starrysong
Posts: 7
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Posted At: 27/02/2009 12:59:48
Telling the Blackbird
It is 2.45 am in the early hours on a Tuesday – I am in bed, but have not slept yet, I am embroiled in a gruelling telephone conversation, helping my daughter to compose her reply to a letter from her husband's mistress; the same mistress, who at the fresh and childless age of 23, is straining to prove that she can look after my two grandchildren once a week to an exemplary degree, far better than their own mother can and is under the illusion that we are all in need of her advice. Carla is 9 months and Timothy is 4. My daughter is beside herself with this add-on of indignant pain and grief and together we are mocking the mistress's letter, composing a reply that will never be sent, producing mock laughter. Sleep finally arrives at around 4.00 am.
5.50 am - same morning. The telephone is ringing and wakes me. A half whisper, half moan, is coming down the line. It is you Mum. You are 92, weigh little more than 5 1/2 stone and are very frail. You suffer from many medical conditions; compression fractures in your spine because of severe osteoporosis, rheumatoid arthritus, and have a history of heart attacks; you have slow release morphine tablets for the pain and you live 50 miles from me. You are saying you feel bad and have also rung my sister who lives closer to you. These desperate telephone calls are a frequent occurrence. I am asking 'Are you in pain Mum?' and you are replying 'No, no pain, no pain, I just feel bad'
My sister Carol (who lives 50 miles away) and I are following the usual pattern of one of us continuously talking to you, ringing from alternate phones, often spending an hour talking you through your breathlessness, we attempt to gauge how serious this particular bout of fear and illness is, and deliberate whether to call an ambulance. You are saying no, 'just talk to me'. You are assuring me that you are improving. You do, the early morning carer arrives and takes over, you are eating your breakfast.
You should be in a nursing home, you have looked at some, but you are fearful, and want to stay in your own home. We have always said, 'it is what Mum wants that is important' and so we continue with the status quo and with the help of the careline system, the early morning carers, and a warden, we limp through.
8.30 am All further attempts at snatches of sleep are failing. Sleep has evaded me, the same me that has to be many miles away at 12.00 midday, today. I am telling myself, I am not tired, I am not stressed, and that I am able today, to go and see both my daughters and grandchildren as previously arranged, to help out. I can, and I will, I am mumbling and affirming to myself as I am dressing, be able to drive the 100 mile round trip, tune in and be sympathetic to both of my daughter's troubles, be chirpy, supportive and ring Mum regularly throughout the day.
On the road home my eyes are closing, the need for sleep is overcoming me, I am pulling over to a side parking space, I feel nervous here in the dark, on the road; I am moving to a supermarket car park; I park near the entrance, close to what looks like a Security Guard. I am locking the car doors and I nap for 20 minutes. Apart from the delicious reward of seeing all five grandchildren and both my daughters, my personal reward on eventually returning home is my mug of hot chocolate which I am drinking in bed, having collapsed into it at around 9.45pm. I am eagerly beginning to drift into that zone between consciousness and sleep where things no longer penetrate, are no longer real.
10.00 pm the same night; in a haze and drifting I can hear the phone, although I spoke to you at 7.30 pm you are ringing me again mum, I know I am your lifeline, 'Are you back? are you alright, did you see the girls?' you are enquiring, and you are contining to tell me you have felt much better this afternoon; we are embarking on a familiar pathway of conversation, you are elaborating on you visit to the Nursing home (the third you have visited) with my sister this time, are telling me you liked the atmosphere, but not the room, far too small and stuck right at the back, and you are emphasising that you would prefer to stay in your own home.
'Yes of course you can Mum' I am saying , 'As always - it is your choice'.
'But what about coping here?' you are imploring, 'I can hardly cope now. Oh dear, it would be such a final decision, and now we have got the funding, I shouldn't turn it down should I? but oh dear, I don't want more Carers in either, they only mess up the place! But I want to stay in my own home'! her voice rises. Adamant.
I am saying I understand and I do, but I am tired, aching and yawning and we have been through all of this before, I feel powerless and my energy to talk and be reasonable begins to fail.
You are asking, 'Are you coming up on Sunday?'
'Yes of course'
'Could you get here at 9.00 am?' you are stressing'.
'You see, if I am feeling up to it, and have no pain, I would like to go to my Church meeting during the morning and you know I only feel I can cope if it is you taking me in the wheelchair, and that reminds me, how's your back? will you be able to lift the wheelchair into the car'?
You are adding 'It really doesnt matter though, if I dont go, I mean, if you don't want to come that early' .
I am in no doubt how very much you wish to go to your church. I am reassuring you, 'Yes I expect I will be able to leave here at 7.00 am Mum, It'll all be okay, dont worry, my back's okay'.
My head is hitting the pillow again as I wonder if anything, at your end, or my end, will have snapped by Sunday.
You can neither walk, nor hardly move, without pain. For the last two years you have only been able to shuffle around holding onto your little rolator/zimmer. Having suffered with severe osteoporosis for the last 4 years, and in addition now, as the doctor explained - 'marked degeneration of the shoulder joints' it has become painful and difficult for you to even lift your arms an inch. Dressing and undressing is an ordeal, and has become an art - some Carer's understand, but some just don't understand the geometry of it all and you suffer pain while you help them through the learning curve. Life is a huge and deteriorating ordeal for you. I have to steel myself to watch the suffering and the valiant attempts that you make to keep going, your courage and selflessness shine through and humble me.
We try hard, Carol and I, to bring some pleasant times into your life; we visit restaurants complete with wheelchair and extra morphine; tablets packed in your handbag, 'in case of bad pain'. We visit beauty spots and have picnics in the car - you often having to stand, outside the car, in order that you can stretch out your ribs (which, probably because of the compression fractures in your back, seem to sink into your hips when you sit in one position for too long. We sometimes have to hold you up straight, while you try to sort your bones out.
This last few months your anxiety and the frequecy of your phone calls have increased, twelve times a day some days, and I ache with powerlessness to help. Your pain seems to be increasing, it seems your bones are crumbling, the doctors can do nothing more for you, only offer well meaning advice of 'well, if you have to take two of the slow release morphine tablets instead of one, then you must do so'. You tried so hard not to 'do so', you say it causes you to 'not think so straight' and as usual you are right.
Is it early morning or early evening? Have I taken my tablets today? you often ask over the phone, I tell you - and of course I cannot know if you have or have not taken your tablets, or when, and ten minutes later you ring again with the same question, apologising for ringing me.
Wednesday 6.30 am. I can hear the phone ringing. I am sure it is you, it isn't It is my sister. 'Jenny, she is saying, Mum has had a fall, she had managed to pull the cord and call careline, the ambulance is on its way'
And here we are Mum, you have been in this rehabilitation hospital for the past ten days - because you have broken your hip. It is the at the top of your femur and they have operated and put in 'a plate and a screw'. You have been transferred here from the main hospital, five days after your operation, and hey - you have come through it, albeit with lots of pain, discomfort and fear. You are valiantly trying to make the best of it and even in your weakened state, you are as always, being a polyanna. Today, for the first time, you are going 'down to tea', to the dining room, I will take you there in your wheelchair.
You are trying to be cheerful and join in conversations with the other elderly patients, who are all trying to do the same. All with their ailments and hindrances and pain. I can tell that it is a huge effort for you. I am trying to ignore the look of defeat in the eyes of the other elderly residents but it is unavoidable. Without exception, they wear the look like a uniform. Although everyone at the hospital are trying to optimise the various situations, the atmosphere of hopelessness cannot be disguised.
Margaret, said to me yesterday, 'I have forgotten what it is like to be happy' I dredged up something to say that would not sound trite, would sound meaningful, but I believe I failed. She is 89 and keeps falling over, she often seems in pain they are assessing her before she goes back into the nursing home; her son comes to visit her once a week. She sits for hours, in a wheelchair, staring out of the same window. She calls out often, her calls go unanswered.
And Elsie, who tries so hard to converse, but the words just wont come, it appears she can make no further effort and portrays a what's-the-use attitude. And there are others too, Dermot, whose head is always forward and asleep, he seems only about 70, but has maybe had a stroke. He says nothing, and I suspect feels nothing, which is meaningful to him. It is all obvious to you and you are saying to me ' isnt it terrible all these people just left like this, terrible, terrible'.
I do not know the answer. These people seem broken and defeated. Defeated by the situation they are now in. Short of having a nurse, sitting with them permanently, one to one, trying to inspire, trying to engage, answering their immediate needs, there is no answer. (and how exactly do you inspire someone of 95, who is feeling so very frail and ill, and knows they are not going to get any better, I do not know). It seems very apparent to me that rehabilitation units concentrate on rehabilitation of the body first and foremost, not the mind, and one wonders, should the egg or the chicken come first. The residents have an abundance of time on their hands, the staff have no spare time at all, a sad inevitable mismatch.
But what I do know Mum, is that I am going to do my level best to make sure that you are not totally mentally defeated whilst you are in this situation. I am fortunate that I can be with you from 10.00 am until 8.00pm, whilst you are in this hospital. I am glad that I can settle you for the night, albeit that you wake several times it appears when I am not here, restless and in pain, and on a good night, 'they' come and settle you, and once you tell me, one nurse did sit with you for quite some time and pacify you.
My intention is to optimise the aspects of your stay here, but there still seems to be a drama each day, always something I cannot cover and cannot prevent. The major drama today, for me (I am tryig not to overly dramatise it in my mind) is to do with the dressing on your thigh where you had your operation. It seems that where they operated and made the incision MRSA has set in - and it is therefore red and weeping. We were informed, that you already had MRSA - or more correctly a - colonised form of MRSA - before you came into hospital, because they had 'found a trace of it on your skin' when testing you on admittance. So you see - so the story goes, you had it all along - you 'brought it in with you', although none of us were aware you had it, least of all you. It was not their fault they are telling me, telling everyone.
However, what is their fault as I see it, is that today, (albeit they have followed the five-day protocol antibiotic-cream-application-treatment, with reminders from me a few times) I have arrived to discover that the dressing (which is a too narrow piece of plaster) has rucked up and therefore exposing the operation wound on your thigh, which is now bleeding. The dressing needs to be replaced, you have probably scratched at it during the night, possibly in your sleep.
I am scrubbing your finger .nails - which are covered with dried blood - (the nurse informed me that they are 'not allowed to touch fingernails' or 'see to' fingernails). This scratching has moved the dressing, which seems inadequate. Throughout the day, three times and counting, I am asking for the dressing to be changed, the wound is open, and not covered, it is bleeding and infected with MRSA. Three times I am told 'we will be doing it soon, we are very busy'.
Four hours later and in desperation, I am resolving to slip into do-it-yourself mode. I am putting on a pair of clinical thin rubber gloves, I am smoothing out the dressing, which is difficiult, it wont stick, it is covered with the antibacterial ointment. I am doing my best. I am putting a pair of tights on you Mum, it is all I can think of to keep this now very slippery and soiled dressing in place. I am wondering if I will catch MRSA. The dressing is finally changed properly by one of the nurses, at 8.30 pm that night. They belittle me for putting tights on you, because they will cause you to be hot at night. I don't cry. I know I did the right thing, I temporarily covered your wound. My low emotional resource cannot fight the argument. I go home.
I am staying at your place Mum, to reduce the travelling time, in order that I can spend as much time at the hospital with you as I can. This whole scenario is an ordeal for you, for me, and we are on foreign ground. I don't know anything about MRSA, or about plates and screws being placed into such a frail and broken, 92 year old body.
I am unlocking the front door, I have no milk nor bread, but there are some rice cakes and marmite, which I am eating I must eat properly I am telling myself, this is silly. I promise myself will have a proper dinner tomorrow. It has been 3 weeks now, I have been with you every day in the hospital for as many hours as they will let me. I would not have it any other way, but still I am unable to prevent all the trauma and ills which befall elderly and vulnerable people whilst they are in hospital. You say constantly you need me with you, and you ask me not to leave you on your own; I resolve to continue to stay with you each day. It is not possible for me to stay with you at night, I ask, I get a negative reply.
I am being told today, as soon as I have arrived, that you have had a fall. It seems you had been moved out of bed into a chair and were left sitting there. You could not get to the bell to call the nurse. The bell should have been left in your hand. You tried to get up and reach the bell, you didnt succeed, fell to the floor and they have hoisted you back into bed. You are traumatised but valiantly endeavouring to take the blame. 'Oh I should not have tried to get to the bell, its my own fault' I am telling you that really the bell should have been left very close to you.
I can tell you are in pain and that you are trying to refrain from complaining. You ask me if I have brought your aspirin, your disposable-aspirin tablets. You are not allowed aspirin in hospital, they only give paracetamol or morphine it seems, and you have never 'got on' with paracetamol; you feel they make you very drowsy and dont seem to touch the pain.
We limp through with different shifts of nurses seemingly having different powers, attitudes and control. I am asking for more painkillers for you, of any make or type and remind the nurses that the previous week, at the main general hospital they had increased the dose to 20 mg. I am ignored. I feel like a naughty schoolchild when I give you two aspirin, which I have brought from your home. Although I feel they may not work efficiently enough, you are in so much pain, I give them to you and because you are 92 and in pain, you have suffered enough, and it is what you are asking for. The nurse is bringing you one of your slow release morphine tablets, the ones that you have been on for 2 years at home, the 10mg ones. You should have had been given these at 8.00am this morning but it got missed with all the commotion of the fall; no wonder you are in pain.
The nurses mean well, as does the doctor at this rehabilitation hospital, but it has taken far too long, and the detail has to be repeated far to often, for them to realise that because you have been on this dose of morphine for two years, because of your damaged back, then the same doseage as that which your body has been used to for 2 years, has litttle extra effect on you when you have a broken hip, and therefore extra pain. You already have what is called a 'high tolerance' to morphine.
Twenty four hours later you are in extreme pain and the staff nurse rings me to tell me you have to be taken back to the Main Geneal Hospital for an x-ray to check that the fall has not caused any further fractures. I hasten to your bedside, and arrive at 10.00 am, The ambulance men are transferring you to the trolley to go into the Ambulance. You have now had extra morphine, but you are calling to me, I am calling back,
'I am here Mum, I am here', I cannot imagine the awful night you must have endured with pain and fear. You had tried to explain to me that the pain had been worse than childbirth.
'I want to exit the scene' you are saying, I can tell you would scream the words if you had more energy. I know what you are meaning of course, you have implied this even before your first fall, I am grasping for the right words to answer you.
'Well Mum, let's just get to the hospital and see what they say'
I am holding your hand as I walk beside the trolley, beside the ambulance men, along the corridor.
I am following the amblance in the car. I am assuming you will be admitted to the ward that you were previously in when you had the operation for the first fracture. This is not what is happening. We are having to go through the Accident and Emergency procedure. We are waiting in the corridor of the A & E department. Two hours go by, you need more painkillers, I ask for this. Pain relief does not come. Just as I am about to get very vocal about my request not being asnwered, a doctor finally comes and instructs an x-ray and requests more morphine. You have another fracture, near to where they screwed in the plate; the first fracture was horizontal, the second is vertical. The dressing on your operation wound is again proving inadequate, is seeping blood. You are being given some more morphine.
Just within the 4 hour regulatory waiting period in A & E, with 2 mins to spare, you are being transferred from the corridor to a side ward, they tell me we have to wait for a bed to become available in the orthapaedic ward. You wish to go to the toilet, they cannot lift you, it is too painful, your thigh is fractured, but they are lifting you and somehow they are managing to get you onto a bedpan, behind the curtains drawn round the bed, you are screaming, I am to listening with my head in my hands. My soul is tearing.
You don't really know where you are Mum, you call my name, I am holding hold your hand. We wait and wait. You are thirsty, I ask for some water, I know you have had nothing to eat either for 24 hours, you had been in too much pain early this morning at the rehabilitation hospital to eat any breakfast. You are weak. I watch, powerless, wondering what on earth will happen now. You are 92, you have a second fracture, you have MRSA and a weak heart.
It is now 8.30 pm the same evening and I am following the hospital porters and the trolley to the orthopaedic ward, where you have been allocated a room of your own, because of the MRSA.
The porters are cracking jokes that pass Mum by and I dont feel in a joky mood.
There is a large recliner chair by the bed, you are being transferred into the bed, and I am sinking into the chair. I have brought some of your belongings from the rehab hospital, your handbag, two nightdresses, your curlers, your lavender soap and I am holding your hand.
Mobile phones were allowed in the rehab unit and I bought you a new mobile phone, it meant everything you said, for you to be able to contact me and the outside world, but even though I have put my number on speedial, and you only had to press no. 1 - even this, you now find a confusing task. And yet Mum, I am thinking back, to when you entered the hospital after your first fall, some 4 weeks ago, when you had scored 100% on the mental agility test! And weren't we just telling everyone who would listen?! No confusion here I was saying, '100% mental agility, that's my Mum!
And now, you are having so many drugs and sedatives, that you dont know any longer where you are or what is happening. And there is no alternative to the drugs and sedatives. And you and I are frightened. I am trying to settle you, '
'Where am I? you are saying to me'?
We are back in the Main General Hospital Mum, you have another fracture in your leg'
You are asking me if I can take you home.
My heart and my feelings are compressing with the pain of having to explain that I cannot take you home. You look defeated.
I hold your hand tight and tell you,
'You are having to have so much medication Mum if they stop giving that to you, the pain will be tremendous, and you just can't walk, or even stand at the moment'
The staff nurse is coming round with the night-time tablets. I am waiting until you are asleep.
I go.
I decide to get to you as early as possible the next morning 9.00 am. I need to catch the orthapaedic consultant. The consultants always visit patients early, before visitors arrive. You have not had a good night. The auxiliary nurse is telling me you have been screaming in pain all night. I remind her ? that you have a fractured thighbone. She says your pain relief may have to be increased even further now. It appears they had only given you, last night again, the standard dose you have been used to having for the last two years.
I am annoyed about this elementary mistake happening again, but last night has been and gone. I am insisting that a doctor now writes up a new medication chart for this admission, at this hospital - (we had only just achieved the correct understanding at the rebab unit) with adequate and correct doses depicted. The nurse is saying she will organise this. Everyone puts in a lot of effort in this hospital, but it is so irritating when the essential and the obvious do not get communicated. Communication should be much better. I always seem to be correcting things, moaning about things, requesting things. You are not in pain at the moment.
The Orthapaedic Consultant is walking through the door with his entourage. It is 9.30am. 'Well now, what has been happening here? he is querying with a far too jovial attitude. He is looking at the notes and the x-ray. 'Oh dear this is a shame, and he is going on to explain that with such brittle bones and at this age, 'this sortof thing- does happen' .
He is starting to look at your wound, and I notice he does not have the 'protective' gear on, a necessity when patients have MRSA. 'You do know that Mum has got MRSA dont you? I am reminding him. He is rushing to the door as he is muttering 'oh no I didnt actually' and returns donned with his apron and gloves. He studies the wound, 'oh that rather settle things' he is saying. 'In the event it is unlikely we would think it best to operate further, but there is no way we can operate when MRSA is present and it will take six weeks for us to treat it' I am asking him 'and this 'treatment' is it straightforward, is it always successful? He is replying whilst walking towards the door. 'it can be difficult to treat especially given your mother's age'.
He is turning to leave the room, turns back and says 'But we will do everything we possibly can to keep your mother comfortable'
You are drowsy Mum, and you are asking me again
'what is happening?'
'well the doctors are trying to work out what the best course of action Mum'.
My attempt at optimism fails, my tone is flatter than I had meant it to be. I cannot dismiss the realisation that all courses of action seem fruitless. My feeling of powerlessness to help or save any of these situations is overwhelming and devastating. I try to feed you some yoghurt. You make it clear that you do not want any. I try again, with a teaspoon, with a little more force. 'How could you' you are saying to me. I cease trying.
The Geriatric Consultant has now come in to see you. It is 11.00 am. I am saying to you, 'hey Mum, wake up, its Dr. Brittain, Dr. Brittain Mum, our favourite doctor'! He is walking towards you extending his hand. You are clasping it with both of yours. You are still not completely with it, in a bit of a daze. You are saying to him 'Did you come to Malta?' You recognise that it is someone you know, and you are linking it with happy times, with our many holidays together, you and me Mum, in Malta. Dr. Brittain never came to Malta with us, he is very experienced, he is smiling at you; he knows the score.
He is asking me to step outside and view the x-rays. I see both fractures and the disproportionate and huge steel plate that has been screwed into your fragile and brittle frame. 'I doubt that your mother will ever walk again' he is saying to me. Your Mum has endured a lot of pain over the last four years and I know she has found life very difficult. If she does recover from this it will mean a nursing home and she will be bedridden. It will also mean sedatives and painkillers for much of the time. I look at the floor. I know what he is saying. 'So what can we do'? I am foolishly asking, knowing the answer is nothing. Hoping he is God.
'Well as you know', he continues, 'your Mum is hardly eating anything at all now, and let me put it like this, if she does stop drinking then I dont think we should put a drip up'
My mind, at this point is doing an about turn - on the turn of a sixpence. Then this can't go on, I decide, my thoughts are spinning, exploding in my head. Then this slow death just cannot happen, but she cannot carry on either - no more! no more!, which means she will in effect starve and dehydrate until she dies. I am thinking, then she must die now. She must die now. Today. Dr Brittain is saying
'We will of course make her as comfortable as we can'
I am thinking he should be adding 'while she is dying' but of course he doesn't
I am completely tongue tied and because I cannot shout out what I am really feeling, I am slotting into a weird automatic mode, and am answering in a totally inapropriate matter of fact way
'Oh, I see, well - Mum wouldn't have wanted that, she definitely didnt want to go into a Nursing Home'
An inadequate and bereft response if ever there was one, I seem frozen not able to even attempt touching on any central issue about your medical condition. I am exhausted and totally out of my depth.
Mum, I am trying to rationalise, and I am talking to you in my head, Dr Brittain knows you well, has done for the last four years. He knows your conditions, your suffering, your pain. He is certain that there is no action that can be taken to improve matters, that intervention would make things worse not better, and is reminding me that you had asked for 'no resuscitation' to be placed on your file, and a week before, you had instructed that no further medical intervention be undertaken. He also referred to the fact that you had said you 'didnt want to be propped up any more' A staff nurse had documented the conversations she witnessed.
Dr Brittain, is writing some information on your file. Both my heart and soul have deserted me, nothing is sustaining me. I feel robotic. I have to come back into see you Mum, knowing what I know, that you are now going to die, without food, without water. The world has narrowed, there is only the space around me, around you, blurred into one. No edges, no forward, no back. Where is the strength, where can I find it? to witness your further suffering.
You seem terrified And so would I be 'Lets act normal' you are whispering to me. Am I able to sit up? I try to sit you up, all movement causes you pain, even to move you slightly, but I am trying to help you sit up and trying to talk to you. Your head falls back, asleep.
My sister is arriving. Optimistic and kindly she is bringing fruit drinks. You are asking her her if she is Jenny, she is saying, 'no this is Carol'.
I am finding it hard to watch my sister being this optimistic, putting curlers in your hair. It is rare for optimism to be so utterly fruitless - once I would have said that could never be the case, optimism was a way of life, in our family, spearheaded by you Mum,a way of coping. I suspect - just as much to calm your agitated state - that the intention is to portray to all concerned, doctors, nurses, even the cleaners in the hospital that 'Dorothy is fine, and look there she is with her new pink nightie and her hair looking just how she likes it and hey! only 4 weeks ago she scored 100% on the mental agility test you know! She can carry on, of course she can carry on'
How my heart and my self want this too, but all the while I am knowing, accompanied by thumping sounds in my head, that you can't, you won't and what's more you don't want, to carry on with such a burden of pain and incapacity.
Curlers, I concede, serve a purpose for the moment, but I am now aware of the true and finite picture explained to me an hour before by the consultant and you are not. My courage is failing me to explain in detail to Carol just howserious then situation is. I am having to flatten her optimism with as much delicacy as I can muster. I am hearing myself talking and knowing I have to tailor my remarks - 'well Carol, things are far from good, it appears that the MRSA has set in, and that they cannot operate on this second fracture and Dr Brittain feels Mum will stop eating altogether soon.
I am hearing the reply from Carol 'oh well we must hope for the best' I know Carol does not want to go there in conversation; I know she does not, cannot, fully realise the true and horrid situation. I respect that she does not want to embrace this horrendous reality. I do not go there with her. I am on my own.
You are agitated and fearful Mum, the morphine and other painkillers have altered your state of mind, you are either drowsy or agitated, we rarely now have a sensible or logical conversation. You have left me.
'I am in a prison', you are mumbling; and you are, how can I argue that? You can hardly move, and certainly cannot get out of bed.
'Bring my wheelchair you are saying, you can take me home, bring my black slip , my best blouse and my black pleated skirt'.
I am choking on the pain of my lie
'Well , yes I may be able to do that soon Mum, I stuttered, but not tomorrow, we have to wait until your leg is better'
Of course, the catch 22 is that because they cannot operate, and because of the severe pain, they will have no option but to increase the morphine doseage, which I am told discourages appetite even further; and how can I say, the total truth to you -
'No Mum, 'I am not taking you home, you are not eating, you have no appetite and dont want to eat, and the consultants have decided that they will not artificially feed you, and you are going to die' I have to play an avoidance of the truth game, and this with you, You! -my lovely, courageous and valiant mother, who has never knowingly hurt anyone. You are not in one of those calm states of death aceptance, the sort one reads about, where you can say your last words to me while I hold your hand, you - peaceful. The morphine and sedatives have played their part in confusing and agitating your mind and the situation feels terrifying for you. If you did come through this, you would be bedridden and in severe pain. In my heart I know you must go.
You are taking 5 days to die Mum, and the process, despite the sedatives and morphine, is gruelling and wrenching; to see someone you love dehydrate before your eyes, and feel even if mistakenly, that you were the only one who maybe, just maybe, could have argued, and begged of the doctors, and could have pulled it back, but didnt, because the alternative would have been a living death for you, is damaging to even the healthiest mind.
My utter and total helplessness, and the openendedness of this foreign situation that I am in is emphasised by the the minute by minute agonised wondering - how much do you know? how much are you aware of, how much pain are you in, suspecting you could hear, (eyes closed - but your brow knits together when you can hear the elderly lady in the next room calling out in pain)
For lengthy portions of time, whilst I am with you during these last days, I am now making no noise at all, not speaking, because what can one say to someone who is terrified of dying - partly because morphine can have that effect, and partly because naturally, no-one wants to die anyway. How can one say 'its alright Mum, your dying, but its okay', when no, not really, its not okay, at that point, for you, When I do whisper, I sometimes repeat - holding your tiny hand, 'I am here Mum, Jenny's here', Bending over your frail tiny body, I try to stifle the tears, rarely succeeding. I am so fearful that I will somehow resurrect your pain and strengthen remnants of awareness, if I disturb you in anyway. I tiptoe. I sob, swallowing sound.
It is difficult to reconcile the fact, or for me to believe what is going on in my own head, that I so want you to die, now, this moment,; I am racking my brain even, for methods; I want it to be over, over for you, and over for me, there is no reverse lever and I cannot watch another day of suffering.
It is impossible to accept, and the truth of it will have its consequences, that it is me ! me! who is refraining from trickling water into your parched dry and cracked mouth because I am scared, yes scared, that the very action of doing that may prolong your life and pain by another day? Probably I am making the wrong decision, probably it would not prolong your suffering life. But I do not know, I do not know, and I hardly recognise anything I do know at this moment.
I suspect, no I know, I will wake at night with that guilt, that it was me! me! that did not give water to my mother while she was dying. And I imagine I will also try unsuccessfuly to give myself relief from that torturous memory, I will try and gain the belief that it was not really me that was making that decision, it was the fact that you were unable to drink any longer because you were dying, and the process of dying is rarely without ordeal. But I am floundering Mum, I am floundering in your pain and my impotence. We are floundering together.
It is damaging because the psychological stance and way forward during these dying days contrast so severely with all my actions and wishes over the last years, and particularly the last five weeks, each day my being by your bedside, wanting to make everything allright for you wanting to save you, striving, bursting every sinew to solve the unsolvable Here at the hospital daily, watching out for you, and then, as if turning on a sixpence, after the consultant's decision, my viewpoint had to drastically change, complete reversal, no ways forward.
You finally pass away Mum, in front of my eyes, at 3.00 am in the morning, without any final words, with a final weak shudder. I am collapsing, I am like jelly, the nurses are calling the doctor to certify your death. I sob, I cry and I know the mix contains relief as well as naked as you can get grief. I know I will be in pieces for many months and I resolve to remember your goodness, kindness and selflessness and our many happy times together.
But it remains, that enduring picture of Carol putting the curlers in your hair, of the hope that I knew you had that day, the angst that pounded in my head, my knowing the absolute inevitability of that hope being shattered. I still feel the dread and confusion with which I observed that innocent episode.
A blackbird is in my garden, at my window and singing. He is there most days. I look for him. We talk, and he keeps me optimistic. And I will be buying fresh bird seed today.
Tell me Mum, tell me soon, I need the words, I need the words - that what I did and what I didn't do, given the choices, was right.
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