Chapter 599 - We Are Mending

 I had sent the Enduring Guardianship paperwork by Express Post for signing north where it arrived the following day. A few days later after another witnessed signing the paperwork was sent south for another to sign and immediately posted back to me last Friday. Online tracking advised me the envelope arrived at an industrial suburb of Hot Air City last Sunday. So this morning I was advised that I will receive it today, 3 days later, a few 80 kms away from said suburb. I suppose that is value for money, $9 for each leg of the triangular journey, since it may not have arrived back to me by next Xmas, if at all.

Our new GP, a lady, over at the modern medical complex on the outskirts of town, referred her to a specialist at the local hospital. some days later a call asked me to bring her to a physio in the rooms behind the hospital. As a result we had a 2 hour consultation with the physio, who  discussed the prolapse problem with us in great detail. Today a call from the physio confirmed my fears that nothing other than surgery would "fix" the problem and asked me to continue giving a Movicol at breakfast and lunch and also as I have been, about 3 cups of orange juice each with 2 teaspoons of Benefiber. Over the past week or so the quantity and frequency of these may have changed somewhat so I must ensure these quantities are maintained for regularity of poop at #4 & #5 on the Bristol chart. An hour after speaking with the physio I was belled for the loo. We both decided that the commode was probably more comfortable than the toilet with its bidet. She left behind a goodly quantity of #4. I almost decided not to give her a Movicol at lunch but decided to maintain the plan to see what happens before backing off if accidents occur. Now that I think about the matter, I had started to give her a number of prunes, which normally have no effect on her, at breakfast so they will be discontinued.

When the new GP saw the stoma she prescribed an antibiotic, Cephalaxin, 4 times a day. The granulation at the site reduced but when the GP saw it a few days ago she prescribed the same 3 times a day. I still apply the Kenacomb on the reddened skin around the stoma. On advice, I give her a probiotic to counter possible side issues caused by the antibiotics.

Fed up with the anxiety caused me by petty mistakes and ordering delays of Duodopa at the chemist we have dealt with for 20 years, a month ago when collecting the previous Duodopa order I asked for our scripts kept on file and haven't returned since. Instead, I have been going across the main street to another chemist which has a better ambience in that the racks of products are much better laid out and further apart, the staff are friendlier and not as crowded with customers, the latter possibly due to being located on the other side of the main street from the super market.

I have had some helpful discussions with counsellors at the state Parky organisation and although encouraged to seek respite, I have decided not to because I doubt she could be attended to properly during the night, needing to be rolled into comfortable positions to minimise dyskinesia. Also, I am finding that when her dyskinesia is minimised, she begins to sense the cold, needing a blanket in our unheated (by her choice) bedroom or the ability to switch on an overhead fan should dyskinesia continue for a time.

I suspect her right foot is slowly developing the problems of her left. If so, in time she will be unable to stand at all, then we will be in dire circumstance. I will raise this matter with our new GP.

Yesterday, she fiddled the Samsung Tab A loaned for her Skype video chats with the lady up in Cane Toad State. This morning from 0600 I went seeking a beeping noise and found that the tablet had an alarm set along with a 5 minute snooze setting.

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.