Look after yourself

Three weeks ago I got a cold. Not flu. Just a stinky cold with a runny nose, a lot of sneezing and then some coughing too. I’ve been put on steroids long-term for polymyalgia rheumatica so that may have helped lower my resistance to germs and this nasty virus really went to town. And then the coughing began. All night long, I coughed. Like a dirty old man, I coughed. It was only when sitting upright and perfectly still that I managed more than a minute without coughing. This made for long nights.

But colds happen. And we work through it, right? We carry on regardless, sipping our Lemsip, swallowing the pills, and we keep on passing it on to others because it doesn’t seem right to give up at first sight of a mere cold. But after three long nights of not sleeping and when the asthma/COPD had kicked in I gave in and had to phone the out-of-hours service NHS24. It was 2am and they were jolly nice and sent a lovely Irish doctor out to bring me a nebuliser which has done the trick in the past. Its the equivalent of 25 shots of Ventolin via a face-mask and is like breathing fresh mountain air but more invigorating. (That’s probably because of the adrenalin in it which can make me a bit jittery jangly.) The nice doctor also got me started on heavy duty doses of steroids and told me to get in touch with my GP if I thought I needed antibiotics. So far, so good.

And I carried on working. A bit. I did a wedding rehearsal and some admin and a quick visit to the church party before I finally gave in and said I couldn’t do Sunday. This was mainly because my voice was going and the cough was not improving. So my dear sister took me to the doctor on the Monday because she didn’t think I should drive myself. She was probably right. My GP took one look at me and sent me to the hospital with a letter. “But I probably just need another go at the nebuliser!” I croaked. He thought they ought to make that decision.

2016-11-07-16-14-03The hospital were lovely. They did indeed give me a nebuliser. And another. And another. And then decided I really ought to stay in and have them through the night. This was not in my plan. I had a wedding coming up at the end of the week which was very important to me (and to the happy couple too, it has to be said). I had things to do. Advent liturgy books to prepare, AGM to plan, pew sheets to do, a talk on art to go to, services to take, and a whole host of other things. But no, I was to stay and breathe fresh mountain air and take lots of pills and get better first. Only I didn’t. Another night in hospital. And by this time I had horrendous pain when I coughed from strained muscles so was put on some nice painkillers too.

Now let me tell you about the ward I was on. I should have been transferred to the Respiratory Ward but they were full. So I was kept on the Medical Assessment Unit which is really a temporary ward until people are moved on. It is next to A&E and goes like a fair. In my ward there were 5 beds and I was the youngest by a considerable mile. And they came and they went and I prayed through the long nights for M who was bewildered and needed to organise everything on her trolley a lot; for E who had just been told she had cancer again and her pain was just awful; for M2 who slept a lot with her mouth open and I kept thinking she’d gone; for M3 who came and went so quickly I never found out what was wrong nor where she went; for others who’d lost their appetite and not even jelly would tempt them. I watched them all and their visitors and we all smiled when M’s granddaughter entertained us with songs and innocently amusing questions. My son came at night after work and I was sharp with him because he took so long coming. And I apologised to him too.

And then another visit from a Consultant who suggested a stay until the weekend. I explained about the wedding in 2 days time and how I really couldn’t cope with staying any longer and not sleeping. It was very busy and noisy at night. Reluctantly he agreed to let me home into the care of the Community Respiratory Team who would come in every day to check me. And I got home. And my sister shopped for me and the CRT came in and measured my oxygen levels and brought me my own nebuliser to use 4 times a day. And my congregation told me not to worry about services and that they’d cover and I should just get well enough for my friend’s wedding.

2016-11-12-18-05-05On the day of the wedding I knew I couldn’t drive to Falkirk but the bride’s witness came and gave me a lift. I took the nebuliser and painkillers just before the service. My voice was croaky but the microphone picked it up sufficiently to be heard. The service was by candlelight and the church was full. The temperature rose and rose and by the time we got to the end of it I looked like a small damp rag. But we made it! Yay! I even made it to the reception for one and a half courses before the nice woman who’d given me a lift came and told me she was taking me home again. And the next day I slept. And slept some more. And someone else took my service here and that was just fine. And still I had no voice.

This past week has seen some improvement. I still have no voice but it is getting a little stronger each day with the help of gargling. (If you are on Facebook you could entertain yourself by watching them.) I do an hour in my study and then I rest for two. I’ve had to cancel a special Remembrance Day service I’d planned and was so disappointed about that. I’ve had to cancel meetings and appointments. I’ve been frustrated at being off sick for so long and now I’m getting bored which is probably a sign that I am getting better. The physio from the CRT say my lungs are still crackling but I am getting better so everything is now being reduced gradually. Today I managed over an hour at our Church Fair and everyone was very understanding. Tomorrow I won’t take the service but I shall chair the AGM with a croak and a prayer. And I’ve knitted 4 eternity scarves which made £20 for the sale. (My hands were too shaky to paint and I can’t concentrate on reading.)

So the moral of my story is… look after yourself. Right at the beginning of any kind of cold or virus, stay in and care for yourself. Don’t soldier on. Don’t spread it around. Don’t think you can do it because the payback may be more than you can bear. Be good to yourself.

And thank you to all who’ve looked after me.

In which Ruth ponders pastoral care surprises

The phone rang.

“Rector, I’m just letting you know that my sister E has been taken to hospital. It’s not looking good. They’ve withdrawn all food and antibiotics.”

I’ve been visiting E since I came here five years ago. In all that time we’ve never really had a conversation although she receives communion in her Care Home every month. She had a brain tumour over 20 years ago and is not able to communicate well, but she often has a smile and we know she appreciates receiving the sacrament. I tell her brother I’ll go up to the hospital first thing.

To tell you the truth, I’m not feeling great myself. Ropey asthma and maybe a virus beginning. Slept for 10 hours the night before and feel achy all over. Figure whatever I’ve got won’t do E any more harm. Jump in car with oil and wee bookie and head off.

lost-directionForget that there is a road closure so get caught in traffic jam on temporary lights and follow diversion signs which take me up a road I’ve never been before. Lose diversion signs and keep driving until I end up at the Falkirk Wheel. In a carpark I never knew existed. Go back and try to find where I should have turned off. Miss it and end up at some high flats. Drive around until I find the canal and follow it until I find a road I do recognise and finally reach the hospital. Not a carpark space to be found and I join those circling round and round looking for likely suspects about to leave. Spot a space and some idiot drives up the one-way road the wrong way to beat me to it. I spit feathers.

By this time, a journey which should have taken me 15 minutes has taken an hour and I am not well pleased. Find a space at the furthest point from the hospital and head off uphill, inhaler at the ready. Reach hospital, puffing and wheezing, and discover E is in the farthest ward possible. Of course she is. Think to myself that at least this will give me plenty steps on my Fitbit (measures the exercise I take each day) only to find the battery on it is dead. Of course it is.

Get to E’s ward and there she is asleep. I take her hand and gently tell her I’m there. She opens one eye and looks distinctly miffed at being woken up. ‘It’s Ruth,’ I say, ‘from Christ Church. Would you like communion?’ E throws my hand away and closes her eye. I take her other hand. ‘E, it’s Ruth, shall I say some prayers with you?’ She pulls her hand away and puts it under the covers. The other three ladies in the ward look at me over their magazines and sip-cups and wait to see what I will do.

Undeterred, I go into my bag for the oil of healing. It isn’t there. Of course it isn’t. It is on my car seat. So I sit down and pray. I pray for E. I say the Lord’s Prayer and she opens an eye again. But she doesn’t wave me away. I sit and breathe and pray some more. This is grand, I think. I’m feeling much better now. I make the sign of the cross on E’s forehead and I think we both feel a wee bit calmer now. Well I know I do.

In which Ruth meets a Rabbi and ponders Dying Well

Yesterday I sat with hundreds of others in a rather posh function room in the old Roxburghe Hotel listening to Baroness Rabbi Julia Neuberger talk about Dying Well. What a wonderful speaker she is – funny, passionate, knowledgeable, direct and above all, Jewish. Using no notes that I could see, she entertained us for 45 minutes on her favourite topic: Dying Well and why it Matters as our annual Malcolm Goldsmith Lecture. (Malcolm was a priest in our diocese who also had a penchant for working with the elderly and those with dementia, who died a few years ago.)

I took some notes which I will transcribe here but they really are brief, but I hear that her talk was recorded so may be available on line at some point in the future.

  • How you remember someone is coloured by their death – and it matters whether that was good or not.
  • Dying well matters for the person and for those who mourn.
  • Ars Moriendi (The Art of Dying) became popular in the 15th century and by the 18th century coincided with the use of laudanum.  (In Art shown as family standing around the deathbed in serried ranks as the person lay still on the bed. No thrashing about. Laudanam brings a peaceful, still death.)
  • By the 19th century death is talked about, perhaps sentimentally, but is not so scary.
  • WW1 changes things. Begin to hear euphemisms (pop your clogs, hop the twig) as people don’t want to face up to all those young men dying in the war and with the flu pandemic.
  • Mary Aikenhead, Sisters of Charity, began what we now call the Hospice movement working with those dying of the plague.
  • Modern hospice movement begun by Dame Cicely Saunders for cancer sufferers.
  • Today under 5% of people die in a hospice, yet hospitals don’t think they are places where people should die – they are places to get well – so don’t spend money or resources on making them good places to die.
  • Liverpool Pathway comes in to place.
  • Today 25% die of cancer, 75% of other diseases. Hospices designed for cancer sufferers but now need to specialise in those 75% who don’t need the same treatment – and it can be a very different death.
  • We need death education.
  • Some faiths and countries have it right – Irish wakes, Jewish, Sikh and Muslims who all visit the bereaved, talk about the dead and eat food. We cross over on the other side of the road because we don’t know what to say to the grieving.
  • All people should have an Advanced Directive / Living Will. It should be reviewed regularly and talked about with your family, along with issues such as Power of Attorney.
  • Things to think about for your death: who do we want there (or not!); where it should be; what level of pain control; what we want to do beforehand; do we want food and drink; do we want religious support; do we want our neighbours/friends there.
  • Things to discuss with medical staff: to know when its coming; what to expect; control over where it will be; control over pain relief; access to hospice; who with you; time to say goodbye; to be able to go when it is right and not have it prolonged.

These last 2 lists are not complete but I couldn’t get it all written down.

As regular readers of this blog will know I am a great advocate of Preparing Your Own Funeral and even designed a form to give out to people to do just that. I’m endlessly banging on about it so it was great to hear someone taking that further. I have since reaped the rewards of that when I have been involved in three funerals where it was used and made such a difference. Why not make that your Lent action? Your family will thank you for it.

Ars_moriendi_(Meister_E.S.),_L.179

 

 

 

A little hospital encounter

The placeFalkirk Community Hospital

The Cast A caring, slightly weary priest and a little old lady

The Script

The conversation thus far had established that little old lady was rather confused and had lost her memory. She had no idea why she was in hospital, didn’t know if she had a doctor, had no recall of any visitors, and was freezing cold. I offered her my purple cashmere fingerless gloves to try, which she popped on, tucked under her oxters and that was the last I saw of them. The conversation finished thus:

Priest:  Is there anything I can bring in for you?

Lady:  (silence)

Priest: Anything at all you need?

Lady: (silence but looks heavenwards as if thinking deeply)

Priest: You know, toiletries? Biscuits? Something to read?

Lady: (silence but really concentrating now)

Priest: Nothing at all? Not even a drink?

Lady: (with sly smile) Oh a glass of wine would do nicely.

 

A true Episcopalian! Bless her.

Who cares about the elderly and alone?

I worry about the elderly. I especially worry about some of the elderly in my own little flock. I worry about the ones who have no family.

My own grandparents had children to care for them when they became frail. None of the children lived too far, or if they did they visited regularly and kept in touch. Grandchildren visited often – often against their will it has to be said, but that’s another story. We didn’t have a choice in the good old days.

But what of the elderly who have no children?  In the past month I’ve had dealings with two such people. One was a lady who had no relatives except a distant nephew from whom she was estranged. She had dementia and was in a care home. I visited her but she had no idea who I was and it was difficult to find out any of her story because she was confused and gave all sorts of variations.  Her family had all died in a plane crash, or all died at sea – one of the two, she told me. And then people at church would tell me her family lived in Falkirk all their lives! She had made arrangements for her funeral though, although nobody knew this until after she died. The only people at the Crematorium were carers from the Home and some members of Christ Church. There was little story to be told of her life and loves. Known to God alone.

The other person is a lady from Christ Church who is in hospital at the moment. She lives in a rather nice Abbeyfield Home near the church where she says nobody talks to her. At 93 she knows her memory is going and she gets forgetful, but she always has a smile and a mischievous look in her eyes. Last year she told me some hair-raising stories about her time during the war in Egypt. Her beloved husband is dead and she has no other family. Last week she had a fall and broke her pelvis so is in our brand, new lovely hospital. There she lies in a room on her own, not really knowing what is going on because her doctor is a ‘foreign gentleman’ and she couldn’t hear what he was saying.  Since her admission she has gone down hill rapidly and visitors now tell me she is unresponsive and almost unconscious. Nurses tell them it is just because she is on heavy pain medication. Our little flock are great at looking out for her and have brought her flowers, sweeties, magazines, cards, fruit and toiletries. They all lie around her unopened. When I visited her on Sunday the nurse roused her and she muttered “Oh I’m so glad to see you!” before lapsing back into a deep sleep holding tight to my hand.

I sat with her for a while, praying and watching. Sometimes that is all we can do. I glanced at her charts lying on the window sill where it says Alert every day. Alert? Visitors for the past seven days have found her asleep and unable to be roused. When is she alert? First thing in the morning? A nurse brings in a drip of fluids but because I am saying the Lord’s Prayer she backs out again, never to be found again. I ask other nurses if I can speak to someone about her but her named nurse is busy elsewhere. I wait for 30 minutes before I have to leave.

So I am left worrying about my little poppet lying in bed with no family to enquire about her. Several times I’ve tried to find a nurse to speak to but have been unable. Phone calls all elicit the same response – “She’s doing fine, very well.”  Her next-of-kin is listed as a woman nobody knows. I worry and I don’t know what to do.  How awful to be alone with nobody to speak up for you, nobody to tell her story, nobody to tell the medical staff what she is like, nobody to tell them that she doesn’t like potatoes or chicken but she loves cakes and a wee glass of wine.

As clergy we used to be able to wander hither and thither in hospital, our dog collars gaining us entry to wards at any time of the day or night. That is not the case any more. Ward doors are locked and buzzers seldom answered. “Lunch time is protected time for the patients” I’m told.  “But I could help to feed them while the food is still warm,” I mutter to frosty faces. Many times I’ve had to give up on visiting because I couldn’t gain access to the ward and couldn’t come at the visiting times.

Any clergy out there found a way around this?  I guess I should be trying to find the Chaplain.

 

Good service costs nothing

Last week I had two experiences of bad service, both in completely different spheres, but both leaving a really bad taste in my mouth.

The first was my birthday meal at Gambero Rosso in Falkirk. (Yes, let’s name and shame them.) I’d heard it was a really nice Italian restaurant and when Son #2 asked where I’d like to go for a birthday meal I suggested there so he booked a table. Three of us arrived on time and stood for a good 5 minutes at the desk waiting to be seated. There was nobody there and although waiters glanced over from time to time, they were all busy and ignored us. Eventually a man, who might have been a manager, came over and barked, “Yes?”  We told him we’d booked and in silence he walked off to a table. We followed and sat down. No, he didn’t hold out chairs or flip out napkins in a showy manner.  Another long wait before menus were produced, and an even longer wait before a waiter came to take our order.  “You want wine?”  So Son #2 has a look at the wine list. I suggest the house wine might be fine, to which the waiter responded, “Pinot Grigio?” (Turns out that this is not the house wine but considerable dearer.) The wine eventually arrived but the waiter had difficulty opening it, in fact the cork broke. He persevered at the side of the table getting little bits of cork out, before skulking off to open it at the bar. This is all done in silence. I watched him dig it out and give the bottle a wipe of cork debris before bringing it back and pouring it into my glass for tasting. I did and it was sour. So I asked for anther bottle which he brought. All of this is done with no conversation whatsoever. The meal itself was okay, nothing to write home about. Portions were small. We decided not to stay for dessert or coffee but waiting for about half an hour after getting the bill before Son #2 eventually took it to the bar to pay. Needless to say, we won’t be going back there again. And no, we didn’t leave a tip.

The second incident was at the hospital visiting a woman who was dying. Her family were gathered around her bed in a single room and had been with her day and night for a couple of days. “What are the doctors saying?” I asked. Then they explained that the doctor had taken her off all food and medication apart from pain relief, although they didn’t really know why. And that ever since they hadn’t seen a doctor. Oh they did do their rounds but stood outside the room with a bunch of young doctors telling her story but never venturing into the room and never explaining anything to the family. It was almost as if they had washed their hands of her now that she was approaching death. I’ve seen this happen before, especially with the elderly. (And yes, I know not all consultants behave in this way, but I’d say the majority do.) Far too often people who are ill and their relatives are told nothing. They have to ask to make appointments with the doctor – and usually it is the junior ones who are sent – to find out what is going on with their treatment. Praise is always given to the nurses, however. This family said they had been super, kind and popped in frequently to turn their mum and make sure she was comfy. But they are always so busy, and sometimes people get forgotten. And that’s the worse thing about being in hospital, isn’t it? Thinking that you’ve been forgotten, or are a nuisance. I’m sure doctors don’t mean to be so rude, but perhaps someone could point out to them that by not coming in to the bedside and actually speaking to the patient or family, they are causing untold upset and needless worry.

Good service costs nothing.

I thirst

There is a horrendous story in today’s papers about a young man who died in a London hospital from dehydration. Throughout a catalogue of disasters and omissions by the hospital, the 22 year old even dialed 999 to try and get the police to get him a drink of water. It is a horrible, horrible story and one which resonates with me too. My father, who has multi-infarct dementia, has been admitted to hospital several times in the past few years with dehydration. The care-home where he lives often ‘forget’ to give him water to drink and as a result he starts to become seriously unwell, fits and eventually is admitted to hospital. Although he is given coffee at certain points of the day and juice with his meal, he has to be prompted to drink it. He forgets to drink what is in front of him.

It is not a huge care issue – to prompt someone to drink. Without the prompting he just forgets. It is not like dealing with incontinence or wandering or shouting which many others in the home do. All it takes is for a member of staff to remind him to drink whenever they pass him. And to make sure that he has a drink beside him all the time. That’s not a big care issue in my books. We’ve even had it written into his Care Plan because for a while there were so many temporary staff nobody knew about it.  But still I will visit and find him with no drink beside him.  He has a catheter so it is important that he drinks plenty fluids. There’s barely a month goes by without him being on antibiotics because of an infection with that and I wonder if drinking more might just help.

We used to always take drinks in for him when we visited but were told we didn’t need to because they would provide it. And sometimes they do. But not always. He has gout too and what is one of the causes of gout recurring? Dehydration. It just seems such a simple thing but somehow it doesn’t always get done.

And hospitals are not excluded from this either. For when he is admitted and is given a drip it sometimes takes 4 days to rehydrate him. Then when he is taken off the drip the problem starts all over again. Water jugs out of reach, full cups of coffee removed because they are cold but nobody thinks that this means he hasn’t drunk anything.

You’d think it was such a simple thing. We are not a developing country; water is freely available. But time and time again I visit people in hospital suffering from dehydration. It is just so preventable and so simple really. Their needs are few. They thirst. Just give them a drink.

Hospital Success Story

Readers may remember that some time ago I had cause to complain to the local hospital after my father was admitted with a suspected heart attack.  Hygiene, lack of ‘old fashioned’ nursing, and other issues were raised.  The Patient Liaison Manager did get in touch and offered to meet with me to discuss the matter and that meeting was today. I met with a manager from A&E and Combined Assessment of Lothian hospitals, someone high up in A&E or Nursing, and someone from Patient Liaison.

I just want to let you know that the meeting was a great success. All the issues had been addressed and I was pleased that they had taken it all so seriously.  A&E staff are even getting further training in working with people who have dementia.  No excuses were given – just hands held up and apologies made that they are trying to make sure it doesn’t happen again.  The grotty floor has even been replaced!

They also stressed that they were pleased to get my letter and to meet and discuss it too.  It had allowed staff to see how they were perceived by patients and relatives and I was told they were horrified.

So, to those who said I shouldn’t have written and that I was a thoughtless daughter, can I merely say that the hospital did not feel the same. In future if you have any concerns you should speak to the Duty Care Manager at the time or write to Patient Liaison as I did. They are always looking at ways to improve.

Hospital shambles

I spent about 6 hours yesterday sitting in A&E of the Royal Infirmary with my dad from 6am to 12noon.

Not once did anyone use the antibacterial handwash in his bay. Not once. But then it was empty so they wouldn’t have had much joy anyway. I did ask a few folk if they’d give me a new one but no joy.

Dad was hooked up to 15 minute blood pressure which was taken automatically, along with his oxygen level and resps. From time to time a nurse had to come in and write these figures down. Most of the time they didn’t say a word to my Dad. No “How are you?” No “I’m just taking a note of this for your file.” No “Everything is looking fine, don’t worry.” No “Can you get you anything?” No nursing. Just note-taking.

At around 8am Dad decided it was breakfast time.  I asked a nurse if it was okay to get him a coffee from the machine in the waiting room. “No,” she replied, “we’ll get it. Just give me a minute.”  An hour later I asked the same nurse if he could get a drink as he suffers from dehydration occasionally and is diabetic.  “Here’s a cup of water.”  At 10am I asked a nurse who had come to write things down again if they ever got breakfast in this place.  (For I’m pretty sure all the nurses did.) “Only if they are well enough to eat and drink,” was the reply.  “Well, he is,” I said. “<Sigh> Alright, I’ll get someone to get it for him. Toast ok? Coffee?”  A young smiley nurse brought it to us 10 minutes later. I didn’t see anyone else being offered anything and not all of them were on death’s door. Far from it, as far as I could see. No wonder they are ill.

The doctor was called away 3 times in the course of speaking to us. I have no complaint about that. There were other sick people. He always came back, sometimes after an hour, and apologised. (Dad thought he was too young to be a consultant!)

Dad was to be kept in for observation for it may have been a heart attack but there were no beds.  We were told we’d just have to wait.  But then someone came in who was quite poorly so dad was put out of his cubicle and parked beside the nurses bay in the corridor.  He was meant to be on oxygen but the nurse who was going to get some portable oxygen never returned.

In the course of our time there I watched nurses deal with a drug overdose patient hand-cuffed to 2 policemen. They wore gloves while dealing with her but then would come out and answer the phone while wearing the gloves. What about the next person who picks up with phone without gloves?

I saw lots of things. What I didn’t see was nursing. What I didn’t see was caring.

Is that too harsh?  Were they busy? Yes, I’d say they were kept pretty busy.  But how much longer would it have taken to talk while doing the blood-taking, or the ECG, or pillow plumping – oh sorry, I forgot, there were no pillows. A shortage.  I didn’t see hand-holding, reassuring arms round shoulders, listening. Too busy to listen perhaps? A listening shortage.  I saw nurses deal with a patient and go back to the computer screens and stand and click the mouse until the next task. Filling in on-line forms? Possibly. But most of the time they didn’t type anything, just stood and swirled the mouse around while looking about – but never catching a relative’s eye.

I realise that emergency medicine is different from ward nursing. But I don’t accept that they are too busy to talk and reassure. And I don’t accept that a system can’t be put in place that someone makes breakfast for those in the emergency ward. For they were not all emergencies, as far as I could see.

Bring back Matron. Not to swish around checking the nurses are all working. No, a Matron who walks round the beds asking the patients if everything is okay.

Looking forward to Christmas

Good day at church yesterday. Numbers up again after the holiday dearth. (Dearth? is that the right word?)

Prayers arising for P’s mum who has had a little heart attack. Reminded me how hard it is to get to speak to someone who resembles a doctor when our loved ones are in hospital. I think there is a pact amongst them that when it comes to visiting time they all agree to run away and hide so that you can’t find out anything. They just don’t seem to realise how worrying it is to have a loved one in hospital.

But we did have some good news yesterday. K is pregnant and due on Christmas Day. That could mean a live bambino for the crib. Yeah!