Chapter 598 - The Blinding Obvious May Set You Free

 On Tuesday 1st June we kept the appointment with the Care Navigator who appeared at her ED bedside after the treating doctor spoke to me about what care planning I had in place. I made mention that she was much brighter today compared to her condition in ED some days previously. And for all that day  of the appointment there had been negligible dyskinesia. The Care Navigator showed little interest in the end-of-life wishes we had both completed but rather Enduring Guardianship appointments. She later sent the appropriate link in an email

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Thank you for meeting with me today following your recent presentation to ED. As discussed  today, it is wise for you to have a formal enduring guardianship in place. I suggest you contact your GP to discuss and also access the enclosed link. You are also able to ask questions to this organisations. I hope this has been helpful https://www.tag.nsw.gov.au/forms/enduring-guardian-forms

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I very much doubted that her GP would have been very helpful with this matter, since the Enduring Guardianship is a very legal document, giving no mention of matters medical. Rather, the declaration  "...... appeared to understand the effect of this instrument and voluntarily executed the instrument in my presence" is so terribly legal. Of the number of presentations, on line and off line, and printed material I have read on this whole area of care I do not ever remember seeing the document before. As we waited in the foyer of the building for our wheel chair friendly cab to take us home the Care Navigator made comment about a patch of "heat rash" (although another term may have been used) on her right leg and that made me feel very guilty of  "elder neglect". Later at home I made a small list of those people who may help me with completing the Enduring Guardianship paperwork. Five in total, from which I chose the last one, a friend who attends one of the care groups and has similar responsibilities to me, and I sent him a brief email. He gave me the details of the solicitor that prepared his Enduring Guardianship paperwork. Then a phone call and am appointment was made for the afternoon of Monday 7th June.

Monday 7th June was an awful day. After encouraging her bowels to be more active I paid the consequences. She was very dyskinetic and I was taking Panadol for lower back pains. A little after 1100 she needed the loo urgently and consequently filled her pants. I showered her then returned her undressed to bed, covered above and below with green bed mats plus a dressing gown for warmth. I redressed her at 1300 in readiness for the wheel chair friendly cab a half hour later and returned home at 1545. At the solicitors her dyskinesia was strong and continuous, she needed to remove the light jacket I had insisted she wear, sweated continuously needing tissues to dry her face all the while with her feet in my lap both in the waiting room and the solicitor's office. I had filled out the Enduring Guardianship forms by hand, the solicitor was prepared for us to sign them as is but I asked whether they could be typed. The solicitor was then prepared to have another solicitor  witness and sign on my PWP's behalf but with a streak of insight I suggested we see whether she was able to sign for herself, so I handed her my pen and asked her to write her signature on the folder I carried the paper work in, and she did while her legs continued to kick!! Then the solicitor had her sign the documents while she remained able. Later, outside on the footpath waiting for the cab in the fresh breeze, she refused to put on her jacket, while her blouse felt icy to my touch because it was drenched in sweat. The following afternoon I posted the Enduring Guardian documents to one of the other two "volunteer" guardians (after witnessing to be mailed to the second) I had spoken too by phone. A great sense of Kafka-esque doom was lifted from me.

Yesterday, Friday 11th June, we saw a neurologist over at the surgery we now attend, and to which I requested our records be transferred (at $30 each paid to the last surgery). The gentleman was not wearing a grey 3 piece suit but a track suit and runners. He confessed to not being knowledgeable about Duodopa yet he confirmed what the nurse from the care organisation told me about constipation being a hazard to medications and I suppose Duodopa in particular. When I described the condition she was in when last admitted to ED he related how that has happened in residential care and the patient being left for an entire shift until a change of staff. I should have asked him the medical buzz word for the condition. When we first entered the neurologists room he greeted us then said "Dimentia?" to which I quickly shook my head, saying "cognitive decline" followed by her not wanting to continue seeing a geriatrician. He checked that she was "On", checking for cogging  of her elbows and having her do some finger movements as well as touching his finger tip then her nose. He will send a note to West Beer about her condition and she is to see him again in 6 months.

In regard to laxatives, constipation and dyskinesia when I look back on this past week I would have said except for last Monday when we saw the solicitor, that she has had a dyskinesia free week. However, checking back through my daily notes, I see that she had a number of bursts of dyskinesia each day. But her ability to stand into the Sara Stedy for transfers has much improved, easing my back when assistance is not available or using the Pelican belt when Wild Dog carers are here and not needing to rub her legs while she attempts to sleep indicate there has been much improvement. I can only wonder what the last few years of our lives may have been like had a professional or two given strong advice about the interaction between medications and constipation. Perhaps a little more than "You can be commended for using a FitBit to monitor her dyskinesia" and instead wondering to him/herself what may alleviate, not necessarily eliminate, some of the pain, distress, discomfort, embarrassment of her legs kicking uncontrollably at restaurants, waiting rooms and laying in bed trying to sleep. Shame on them all. And only time, the little we have left, will confirm that the looseness of her bowels improves her quality of life. Her anal prolapse is another matter.

I have been supplying her with Audible book readings by Betty Neels. When a few days ago a Counsellor suggested to me Enid Blyton stories, she said "They're kids' books" yet after listening to several she finds them very interesting.

Today must be the third, perhaps, fourth day in a row that she has been shredding lengths of thick blue  "wool" into s pile of fluff. She has in mind a project in which to use the fluff but has been unable to tell me the nature of it. The task keeps her busy, while Alexa plays The Seekers in the background.