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

Full circle

Today Carol has been placed in palliative care. It's come full circle because Carol's passion for hospital visitation was focused on palliative care. For many years at Addenbrooke's Hospital Cambridge (where she now is) and at Central Du Page Hospital, Illinois where she served for nearly 10 years.  I always marvelled that she went straight into such a demanding care for the dying, with her hallmark compassion at full stretch.  Some of her experiences with the dying were so uplifting. She generally prayed with patients, sometimes gaining responses from them that no one else had achieved. 

Why is Carol suddenly in this need? My last post had her downstairs at the other end of a baby monitor. Well, sadly, she began to deteriorate in mobility last weekend and it meant a return to hospital. After two nights in A & E , she was moved to a ward where she rapidly declined. On Tuesday I was shocked by her appearance - she looked very ill. When the doctor asked me what I thought about Carol's condition I answered 'She looks seriously ill.' To which the doctor said 'She is!' Maybe she was testing how prepared I was for what was to follow.

Neurologists today have spent quality time with her and concluded something else is happening to poor Carol. They have yet to determine exactly what it is, though it certainly apes some dementia symptoms. They mentioned two possibilities which are both rare.  One is CJD. Frowning, I tried to remember what those initials stood for when she said, 'Mad cow's disease is one of its variants.'  (Creutz Jacobs disease) That's incredibly sad news. Carol is certainly in fairly constant movement with some loss of limb control. As you can imagine, I so grieve the pain she's going through and the sadness of having to prepare the boys (and myself). I shall find out more soon and am taking the liberty of posting details on my blog knowing so many caring prayerful friends read this.  . 

Upstairs/downstairs

The before/after contrast is a great sermon device, fitting many Scripture narratives and key salvation theology - from darkness to light! Unfortunately, it can work the other way round. Carol's aim when eventually discharged from hospital was to climb the stairs and sink into her own bed. Buoyed by liberation, we entered the front door and on the first step she fell heavily.  A neighbour helped me right her. In that single moment it dawned on me how everything had changed. When the promised carer arrived he said we should make a second attempt upwards. Same disastrous result. And so began the 'after' saga. 

Downstairs is one through-room stretching from the hallway to garden doors. Everywhere bears Carols' design style.  A bed is not in that design! Now four sets of carers in pairs visit every day to wash, dress and care for  her. I have been cast into a full-time carer's career of watchfulness and service, made all the more heroic by the return of her UTI.  Because Carol can easily fall, and did a couple of nights ago leading to 3 and a half hours on the floor before the ambulance came, her restless nights are filled with too many awful possibilities. Each of the many times loo stops are required she is supposed to cry out to me upstairs. She should never attempt to get out of bed without support.  

Within the downstairs strains, the love and prayers of friends have been sustaining. And imaginative. My church Life Group clubbed together to purchase an upmarket baby alarm. Its night vision allows me to view a screen by my bed so that I can picture impending disaster downstairs in time to prevent another fall.  Two church friends brought down Carol's own bed from upstairs and then one of them connected the baby monitor. That's Christian concern in full flow action.  I am so grateful for the upstairs/downstairs connection.

A plaintiff cry

'I want to go home!'  How often in my ministry I heard this cry when visiting friends in hospital or care home. In the last few days it's become painfully personal and rather loud. Unfortunately, the consultant on the ward round way back on January 19th announced to Carol that she could go home.  I missed that ward round and was greeted excitedly - 'They say I can go home!'  It was mightily unfortunate because the consultant was only speaking from the medical perspective. The strong antibiotic appears to have greatly reduced the infection so, understandably, the doctor saw Carol's bed was close to liberation for the next patient. Job done.

However, the discharge team has had other ideas. Their testing of Carol's physical condition has revealed worrying weaknesses and led them to place her in need of 'complex care' (that's their term). And setting up complex care means she is still waiting 15 days and counting.  All the time the plaintiff cry continues.

Early on, knowing  how much returning home would help settle her spirits, I campaigned to take her home and continue my homespun care.  However, I was told I would forfeit any chance of 'complex care' and, as time goes on, I now realize she does need more help than I can give. So each day we await good discharge news!

I am grateful for friends' comments and prayers supporting us on the way. Our situation is not uncommon but prayers are very welcome. 

10 hour slabs

Actually, it's sometimes 11 hours, once 9 hours. Slabs of life spent in the hospital ward this past week with Carol suffering from a serious, mystery colorectal infection.  It's an acute ward and she has a private room but everything is complicated by her dementia. As I reflect on this demanding experience - for her and me! - several things pop into my mind.

• Compassion - the nursing staff is in constant motion in the large ward but some of the care Carol has received is so cheerfully and gently given. I am keeping the names of some outstanding nurses who have gone far beyond in their kindness.  What a difference compassion makes!
• Misinformation - of course some of this comes from dear Carol herself who smiles at meaningful questions and answers with optimism.  'Do you have any pain?' ' No,' she says with confidence when earlier grimacing with spasms in her stomach or her punctured arms (courtesy of several failed cannulas),. But, there has also been confusion when I have tried to pin down the doctors. They admit it's an infection they cannot identify and (I think) they recognize that dementia doesn't help recovery. But I have heard three different scenarios which contradict each other. I pray something clearer will emerge.
• Church dynamism - ever since church friends heard about Carol's hospitalization they have whirred into action with meals for me when I return in the evening, offers of help on any level, caring emails and calls.  Our pastor came this morning to pray with us and he brought in a steaming large cup of coffee (remembering how I take it!) and a bottle of Diet Coke for Carol.  It brought me up short - in all my hospital visiting I never did anything so practical.  It really helps the 10 hours pass.
• Tiredness - this hardly needs to be added. Carol has slept very little as well as eating minimal amounts and the effort to keep things ticking over my end inevitably puts on a tad of strain. Just a little understatement there.

For those who know our situation, thank you so much for your prayers and concern. I'll let you know the outcome.