Chapter 8 - Final stages of Vascular Dementia and dealing with Grief

Mum lived with me for just short of four years.  Towards the end of her struggle with Vascular Dementia, Mum became that frail, that even touching her frightened me.  Chest infections became more and more frequent, whereas feeding her became a constant battle.  I knew that she had to eat to survive, so why wouldn’t she open her mouth?  Some days, I felt like screaming and forcing her mouth open, only to feel so remorseful and guilty for even thinking such an abhorrent thing.  I continued to use syringes to get as many calories down Mum as possible.  Often, she would aspirate whereby, I would be forced to stick a tube down her throat to remove the access build up of liquid and phlegm.  The district Nurses had brought a suction machine to assist me when Mum was struggling with the built up secretions.  I began putting three sugars in her hot drinks.  I would make hot chocolate with milk and add more sugar.  Full fat yoghurts, in fact anything that would suck up in to a syringe, I tried.  I was not able to give her a drink and then take the dog out, like I had previously, I knew she could may well choke.

 Mum needed turning more and more now, as her skin deteriorated.  I often got up through the night to her, but now I was going down at least three to four times.  This was exceptionally tiring, when I was not leaving her to go to bed till turned 1.00am most nights and I had to be up for Marcus to go to school and the carers by 7.00am.

  I still had my anxiety; however, it rarely flared up into a full blown panic attack, as I learned how to deal with them by breathing in for seven seconds, followed by a breathing out period of eleven seconds.  I would remember to do this by thinking of the ‘seven eleven’ shops you would see on the road side in the States.   Moreover, I kept a brown paper bag in my kitchen draw as an aid for my breathing exercises. 

Doctors, district nurses and my social worker had previously asked me what I wanted to do when it came close to Mum’s last moments.  I had the option of hospital, hospice or keeping her at home.  I was adamant that she was not going anywhere.  When her time came she would remain with me.

It was late November 2008, when Mum developed yet again, another chest infection.  She was very poorly this time and the antibiotics had not shifted it.  I lay on the sofa each night, fixated on her breathing, watching her chest move up and down and listening carefully for any splutters.  Her coughing was getting worse and by the first few days of December, I was very worried. 

It was a Saturday evening whilst watching television when Mum let out a huge piercing cry.  I promptly scrambled to her side, as her expressions led me to believe that she was in pain.  She was trying to cough, but her deteriorating body had become far too weak.  I telephoned the NHS direct to discuss what I should do.  I was asked again whether I wanted her to be kept at home.  I didn’t know what to do.  I just knew that if she was in hospital, the Doctors would be able to relieve the pain she had.  I was truly frightened and wanted to abate the suffering she was going through.  An ambulance arrived and took Mum away to the Leeds General Infirmary, where I followed in the car.  Heavy tears rolling down my face, I deserted my vehicle and ran in to A and E.  Mum was in the Emergency Room, I stood patiently waiting outside the double door, palms clammy and my face stinging from the cold air on my soddened face.  Within moments, a small oriental male Doctor came out of the heavy doors and gently approached me.  Mum had developed double pneumonia and was gravely poorly.  I was escorted into the room, where I could hold Mum’s hand.   December again, I thought!   Please Mum; pull through, I cried to myself. 

Mum looked so frail laid there in that room.  Knees bent upwards with her little pink fluffy bed socks hardly able to stay on her tiny feet.  Wearing her knee length pink teddy bear night dress, she looked cold.  Her eyes were sunken to the back of her sockets.  She struggled so hard to cough; her ability to cough up any secretions had now gone and Mum was uncomfortable – I could see the fight had gone from her.  I stood at the side of her bed for what felt like eternity.  Armed police were at the side of us, as Doctors were working on a big built man.  I have no idea what was going on, but the guy must have been very important to the police.  I was reassured not to worry.  To be honest, the man gave me no worries at all; it was my Mum I was worried about.  I recalled my stay at Desert Springs Hospital in Las Vegas, there were armed police there too, right at the side of me.  Apparently there had been a shoot out!  What was it with Mum and I? I had to chuckle.

To everybody’s surprise, Mum did actually make it through the night.  Mum was transferred to a geriatric ward, where I nervously followed.   I asked the nursing staff to contact my family as I was not able to speak to them.  Some terrible unkind words had been said, which I cannot really go in to.  However, after listening to other family’s stories, our situation was not that uncommon.  How sad at such a time!  All mum’s reflexes had gone including the swallowing reflex.  I begged the Doctors to give Mum fluid intravenously.  Why did I have to beg, I kept thinking.  Don’t they want her to survive, what is wrong with everybody   I didn’t realise at the time, but everybody knew she was dying; it was just me that would not accept it.

After nearly two weeks of being given fluids, Mum had to come off them, as her veins were collapsing and there was nowhere to put the needle.  Sitting by her bedside, I soaked swabs with liquid and placed them one by one inside her mouth, begging her to suck.  Her arms where full of bruises from the needles, whilst her poor skin resembled tissue paper.  Furthermore, Mum was developing red areas wherever she had lain; on the back of her head, on her ears, her cheeks and even her elbows.  I could not get her to look at me.  I would lay my head at the side of hers to kiss her and whisper gently into her ear, but I did not get a response.

Mum continued in this state for six more days.  On the sixth day, the 22^nd December, the anniversary of Ken’s funeral and Mum’s 76^th birthday, I spent the afternoon with Mum, I went home to see Marcus come home from school and I decided that I was going back to the hospital that night.  However, much I did not want it to happen; I knew that tonight was the night.  That afternoon, even shaking Mum did not wake her; she was in a semi-conscious state, whilst her breathing was very odd.  On occasions, it looked like she had stopped breathing, as she would take in a breath through her mouth, then moments later her chest would rise; I waited anxiously for it to go back down again, which it did slowly.  A nurse placed a morphine patch behind her ear, telling me that it would help her breathing.  Mum seemed very cold in spite of the heat in the ward.  Her stick like legs had become mottled and felt icy to the touch.  I asked for additional blankets to try and give her some extra warmth.  As I reached to kiss her nose, I could hear rattling at the back of her throat, where she was too weak to cough up the secretions that had built up.

Marcus was now 15 years old; therefore, I was totally honest with him what was happening.  I gave him the option of saying goodbye, which he took.  We drove back to the hospital, his friend, Michael by his side, for support.  Marcus gently kissed his Grandma and told her how much he loved her, before walking out into the corridor for a quiet cry.  Michael too said his goodbyes before we left for home.  Sitting in the car, I glanced in my mirror; both boys were quiet, faces stained with salty tears.  Michael stayed with Marcus that night, as I returned to the hospital to be by Mum’s side. 

To watch somebody you love dying is emotionally traumatic and you have to muster up every resource in your body to hold it together.  Mum was not dying at home like I had wished for, but at least I could stay with her overnight in the hospital, which was the next best thing.

I pulled the curtains around Mum’s bed and moved the chair so that I was facing her.  I held her hand and gently squeezed it, telling her at the same time that I was there.  One of the nurses had told me that the last sense to go was hearing, therefore, she encouraged me to continue to talk to Mum and told me that I must not say anything that I would not want her to hear.  She still felt very cold, but the nurses had wrapped her up well and had put the bed socks on that I had left for her earlier.  I told Mum how much I loved her, and then proceeded to reminisce through the night.  I talked about the pets we had, about Dad and Allan.  I laughed when I reminded her of her fall in Austria!  I talked and talked and talked some more.  Gently holding her hand and stroking her head.  Forcing my eyes to stay open, I glanced at the clock.  I couldn’t believe it was 6.30am already.  I needed to get home to check on the boys and make sure that the animals had been fed and watered.  On the other hand I wanted to stay with Mum.  I decided to go outside, grab a coffee and smoke a few cigarettes to gather my thoughts. 

Wiping my sore eyes and taking deep breaths, I slowly walked back into the ward, thinking that I really did not want Mum to suffer anymore.  In my heart and at that very moment in time, I was sure that she had actually gone; it was just her body laying there waiting to catch up.

The nurses had turned Mum in my absence, so I moved my chair back round and proceeded to pull the curtains across.  I held Mum’s hand and sobbed and sobbed.  With a shaky but clear voice, I said my goodbyes.  I told her that Marcus and I would be OK, we would manage and I would do well for myself and ensure that Marcus would do the same.  I told her that I had grown up a lot and she could now leave me if she was ready to join her Mum, Dad and Allan.  I continued to gently squeeze her hand.  For a fleeting second, Mum opened her eyes and then gently closed them again just as quick.  I kept telling her not to worry and it was not fair that she was suffering.  I kind of gave her permission to go. 

At 8.00am, Mum was still the same; therefore, after speaking with the nurses, I left.  I will be back by 10.00; I called out to the staff sister.  How I drove home that morning, I will never know.  As I walked through the door, Marcus and Michael were waiting for me; eyes transfixed waiting for the bad news.  She is still with us, I told them.  I am going back in a couple of hours.  I sorted the animals out and turned on the kettle, eager for another coffee and another Marlborough light.  “Grandma did not have such a good birthday, did she Mum”, Marcus wept.

“I know babe, but I don’t really think that she knew it was her birthday”, I wept back.  As the small hand was on the nine and the big hand moved to fifteen, I splashed my face with water and reached for my bag, ready to head back to the Leeds General Infirmary.  At that precise moment, my mobile rang. After a brief hesitation, I answered.  My heart sank to the floor.  “Thank you”, I said pressing the end button on the phone.

“What Mum”?  Marcus asked.  Head held down, hands on my heart, I said it, “Grandma has just passed away”.   The feelings were immense; I can literally understand it when people say they can feel their heart breaking.  As a three, we all had a good cry.  I had to go face my Dad now and tell him.  The boys went to Michael’s house, whilst I drove back to the hospital with Dad by my side.

            On approaching the ward, I caught a glimpse of my sister in the relatives’ room.  The Staff nurse came across and told me that Mum was still there so I could go see her.  Dad and I slipped through the curtains to where she lay.  She looked almost like how I had left her, just a few hours earlier.  Dad held her hand and cried, whilst I tried to stay strong for him.  I did not want to leave her there, all alone, I wanted to stay.  I ended up coming out of the room, then re-entering three more times.  Eventually I built up the courage, gave her one last kiss and said goodbye.

Standing in the hospital car park, looking up at the huge building in front of me, I had a mixture of emotions ranging from grief and despair to a feeling of relief and freedom, not just for me, but more so for my Mum.  Vascular Dementia had literally robbed her of the last eight years of her life and had made my life pretty darn miserable too.

 I could hear the Christmas German fair adjacent to the hospital building.  The hustle and bustle of the busy Christmas shoppers lay heavy on my heart.  I hate Christmas; it had never been the same since losing Ken, now there was no point at all.  Pulling my coat to cover my freezing cold chest, I headed to the car to wait for Dad.  On approaching my car, I found a Christmas present from the Traffic Warden.  A £60.00 fine, how charming.  “Screw you”, I shouted, as I saw the tip of his hat float around the corner. Why don’t they just kill me now, I thought in a very irrational way.  Now he certainly was the ‘Ghost of the Christmas past’.  “Screw you Ebenezer”, I muttered to myself.  I did not pay that ticket out of spite, however, it did come back to haunt me resulting in £460.00 costs!

Still muttering to oneself, engine on and heater on full blast, I noticed Dad heading towards me.  At 87 years, he was not doing too badly, was he?  He looked so frail and helpless.  We just had not been getting on recently and he had driven me to distraction.  Every time he opened his mouth, I retorted back to a teenager and wanted to stick one finger up at him.  I also noticed how small he had become, at 5 foot 3 inches, I towered above him.  However, I bit my lip and gave him a hug, whilst we shared a tearful moment together.

Once again, Christmas was a nightmare and once again, I tried to be cheerful for my son.  Even though Dad and I had had this bitter feud, I still invited him for Christmas dinner.  I could not have left him alone and when all was said and done I do love him.  As Mum used to say, “Winds change, tides turn and it will all come out in the wash”.  The winds had changed and the tides had turned, I was just waiting to see what would come out in the wash!

Marcus and I spent Christmas eating chocolates and watching DVD’s on his new laptop in bed.  It was comforting and cosy and if it had been up to me, I think I would have still been there now!

            We now had Keira, a seven month old white German shepherd bitch.  I had rescued her from the family from hell, who no longer wanted her.  She brought great pleasure to Storm and I; her youthful eagerness for life uplifted my spirits.  She was smaller than Storm, but this did not stop her from hanging off his ears and pulling his tail as he tried to sleep.  Storm was a true gentleman, giving up his bed, toys, treats, in fact everything, for this mad crazy bitch that I had suddenly inflicted upon him.  She certainly took some training, as a collar and lead were totally alien to her.  However, she has enhanced all our lives, like animals seem to do.

            After watching Keira mutilate and eat every Christmas present in the house, I was glad that the festive season was now over.  I had just the funeral to get through, which I knew was going to be tough for both Marcus and I.

            On 2^nd January 2009, the funeral car pulled up, showing the words “Mum” in beautiful red and yellow carnations.  To the back, spelt “Grandma”.  It was a very cold day; in fact every funeral I have ever been to, it has been a ruddy cold day.  The ride to the crematorium was quiet; you could almost hear my heart beat.  On arrival, I met Uncle Brian; he seemed slightly smaller than I had remembered, however, his lovely smile remained the same.  I could clearly see my Grandma and my Mum in him, which I liked. 

            My dear friend Phil did me proud; stood tall with his ink coloured suit and crisp white shirt, covered with a dark wool coat, he came over to kiss my cheek.  Phil was of a similar height to Ken, with light brown hair ever so slightly receding.  His small rectangular glasses framing his long face, he held on to Marcus to give his support.  Michael too made me proud, with his smart dark jeans and shirt and his blonde hair freshly cut and styled.  His round bubbly cheeky face, looked red and sad, as he walked quietly away to accompany Marcus and Phil.  Marcus was getting ever so tall, now completely overtaken Michael and now comparable with Phil.

            As I turned around I saw a stunning red hat heading towards me, arms outstretched, with a warm saddened faced, my friend Louise rushed up and hugged me compassionately.  Louise is a beautiful woman, always well groomed, with her long dark curly hair tumbling over her shoulders.  I was and still am always amazed how she manages to walk in such high shoes; but she does – magnificently.  I, on the other hand, would not make it to the front door, without stumbling over flat on my face and breaking my nose, and that is just in kitten heels!

            Louise and I tightly held hands throughout the service, with the occasionally squeeze, she comforted me.  Marcus and Michael remained with Phil, as my Dad and sister sat together.  The service seemed too short. I wanted to sit there forever; I did not want to let her go.  Tears softly moistened my face, as it was time to leave.  Tensions were taught as my sister ignored my very presence.  Remorsefully, I got a tad drunk that night!

            The following weeks were very odd.  I was not quite sure what to do with myself.  Marcus was old enough not to have his Mum around all of the time and I kind of felt redundant.  I found much solace in my animals, whom were permanently there for me, no matter what.  I certainly had had a roller coaster of a ride, but now it had ended and I didn’t know what to do.  Allan was not here, Mum was not here, and Marcus certainly did not need picking up from school any more.  My role as a career had ended.  It hit me pretty hard.  I do not think people fully appreciate this great loss of self, this huge empty void that bears heavy on the soul.  I knew and still know that my Dad needs me, however, his words to me are so horrid that I can hardly bear to look at him sometimes.  I know he feels bitter over things, but I can not help this.  I do know in my heart of hearts that I am not able to care for somebody again to that extent – maybe he knows this.

Strange how it might seem, the death of Mum, did not affect me as much as the death of Ken.  I did struggle to understand this.  However, clearly in my mind, I knew that I had done everything I could for my Mum and that seemed to be my saving grace.  I had grieved for Mum for eight years, now I could let this grief go.

In a way, I was kind of free now.  I was able to go out.  I could do anything I wanted really…..but what?  That was the question.

Although, one must not forget those ugly guilty feelings that emerge, when you think like that.    On one hand you feel a sense of utter relief, like a tremendous weight has been lifted from off of your shoulders; however, on the other hand, there is this painful sense of loss and the feeling that you should not forget this.  What one must always remember and believe me, I do remind myself off this often, if that your loved one, would not want you to remain in this pitiful state, but would want you fly free and enjoy the rest of your life.  For none of us know what time we have left.

One thing that this whole episode in my life has taught me is that material things do not matter in any shape or form.  Mum would reward me with pocket money for polishing her trinkets on a Sunday afternoon.  All these trinkets vanished in the moving and upheaval that followed the diagnosis.  Recently, I had my car window smashed; my neighbour, Steve and his girlfriend had telephoned me quite late in the night to inform me of what had happened.  They kindly met me at my gate for support.  They were surprised at how lightly I had taken the situation.  Indeed a year or so ago, I would of burst into tears and them probably proceeded into a panic attack.  However, all I could think was that my family is safe and my animals are unhurt, therefore, that is all that matters.  Yes, it was a pain in the backside, but at the end of the day, it is a man made object, of which can be replaced.

            Everybody experiences grief in a different way and people sometimes are unable to know themselves how they will deal with it until the time comes.  Grief is complex and many emotions surface, including, disbelief, shock, resentment, pain and depression.  However, upon the stage of finally, acceptance, one can manage to move slowly forward.  The memories of your loved ones stay with you forever. 

            Some people need time and space to grieve.  On the other hand, others need to be kept busy and find themselves doing all kind of jobs just to keep their mind active.  Others need family and friends close by, whilst others need complete solace.   By February, I started a full time job, which for me, was the best thing in the World.  I was back in to society and meeting new people on a daily basis – working with carers, of course!