9 July 2003
I was convinced that Patricia had stabilised. In fact, I felt that she was better than she had been at the start of the year. Even the pressure sore on her coccyx had healed – some of the nursing staff thought it might never heal, but itdid. They were now sitting her up in bed for short periods of time with a view to eventually letting her have brief periods in the wheelchair (water chair).
She was still obviously vulnerable to infection which potentially could have turned into aspiration pneumonia, but the way she seemed at that time together with the care she was getting in Bethlehem Hospital, plus the attention she was getting from her many visitors – I felt then that Patricia was going to be around for quite some time.
As I have mentioned elsewhere, I belong to a worldwide MSA (ShyDrager) group and we share information among ourselves as well as offering support. I recently wrote to them updating them as to Patricia’s condition and also how it was impacting on me. I received some lovely replies from people in several countries. It helps sometimes.
24 August 2003
No changes since the last report above. Patricia continued to be in a stable condition, and if anything, appeared to have improved slightly. She was alert most days and wanted people to read to her as much as possible. Most days she spent about two hours out of bed in a water chair, which she seemed to enjoy. Initially she didn’t appear to enjoy it but I suspect it was because she had been in bed for so long.
15 September 2003
Events of the past few days had indicated to me that although Patricia appeared to be outwardly stable, she had been deteriorating internally. She had had several coughing/choking attacks and had struggled to cope with them. In addition to that, she had appeared a little more anxious. I had discussions with the hospital and they reviewed her care and medications.
Her PEG feed routine had been changed. Instead of three feeds a day of approximately 500ml at 300ml per hour, she was then on a continuous feed from 7.00am till 10.00pm at 100ml per hour with short breaks to give her water (bolus).
16 November 2003
I was having regular meetings with the medical staff at the hospital. By that stage, it was my belief that Patricia was probably at the end of her illness. That didn’t necessarily mean the end of her life. Her body had all but shut down, but clearly she had a strong chest and heart which was keeping her going (in conjunction with the PEG feeds). The breathing problems/choking attacks were the biggest problem. Patricia was simply unable to clear the mucus from her throat. Use of suction and medication was used to manage the choking attacks, but it seemed that Patricia was quickly adapting to the medication changes, so we were constantly having to review and increase the medication in order to keep her as comfortable as possible. As a result, she had periods where she appeared to be asleep all the time, and then periods where she was awake more often than she was asleep.
I am going to mention something here for others who might be in this situation themselves.
Patricia had indicated to me some time ago what her wishes were should she lapse into a coma or lose consciousness, and from time to time, I reminded her of her wishes in case she wanted to change her mind. But the possibility arose that because she seemed to have such a strong chest and heart, that as the medication was increased in a palliative way to ensure that she remained as comfortable as was possible, she could end up sleeping all the time, and staying alive simply because of the PEG feeding. If that were to happen, I would have the responsibility of considering whether or not I wished to stop the PEG feeding.
I hoped it would never get to that situation because it was something we never foresaw as a possibility and had never discussed. And it was not possible to ask her then.
On 28 October 2003, Patricia had been in Bethlehem Hospital for 12 months.
I thought I would include a little anecdote to liven up this section!!
Patricia had been brought up in the country and went to Melbourne at 14 to complete her schooling. She lived in a church run hostel for girls. There she met and befriended another girl by the name of Michaela. I don’t think they had had any contact since their hostel days back in the mid 1950s. Michaela now lives in Brisbane and just happened to be a friend of Marion, one of the ladies who visited Patricia each week and read to her. Marion had managed to establish the connection some time ago when Patricia was still able to communicate. So when Michaela came to Melbourne to visit Marion, Marion took her to see Patricia. When they arrived, another lady was with Patricia, reading to her, but not knowing if she was awake or not because Patricia hadn’t opened her eyes since she had been there. When Marion leaned over and gave Patricia a kiss and told her that she had brought her a visitor, and who she was, her eyelids flickered for a while, then her eyes popped open and she couldn’t take her eyes off Michaela. Because of her Parkinsonian mask, she wasn’t able to register recognition, etc, but she clearly knew who her visitor was. Patricia was related by marriage to the Australian outlaw/bushranger Ned Kelly and had always been hugely interested in anything to do with him. It seemed that her old friend Michaela was also a Ned Kelly freak so Ned Kelly was the topic of conversation. Patricia didn’t close her eyes during the visit and when I arrived about an hour later, she was still awake, and remained awake and alert for the whole of my four hour visit.
30 December 2003
I spent Christmas Day and Boxing Day with Patricia at the hospital. All the immediate family were there during the afternoon on Christmas day but she slept for virtually the whole day. She had a brief period of wakefulness while all the family were there.
Because Patricia was refluxing so much and vomiting her PEG feed, I was asked if they could stop the feed for a day or two and just give her water to see if the reflux continued. Then a decision would be taken as to whether we reintroduced the feed and the quantity of the feed. Her key medications (in particular morphine and midazelam) were being constantly reviewed and updated where necessary. To assist her at that stage, they had introduced phenobarbitone.
It was felt that Patricia now had only weeks to go. If it wasn’t for the fact that she had such a strong heart, it would probably have been days only.
Patricia was moved from her 4 bed ward into a single room primarily because her stridor (loud breathing) had been keeping the others in the room awake at night, but clearly other factors had been taken into account.
Time was running out. We were all praying for her.
2 January 2004
Patricia was now rejecting her medications. I agreed to stop the medications except for those that were keeping her comfortable – morphine, midazelam, phenobarbitone, etc. She was asleep all the time but appeared to be comfortable.
3 January 2004
Patricia had a comfortable day with lots of visitors. About 7.20pm, she experienced breathing difficulties and passed away peacefully at 7.30pm.
Vale my beautiful friend.
21 February 2004
Before Patricia passed away, I decided to organise a DNA test for Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), a relatively new illness that appears to mimic MSA. Although I doubted she had FXTAS, there was a possibility and it does have certain hereditary possibilities. The test results proved that Patricia did NOT have FXTAS.
For further information regarding FXTAS, go to http://www.fragilex.org/ (http://www NULL.fragilex NULL.org/) and check out the FXTAS section.
11 April 2004
Today would have been Patricia’s 66th birthday.
I have not yet received the formal autopsy report but I have had telephone confirmation that Patricia did have the SND form of MSA. This is a relief to all of us because current medical thinking is that MSA generally is not hereditary.
Dolor tam acerbus preferendus est nulli
(Nobody should have to suffer like this)
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