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.
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.
posted by Kilpike | 3:12 pm
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