Kalma were not to be found. This morning she has been very calm and slightly "dippy", rather disoriented.

Chapter 459 - Progressing Where?

In an indirect way I discovered then contacted the local Alzheimer's Dementia group in our town. A very supportive lady JB invited me to their group meeting last Wednesday; they meet on the 2nd Wednesday of each month in one of the clubs. On my way in I bumped into the carer of a PD person we know from the local PD group, not knowing that she was attending the Dementia group for the first time as well. Then I learned that the lady running the group is the mother of the OT who indirectly helped us onto the path of support packages when several years ago my cared for person fell in the doorway of the local hospital's physio building. And the guest speaker was the lady in charge of the carer's support group in Hot Air City that funded the short respite at the seaside last November. Then I leaned that another new person to this group lived in the street just outside our village. JB gave me some literature and suggested she meet with me at a coffee shop or at our home. I thought the latter more suitable so she can observe us both, in a fortnight.

Feeling I needed some training to cope with what seems to be a developing situation, I searched for on-line tutorials, quickly finding presentations given by Teepa Snow so I watched and downloaded 16 tutorials of hers from YouTube. And learned a lot, that I need to adapt my behaviour to be more in keeping with the needs of my cared for one.

Had I mentioned my contact with our state PD group? I had asked about locally available "toys" that may interest her to occupy her hands, satisfying to the touch. Some printed material for items such as "sensory cushions" arrived but to my mind she has not reached that stage and may be better served by having the materials and ideas to make such things for others, thus giving her creative satisfaction as well as the sensory experience. Another thought is for her to dress dolls.

This morning at 0900 we left to shop, returning at 1200. First to Coles for some food stuffs, overflowing one of the wheel-chair attached trolleys which was not lost today, then to the paper shop for $20 worth of craft magazines (she insists on needing them yet hardly uses them after browsing through them once before filing them) before a milkshake for her and a coffee for me. Then around KMart where we bought clothes, more sheets for our beds, a couple of rag dolls for her to dress, a tea set painting kit (danger of messiness here), a puzzle book.

I have decided to ask Wild Dog Care for more respite hours, say about 4 hours on a Saturday, so I can meet for coffee with a mate at one of the clubs and complete the week's shopping on my own. And should she wish and if the carer has a suitable small vehicle into which  she can use the slider board to enter from the wheel chair, then she can do her idea of shopping, that is, touching, fondling, each item of clothing she sees, and at a slow pace, rather than at the rate I push her between the racks.

A few days ago a call from a distant cousin in another state to see how we were coping. Apart from about 4 face-face meetings ever and a number of emails about our mutual family history we are not very close. Yet she commented at length on my commitment, dedication and much else to caring for my person with PD as if she knew at first hand the trials and tribulations of the task. I have difficulty coping with such statements, for the words do not seem to apply and in some way sound false. Others recently have voiced the same. I'm unaware that any read this Blog to have any insight to our problems. I must find appropriate words to discourage such comments, for I am left bewildered by them. I know not what to say in reply to "How is she?" other than "fair to muddling" for I have no desire to be seen as a winger, detailing our day to day issues, for the purpose of this Blog is to relieve my need to waffle on about what is happening in our lives. And I'm beginning to avoid talking to other oldies about personal health problems; not that I am disinterested and unfeeling, just that it is like talking about the weather, sporting events and shallow meaningless movies.

Most mornings on waking after 0600 she comments that she is unable to open her eyes even though her "eyelids are not stuck together". On Friday she decided to clean dust off the front door; in doing so, she dislodged the end of the thin draft excluder then continued pulling until the whole strip was removed. Yes, the door did need cleaning. On Tuesday she again sorted books and objects in the TV room, including disassembling the WiiFit system which I continue to use, so I put it back together. When I returned from my "respite" on Wednesday, I discovered that the carer had allowed her outside, so she dug in the raised garden bed once again with her hands, requiring her cardigan and shoes to be later washed free of dirt, and of course the floor needed sweeping after she was taken to the bathroom to wash her hands and arms. Another day she took 8 soup bowls and saucers out of the cupboard and aligned them along the dresser with serviettes and spoons. Several weeks ago while shopping and while I was searching for one of the wheel chair attachable trolleys, she collected a number of breads and such plus several sealed packages of fresh vegetables to make soup. I think we each had one bowl each then over a week latter the remainder was thrown out. Today she collected more ingredients at Coles to go with the rest of the fresh vegetables (well those that hadn't gone off by this morning) to make a better brew.

One day she spoke of listening to music in the dark hours when she woke unable to return to sleep. So I bought another internet radio for $300 for her use, setting preset buttons for her to select Radio National, a couple of spiritual channels, some Celtic music, some quiet popular music. The first night she found she was unable to tolerate ear buds because the music was "in her ears, not out in front of her", which a neuro may be able to explain as a spatial mapping problem. Since then, she listens for a short time from the radio's speaker before trying to turn it off.

Chapter 458 - My Mistakes

Last Tuesday I failed to replace the Duodopa cassette late in the afternoon, even though I had continued to record other actions such as application of eye drops and even changing the Duodopa flow rate and flushing the outer port at 2100. She woke me several times in early morning shouting and noises as if she was having a bad dream. I woke as usual at 0600 on Tuesday morning; she was making gurgling and gasping noises. As I replaced the cassette as usual at this time I saw that the cassette was completely empty!! Then I saw that I had not written in the note book that the cassette had been changed. She remained asleep while I replaced the cassette, started the pump at the day rate and began the Morning Dose of 8.0 ml and when that completed I initiated a bolus dose of 2 ml. Her legs became dyskinetic as usual as she woke at 0640. During the day she began sorting the contents of the dresser drawers. A bolus at 1300 and attempted another after 1500 but the action was locked out, she must have leaned on the button sometime earlier. At 1720 she called for an urgent trip to the loo, but I was too late and she had messed her pants. The Wild Dog carer had her into bed shortly after 2000 when she decided she wished to knit on some new large needles that came with a recently bought craft magazine, soon stopped when matters went the stitches went wrong and large leg dyskinetics began. I gave her a bolus which may have been inappropriate when she became excited and restless. At 2215 I changed the pump setting to the night time flow rate of 2.2 ml/hr as she began to fall asleep attempting to knit on smaller needles.

About 2 hours later, Wednesday 0020, she woke me, very dyskinetic, very hot needing the fan on, she was diagonally across the bed, legs in outside rails, one hand grasping the rails on the other side, the other hand grasping the over head bar, fingers clawed, breathing quickly, she was rational but staring. Remembering my mistake of the night before, I checked the cassette was almost full, the flow rate was 2.2 and there was about 1 minute between pump cycles. At 1235 I stopped the pump to see whether the dyskinesias abated. Some 5 minutes later the dyskinesias stopped, she continued panting quickly and shallow. I set up the small personal fan for her. She said her feet felt funny "inside", she became calmer but was not blinking. At 1250 she asked for an eye shade to help keep her eyes closed.

Then she commented that she felt cold with the eye shade on, asked whether the personal fan was on high, so it was on the low setting. So at 1256 I turned the personal fan off, she still breathed quickly, she felt tired, commented "I'm a bit on the warm side but better than being cold". I decided against experimenting to determine whether she really felt colder with the eye shade on. At 0100, with eye shade on and the personal fan off she began breathing more deeply and longer.By 0110 she was snorting and snoring a little as she slept. I restarted the pump at 2.2 ml/hr.

At 0133 she woke, spoke, "feels warm, doesn't want fan on". At 0145 she said she felt better. no dyskinesia. At 0425 she breathed regularly, making occasional noises.

I woke late at 0650, Ganfort eye drops, replaced the cassette, flow rate changed from 2.2 to 5.4 ml/hr, Morning Dose 8.0ml and Viscogel eye drops. At about 0730 I took her to the loo then onto the commode to do some pedal exercises until the Wild dog carer arrived. After showering she was seeing double, was dopey and confused, unstable, had difficulty holding onto the sara transport so we returned her to bed at 0820 and the pump restarted at 5.4 ml/hr. She was not hot or clammy yet looked very pale. She wanted to drink. She told the carer there was a pain in her left arm. I didn't think to take either BP or temperature. Then she slept , breathing softly, until 0935 when she said she felt dippy and wanted an ice cream. By 1000 she wanted to get up, her right hand "asleep". Breakfast of fruit juice with Movicol, yogurt and fruit in jelly, experienced some stomach pains. I found her attempting to disassemble a tea tin while sorting the cupboard above the stove at 1130 and by 1140 she had taken herself to the loo; too late, she had pooped in her pants by the time she called me. She did more loose stools into the loo. After cleaning her by 1200 I returned her to the wheel chair, leaving her in front of the TV. When I returned at 1230 from my dungeon I discovered she had let herself out the back door and was "digging" the soil in the raised garden bed removing mint runners. She protested when I washed her hands and arms with the hose and wheeled her back inside. Surprisingly, the remainder of the day and evening was quite normal, for us.

On Thursday I, at long last, summed up the courage to ring our state PD organisation help line. I had postponed doing so but now thought I had a valid question to ask rather than just waffling about our situation. Her incessant sorting of cupboards, drawers, boxes, you name it, suggested to me that there may be "games" appropriate to persons who indulge in punding; ie dementia patients. I had searched on line, finding items that seemed too "childlike" since I had no desire to offend or upset her by suggesting she do such activities. The person who answered the help line knew all about punding so I had no need to go into details to any extent, I was asked the usual type of questions and some documentation of locally available "objects to be sorted" will be sent to me.

For several days we have been trying to find the power pack for her portable DVD player. I suspect she has "sorted" it into a box somewhere. She thinks she last used it when she was in hospital for the colonoscopy back last March, so it may have been left behind there. I will try to buy a replacement. Yesterday while searching for the power pack she found a deflated exercise ball in our shoe box; she was determined to inflate it, I refused to bother with it, really not the response for me to make. I am trying to interest her in machine embroidery again, but physical matters make it difficult, eyesight and lighting, seated in a wheel chair, dyskinesia of her legs beneath a sewing table. At the moment she is fastidiously cleaning the stove top, where she found some grime. Yesterday I ordered an internet radio for her to play in the dark hours when she sometimes lays awake for hours, for I think with preset station selection she will find it easier to operate than a range of fiddly MP3 players I have.

Chapter 457 - The Daily Grind

She shat (the spell checker believes this past tense of "to shit" in in error) herself a short time ago. Recently there have been small dollops in her incontinence pants; but this event has been the most spectacular. In recent months I have learned to nonchalantly wipe my wife's arse hole (another word spelt and pronounced incorrectly in the Land of the Free); the only care taken is to wear a disposable glove (large) from boxes I order with incontinence pants and pads. She sorted CD's and DVD's for most of yesterday in the racks we have in the TV room and has been continuing the task this morning, wishing to identify disks containing copied material. Yesterday she removed all discs from soft sleeves, piling them up in a heap to be scratched (many I have re-sleeved and placed in a cupboard of my own). Anyway, as I was showing how to operate the small DVD player attached to the TV set (she has been shown before but forgets) she suddenly said "Loo! Loo urgent!!" so I wheeled her wheel chair into the bathroom while she was ON and mobile enough to be helped to stand and lower her pants, then plop onto the loo. Gingerly her incontinence pants and pad were bundled into a plastic bag, then she passed some more. Very soft, short of runny. Lots of wiping to clean up followed by wet wipes. New incontinence pants and pad plus clean slacks. Returned to her self imposed DVD sorting task after a half hour interlude. After lunch, a routine visit required more pants and pads. Perhaps no Movicol tomorrow at breakfast.

I intended to ring the state PD association this morning to talk about what to expect at this late stage of PD (25 years on from her diagnosis in 1991); I really already know, I think we are beginning to live it. But how can I give these details coherently on a phone call? The local counsellor with whom I spoke each month or so retired and we never really spoke about PD issues because she didn't know. So I emailed the Carers organisation in Hot Air City wishing to see one of their counsellors only to be told that they are only funded for persons from their state, the suggestion was to contact the similar organisation in my state. Sent an email to join but I am not keen to discuss matters on the phone hoping to find help locally, most definitely not in Big Smoke City. Even though I began my working life in the telephone industry so long ago I have on ongoing hangup with the damn things.

What follows is a long list of events, behaviours, observations.

Frequently asks if the heating is on, especially when in bed. A fan mounted on the wall above her bed and remotely controlled enables her to cool her face/head any time during the night, even now when the bedroom ambient may drop to 13C. Her body temperature measured by an ear sensor, is always within a degree of 36C. Doctors and nurses have been shown rashes that sometimes appear on her lower legs when the skin in those areas feels hot to the touch; not much concern shown. In the height of summer she may also use a personal fan blowing on her face. She sleeps beneath a sheet, a light quilt, and sometimes a light blanket.

Sleeps in a hospital style adjustable bed, adjustable up/down, head & foot ends raised/lowered independently, able to tilt head/foot ends up and down BUT cannot be tilted sideways . She frequently complains that the bed "tilts" to one side. Yesterday while we fitted a new mattress protector I proved that the bed was level side to side by using a spirit level. Last night when she found herself diagonally positioned in bed I was told that was evidence of the bed sloping to one side.

She frequently sorts the contents of the kitchen cupboards, at least monthly. The same for the food pantry and another built in cupboard in our eating area. Items are relocated between these areas attempting to best position them, often making access to common items such as kitchen implements or sauce bottles inconvenient to access. The same applies to her sewing room; fabrics, threads, clothes are frequently re-arranged into different boxes.

She tries to give away small objects, wool, threads and such to the Wild Dog carers who come to shower and dress her or to put her to bed or give her light physio. Sometimes they accept and are supposed to advise their management to avoid later being accused of stealing. I have no idea whether they do. Today after physio she was intent on giving away a large plastic container full of threads. I objected; she protested she wanted to give them away or throw them out. I said if she wishes we will take the stuff around to the Wild Dog office and I have advised them accordingly.

Labels are scraped off bottles for her to use as extra yet unneeded storage for pins and needles. She cuts down cardboard boxes to fit on shelves.

When the weather is warm outside she enjoys digging into a raised garden bed with her fingers.

When she finds a loose thread on a piece of clothing or shoe, or slightly detached labels on objects she must pick at them until removed, sometimes with scissors until damage is done to the object.

She was once skilled in sewing, knitting, crochet, embroidery. Until recently she had bursts of enthusiasm to indulge her skills, at least for a short time, a day or so, until she decided that the task in hand was going wrong, then she would undo, unpick, make corrections until the object was destroyed or in such a tangle to be useless. Skeins of wool would become small balls, set aside to be re-knitted. Clothing set aside for hems and seams to be fixed later, for small repair jobs became large ones. An idea to create an object of wool or fabric quickly became a puzzle, a chore no longer worthy to be worked on. Lighting and eye glasses were blamed for difficulties reading instructions or threading needles. Extra lighting and head mounted or clip on lenses for her glasses were tried until found awkward to use. By the way, she has glaucoma; 2 medications and 2 lubricants are applied to her eyes during her waking hours. Months ago she offered to dress a small doll. After some false starts she set it aside until recently when she began dressing it as a child (which wasn't intended) and had difficulty knowing when to stop adding frilly bits to it until the task was restarted twice. The doll was returned, well dressed, even though she wanted to begin the job again.

She is very sensitive to being in her wheel chair on a foot path that slopes towards the gutter; she fears being too close to the gutter at such times. By the way, she has been confined to her wheel chair for at least 2 years, perhaps longer. Her left foot began "dropping" a year or so earlier until she was no longer able to support herself on it. At least 18 months ago while using her fore-arm walker at home to exercise her legs and feet she fell backwards out of it without hurting herself. As a substitute for leg exercise, a frame was made to surround her wheel chair on 3 sides for her to practice sit-stand actions; used briefly 3 times each week. Also she has a pedalling machine used most mornings for up to 1/2 an hour. She had Botox injections in her left leg to trial a removable cast; unsuccessful. Then a spinal operation to relieve what was thought to be pressure on her spinal cord in the lumbar area; unsuccessful.

After a year or so on Apomorphine infusions she was referred  2 years ago to West Beer PD Clinic for the fitting of a Duodopa pump. Her On/Off periods are reasonably well controlled except that by mid to late afternoon leg dyskinesias bother her, her legs become uncomfortable so she needs to have them raised. Bolus doses of 2ml postpone the onset of dyskinesias. On recent advice the daytime flow rate was increased from 5.2 to 5.4 ml/hr to remove the necessity for 4 or more bolus doses, but is not completely effective, so a bolus or two may be given. Six months ago similar advice was given to gradually increase the flow rate at 0.2 ml/hr each fortnight. By 5.6 ml/hr she began experiencing mild panic attacks. A small window of opportunity between dyskinesias and panic attacks. I only wish there were more than about 15 minutes each quarter to discuss this issue with the professionals.

She sometimes finds grime around basins and sinks, those places where white sealant was placed during building, so the stuff is rubbed until the surface is damaged whereupon the roughness must be pulled and removed.

We have what is known as a Sara Stedy to transport her from bed to loo or wheelchair to loo when she is Off, unable to stand erect and unable to swing herself from wheel chair to loo or commode. She fears using it, demonstrated by dyskinesias of her lower body when attempting to have her stand on it. However, without it I would be unable to care for her.

She has difficulty recalling names, often referring to "this" or "that" while pointing towards an object, or in the case of the carers from Wild Dog, maybe 6 or 7 carers making 17 visits to our home each week, she rarely remembers their names, referring to them (in their absence) as "that one last night", "the girl this morning" and similar expressions. Even though she swaps personal stories about children and suchlike with them.

She enjoys showing new objects and clothes, recently bought, to the Wild Dog carers, often repeatedly to the same ones who are polite in their acknowledgement. She must crave female company, for she often talks non-stop to them during the 1/2 or so they are here to help her. I recently took her to the regular craft group held here in our village hall but she did not wish to attend again; muttering that they only gossip. I suspect the real reason may be that her speech lacks any sharpness to attract attention in a small crowd, as I noticed a few weeks ago when we lunched with her sisters; she repeatedly attempted to but into their conversation, then giving up when her words went unheard; not ignored for even I, sitting next to her wheel chair, could hardly understand what she said in the noisy restaurant.

She collects small change I have after shopping. Last year she had collected over $200 and from time to time counted the coins for hours attempting to arrive at a repeatable total. Eventually, I took her to the bank to open an account for herself to deposit the coins. Since then she infrequently counts her coin collection.

I have spent too much time writing this stuff today.