Clearer details

In the whirlwind of the last few days a key date has solidified.  It's some way off but this is vital for my family (small though it is) to gather from the US and Univ. finals.  Monday April 27 at 1:30 pm is now set for a Thanksgiving Service at Histon Baptist Church. As a family (a small one) we shall meet for a committal service at the crematorium in the morning. 

There are so many thanks we shall want to give for Carol's life.  I know the boys will both reflect on their Mum in the service and some of that will be lively! The sheer range of contacts who have expressed their feelings to me has truly surprised me and fills me with pride.  She really did make a difference in other's lives.

Already, now the date is known, the ladies (I think it will be mostly ladies!) are beginning to plan out refreshments.  Musicians are being marshalled including one of our friends who wants to play the organ alongside other musicians. The organizer of the church flowers has been in touch about Carol's favourite text and what flowers should best be chosen to remember her. Isn't that great? The text Carol was given at her baptism always remained significant and I think that's probably the one I shall choose. Those who knew Carol best, realize how wisely appropriate it was. 'Cast all your anxiety on him because he cares for you' (1 Pet.5:7). One of her great anxieties was that I would die before her. This is not an uncommon worry, is it? 'I couldn't bear to me left on my own', she said.  Well, God really cares for her.

More details will emerge with hopes to zoom the service so that friends at a distance can share with us. I look forward to providing more details as they emerge.

A horrid day

I've tried not to think about it too much.. The post-mortem for Carol eventually took place at Addenbrookes Hospital, Cambridge today.  As expected (at least by the neurological researchers) no immediate cause of death was evident, so her brain is now undergoing histology examination with biopsies likely to take many weeks before any conclusions are drawn.  Nearly 2 weeks after her death we are still in limbo.

However, I am being issued with an interim death certificate that apparently acts like the real thing. I can plan the funeral with the family and, I think, register the death even though the proper certification is some way in the future. I have registered deaths before but it is definitely different for your wife.  As regards the funeral, I am meeting with the funeral director soon and have already been talking with our minister at Histon Baptist Church. It's a smaller building but it has become our spiritual home and, importantly, the ladies of the church are already gearing up to provide refreshments,.  They wonder how many people might turn up? Good question.

Fortunately the service will be online with Zoom which should enable friends at a distance to share in the service.  I am so relieved to have reached this stage. As soon as clear details emerge I shall post them, of course. So, expect to hear before long though the service will be a little way off so that my US family and London family with final exams etc. are all accounted for. 

Limbo

Eight days since Carol's death and I am still waiting for the next move.  The Medical Examiner, Funeral Director, Minister, and us as family are all dependent on what the Coroner determines about a post-mortem.  Through early confusion, when I was allocated a Coroner's Officer, who a day later (after many phone calls) I discovered was incorrectly given to me, I was given a really keen-to-help Officer.  However, she had not dealt with a possible Creutzfeldt-Jacob Disease before (not many have) so she needed to begin a slow discovery process.  Early I explained that the last scan Carol endured (that's the word) had revealed it was unlikely to be CJD but this didn't seem to register..

So, these last four days I learned that a CJD post mortem was likely to be inevitable. Various unhelpful facts emerged. That there were only a couple of UK mortuaries willing to undertake such a post-mortem - in Edinburgh and London.  The disease is seriously contagious when exposed -nobody wants the job! The plot thickened when I learned that actually no CJD postmortems have recently been carried out in the country.  In this exasperating limbo I kept pressing for the original researchers to be fully consulted. 

However, I'm relieved that there now appears to have been a high level neurological meeting today and we might know more next week. .All the time, I am remembering dear Carol in the suffering of the last few days - how unusual her disease is proving to be and how bravely she bore it. And I have been immeasurably comforted by the tens of cards, letters now coming each day (it's a long time since the postman was regular). Your memories, anecdotes and descriptions have been heart warming. Soul warming. I am so grateful and I know the family will be when they come to see the range and depth of greeting.  And, hopefully, there will be news of a thanksgiving service soon. 

Farewell dear Carol

Dara, my daughter-in-law sent me photos she had taken of Carol, singling out this one as her favourite. I like it too. It catches the smile and joy as she was with family. I posted it on Facebook yesterday which issued immediately in an overwhelming (in the best sense) torrent of sympathy with friends' memories. So far, over a hundred friends from our varied past have surprised me by their specific memories of her in action and their love for Carol.  What an extraordinary comfort it is to learn how others have been genuinely touched in meaningful ways by your loved one  Likewise, I so value each of the comments made by some of you on this blog.  I would love to be able to reply to everyone - please forgive me but the word 'overwhelming' is true in these first days and appropriate answers are some way off!  Thank you so much for your prayers.

7:05

Just returned from the hospice.  Simon and I had been with Carol all day with obviously increasing pain this morning, which the dr. on duty corrected. Sitting by her bed we were aware of some response but when two church friends popped into see her, and share in tea provided by volunteers, Carol seemed on the same gentle path of decline.

We left at 6:15 after prayer and promises to see her tomorrow. We had travelled two miles or so when the phone rang. The sister in charge told us that when they were changing her position it seemed that she has suddenly developed a sinister breathing pattern. She thought the end was close. We turned around and re-entered the hospice. Sister Rosa was sitting with Carol. I was stunned by the change.  It is often commented that people choose to die when their relatives leave. Was this happening? 

It gave us a chance to say our thanks to her and all she means to us,. I read some Scripture and prayed, especially that she might enter glory peacefully.  Within minutes her breathing had ceased! 7:05 is the recorded time.

I have too much to work through at present and, unfortunately, the Coroner has to be involved because of the unknown neurological illness.  Obviously I shall post details. For all your prayers and happy memories of dear Carol, thank you.

A pain day

 A brief post to share how I witnessed the hospice in action today. My son Simon arrived by train to give valued support by the bedside. Sadly, Carol's pain increased as the day wore on.  'Wore on' is an apt description! You could not only see pain on her face and increased involuntary body movements but in the way she punctuated breaths with groans. Increasingly, staff monitored ongoing medical response. Apparently Carol began on 5 mg of one particular med while others in the hospice are at 60 mg.  When and how should they increase dosage, especially because hospital notes excluded several options like morphine because of possible anaphylactic shock?  Today, I have been so impressed by the care and time spent by the doctors on seeking a safe balance of drugs to meet her pain. So much time spent explaining to me.

Eventually, by early evening they had established the right combination of drugs for the 'driver' (the name they give the shunt in her arm).  To our great relief her face relaxed, her body stilled and her breaths, though an effort, quietened.  It is such a relief to see pain come under control and the anguish abate !

What also helped us today was the visit from our minister, Chris, who led prayers for Carol. He anointed her with oil, and with words of Scripture and trusting prayers committed Carol to Jesus' care.  Though I, and others, have prayed with Carol there was a weight and depth to this time that I pray, right in the midst of pain and anxiety, she knew Christ's grace and promises ministering peace.  Actually, it is particularly in times of pain and anxiety that the peace which passes human understanding brings comfort and hope.

Again, thank you for bearing yet another medical bulletin. I so appreciate your care.

Suddenly

After no posts for 4 days, because Carol gave me no particular news to report as she gently declined,  today is different. This morning two friends came and Carol showed some humour, though talking itself is clearly a problem. She and Andrew have always exchanged banter with gentle ribbing and to our delight she showed flashes of the old Carol in some jocular jousting.  Wonderful.

However, I had noticed earlier that my major daily comforting role of holding a straw to her sore lips, so that she could sip Diet Coke (of course!) no longer worked. I could see her trying to suck the liquid up but her sipping strength had failed. Her contorted face showed both the effort of trying to make her sipping work and her consternation that no liquid came. Later, in the afternoon her doctor appeared with great concern that her breathing was suddenly deteriorating. She thought that the neurological disease was shutting down more physical activity - like sipping and even breathing. Speaking directly to Carol she explained they would be putting a port in her arm to help her receive some pain killers. Carol croaked agreement though when the nurses arrived she loudly proclaimed she didn't need any pain relief.   

Sadly, the evidence quickly mounted about how much pain she was in. The doctor then revisited me and gave me the talk. Very sensitively. She  told me how Carol is now much closer to dying which could be happening very soon.  This requires my London son, Simon, to come tomorrow and for me to be ready  even tonight that they might call me. When I asked whether I should stay the night at the hospice she judged that was unnecessary, but kept emphasizing how difficult it is to tell about the dying process when the brain begins shutting down vital functions.  They have not seen this disease at Arthur Rank before but seemed surprised at its sudden reversal today (as I was!)

It is so strange to be in the situation I have already seen others in the hospice when loved ones have died. I knew it was going to happen and yet this has still caught me out with a shock. Thank you for all the love and prayers so many of you have showered our way.  I'll let you know the next stage.