Progression Two

Occasional notes in the life of a Parkinson patient & her carer.

Monday, March 28, 2011

Chapter 219 - In the Early Hours

I am eating two slices of raisin toast with a cup of Earl Grey at 6:30AM. Not so early now but I woke at 4 went to the 'loo and then had cyclic thoughts that prevented me sleeping. You know the sort of thing "I must remember to ....; then what if .......; that was interesting when ...; etc etc" then at the end of the list the sequence begins again. The only ways I can break the chain is to read a book or make a list of the thoughts so that the items may be actioned later in the day. However, either solution can wake her, even if I leave the bedroom, and if that then it is too cool without a track suit or other clothing. So I lay there hoping the cycle fades away; it doesn't, then at 6AM her alarm goes for her first meds of the day. She murmurs. I reply. She attempts to rise for the 'loo, sits on the edge of the bed, says "I can't stand up." I roll over, stretch across the aisle, reach for her fingers. As she begins to stand she cries out & sits back on her bed. Her right hip has intense pain as soon as her weight is placed on her leg. She tries again but fails. I rise, stand in front of her and with arms around each other she stands, making slight almost whimpering sounds. We turn ever so slightly in an attempt towards the bathroom. She moves each of her feet a centimetre or two; I hear the sliding sound of her feet on the carpet. "I can't walk; I have to go to the toilet" she says. "How about using that?" I say indicating the commode "Can you get that far?" about 1 metre away at the end of her bed. I had positioned it there several weeks ago after a similar experience on another night, although not used on that occasion. With me holding her, she shuffled to the commode, I lifted the lid & pulled down her incontinence pants, she sat and after an appropriate interval "Have you finished?" I helped her up, pulled her pants up again, she shuffled back & sat on the edge of the bed. I lay down. She got into bed on her own. "Didn't that hurt?" I queried. "No, only when my weight is on it." I then ticked off the things she should be doing, like treadmill, stretching exercises, sitting on hard chairs, not stooping. "But that's the disease." Of course it is but we must routinely combat it. "When was the last time you did stretching exercise? I haven't seen you doing any." "Last Monday." "At Physio!" She changes the subject slightly "At Physio they have us stretch while sitting down." I think to myself that once a week is not enough; that is simply training. I feel guilty that I am too occupied with my activities to encourage her to exercise without appearing to bully her. When I see her stooped over her walker my mind flicks back all those years ago, when she was still 16 and I 18 as we passed on Park Street, near the Museum. That was the first time I noticed her; in a straight skirt and a twin-set, medium height heels, swaying slightly from hip to hip as she went down the hill & I came up. And my eyes fill. So cruel.

A week ago I decided to retrieve the special mattress we bought a couple of years ago. It had been so good for her back until a hollow developed at the position of her hip then she was trapped in a "hole" and I replaced the original hard mattress. For a few nights now she has had good nights' sleep on the "new" one. The old one is parked on its side in the lounge room until I decide to place it up in the ceiling. A cow of a job which I had no wish to do until we were sure she can remain comfortable on the "new" one. A friend suggests keeping both mattresses on top of the base after removing the short legs from the latter; I will try this but i suspect she will need a step ladder of sorts to be able to get into bed.

The ACAT lady rang & then posted us the completed assessment. Much to her horror, she has been assessed in the "high care" category. She interprets this as being eligible to be locked away in a urine smelling home, where, like our now deceased next door neighbour a few years ago, the staff encourage patients to fill their incontinence pads/pants each night. After the paperwork arrived in the mail it was thrown onto my desk. She finds it hard to understand that the ACAT Assessment was a planning move without me or anyone wishing to incarcerate her. It is for emergency use only.

There is a filial obligation approaching in a northern city. A duty that I do not wish to perform; she says I should go and she can look after herself for a few days, we could drive there but that will mean 2-3 days of uncomfortable travelling and accommodation each way for her as well as a couple of nights up there; or we could both fly as we did last year. One of the thoughts that keeps me awake. I will not consider asking for emergency respite care since that means she will be here on her own or in a strange bed somewhere experiencing her horrors. Easier to not attend.

When we collected her next supply of Sinemet CR yesterday our friendly chemist said the stuff is returning to normal supply. She told me that she increased from 1/2 to a whole Madopar at 10PM each night.

She was tickled pink when she won a first prize for her lingerie bag & a second for her wall hanging at the Show in the little country town. "That's the first time I have won a prize for something I made." She then began a 2012 wall hanging calendar but there was insufficient time to complete it prior to the Show in our town.

She travelled well down the 4 lane to meet our friends in an RSL club for lunch the other day. All being well, on Wednesday we meet our Big Smoke friends at the club in the town in the other direction.

Saturday, March 12, 2011

Chapter 218 - An Interesting Experiment

Yesterday I collected the first bottle of the special supply of Sinemet CR 200/50 which has been on order. She began taking it today rather than Madopar HBS 100/25. She will be taking 5 doses each day so each bottle containing 100 capsules will last for 20 days thus with the repeat prescriptions held by the chemist she has a little over 3 months supply after which there is not much likelihood of any more. Recently I have been keeping a rough diary of the occasions when she has called for help and in speaking to the ACAT person a few days ago I realised that the number of requests has reduced since 28th February to almost none! What has changed? Perhaps I have been lax at recording events. When I asked for her meds schedule I noticed that half a Madopar (ordinary, not slow release) was taken at 2200. "Why? When did this begin" I asked. " A week ago to help stop the 'someone walking over my grave feeling' when I lay down in bed" she replied, and she says it has helped her get to sleep each night. My excitement that the additional bit of Madopar may have synchronised with reduction in her calls for help is not justified. Neither of us can recall any changes to our daily monotony at the end of February. The diary suggests nothing other than my phasing in two doses of Asasatin for my own problems; then ceasing because on March 1st I woke with a severe headache at 0300 following a week of dull background headaches. During that time I was dull & irritable so probably was not too concerned about record keeping. Our doctor has prescribed something else for me now. So from about the time I began taking 2 doses of Asasantin per day and my headaches became more than dull she needed less assistance. When i mentioned this she said simply "When there are problems I just try harder." So can some of her rising from chair/toilet problems be overcome by the stress induced by concern for me?

On Wednesday an ACAT person interviewed us for emergency care for her should I fall foul of big red bus or whatever. She has not been keen on renewing the assessment, last done in 2007, because she sees it as moving her closer to entry into an old people's home. ACAT rang back a yesterday to say that her condition entitled her to high level care. That caused her more concern than ever, upset her very much, she cried, rather than seeing it as a planning for future eventualities. I certainly don't wish her to be institutionalised in any form even for short term emergencies. Yet we both must realise that sooner rather than later, one of us will begin the spiralling course to our finality. We have a PD friend who has a live-in carer and I think we must look into a similar solution should I "go" first. There is a bedroom and a bathroom that could provide free accommodation for a retired elderly lady. Free accommodation and a small salary may be very attractive to a pensioner lady.

In the last couple of days she has been constructing a quilt. Yesterday we each entered some of our work into the local show at the little country town where she has her Bowen Therapy.

On Thursday we were to join our local PD group on a bus trip but she felt poorly and I was light-headed because my blood pressure was lower than usual, so we offered our apologies & stayed home.

Until yesterday, her recent medication history is:

0600 1x Sifrol ER 3
1x Deralin 40
2x Madopar HBS 100/25

1000 1x Deralin 40
2x Madopar HBS 100/25

1400 1x Deralin 40
2x Madopar HBS 100/25

1800 1x Deralin 40
2x Madopar HBS 100/25

2200 1/2x Madopar 200/50 (Note: not HBS)

2400 2x Madopar HBS 100/25

Beginning from today:

0600 1x Sifrol ER 3
1x Deralin 40
1x Sinemet CR 200/50

1000 1x Deralin 40
1x Sinemet CR 200/50

1400 1x Deralin 40
1x Sinemet CR 200/50

1800 1x Deralin 40
1x Sinemet CR 200/50

2200 1/2x Madopar 200/50 (Note: not HBS)

2400 1x Sinemet CR 200/50