Chapter 429 - Just Routine

We were getting into a routine of shopping on Sundays until today; I had expected to take her to one of her favourite junk shops this morning but she was unable to remember what she needed to buy, so on a cold day we stayed home, she cutting and sewing calico for rag dolls while I digitised and stitched some simple face designs for her to incorporate into her doll projects. Several years since I last created designs so I wasted several hours remembering the basics. Anyway, I made 3 or 4 distinct and simple faces. I hope she is able to incorporate them into the bodies she is making. Last week she said "I just can't sew anymore". She is able to complete one or two sewing or knitting objects after which her next attempts are repeatedly pulled undone, attempting to correct errors or improve a design; she often conceptualises an object yet is unable to bring the work to conclusion, resulting in much frustration and more than a little mess of trimmings, cuttings and wastage.

Early one morning, while still dark, she woke me by laughing very loudly, diminishing into a giggle. I have not heard her laugh like that for many a year; I can't remember when. I was envious for being unable to join with her in the fun.

The glaucoma medication, Ganfort, caused her eyes to sting, a known side effect, for over a week. I was intending to ring her eye specialist but she is only slightly effected now, just after the eye drops are applied. She frequently complains about her poor vision, I should contact our optometrist.

I usually remove the temporary cast on her left leg by 1600, for she complains of throbbing in the leg. One day I forgot to put it on for her; neither of us remembered until early evening when starnge sensations drew her attention to the missing task.

Carers from Wild Dog have her into bed by a little after 2000 when I set up the bedroom TV for her to watch streamed TV or movies. At the moment she is going through the "Vicar of Dibley" series. Sometimes she is more asleep than awake when I go to check on her.

She seems to be more restless, more dyskinesias in the small hours of each mornings.

And we are both tired.

Chapter 428 - Muddling to Nowhere

Our experiment turning the Duodopa pump off from the time of her shower for an hour and a half or so ceased last weekend and continued only for the time taken for her to shower and partially dress, maybe 20 minutes each day. Dyskinesias began at the following times in the past week: Monday 1600, Tuesday 1230 mild, Wednesday 1530 mild then severe, Thursday 1730, Friday 1530, Saturday 1600, Sunday not recorded. Last week's results suggest there is some delay in the commencement of her leg dyskinesias on those days when the pump was turned off for a period. I just asked her which week she thought was better; she replied this week "when the pump was not turned off". The customer (patient) is always correct.

Thursday was her glaucoma checkup at the Highland town. Her eye pressures had increased to 22 and 27, so her eye drops were changed from Latanoprost to Ganfort PF 0.3/5 which should be effective for a longer time I was told. These drops need applying each morning rather than evening.

Sunday morning we shopped not very successfully for food items that appealed to her. She talks of wanting yoghurt and fruit juice; I'm encouraging protein items. She is less interested in pies & chips, cheese & bacon on poast, kebabs & chips and any frozen dinners with vegetables or rice. Perhaps I dish up too frequently stuff she finds appetising on one occasion. I grind to powder the calcium and magnesium tablets, placing them with the Movicol in her morning fruit juice. Vitamin D, Vitamin E and Omega 3 capsules I squeeze into a spoon. All this because she is unable to swallow the tablets or capsules. She continues taking a whole appetiser pill.

Since she returned from Rehab I heartlessly refuse to assist her between the wheel chair and the loo without using the sara Stedy; my right hip is gradually improving, although this morning while retrieving a poo protector for a Sara Stedy paddle my right leg gave way and I was saved by leaning on the wall.

Each night after a Wild Dog carer has her tucked into bed, and as I set up a streamed movie for her to watch, I see her; mouth gaping, lined and crinkled face, eyes wide, head propped up on a pillow of choice, head end of the bed raised and, feeling shocked by her condition, I remember how once she looked to me when we were young, so long ago. I am depressed.

Chapter 427 - An Experiment

Beginning last Sunday, 31st August, I have had her not restart the Duodopa pump following the usual 1/2 hour down time for her morning shower etc.

Day              Pump Stop Period Hours                 Time when Dyskinesias Began
Sunday         1.5                                                   1715
Monday        2.0                                                   1700
Tuesday        2.3                                                   1925
Wednesday   1.8                                                   1715
Thursday      2.5                                                   1800 Felt ill at 1130
Friday           1.5                                                   1745 At Hot Air City to buy ramp for legs
Saturday       1.5                                                   1500 Mild diarrhea and at Respite
Sunday          0.5 for shower & dressing              1600 Two hours shopping then sorting clothes

The pump will be restarted ASAP after her shower from now on. The timings are approximate only but do give an idea of how much of her day is "reasonable".

I priced a safety built to support her on the Sara Stedy; $190 for a simple belt to discourage falling backwards, about $500 for a well padded safety belt with a waist belt built in. We will not proceed at this time, While at the disability shop in Hot Air City we bought an adjustable foot/leg stool which is really a ramp to support her legs while seated in the wheel chair, rather than piling up pillows and using her recliner to do the job; $190.

On Thursday we were told to make contact with any future concerns or if the cast for her left foot needs replacement. It is thought that no further improvements to her left foot  will happen, to continue with exercises and keep in touch should there be any changes. About the latter we will see what happens when the effects of the Botox injections fade.  I have asked Wild Dog Carers to provide another exercise session each week, for a total of three; Mondays, Tuesdays and Fridays.

She is experiencing swallowing problems again, unable to swallow capsules large or small and large tablets (all of these are vitamin supplements recommended by our GP). Our chemist advised it was OK to crush the tablets so I bought a pill crusher so the resulting powder is placed in her breakfast fruit juice along with Movicol.

When she saw our GP last he asked whether she eats much meat, protein. So I am giving her kebabs, meat pies, sausage rolls, various pre-packed meat dishes and chips. Probably not a healthy diet but the aim is for weight gain.

I took her shopping this morning; there were a few minor items we needed but then after buying some clothes, several aprons (to cover her clothes when eating or cleaning her teeth), an elongated pillow that she hopes to make bed time more comfortable, dust pan and brush, a coffee and a hot chocolate we depleted our funds by $330. We both enjoyed the experience!