A Terrible End of a Beautiful Life

This is really hard to write. My head has been full of so much stuff over the last few weeks and yet despite the fact that this is the precise reason I started this blog, to anonymously vent into the void of the World Wide Weird, I haven't been able to put down the thought patterns, processes and consuming ideas into real words.

Lets start at the beginning, or is it the end? The main focus and purpose of this here blog was to decipher cerebral ramblings and untangle the web of hurt I had found myself in.....or had I wrapped myself in it? Who knows, it all feels pretty irrelevant at the moment, and yet it does still tinge all my thoughts and emotions.

October 1st was to be the day that I was to meet K after our self imposed quarantine from each other. From my perspective I had given him the space I had presumed he needed, space to succeed or fail with getting relationship clearer, for me it gave me breathing space a little and although as I wrote, I found it incredibly hard at first, I did get used to it knowing that I had a firm date to see him again.

From his perspective it seems he felt I was waiting for a response, a decision as to whether he could still find a way for us to be together or whether he was going to 'make' his marriage work.

We had a afternoon together, we chatted, laughed and cried. He told me that he couldn't be with me, that he loved me but that he had to be with his children and ultimately, because of his certain desire to be a 'family man', the mother of his children. I accepted it. What else could I do? We toyed gently with the idea of both trying to remain friends while at the same admitting that neither of us knew if this was possible for either of our heads or hearts.

Three days later my darling Mum was admitted back into hospital with heart failure. And this is where my writing will become a little erratic so I forewarn you now, that this is a jumble of fact, regret, wishes and what-ifs.......

As I previously wrote, Mum had a pacemaker fitted back in July when we were told her heart and arteries were severely damaged and the pacemaker was the only option they could take as it was too risky to perform more invasive surgery. On Monday 4 October the ambulance took her into the A&E Department at 10.30am. My Dad rang me when he knew I would be home from work at 5.30pm, I went straight to see him. He was a bit upset that when he had rang the hospital she had still been in A&E and they hadn't located a bed for her. I rang the hospital, it 6.15pm and she was still in the Accident & Emergency bays. Not in the Decisions Unit Ward I asked the staff nurse? No, we have no beds and we decided it would be better for her to be where we could see her..... But she is 84, alone, suffering from heart failure and has now been in your department since 10.30 this morning! Yes, I'm afraid so..... And do you think that is acceptable?? No its not ideal I'm afraid.....But an ambulance crew has just arrived this minute to take her to the other hospital......

Dad and I went to the other hospital to meet her when she got there, we stayed till after 10 at night when it was obvious we were in the way and they would get her into a proper bed as soon as they could. Twelve hours on a trolley......... God bless her, not one complaint.....

I visited her Monday night, and Tuesday night and Wednesday night, when she was in good spirits and bright, sitting by the bed, dressed, made-up and making us laugh out loud at her observations of hospital life, all spoken rather too loudly to be discreet which amused my girls all the more! I text K on the way home to say how much brighter she was and how I felt happier after seeing her that night.

Thursday at about 5pm before I could visit her she suffered a stroke. Apparently a clot from her damaged heart had caused it. Dad and I rushed to the hospital as soon as we got the word. Oh what a mess, what a different Mum we found! Propped up in the bed, incoherent, wig removed, teeth removed, in a hospital gown, distressed and agitated. We spoke to her, she knew we were there, she wanted to pee but refused point blank to use a bed pan saying she was in her chair at home and Dad would be cross if she wet it. No amount of persuasion from either me or Dad could convince her otherwise. She became more and more distressed and finally after what seemed like hours they catheterised her.

Still she shrieked and wailed and thrashed about not believing that she didn't need to sit on a toilet. I stopped the night with her. I got one hours sleep,so did the rest of the ward, after I finally convinced the registrar to sedate her for her own sake as surely being so agitated wasn't good for her.....

I'd called my brother the previous night and told him what had happened, so at 7am my Dad came to take over from me and I went home to shower, breakfast, rest and wait for my brother to arrive from Wales. We returned to the hospital.

She was transferred back to the original hospital now as a stroke patient, she was examined and we were gently told there was little hope and we were to expect the worse. My girls came to visit her despite my Dad not wanting them to see her like that, I felt that they were grown up enough to face it, they were both in tears but she was thrilled to know they were there. They told her they loved her and she told them she loved them too. They were so distraught when they left I was left wondering whether I had done the right thing, until about an hour later I got a text from my eldest to say they were so glad they had come, that they could still see their Nana there and were happy they had been able to hold her and kiss her.

They moved her to a side room.

She couldn't feel or move her left leg and arm with any control, she couldn't see well and her left eye never opened fully, her speech was slurred and she failed each 'swallow test' they did on her and after 4 days they put in a feeding tube and began to treat her for a chest infection that was brewing. She got weaker each day, barely opened her eyes. The upside of this was that she became too weak to thrash about, she had already taken chunks out of both her shins kicking her legs about while so terribly agitated and it took another day for them to locate 'bumpers' to cover the cot sides to protect her. Some nurses would ensure that the pillows were pushed between bed sides and mattress to keep her safe then another would come in to change the bed and not put them back! More bumps, more bruises, more blood stained sheets and so it went on.

I watched as my warm, beautiful, radiant Mummy faded away. We sat with her for almost 12 hours a day that first weekend, Dad and my brother relieving me for 2 or 3 hours at a time, I hated leaving her at night as I feared it would the last time I saw her. She dreamt vividly and was fully aware of her predicament. One evening sitting beside her I suddenly had this terrible fear that this bloody pacemaker was keeping her alive!! She should have gone, she should be at peace and that fucking thing sent its electric pulses into her irreparably damaged heart and kept her alive!! I was so upset and angry! I dashed home and googled and was partially reassured when it told me that a pacemaker only had the ability to 'pace' healthy heart tissue, that once heart tissue was truly dead it couldn't make it beat. But still I was tormented that it was stopping her from having a swifter, more dignified end.

More sitting beside her while she alternated between gasping desperately for breath and not breathing at all despite the permanent oxygen feed. The Consultant told me it was the way with a brain damaged by stroke, the bodies finely tuned breathing mechanism was buggered, so instead of even breaths ensuring oxygen levels remained stable the brain stopped the body breathing when oxygen levels rose and when they dropped they would start this pattern of gasped breaths till the levels were sufficient again. It made it slightly less heartbreaking to watch. I was told that evening that her organs were failing, we knew for certain then that there was no hope. And it was a relief......

What would we have done with her if she were to survive, she was trapped in this body that had let her down, still with a catheter, in diapers now she was being fed, couldn't eat, couldn't move, could barely talk, drifting in and out of consciousness the whole time....shit what sort of existence was that?!? You wouldn't keep an animal alive like that and yet there they were still treating her and feeding her and talking like we had decisions to make about her future!

On day 6 I took compassionate leave from work (though I had only been there 2 afternoons anyway) and sat by her bed from early morning till late at night. When she stirred she knew I was there, I brushed her baby fine hair and washed and moisturised her face when she woke, I moistened her mouth with wet swabs and coated her lips in a soft salve, she knew I was there as I held her hand for countless hours and talked gently to her when she woke wanting to know what time it was, what day it was, had my nephews baby been born yet,  where was my Dad, how were my girls. Dad came and sat with her for the afternoons, I watched as he held her hand, called her darling and smoothed her face, kissing her mouth when he left, a love affair that had lasted a lifetime, the only woman he had ever 'known'...... I felt his heart breaking as he watched her.

On the 8th day I arrived at the hospital in the morning to find her distressed and with a temperature, my brother had arrived back that morning and he and Dad joined me an hour and a half later. The doctors did their rounds, we were once again taken to a private room and told that a new infection had taken a hold on her, that there was 2 options, we could let them treat her with stronger drugs that may work and give her an extra few days/weeks or we could opt to stop all treatment and 'let nature take its course'. We all agreed on the latter, we all felt that was what was best and right and always had been.

The intravenous was removed within 15 minutes, I took the oxygen tube away myself, the nurse withdrew the feeding tube and I cleansed and moisturised my Mums face for the last time. The doctor had said we would probably have around a day with her. I wanted her clean so asked the nurses to come in and do her morning wash. They spent what turned out to be a precious 30 minutes washing her, changing her and putting her into a clean night dress. My Dad and brother decided to go grab some lunch (brother is diabetic) and return later when I could go and grab something to eat.

They left at 12.10pm. I sat with her and held her hand, her face pale and cool to touch. Her breathing slowed and became uneven. I leaned over her and kissed her lovely face, I told her how much I loved her and thanked her for being a wonderful Mum and for loving my girls, I told her I wanted her to rest, that she wasn't alone and that she should let go and as my tears fell on the pillow beside her face she took 3 strangled breaths and stopped.

I watched and waited, knowing really that there wasn't going to be another but desperately not wanting to believe it. I stroked her face and cried. In relief and fear and sorrow. It had been just an hour and 25 minutes since they had removed all the tubes.

And now for the wishes, what-ifs and regrets.....

I wish they had never put the pacemaker in, I wish they had discussed it with us all before doing it not just taking my Mums consent into consideration. My Mum would agree to anything to be an easy patient, that was her way. If they had said to her "We're going to amputate your legs Margaret, so the podiatrist doesn't have to deal with those feet of yours any more" she would have agreed, to be helpful, to be easy for them. I wish we had insisted on knowing the implications of her having it placed.

I wish that my Dad had told me when she was admitted that second time, I would have gone to be with her at the hospital, I wouldn't have had her there in A&E, alone, frightened and stuck on a trolley for over 9 hours. Perhaps if I had been there they would have made more of an effort to get her a bed sooner, maybe that all contributed to the clot developing and heading off round her body....

I wish I hadn't insisted that they bathe and sort her the morning she died, I wish we'd had those extra precious 30 minutes or so to be with her, I'd thought I was doing what was best, I had wanted her feeling clean and fresh, I thought we had longer....

I wish she had died sooner, I wish she hadn't had to suffer the indignity, the distress, the fear of a prolonged death, I wish that if there was no hope that there wasn't a way of making a persons exit from this world smoother, kinder, gentler....

None of these things are helpful, none will change anything or bring my Mum back, I have spent the last 4 weeks trying to squash them and not think about them but finally I have had the courage to write them down hoping that in some cathartic way that it will bring them to a close. The things I have to try and forget are the times she told Dad and I that she wanted to die, that "it takes an awfully long time to die after a heart attack", the murmurs and mumbled "what an dreadful dreadful way to live". Those are the things I can't let myself dwell on.

What I do have to be glad of is the time I did have with my Mum, I feel honoured to have been with her to the end, I feel grateful to have had the chance to tell her and show her how much she was loved. Small things are the ones I have to nurture in my extensive library of memories, like while doing the little ritual of her face cleansing one morning, she said slowly to me "You are so clever, you know just what I need", the times I took her hand and kissed her when I arrived and she told me how she loved it when she heard my voice, the small smiles we shared when I was doing things for her, the glimpses of her humour that showed through even to the very end. They are the things that I have to hold onto and remember.

All through this K has been wonderful, held my hand and supported me from afar, been there with words of comfort and advise, let me weep to him on the phone when I couldn't bear to talk to any one else, and I shall never forget that nor be able to thank him adequately. I know I can think of him as a very dear friend.