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.

Gratitude

I am filled with gratitude tonight. Prayers wonderfully answered. This morning the news came through to the G3 ward that at last a bed was available at the newish Arthur Rank Hospice - a splendid roomy home with ground-floor wards looking out onto hedges and bird tables. I visited with my home group (and Carol) when one of our members was dying, for a memorable prayer session in their garden room. Carol has been admitted to a four-bedded room which she shares with three older women - all frail and fading. Eventually, she will move into a solo room.

As a family we wondered whether this transition to a hospice would awaken Carol to the realization of how ill she really is. Her disease's dementia element has meant that at times she still sees herself as likely to return home and even to walk again. Will this new experience help her understand more and, importantly, help in her preparations for death?  Through many years she has helped people in exactly this situation as a palliative care visitor. I remember in the US hospital she became aware of a man whose anger at dying made him impossible to talk to. Indeed, some of the staff were frightened to go into his room. Yet Carol went in and began conversation which calmed and comforted him.  The rest of the team marvelled at her touch.

Her situation remains most unusual. And, perhaps she does know!  Whatever, we as her friends are praying for peace, comfort and faith these last days and for the best ways to help her.

Entering the building you are immediately aware of  loving concern which surrounds patients and their families. You really are. Only one day into the experience and I have experienced genuine comfort and skill and I am grateful.  We keep praying for this last chapter to be filled with God's love and peace.  

Sad waiting

Members of the palliative care team are becoming familiar to me. Several have now spoken since last week - all with genuine empathy I have to say. However, they have needed empathy. Yesterday they called to say they had a bed lined up for Carol but that a person in the hospital proved to be even more in need of end-stage care than Carol. So she lost her place in the queue. 

With voices full of warm care they said that they hoped something would happen today. 'We know how much Carol needs the care,' they commented, 'and she remains priority.'  However, it didn't happen - no bed became available at the hospice today. It's all doubly sad waiting. Sad for Carol who remains on a public ward with all the noise when I long for her to be in a more restful place, but sad because all the time talk about finding a bed means someone else dying, with all the grief and goodbyes, in order for a space to come free.

I shall hope to report better news soon. The one side-ways silver lining is that Carol has always loved Radio 4 on from the early hours until TV (Heartbeat especially recently) is switched on later in the day. She says that she loves the sound of people talking.  Well, that is certainly happening! 

Anyway, thank you again for all your prayers and concern

Learning about Friday

Today I gleaned three pieces of information about dear Carol. Two relate to Friday events. First, the palliative care team managed to secure a bed at the Arthur Rank Hospice that day. I had no idea of this option - perhaps just as well! Out of their concern that Carol be given more appropriate surroundings and care this was an immediate opportunity. To be eagerly seized, surely! Wait.....

However, as I reported in my last post, Friday was also the day for the MRI!  In the hospital 'team tagging triangulation', the neurology team's decision trumped the palliative care's wishes.  When I heard later that the MRI had shown a clear brain scan I was more than slightly upset that Carol was still on her noisy ward when the hospice move had been secured.  Even more disappointing, was today's second piece of information from the palliative care team that the Friday bed has now been filled and Carol has been put on a waiting list.

BUT also today, the third piece of information came last, this afternoon. The chief neurologist spent half-an-hour with me. He emphasized what he had mentioned before - that humility is vital in his role. (Actually, it's vital for the Christian life too!)  Though Carol's symptoms checked out positively with the list of CJD symptoms -which I looked up the NHS data and I couldn't help but agree - the Friday MRI now led them to the conclusion that Carol is not suffering from CJD!  Her brain should show certain evidence, yet didn't. What a turnaround! What a mystery, because she is clearly impacted by a serious neurological condition. 

The neurologists would love to research further but agree that they do not want to cause more distress to Carol.  Presumably they hope to do post-mortem research.  Living with mystery continues to be our journey. I pray for an opening at the hospice soon and for Carol's peace.

Thank you for bearing with these twists and turns.

About 1-2 in a million

 At last, the much delayed MRI occurred. Simon has come to stay with me this weekend which meant welcome company as we supported Carol through the ordeal at 7:00 pm last night. She completed a successful scan in terms of lasting the required time in the noisy machine. Not successful in terms of the neurologists' hopes that something significant would show up.  We learned today the scan was clear.

The result is that Carol seems to have joined an unhappy rare group of  Sporadic Creutzfeldt-Jacob Disease sufferers, because the clear scan apparently provides evidence to them of something very unusual!  I know I mentioned this possibility earlier. CJD is so rare that only around 1-2 persons in about a million suffer from it. In 2020 only 131 people died from it in the UK. Sadly, it develops rapidly as a fatal illness with very troubling symptoms.

Today Carol has been very tired only surfacing briefly this afternoon with slurred speech and a request for Diet Coke. Friends will know this is her drink of choice and one of my vital jobs is  helping her sip minute mouthfuls without triggering coughing/choking. It's hardly nutritious but it's the only nourishment she has! 

Weekends are inevitably marking time periods in hospital.  I expect palliative care to move into action on Monday for Carol's next chapter. Unfortunately, her ward has become noisier. Immediately opposite her is another older patient also called Carol, who has demanded high attention today, calling out loudly for her husband who was only present for a short time this morning.  As staff rush in to placate her and call out 'Carol, Carol ' it adds yet further confusion!   

We keep praying for peace, comfort and courageous faith. These are not easy days.                                                                                                                    

Three team tagging

The last few days have seen 'triangulation' as one doctor called it, as the three different teams concerned with Carol have been collaborating.  The medical, neurological and palliative teams.  Rob was due to return to the US early Monday but heavy snows in NY meant his flight has been delayed until early tomorrow (Thursday). For me this has been a real bonus because all three teams have spoken with us these last two days and Rob has been able to weigh in with significant questions along the way (as well as be with me each evening as we reflect on Carol's decline). Sadly, decline it is and this has meant serious collaboration.

One area of discussion was the feeding tube. Because Carol is no longer eating solids (which has been true for much of this year) the medical team has been keen to fit a feeding tube (as I mentioned in the last post).  Admittedly unpleasant, they have seen it as necessary to stop Carol wasting away. However, the neurological team has been concerned that Carol's lessening cognitive ability means that she no longer has control over her swallowing.  It is hard to imagine the mental state of someone who cannot remember how to chew and swallow.  Actually,  I don't want to imagine it.  It was ultimately agreed by triangulation that the feeding tube is not going to improve her situation and could actually cause distress.  So it's not happening.

The result of this is obvious. Carol is entering a time with no food and minimal drink. This is where the palliative care team is attempting to track the progress of her disease - though we still don't know a diagnosis.  Is this sudden?  Most definitely. Everyone is surprised that she has become so unwell so rapidly. The long-awaited MRI scan is due to take place on Friday but it is agreed should Carol object (and her  claustrophobia is likely) they will not pursue it. 

I remain so grateful for the love and prayers of our many friends. Please forgive me that I have been unable to reply to so many of you.  I deeply appreciate your kind words. Thank you all.