Introducing Mum

The closer I got to Ward 41 at North Tees Hospital, the clearer the noise became.  At first it was like a distant burbling, winging its way along the corridor towards me.  Nearly there and the noise increased in volume. I felt so sorry for whoever it was in so much pain but relieved that it did not sound anything like my Mum’s voice.  As I turned the corner into the ward and briefly acknowledged the staff drinking their morning cuppas at the nurses’ station, I became aware that the noise was definitely coming from the direction of Mum’s room.  Momentarily, fear clutched me and I froze. Then instinct took over. I rushed in to see the frail old figure of Mum who today was laid motionless in bed and from her nose a tube protruded, making its way up to a drip on a stand. 

Then the noise began again.

Jabber, jabber, yatter, yatter. Jibber, jabber, yitter, yatter.

Walking towards her, I could see that her eyes were wide open, alert and drowning in a sea of fear. 

And she was all alone.

The machines were quietly beeping, doing their job at the side of Mum’s bed, monitoring blood pressure, oxygen levels and the like. 

The night before, a Naso-Gastric tube had been inserted with the purpose of feeding Mum through it as she had not been able to swallow since her massive stroke the previous weekend.  The staff had already inserted such a device twice before, but Mum, ever determined, had somehow succeeded on both occasions to pull the tube out of her nose before they could take what was called an aspirate reading. This reading would confirm that the tube had been positioned correctly into her stomach and not into her lungs.  The process of feeding her could then start but not until an X-ray also confirmed the correct positioning of the tube.

Jabber, jabber, yatter, yatter. Jibber, jabber, yitter, yatter. 

It was complete nonsense pouring from Mum’s lips but the questioning intonation at the end of each and every babbling sentence, the almost silent screams which were being whispered by her, accompanied by the look of absolute panic in her eyes, alerted me to the fact that something had changed on this sunny Saturday morning of March 29^th 2009. 

Something was wrong. Very, very wrong. 

Taking her pale hand in mine, I glanced at the beautiful Gerbera pot plant on her bedside table which I had presented to this confused version of a Mum on Mother’s Day, the Sunday before. Once again the flowers had wilted, soulfully hanging their heads as they had done every morning since Mother’s Day and every morning I had watered the Gerbera after saying my ‘Good Mornings’ to Mum. Each day within an hour the flowers slowly raised their brightly coloured heads as if to say they too were fighting back and defeating death. The Gerbera’s daily resurrection became a meaningful and much needed signal to me that Mum would follow suit and survive each day just as the Gerbera was doing.

After watering the pot plant once again, I sat with Mum for a wee while, stroking her head and listening to her babbling, watching her frightened eyes locking onto mine, waiting for a nurse to come and explain to me what was going on. Their duty of care to Mum made me believe someone would come, soon.

It was not to be. 

Leaving Mum’s side with the words,

“I’ll be right back,” I marched straight towards Sister Julie who was sitting at the nurses’ station still finishing her morning cuppa. 

“Can you tell me what’s going on with Mum please ?" 

Sister Julie explained that the process of feeding Mum by Naso-Gastric tube had indeed begun at 11 o'clock the night before. She and another nurse had inserted the tube and a successful aspirate reading had been obtained.  A junior doctor had double checked the consequent X-ray results to show the tube was correctly placed. 

Even though I believed Sister Julie to be a competent nurse, I questioned the fact that all was well and the even louder babbling coming from Mum as we returned to her bedside, set alarm bells ringing in my head. 

Sister Julie assured me that it was a good sign that Mum was more alert and interactive. 

“You’re alright Margaret, aren’t you ?” boomed Sister Julie. 

How on earth could Mum answer that one?

I was still not convinced. 

Looking again at the Gerbera for reassurance, it was showing no sign of recovery at all.

Just like the Gerbera, Mum’s health was failing.

Why was this happening when she had been making such good progress? 

Taking Mum’s hand I looked at the Gerbera and told it my thoughts.

“It’s the tube. I know it’s the tube!”

The Gerbera did not lift its head to reply and Sister Julie left me alone with Mum to wonder.

After Mum’s emergency admission to hospital, she rallied and two days later she was moved to Ward 41, the general stroke unit.  Able to answer questions with the appropriate Yes’s and No’s and mumbling her way through short sentences that made absolute sense to everyone who chose to listen carefully enough.

She progressed to sitting up and with support from the nurses was able to swing her legs unaided to the side of her bed to be helped into a chair for the day. 

As the days went by she became increasingly mobile and also very verbal, reverting to her old ways of showing strength and determination in the words she chose to use and the manner in which they were delivered to the world.  Words that were not necessarily the kindest words anyone would want to hear.  I noticed in the following few days that many of the staff backed off from interacting with Mum unless it was within their specific bounds of duty. I received the brunt of her complaints about them on my daily visits and was also told in no uncertain terms that I had NEVER cared about her and had NEVER been the daughter she had dreamed of or expected me to be. 

I took it all on the chin. This was nothing new and I told myself that the extent of the hurt she was now flinging at me was happening involuntarily as she realised that there was little time left for her to say what she needed to say. To speak her mind.  

All my life she had told me,

“You’re such a disappointment, Anne.”

The previous year this ‘disappointment of a daughter’ had sold her precious little semi-detached house, moved back to her roots into rented accommodation, dragging all her most treasured possessions with her, just so that she could be close to her Mum. Geographically speaking of course. Any other type of closeness was an impossibility and always had been.

Six days after being admitted to Ward 41, I arrived around nine in the morning, acknowledged the multitude of staff at the nurses’ station and walked into the ward to be with Mum for the day. She was not there. Her bed had been stripped and remade and was all ready for the next patient suffering from the horrific and life threatening condition known to all of us as a stroke. 

Time stood still as I stared at the empty bed not knowing what to think or do.

Oh Mum, where are you ?

A shiver ran through me as I processed split second possibilities. A daze of thoughts raced through my head and I flew to find a member of staff. The first person I spotted was a slovenly looking healthcare assistant and her reaction to my worried enquiry made my blood boil.

“Where’s my Mum, where’s Mrs Burton?” I blurted out pointing to the empty bed.

A drawling monotone voice eventually answered me.

“Mrs Burton …….Well, I’m not sure,” and she came to a full stop. 

End of conversation.

No offer to go and find someone who knew where Mum was. 

Not a scrap of interest in finding out what had happened to the lady that had been my Mum for a whole 91 years.

I was fuming but remained calm as I knew I must.

Looking straight through her I asked,

“So in that case, can you take me to someone who IS sure and please can you do that NOW."

Sister Julie happened to be close by and seeing me marching towards her with the healthcare assistant she promptly took me to one side to explain.

"Your Mum was tested last night for C. difficile and she's got it so we've had to move her to a room of her own, well away from all the other patients. It's for the best for everybody."

"What's C.difficile?" I asked, saying the words again and trying to take it all in.

"It's a highly contagious bacteria and moving her reduces the risk to everyone."

I never found out if Mum actually had C.difficile as it was not logged in the medical notes which I requested from North Tees in the following weeks. Could it have been because she was too much trouble to have in the general ward and was causing a little too much fuss?

Whatever the reason for moving her to a room of her own, that sunny Saturday was a turning point in the long life of Mum. She continued to babble constantly and kept trying to reach the tube to pull it out as if she knew it was harming her. I held her hand and softly stroked her head trying to give her some peace and reassurance.

"It's OK Mum, leave it alone," I said gently to her just like anyone would have said when they don't know what to say or what to do.

I glanced once again at the Gerbera plant, willing it to be showing some kind of revival but all of the heads were bowed.  I knew it was a bad sign. 

I tried to work out how to communicate with Mum as I could not bear to see the overwhelming terror in her eyes as she fixed her gaze on me once more. I just knew that she was trying to tell me something and I felt so helpless. 

Let’s try this then I thought. It can do no harm after all.

“Mum, are you frightened ?” hoping that miraculously she would sit bolt upright and answer my question in her usual kind of condescending manner. 

“Of course I am you silly girl. Wouldn’t you be if you were me?”

Yet I knew that she could not answer. Even if she had, the answer that was verbalised would have been gobbledegook even if they had made sense to her inside that damaged mind. The only muscles working properly were her eye muscles.

Then a light bulb moment flickered in my head.

Still holding her hand, I offered her a way of telling me what was wrong.

“OK Mum. Let’s try this. If you are frightened………blink twice.”

Slowly and on cue Mum blinked twice and a tear slid down her left cheek. Fear took both of us over and I just held her as close as I dare whilst trying to remain strong for her. 

Gently releasing my hold on her and feigning calmness I slid out of the room once again to find Sister Julie to tell her what had just happened. She listened to my tale without conviction, saying,

“It was probably just coincidence. Don’t worry so much. At least she’s interacting with you.”

Once again I felt my blood starting to boil as no one seemed to be listening to me. Or Mum. If there was a possibility that those two blinks of Mum’s meant she had understood the question and been able to answer in her own way then surely that needed to be investigated by some doctor and investigated quickly. 

When I suggested this quite firmly to Sister Julie she replied that it would be Monday before anything could be done as the only doctors on duty over the weekend were junior doctors and they were very busy looking after patients in two other wards as well as Ward 41.

Unbelievable! 

All her life Mum had paid into our NHS and because she was now an old lady of ninety one, she was not a priority it seemed. I knew I was fighting a losing battle. However I also realised that by questioning Sister Julie’s reply and getting her back up I was not helping Mum to get the best treatment that she deserved.

As the two of us ended our conversation and Sister Julie went about her duties, another visitor appeared and boy was I glad to see her. Caroline, the daughter of one of my Mum’s lifelong friends was a nurse and had been for many years. She took one look at Mum and said that she was showing signs of dehydration as her lips were severely cracked.

She went straight to the sink and filled up a glass of water to dab on Mum’s lips saying that I should continue to do that every half hour or so. 

“What if the water goes down her throat? She can't swallow,” I said.

Caroline explained that as long as no water actually entered Mum’s mouth I could not possibly harm her. It could only help. She then produced a tube of Burt’s Bees Lip Balm and suggested that along with dabbing the water on I coat Mum’s lips with it every hour or so.

“It’s the best lip balm Margaret,” she leaned over and told Mum, “It will help your lips to feel much better.”

Why had I not thought of any of this and more to the point why were the nurses not doing either the sponging or the coating as a matter of course.

I asked her what she thought about the incessant babbling coming from Mum and relayed to her about the amazing ‘Two blinks answer' that had happened shortly before and she said that both must be a good sign even if Mum was frightened and added that anyone would be frightened in Mum’s situation. As Caroline was a friend and a nurse too, I really did try to believe that it was a sign of improvement.

I felt so anxious about introducing water anywhere near my Mum’s mouth so as soon as Caroline had gone I beckoned a nurse and asked her to sponge Mum’s lips with water each time she checked on her. I was advised quite abruptly that it was perfectly acceptable for me to do that job as long as I made sure I did not allow any water to enter Mum’s throat or she may choke!! 

“So what are you here for then Nurse?” I wanted to shout at the top of my voice but somehow bit my tongue once again as I knew it was in Mum’s best interest to treat the staff with courtesy. The look I gave the nurse was brimming with disdain however and she saw it, received it well and left the room. 

I left a little earlier than usual on that sunny Saturday as I knew Mum must be exhausted. I hugged Mum ever so gently, squeezed her hand twice ( as two of anything had already become a code between us I hoped) and told her I would be back the next morning bright and early to spend the day with her again. 

Mum carried on chattering and babbling, and a miracle then took place in that single room within Ward 41 as she squeezed my hand back …….twice.

“Well Done Mum! Oh Mum! You clever thing! You squeezed my hand! Did you know Mum? You squeezed my hand! Twice !”

Only Mum could give me the look that followed. Without a doubt it said,

“Stupid girl, of course I know.”

 On my way past the nurses’ station I repeated my request for Mum’s mouth to receive the dabbing and coating at each of their half hourly checks and asked the nurse sitting there to write it on her treatment plan. It became clear to her that I would not give up on making sure Mum had the best chance of recovery and so she reluctantly wrote down my request. 

I walked back down that corridor that led away from Ward 41, as if in a lonely trance, so solemn and sad but amazed by the hand squeezing miracle that had just occurred and I tried to put my doubts of the day to one side.

On reaching home, my partner suggested we go for a quiet drink somewhere and just try and relax, if only for a little while. Since I had been at Mum's bedside for days and days now, and my head felt as if it was about to explode, I agreed.

Ten minutes before we were due to leave, our plans were changed dramatically when the house phone rang. Answering it, I heard Sister Julie’s voice at the other end of the line simply stating that there had been ‘an incident’ with Mum and they needed us to return to Ward 41 without delay. 

“Is she alright?” was all I could think of asking and was told that a serious situation had arisen. I pressed for more information but Sister Julie insisted we return immediately adding that an emergency meeting would take place as soon as we got there. A meeting with Sister Julie and the other nurse who had helped to insert the Naso-Gastric tube, the junior doctor who had checked the X-ray and a registrar. She would say no more but the tone of her voice hitting my heart through the telephone line could not quite cover up the fear she was trying to hide.

I know what happened next and it will stay with me forever………………

Suffice to say, Mum died the following day. 

(From my autobiography)