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. 

31 days - on repeat

So far this year Carol has been in hospital 31 days ( I can imagine my US friends totting up the $ signs!)  It's been a bonus to have family support this week and Rob's visit from the US has brightened up our nightly returns home from the ward which are otherwise so dreary.  Our neighbours (who also go to our church) have cooked meals for both of us the previous five nights - that's real neighbourly love!

Carol is stuck deep in a groove with increasing weakness. A repeat pattern dominates. Partly with successive doctors, nurses,  physios and dieticians each requiring a summary of Carol's condition (with differing results from active listening to its opposite). And partly, dear Carol herself, for ever repeating how numb her hands are, how sore her lips are and (most difficult) about her desire to get up and walk to the toilet (impossible) and to eat something, which has still not found an answer. Three staff came to see us through yesterday about her swallowing and diet problems. Frustration was increased when one swallowing expert made dairy-free porridge which ended in more choking. The end result was talk of a feeding tube up her nose and down her throat. This option was not well received!  Actually, thinking about that is quite frightening in terms of quality of life, isn't it?

However, Carol continues with (very) occasional vintage observations. She told Rob that he needed to lose weight today and because I was wearing a red sweater with green trousers she observed that I could work in the US chain store Target, where this is the uniform. These moments are rare but to be treasured. 

One of you asked me to be more specific about a couple of prayer concerns I have. Good point. 

1. For Carol to have peace, patience and courageous faith in these difficult days. And for me, too!

2. The neurology team insists she has an MRI - may this happen soon and reveal more about Carol's illness with the possibility of some specific remedial help.

3. The palliative care team needs to share help from their experience about possible future steps for Carol.  

I have been overwhelmed by the contacts that so many of you have made. I am not sure when I shall be able to respond but please know how deeply grateful I am. 

What's in a name

Yesterday I spent an hour with the professor in charge of Carol's case. I learned that no progress had been made in identifying her illness but that it is no longer appropriate to call it dementia. Rather its name is neuro-degeneration.  For Carol its stages cannot be charted, though the fact that she has not eaten for 9 days since entering the latest ward is a grim sign.  They insist that a further MRI and lumbar puncture are necessary in the next few days but admit that they may still be unable to pin-point the particular disease. As you can imagine, I feel conflicted on all this. 

However, there are highs as well as lows.  I sadly didn't witness it but the highpoint today occurred when I was collecting my jet-lagged son after lunch. Going up the stairs to her ward we met two friends from the church descending with smiles. They had just visited Carol and found her responsive in ways that (I think) surprised them (and me). Apparently, she remembered names and was 'on form'.  As they put it: 'These are moments when we see 'the old Carol'.  One of the oddities of her disease are these times of connection when confusion and tiredness are rolled back. I still chuckle with her comment to me a few days ago when a meal was served in her previous ward. It included a piece of processed meat which seemed  too good to waste (and I was hungry). I began to eat it and Carol suddenly chirped up: 'You have a brilliant gift for eating disgusting food!' 

However, bringing us down-to-earth, when we entered the ward after our church friends we found her in deep sleep showing no responsiveness as we held her hand and tried conversation, which went nowhere for the next four hours. These lows are very dispiriting but we remain so grateful for the love and prayers of so many friends. We keep trusting. 

In suspension

I have been overwhelmed by the kind concern and prayers of so many friends in our history who have reached out to us.  As I write it's a flashback to the days of my aggressive prostate surgery when Carol took to this blog with regular bulletins about my health. (Some friends commented how much more interesting it was when she was writing!)  However, today has been a suspension day. In the absence of doctors and tests over the weekend I have no firm news though it is obvious she is fading in strength.

Tomorrow promises more information though it concerns me that Carol's mystery neurological disease means more tests than may be helpful for Carol's comfort. I confess tension about whether some of the more invasive tests will be more for science than comfort.

I remain in suspension unable to tell my family the pattern of Carol's decline ahead. Rob is planning to fly back from the US soon and Simon comes again on Tuesday. 

So many friends have said that this blog is the best way for me to keep .in touch.  Certainly Facebook broadcasts too widely. I shall try to share news as and when it emerges.  Bless you for all your love and encouragement