Chapter 9 - Post Caring

Four years had seemed such a long time, I forgot what it was like to be within that working ethos; in fact to be quite frank, I was terrified!  My self confidence and self esteem was extremely low.  I knew in my mind that if I did not get my butt into gear then I would end up in the benefit’s trap – somewhere I certainly did not want to be.  Not only did I want to provide for my son and me, but I needed to show my son how important it is to get your life back on track and how important it is to be out in the workforce.  I prepared my Curriculum Vitae and at the end of January 2009, I began applying for jobs.  I did not particularly wish to go back into teaching; strange, I know, after all that time spent studying!  In addition, my self confidence certainly was not up to standing in front of a class room of unruly children, in fact, I shuddered at the very thought.  I excitedly applied for a position at My Pet Stop on the outskirts of Leeds.  Unfortunately, I did not get the job, as he said I was over qualified and they wanted somebody who would stay long term.  I was fuming, as they certainly did not know me!  I am not the type of person who moves from job to job and furthermore, they would have been very hard pushed to find somebody who would have loved the animals as much as me!  I certainly did not apply for the salary or their benefits package!  Over the next few weeks, I had written to numerous companies, until I saw an advert in the Yorkshire Evening Post for a person to help set up, promote and run the Leeds Carer’s Emergency Service.  I had no marketing experience whatsoever; however, apparently my Manager said I won them over with my caring attitude!   I have been with the Company now for over two years and I am pleased to say that I now feel like I am back to the “old” Vicki, of which I once was! 

The scheme of which I was involved with at work went live in March and all of a sudden, I found myself pushed out there, attending meetings with professionals and carers, like I had just been.  It seemed ironic in a way, as many of the emotions and feelings of the carers I met mirrored my self in a way.  Walking back into Aire Court Community Mental Health Centre to prepare and carry out a promotional meeting hit me like a brick.  As I walked through the double glass doors, I caught a glimpse of the chairs and the coffee machine of where Mum and I once sat, drinking coffee and peering around the reception area like little children on their very first day at school.  As I approached the front desk and introduced myself, a very tall slender, brown suited man came to greet me.  With a huge, warm smile, my Mum’s Social Worker gave me a welcoming hug and led me to the meeting room.  With the help of Andy, I managed to carry off my meeting and make new contacts.

The first holiday Marcus and I went on, seemed very strange as we no longer needed to plan it like a military process.  When Mum was here and especially Allan, it could take months to prepare.  First and foremost, managing to book respite care for Mum, carers for Allan and the actual holiday dates to all coincide was indeed something MI5 would be proud of.  Then came to the pets!  On one particular trip to Greece, the transportation of family members, dogs to one kennel, cats to another and the rabbits to another, all in various locations in West Yorkshire was an operation in itself, taking up two whole days!  In fact the second week of my holiday was spent thinking about how I would manage the military operation when I got back.  Furthermore, just to add insult to injury, I would need to purchase a whole new wardrobe for Mum on her return, due to the usual inept laundry staff and packing abilities.  To this day, I have not got a clue whom Joan Brown was, but we had many of her clothes!  I contacted the care home, to enquire about this, as her name was sown delicately into all the garments Mum had brought home.  Amazingly enough, they had never heard of her!  It was always rather odd, that her hair brush never returned with her, although the staff were not totally nasty, they always gave her somebody else’s.  I am just pleased that she was no longer able to wear her false teeth!  Although, I could not really complain, as they had the fundamentals correct, in the way that they had cared for my Mum, in comparison to the residential and nursing homes she had stayed in previously.  Moreover, she had been fed and watered, which was a bonus, in my experience.  I have seen car stickers and fridge magnets that quote, “be nice to your children, they will be the ones choosing your nursing home”.  Funny, although very true!

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            Facing the death of a loved is the most traumatic experience that any of us will go through.  Dealing with the death is such a painful process; however, the practicalities that follow seem cold and are terribly difficult to deal with.  First and foremost, the death needs to be registered.  Remember to get enough copies of the death certificate to forward to all the appropriate organisations.  Secondly, it is now time to arrange your loved one’s funeral.  Many people have already pre-planned their funeral, which makes life that bit easier.  Mum had not planned anything; therefore, it was up to me to decide what she would have wanted.  She had told me at some point that she had wanted to be cremated. Thus, this is what I arranged.  I also managed to find a Spiritualist minister, as I also know that this would of being one of Mum’s wishes.  Remember that if you have been on benefits whilst being a carer, you may be entitled to help with funeral costs.  I believe it is the form SF200, which you will need from your local benefits office.

            If there is a Will, you will need to contact the executor (if that’s not you), to begin the process of probate.  However, if there is no Will, then this is the time to decide who will be sorting out your loved one’s affairs.  It is essential at this point to contact the Probate registry to apply for letters of administration.  There are many good internet sites, which explain all these processes.  Create a list of all the organisations that need to be contacted, for example: Benefits office; DVLA; Banks and Building societies; utility suppliers, etc.  If you have been receiving a Carer’s allowance, this will continue for a further eights weeks. I find it quite strange how people of a pensionable age are unable to claim Carer’s Allowance.  In addition, it amazes me that younger persons, whom are carers on Income Support, are entitled to Carer’s Allowance, however, half of this is then knocked off from their benefit, and defeats the purpose somewhat.  Anyhow, I will come off my benefit and political band wagon!

            I have spoken to some carers who have told me that grief did not hit them straight away.  They went through the funeral unscathed and dealt with all the affairs in a kind a military fashion.  However, they noted that when they started to notice that everybody around them was starting to get on with their lives, they suddenly found themselves in despair.  After caring for somebody with Dementia for a significant length of time, it takes time to adjust.  The anxiety, stress and exhaustion may well eventually catch up with you and it is possible to feel unwell for a while.  Remember, you may well be physically, emotionally and even financially drained.

            Other carers have mentioned to me that their grief comes in waves.  Just as they are beginning to feel that bit better and more in control, a further wave hits them.  However, these waves do get smaller and less infrequent as time goes by.

            As stated in the previous chapter, I grieved for Mum whilst she was still alive.  I grieved for the person she used to be and also grieved for what was to come.  It was a long painful process.  It is quite possible that you are finding that you are in the exact same situation – you are not alone, many carers go through this.  I feel it is so important that you discuss these feelings.  Carer’s groups are ideal opportunities to talk to other people who are going through the same as you.  I have come across many carers in my work now, who have found good friends within these groups – even found people to go on holidays with, when their loved ones are on respite.  Please remember, you deserve a life too!

            However, not everybody goes through this anticipatory grief – your emotions will be all over the place.  It is quite understandable, and I suppose I did too, go through a grieving process for the life that you are leading now.  After the death of a cared for person, the carer will realise how much their life has actually changed over the years, thus feeling very saddened by the whole affair; this is perfectly natural at such a massive change.  I did prepare myself for Mum’s death along with preparing my son, Marcus.  In a fashion, I found closure at Mum’s funeral.  Although many carers find themselves grieving all over again.    What I am trying to put across, is that we are all very different and deal with grief in various ways – remember, give yourself time to adjust and above all be kind to yourself.  If you are continuing to struggle and life seems just too difficult, contact Cruse Bereavement; they can arrange bereavement counseling in your area.

            Caring for someone with Dementia is both physically and mentally exhausting – somewhat overwhelming at times.  Through my personal experience, I can confidently say that lack of sleep can be a tremendous toll.  Not only did I suffer from anxiety and depression, but moreover, I suffered frightful migraines that lasted for days.  In addition, I found myself suffering with many kinds of various aches and pains across my body.    I know I keep saying it, but it does take time to adjust and patience and taking care of yourself is the key.  That means eating properly, taking gentle exercise and trying to get yourself out there.  Many carers find that they have been isolated for long periods and therefore, lack the confidence to actually get out there – this is quite understandable.  Take your time and take small progressive steps – you will get there.  Voluntary work is an ideal place to start, as you are able to choose and tell the organisation of your choice, what hours and days you want to help out.

            If I had not found a job so quickly, I had planned to approach an animal charity to offer my time.  This would have undoubtedly given me a feeling of self worth and would have provided me with extra skills for when I was ready for employment. 

            When I began looking for employment, I was somewhat anxious about the huge gap in my CV.  However, after talking to close friends, I soon realised that I had gained many skills during my role as a carer.  This enabled me to change my career path and work within an environment of which I could show empathy and understanding and above all, enjoy.  I could see that I had spent eight years researching Vascular Dementia, years before that studying for a degree.

            Many people find that they are not quite ready to commit themselves to employment, thus learning a new skill at your local college could be the answer.  This will not only boost your self esteem, but will allow you to meet new people and gain confidence.  Above all, it is now time to take care of yourself, give yourself time to adjust and accept what has happened and slowing, but surely, you will recover and you will move on.  

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!

Chapter 7 - My new role as a carer

It was 3:00am in the morning, lying in bed, with my ginger tom cat purring tentatively at my side, I suddenly awoke to a strange loud scratching sound.  I was somewhat startled, thus raised my head from the pillow precipitously; KingGinge too, looked alarmed.  I listened again, scratch, scratch, scratch.  I looked at my feline companion and laughed nervously.  It was not a huge rat or a burglar trying to get in, it was Storm.  “What’s the matter boy”?  I shouted.  I don’t know whether, I really expected a reply back, but nevertheless, I listened apprehensively.  I really did not want to go downstairs, I was weary and blurry eyed, but I did not want him to awaken Mum, so I reached for my dressing gown and arduously trudged down the stairs.  KingGinge followed to see what all the fuss was about.

 On opening the kitchen door, I instantly knew something was wrong. Storm was frantic; he immediately raced into the living room to Mum, nose in the air, tail outstretched and whimpering like I had not heard since he was a pup when he was frightened of the bustling, heavy lorries on the main road.  At that moment, I felt a real sense of urgency; my heart seemed to do a somersault, as I anxiously followed my faithful friend.  Mum’s eyes were rolling again at the back of her head.  She was not fitting.  My guess was that she was coming round from a seizure.  I had began to notice the signs of when she was about to have a seizure and when she had just had one.  “Oh Mum”!  I cried.  I reached out to gently stroke her forehead and roll her onto her side.  I stood and stroked her for a while, until she immersed into a deep slumber, of which she normally did after these incidents.  Storm had been sitting apprehensively by my feet, however, then crawled under Mum’s bed back to his night time spot.  “You are such a clever dog”, I praised.  I reached out to stroke his face appreciatively, whilst he licked my hand in return.  From that night on, Storm was named “Night Nurse” at bed times.  Although, I did end up purchasing a baby monitor as extra back up.  I was very impressed that Storm had instinctively known that all was not well and I was grateful to him for waking me; although, KingGinge was not too enraptured, as he swished his stripy tail in annoyance and shimmied out through the cat flap to proceed on his moonlit patrol!

During the first year, I seemed to ease in to my new role, as a carer.   I loved having Mum home.  I got immense satisfaction when she smiled at me and a lovely warm fuzzy feeling when she would laugh out unexpectedly.  She definitely benefited from the animals; her expressions said it all.  However, it was my son that would bring on her hugest warm smile.  My son and his best friend since nursery, Michael, would often sit at her side playing the X box or watching a film.  Mum would lay there, propped up to the hilt with pillows watching them, when she would let out the occasional laugh and a “OOOOOH” noise, which would in turn, make the boys laugh;  Mum would then laugh again, only louder.  It was pure joy to see her interacting with the children and I was happy that the boys had accepted her into their space too.  It was a big change for Marcus; however, he coped with the situation with infallible understanding.  I often wondered how hard it must have been for him, as he was often turned out of the living room, so that I and/or the carers could attend to Mum’s personal care.  It must have been quite difficult for him having to accept third parties calling in and out every day of the week.  I found this very hard in the beginning.  I never stopped his friends coming in and they continued to do so.  I was concerned what his friends would think and wondered if Marcus was embarrassed; but they all seemed to take things in their stride.  They would occasionally go back into the room holding their noses; however, Grandma would just laugh.

 Grandma in the living room just became the norm.  I would watch the television low, when it became late, or if my friend came on an evening, we would sit in the kitchen, in order that Mum could rest.  However, I noticed that however quiet we were, she would always stay awake until they had gone, regardless of the time.  Before retiring to my quilt and my nightly ginger cuddles, I would offer Mum a drink, “have you been listening to that entire Mum”? I’d laugh.  She would often, give me a wry look or a stern stare!  I often wondered if she understood what we were saying, as I have had some ‘right’ conversations at that kitchen table!  I shudder to think!

It was inevitable that I did have to go out through the day, whether it was to take Storm for a walk, go shopping or pick Marcus up from school.  This was the hard part, I always felt guilty when leaving her.  Although, I knew she was as safe as she could be in her hospital bed and cot sides, I did always worry something may happen.  She could not be left for too long, as she needed turning regularly to avoid pressure sores and due to her being doubly incontinent, I was always worried she would be laid in a soiled pad.  Before any trip to the supermarket, Mum would be given a large drink, a snack and a clean pad.   Then, the same again on my return.

   It was difficult, especially when people would ask me to do things for them when I was out.  I was the only person in the family with a car; therefore, people would rely on me for certain things.  Allan in particular had to have his shopping done for him as his dependence on me was getting clearer and clearer, as his health deteriorated even further.  It was not Allan’s fault, but often I would feel so frustrated, as I would be rushing about, completely aware that Mum was on her own and I knew I had get back as soon as possible;  I was also tied to certain times when I knew the carers were due.  Furthermore, Allan began to loose the track of time and often would call me at strange hours through the night, asking me to bring him some bread.  I would tell him the time and he would appear shocked and would humbly apologise.

When I did have to go out, I would often leave Frank Sinatra playing on the stereo or Matt Monroe and sometimes, when I could stand it, Perry Como (one of Mum’s favourites).  Mum responded well to music and often I could get her to sway and jig her arms, often in a lively rhythmical manner to “New York, New York” and on the odd occasion she would try to sing, which was wonderful to watch.  From living at home, it was obvious by Mum’s health that she had been lacking stimuli in the residential homes.  Moreover, her skin seemed to improve dramatically.  She only ever suffered one more pressure sore and that was a direct result from when she went to respite!

  Regular turning, clean pads and good nutrition are the key to promoting good skin health, but yet so many elderly infirm people go on to suffer these appalling wounds.  I found sheepskin to be excellent for Mum’s skin.  The hospital provided sheepskin pads to go in-between Mum’s fingers and the palms of her hands, which helped tremendously; it also helped to keep her hands open just that little bit, as prior to that, they were closing up and it was getting increasingly harder to wash in between them.  In the end, Mum had pads, blankets, cushions and sheepskin everywhere, under her bottom, between her knees, between the feet, under the heels.  It is a wonder I could find her in the bed!  Marcus and I would often laugh, as finding Mum in her bed was like looking for a tiny chick in a barn of hay! 

Shortly after Easter, Mum became quite poorly with a chest infection.  I was terribly worried in case it traveled to her lungs, resulting in pneumonia.  We were fortunate, that the antibiotics worked relatively quickly and Mum began to perk up.  However, she had not eaten very well for a few days.  One day I could only manage to coax her with liquids.  Thus, on this particular day, as she seemed to look much better and the coughing had stopped, I made her a cottage pie.  I blended the majority of Mum’s foods, however, cottage and shepherds pie, I never bothered, I just tended to mash it up a little with a fork.  Mum had eaten it this way for months; therefore, I continued in to the lounge, sitting down beside her bed and proceeded to offer her meal.  Mum opened her mouth in anticipation, like a little sparrow in it’s nest waiting for the mother bird to feed it some scrumptious grub.  There was plenty of melted cheese on the top, in a vain attempt to try and fatten her up!  I placed the small teaspoon of mashed mince, carrots, potatoes and cheese into her mouth and watched anxiously, hoping that she would devour the lot.  She seemed to relish my pie, therefore, we carried on.  However, after several mouthfuls, all of sudden, Mum vigorously spat food out, proceeding with a violent cough.  Her face became an intense crimson red, as her eyes began to swell with water.  I instantaneously jumped up, elevated the bed further so that she was now leaning forward in the sitting position and I began to tap her back; frighteningly, she continued to choke; I stuck my fingers somewhat aggressively into her mouth and fished around in vain.

  In utter panic, I dialed 999 from my mobile and screamed down the phone.  At this point I noticed that her lips had turned blue.  The man on the other side of the line, informed me that an ambulance had been dispatched; I was still panicking and screaming down the phone,  he consequently  told me to calm down and carried on to explain the Heimlich maneuver to me.  I took in a few deep breaths and listened very carefully, I had no time to waste.  I had seen this done on Casualty!  I somehow managed to jump into Mum’s bed, with my high heeled boots on, squeeze behind her and sharply pulled in and up under Mum’s quite prominent ribcage.  Nothing happened – I repeated, the phone had now dropped to the floor, where Storm was patiently stood transfixed on the strange events taking place.  As quick as a flash, a piece of mince launched on to her lap.  I watched in delight, as the blue drained from Mum’s complexion and a bright red colour took its place.  I could hear somebody shouting from the phone at the same time as a paramedic came running down my path, Storm too, dashing to greet him.  A further two paramedics joined us.  They checked Mum’s airways and continued to aspirate her just in case.  Mum coughed and spluttered, but all was well.  They checked Mum’s ribs, as I was worried that I may have broken them, as I used such force in my blind panic.  Fortunately, all seemed fine; I was told to just keep an eye on them.

 Again, I was saved by emergency services on the other end of a phone.  I did telephone the call centre to thank them for helping me save Mum’s life.  Marcus called me a “hero” for several weeks after this event.  I was so pleased with myself, but nevertheless, mince never passed Mum’s lips again, unless of course it was in liquid form!  Oddly enough, I have never made it since!

A week or so after this extreme event, Mum went into respite care for a week, to give me some quality time with Marcus.  We had actually found quite a nice home in Castleford, which catered well for her needs.  I had noticed that when she came home from there, they had taken good care of her; mind you they had received the “Scarborough” warning from me prior to her stay.  When she had visited previous homes, she had returned with skin irritations, bed sores, dry and cracked lips, obviously through poor oral care and lack of fluids.  She had also returned without her clothes and several other clothes belonging to other people, which always irritated me.  However, at last, we had found somewhere we liked.  Marcus and I had had a lovely week; going to the cinema, taking Storm to the seaside and enjoying meals out – we were now ready for Mum’s return.

The ambulance usually brought Mum back at lunch time on a Monday morning, therefore, after sending Marcus to school, I thought I would go and check on Allan before her return.  I walked the short distance up the hill to Allan’s home and let myself in with my spare key.  “Allan, it’s only me”, I shouted.  I walked through and found him fast asleep in bed.  I checked the file, which the carers always wrote in when they left.  They had commented that Allan was very tired and wanted to stay in bed for a bit longer.  He looked very peaceful, laid flat on his back, arms by his side, mouth open and snoring loudly, big raspberry sounds, with the occasional splutter.  I stroked his arm, but he did not stir.  Normally, when I found him asleep, I would leave and call back later in the day, but for some reason, I didn’t this day.  I pulled a chair across to sit down and quietly watched him sleep.  He made some funny rasping noises, but seemed that peaceful I did not want to wake him.  I sat there for quite a while, until I suddenly noticed the time.  I got up, gently kissed him on the head, left his bedroom door slightly ajar and left to ensure that I was home waiting for the ambulance.

 I just had chance to enjoy a cup of tea and a chocolate digestive, when Mum arrived.  It always made me laugh how the guys brought Mum in.  A stretcher was too big to get into my home, therefore, they used a little chair and each man would hold it at either end.  Mum would be swaddled in a white blanket, just her face showing – she always reminded me of Mother Theresa, as she entered the house.  However much I needed the break, I was always delighted to have her back; I missed her.  “Just in time for lunch Mum”, I said with a big smile.

“Oooooooooooooooooooooo”, she replied with her usual infectious grin.

Mum had only been home an hour, when the telephone rang.  It was Mel, Allan’s carer.  Mel was a lovely man, who Allan trusted and respected.  He was an outspoken chap who called a spade a spade – you got what you saw.  Allan liked this about him.  Mel also occasionally came to care for Mum, she too responded to him with fondness and affection.  However much I liked Mel, I was not ready to hear what he had to say.  He had just called to Allan’s for his lunch time visit and had found him dead in his bed.  Mel had told me that he had just recently passed as he was still warm.  The emergency services had been called and he and his co worker were staying with him until they arrived.

  I could not believe my ears, why had I not stayed with him; I had only been left an hour and half?  I raced up the hill where Mel and Caroline met me with outstretched arms.  Allan looked exactly as how I had left him – still peaceful, still looked asleep.  I sat and cried my heart out for Allan.  It was so sad; I wish he had known I was there earlier.  I wish I could have said goodbye properly.  Above all, I wish he could have seen Mum before he died.  I had been through all this before; I knew that I now had so much to deal with.  I telephoned Mum and Allan’s social worker and my poor Mum went straight back to respite for a further week.  Bless her, she did not have a clue what had happened.  I was not able to sort Allan’s home and affairs out and leave Mum alone and I certainly did not want her around when I was so upset in case she picked up on the atmosphere.  I did not want Mum to feel sad.

Mum stayed in respite until after the funeral, a further 10 days.  Marcus broke down at the funeral; my heart went out to him.  It was only a few years since we had been sitting in the same seat saying goodbye to his Dad.  My family did not come, however, my two good friends, Louise and Phil were there, as was the social worker and Allan’s carers.

During the following months, my health began to deteriorate.  Not physically I might add, but mentally.  Tiredness was now causing me a huge problem.  Apart from my closest friends, other friends seemed to drop off at the wayside.  There always seemed to be some trauma in my life, I wondered if they were just simply fed up of me.  Some older friends never came again after Mum moved in.   Mum’s friends never visited, which I must admit, did hurt.  Why is that?  I do not know.  I have spoken to carers recently who have said exactly the same thing.  

 I recently met an elderly carer, who cared for her husband at home.  He had been living with Alzheimer’s for the past five years.  Prior to his condition, he and his wife had thoroughly enjoyed a very active social life.  For twenty years they had met up with another couple of similar age and enjoyed ballroom dancing every Friday evening.  They had formed a wonderful strong friendship over this period of time and occasionally went to Blackpool together for long weekends.  The girls would shop and play bingo on the sea front, as the boys would enjoy a Jack Daniels and a game of darts.  On an evening, the four would excitedly get dressed up, put on their dancing shoes and head off to the Blackpool tower.   However, after Frank’s (not his real name) diagnosis, they did not see as much of their dear friends.  Morever, as Frank’s Alzheimer’s took hold and they were unable to carry out their usual social activities, the two couples drifted apart.  Occasionally, Frank’s wife, Annie would see one of them whilst out shopping.  She commented to me that they would politely ask how Frank was, then make their excuses and hurry off in the opposite direction.  My heart went out to Annie; not only was she slowing losing her husband, her social life and her freedom, but here she was, losing her two best friends with whom she had spent the past twenty years or so socializing with.   I do not know whether people feel scared of what that person has become, whether they are in denial or whether they are just plain rude and dysfunctional.  Whatever the reason, it is not very nice.  However, surprisingly, as already stated, it did not stop Marcus’ friends entering our home.  How children are so different!

I did begin to feel isolated.  Occasionally, I would be invited out, however, finding a sitter for Marcus was hard enough, but now I had to find a sitter for Marcus and Mum, which proved very hard.  Thus, I would not go out.  I remember my friend Phil offering, which was very good of him.  I did take him up on the offer once, but I was worried how he would cope if Mum had a seizure or took a turn for the worse.  He certainly would not be able to change Mum’s pad, not that she would have wanted him to anyway, it was not ideal.

Not only was I sleep deprived and feeling very lethargic, but after a few years, I had found myself on a diet of strong coffee, junk food and Marlborough lights.  I did not go out anymore, unless it was for other people or to go to the supermarket.  Even though my two close friends were there for me, it did not stop me spiraling downhill into some dark deep hole.  Unable to climb out, I continued with my diet and began sleeping on an afternoons, not really wanting to see anybody at all.   I could not understand what was wrong with me; I had never felt like this before.

As like many housing estates across the length and breadth of the UK, my immediate environment had become a target for local youths.  Gangs of hoodies, with a bottle in one hand and a spliff in the other would hoard round our corner shop.  Abusive rude language, smashed bottles, car vandalisms were now becoming the norm.  One particular evening, my wooden gate and fence was kicked down, just for fun!  In addition, I suffered from loud music from my neighbours, which drove me to utter distraction.  How thoughtless and how bloody rude, these people were.  They were supposed to be friends.  I can see now that friends do not do that to each other.  My cat was savaged and killed my two staffs and I had simply had enough.  To add to the pressure, knowing what I was formally like, neighbours would turn to me for help.  I crazily took on the role as neighbourhood watch co-coordinator and arranged a few meetings.  However, I was not able to cope; therefore, I could not do the role properly.

My health deteriorated one evening in autumn.  Mum’s carers had just left, so it would have been about 7.00pm.  It was a chilly frosty night; I threw on my coat to run the 300 meter gauntlet to the local store.  As I was approaching the entrance, I heard an almighty bang, lots of crashing sounds and the local shop keeper crying out.  I was concerned and opened the shop door apprehensively, unsure of what I might find.  I saw a masked man behind the counter, his hand was around the shopkeeper’s neck, and the other was wielding a knife.  I did not even scream, I just walked out of the shop, as though I had just been to buy a loaf of bread!  I dialed 999 whilst standing there in full view of the robber.  The masked man ran out and across the road, carrying the heavy till, which he had managed to break free from the bolted down counter.

 Locals who had seen the man running came rushing to our shopkeeper’s aid; within minutes blue sirens filled the street.  I had returned home, I needed to get away.  I was in pain; my left arm was absolutely killing me.  I had never had pain like that before.  My chest began to feel tight as I collapsed on to the sofa.  I was crying, it hurt that much.  Marcus telephoned my Dad and he came over to check on me.  “Dad, I think I’m having a heart attack”, I cried out, still clutching my arm.  By this time I was hyperventilating, whilst Dad was trying to get me to breathe properly.  It was no use, I was panicking.  Nothing can happen to me, I thought, what would happen to Mum, Marcus and my animals if I died?  Moments passed and I was hooked up to some kind of a monitor in the back of an ambulance.  I was on my own as Dad had no choice but to stay with Mum and Marcus.

  After an ECG at St James hospital, I was sent to a ward overnight to be under observation.  I rang my friend Phil, who came quickly to be by my side.  As he walked into my little side room, my pain flared up again.  My arm felt like it was being torn off, my chest was pounding and my legs would not stop shaking.  I fumbled for the buzzer as Phil tried to calm me down.  A Doctor came in and suggested that I had suffered a panic attack.  “A what”? I murmured,

“What I just witnessed Victoria, was the classic symptoms of a panic attack”, he carried on.  He pulled a chair up to the side of the bed and began to explain.

“But I was in real pain, Doctor”, I cried in total disbelief.  “How on earth could real pain be just a panic attack”, I went on, still sobbing and clinging on to my friends arm.

The Doctor explained that our bodies have evolutionary responses, commonly referred to as ‘fight’ or ‘flight’.  He went on to tell me that when a person suffers a panic attack, this response is out of context.  It is this response that floods the body with hormones, in particular, adrenaline, thus aiding it in its defense against harm.  My panic attack was the response to my sympathetic nervous system, which included chest pains, hyperventilation, sweating, dizziness and trembling just to name a few.

Going home that night, I had a potent cocktail of emotions building up inside of me.  It was a shocking realisation that the intense pain I had endured was indeed a panic attack.  I filed this information towards the back of my brain; it was utter nonsense, I thought.  I had to keep going, I thought to myself; I couldn’t possible allow myself to get in to such a state like that again.  I certainly could understand and accept, to a degree, that I had panicked, although I had panicked for a reason and that reason was nauseating pain. 

However, that first panic attack was the first of many, before I eventually accepted what that doctor had told me on that night.  I eventually, after a few years, I might add, realised that I was not going to die from a panic attack, no matter how bad it was.  The more I faced them head on, the less intense they become.

I spent the next few years in mental burnout.  I felt guilty as I should be enjoying the time I had left with Mum.  I certainly was not living; I merely existed, in my own little world revolving around my home.  I launched from one crisis to another.  Often I would feel disorientated, like the whole world was slowing down around me.  Other times when I would be in the supermarket, doing the food shopping, I would feel depersonalized, as though I was looking on at myself, trudging around with the trolley.  Sometimes my world did not feel real.  I was exhausted, but I was unable to sleep, as palpitations would begin as soon as my head hit the pillow.  I was terrified of dying.  I had this thought constantly going around and around in my head, that if I did go to sleep, I would not wake up.  It did not seem abnormal to me, because in my opinion at the time, Ken had gone to sleep and he did not wake up; it could happen.  Fall outs with family added to my melting pot of emotions, whatever I did, I suffered guilt. I felt abandoned and raw.  My appearance became disheveled, my skin was spotty and I piled on the pounds.  I felt and looked a mess. I hated going out, although when I was out shopping and I became warm, shaky, scared or faint, I would race back to my car.  My car was my anchor point – I felt safe in there, nobody could see me, well so I thought.

I tried not to really think about what I was doing when I was attending to Mum, which would have been too hard to contemplate, thus, I would shrug any feelings to one side.  However, occasionally, I could not shrug them off and I would sit and think how the tables had turned.  It did not seem right.  I was only in my early thirty’s; I should still be going in to town shopping with her on a Saturday’s, not changing her pad and wiping her chin.  In order to carry on caring for Mum and for my own self preservation, I continued as though it was a job.  I suppose I kind of removed myself from the situation, trying to numb my emotions so I could deal with Mum’s needs.

There were some days when I felt like packing a bag and leaving, but I knew I could not do it.  One particular night after quite an emotional day, I tried again to go to bed.  However, this night was different, as I lay down with the quilt wrapped tight around me like an Egyptian mummy, my palpitations and hot sweats began, and my legs began to tremble as my chest became tight.  For some strange reason that night I thought, what the hell, if I am going to die, I am going to die, there is not a damn thing I can do about it.  Oddly enough, I slept like a baby that night.  The following morning, the realisation hit me and I made an appointment to see my Doctor.

I had various tests carried out and eventually I was prescribed anti-depressants and beta blockers for my anxiety.  The first lot of medication didn’t work and I had terrible side effects.  However, after trying a couple of different types of anti-depressants, I ended up on Venlafaxine, which in time, my friends noticed a big difference.  Concurrently on medication and dealing with my attacks, they slowly started to ease.  Although, on the odd occasion, I would still feel one rising to the surface, but nevertheless, I managed them and was able to sleep.  I did have some very disturbing and vivid dreams about Ken and Allan, which knocked me for six, but slowly they too started to ease.  I would not say I was better at this stage, far from it, but I was coping and dealing with my illness head on.  I talked about my depression with friends, which I know now was crucial in my eventual recovery.   I remember one day apprehensively looking in the mirror.  What has happened to me?  I thought.  I was, the teacher, the parent, the independent traveler, that took her little boy on foreign adventures on her own, was always the life and soul at a party and was the ever eternal optimist, here I was now, on anti depressants, beta blockers, was fat and smoked like a chimney.  I began to truly think that I would die before Mum.

*

If you are a carer and you experience any similar depressive feelings or experience panic attacks, I strongly urge you to seek medical advice.  I do not like taking tablets, but trust me when things are so bad that you are unable to function, medication may well could be the favourable answer.  I did try counselling, but it was not sufficient for me, I needed some kind of cognitive behaviour therapy.  I tried counselling three times – eventually I worked things out on my own.  However, counseling works for many people, especially for those who have nobody to talk to.  I suppose that I had friends to burden, so to speak; therefore, there was no need to get things off my chest to a stranger.

It is crucial to keep reminding yourself that you are a person in your own right and ensure that you find time to relax; even if it is only to light a few candles, run a warm bath using aromatherapy oils to add a desired scent, .and unwind.  Recognising your own limitations and knowing when you need respite is a step in a positive direction.  Plan a trip for when you do reserve respite and spend time making plans.  Everybody needs something to look forward to.  My crucial ‘me’ time was walking Storm late in the night, taking in the cool air whilst admiring the skies above.  I would try to work out the star constellations and would be really proud of myself when I found a new one.  Everybody needs sometime to just get away, whatever that may be.

If it is a friend of yours who is a carer, find another friend and take it in turns for caring for their loved one and taking your friend out.  It could be for a meal, to the cinema – maybe just a drive or a walk.  One thing that I can assure you is that your friend will really appreciate your efforts and you will be making a difference to their life.  There is no point in just doing this the once, make it a fortnightly or monthly routine, something that your friend can look forward to.  I doubt very much that I would have got better as quickly as I did, had I not had any friends for support.  I was lucky; there are thousands of carers out there who are totally alone.  Do you  know one?

Chapter 6 - Bringing Mum home

It was December 9^th, 2003 when I had called at my friend’s house for a worried chat.  Whilst sipping hot sweet tea, I told him how worried I was about Marcus’ Dad.  His Dad and I had split up 6 years earlier, but we had remained close and were best friends.  Ken was 26 years my senior and had lived with depression for a long time.  However much I loved him, these factors had eventually taken its toll.  It is amazing how well you can get on with somebody and show empathy, when you do not live with them. 

Ken was of a very slim build and stood tall, although, much to his misery, he never quite made it to 6 foot.  He was always proud of the fact that when he was a boy, his uncle was known as the tallest policeman in Leeds.  His dark hair and even darker eyes with his olive skin gave him a Mediterranean appearance, although he was a Yorkshire man through and through.  However, handsome I thought he was, it was his voice that had attracted me; deep, warm and very sexy.  Moreover, he could do the unmistakable, iconic Scottish burr of Sean Connery!  Even though he was twenty six years my elder, he had a kind of air of vulnerability about him, of which I cannot quite put my finger on.  I found this somewhat endearing.

 Ken was supposed to have come for tea on the previous Friday.  I had told him that I was making his favourite chilli, with rice and pita bread – in the slow cooker, just how he liked it.  However, he had never turned up.  We had only arranged it the night before, when he had come to watch Marcus, whilst I had taken Allan to church.  Even though I was concerned, I was not too worried, as Ken worked incredibly long shifts and when he fell asleep, he really did fall asleep; a bomb would struggle to waken him when he had gotten to that state.  The weekend had passed, Monday had passed and it was now Tuesday; moreover, it was Marcus’ 10^th birthday the following day, thus it was even odder that I had not heard from him.

 I decided to telephone his work and finally track him down.  To my horror, they had not heard from him since Thursday.  They had informed me that some colleagues had gone to his house, seen his car and knocked heavily on his door trying to get a reply, but to no avail.   Looking at the dozens of times I had tried to call him on my mobile phone, my heart began to beat very fast.  I suppose in my heart of hearts I knew something had happened.  That churning feeling you get in the pit of the stomach that just won’t go away!  After leaving my friend’s house, I came home to pick Marcus up from school.  Still on edge and not knowing what to do, I was very quiet.  “Are you OK, Mum”? Marcus had asked.

At this point, I knew that I had to go up to the house and check.  I searched for my spare keys and grabbed my mobile and dropped Marcus off at my Dad’s just across the road.  “Where are you going Mummy”? Marcus kept asking.

“I am just going to check on your Daddy love, don’t worry, I will be back soon”.

I tried to remain light hearted as to not worry him, but my heart felt far from light. 

I smoked two cigarettes during the five minute journey and eventually as dusk fell, I arrived at the house.  I could see his car; the house was in darkness.  My heart was beating faster and faster.  I nervously slipped my hands into my coat pocket and shakily brought out the keys, fumbling to get them into the lock.  As I walked into the hallway, the cold hit me.  It was cold outside, but it felt like ice inside, the mist was visible from my breath.   A shiny red, new children’s bike was propped up against the wall.  I shouted his name.  The kitchen door was closed, I intrepidly opened it and the light was on.  A sign, I thought!  I continued to shout as I climbed the stairs.  “Ken, Ken, don’t be daft now, where are you”?  I called out again with a tremble.  His bedroom door was slightly ajar, my frozen hand sneaked around the corner to turn on the light.  Then, in a glimpse of an eye, I caught sight of his body, laid on his side at the foot of the bed.  My hands began to visibly shake; my throat felt like it was ready to close up as my heart was now pounding so hard, I thought I was going to explode into a thousand pieces.  I did not get any closer; I knew he was dead and I was very frightened.  I backed out to the landing, phone in hand, I dialed 999.  The operator asked me to check his pulse – “He’s dead”, I cried.  “I don’t need to, I know he’s dead”.  I described the body and the wonderful calm lady on the other end of the phone slowly told me to go downstairs, sit down and wait for the emergency services.

 These people are truly amazing; they will never know how important it is for somebody to have another human voice to talk to at the end of the phone in such terrible times of crisis.  I ran out of the door and leaned on Ken’s car, quickly turned away as I threw my guts up at the side of the path.  “Please, please, please hurry”, I cried out loud.  I glanced to my right as the blue neon lights lit up the street.  Thank goodness, I was not on my own any more.  Two paramedics, a lady and a man rushed straight upstairs, whilst a police car pulled around the corner.  The police lady held my hand and we sat together on the sofa.  Within moments, the paramedics came down the stairs asking me which undertakers I wanted to use.  As I replied, I noticed, the bike again, my heart sank even lower.  “Why now, it’s our son’s birthday tomorrow, why now”?  I cried.  “How on earth, can I go home and tell my son that his Dad was dead”?  I kept asking the police lady.

Sitting my son down and telling him that his father had gone to heaven was indeed the worse thing that I have ever had to do and indeed I do believe it was the hardest thing that I will ever have to tell anybody in my life.  I do believe now that I can handle anything else that life ever threw at me again.  The eve of his birthday, I will never forget Marcus’ eyes.  The pain in his face was evident; he cried and cried and hugged me so tight.  We cried and held each other all night long. 

The love you feel for a husband is different from the love you have for an ex lover or the father of your child, a best friend, but it is not less meaningful.  Sadly, in today’s society, the love for a best friend does not have the same value and support as it does for romantic love.  Such loss of a best friend, through death is a permanent falling out, of which leaves a huge gaping hole in your life.  There are no socially accepted guidelines of how to cope.

  Even though I have two very close and extremely good friends, who I will never forget, I still felt very alone.  I wanted Mum, but she would not understand.  I so wanted my Mum, I needed her so much.  I did not know how to help Marcus work through his grief; I could not seem to help myself.  The good thing was and in hindsight I can see that it was the right thing to do, Marcus and I never stopped talking about our grief and the love we had for his Dad.  We cried together and shared precious memories. 

In the days leading up to the funeral, 22^nd December (Mum’s birthday), I felt shock, fear, anger and resentment all rolled in to one.  I felt helpless and emotionally numb.  After the funeral, the intervening days passed in a blur of unbearable pain, which I thought would never go away. 

I heard back from the post mortem that Ken had died from sudden heart failure.  I was told that he would have gone incredibly quickly, like the flick of a light switch.  Each evening I would try a glass of wine in the vain attempt that it would help me sleep.  Each night resulted in more pain, more flashbacks and horrendous nightmares, which eventually resulted in some form of restless opiated sleep.  The feeling of intense grief penetrated through to my very core and what hurts me the most, is that Ken will never see our son turning in to the wonderful, caring, handsome young man that he is turning in to today. 

My father and my step-father were now both in their eighties, Allan getting more and more confused.  Mum now in her own world; how was I going to cope?  I remember visiting my mum shortly after Ken’s death.  As soon as I saw her face sitting there in the lounge with the other residents, my entire world opened up.  I cried inconsolably and raced to my Mum, holding her so very tight, I told her that Ken had died.  We held each other and cried as other residents looked on at my sorry state.   Mum soon forgot though, I got tired of telling her repeatedly that Ken had died, as each time I told her, she was in shock and we would cry over and over again.  Mum did not deserve this pain.  In the end, when she asked how Ken was, I would smile and say he was fine.  She would smile back and say “Oh, that’s good”.  It did seem to ease the situation.

I hated seeing Mum in these homes.  I cried every time I left her.  She looked so alone, so vulnerable and frail.  As I turned my back on Mum to leave, I always felt a painful lump creeping into my throat, which would stay for the journey home.  It was always more painful when I visited alone.  Often, I would drive home with tears streaming down my face.  There had been many occasions when I arrived home when I would stop and think and tell myself that I didn’t actually remember driving home!

The day after the funeral, I had previously arranged to take Mum and Marcus to the Grand Theatre in Leeds to see A Christmas Carol.  I decided to still go and we turned up at the home shortly after tea to collect her.  I was driving Ken’s big old Rover, as Allan had borrowed my car and a few days previously had managed to right her off after coming too close to a lamppost.  I had not wanted to lend him it, but I did not feel able to take him to church that night.  Fortunately, Allan was perfectly unscathed by the whole affair. 

As I helped Mum into the car, her new posh faux fur coat bulking her up, she kept remarking on how big the car was.  “Is this your normal car, Vicki”? She kept asking.  Rolling his eyes back, Marcus whispered, “Here we go again”. 

“No Mum, its Ken’s”.  I replied.  After a dozen more times going around and around in circles, I told her that it was my car.  “Oh”, she said.  “I thought your car was red”, she carried on.

Marcus and I swapped smiles and away we went towards the City centre.

I love the Grand Theatre at Christmas time.  On entering the building and bustling through the crowds, we eventually found our box.  I had deliberately ordered a box, as I did not want Mum being knocked about and moreover, I did not know how she would react.  The building has such a continental feel to it, somewhat gothic and ecclesiastical in parts.  The year that we went in 2003, was the 125^th anniversary of its opening.  To see the Charles Dickens’s play at this time of year was to me, the very essence of true Christmas spirit, which I had hoped Mum and Marcus would share. 

Half time became a huge problem, as Marcus needed the toilet and wanted an ice-cream.  I dare not leave Mum on the free standing chair and huge step.  I asked a nice young man working there, if he would kindly keep an eye on her in our absence.  It was very nice of him and he seemed to make Mum smile.  It makes me laugh now, but at the time it was so frustrating, as Mum did not once look at the stage.  She had a constant smile on her face, but kept dreamily gazing up at the ceiling and at the audience across the way and down below.  I occasionally gently turned her head to towards to stage, but she would move it straight back again towards the audience.  It was an enjoyable evening, albeit very hard work, as Mum and Marcus were very tired.  Marcus was very tearful and walking back to the car park seemed to take an eternity, as I held tight onto Marcus’ hand and gently trying to encourage Mum to walk just that little bit faster.

As I collapsed with exhaustion into my bed that evening, I began to feel tremendous guilt that Ken had died on his own.  I did not want my Mum to die in the residential home and not have her loved ones around her.  These thoughts kept whirring around my head, making going to sleep mission impossible.  Why had I not checked on Ken earlier?  I guess I was worried what I might have found.  I began regretting leaving him, even though it had been the right thing to do at the time.

  Living with someone with depression is almost as bad as being depressed your self.  I found it so difficult to remain my optimistic self.  Ken had cared for his elderly Mum at home, as she had been living with dementia too.  Shortly after her passing away, we had bought a house together and I fell pregnant.  This was probably too much for Ken and his depression deteriorated.  Unfortunately, Ken would not seek medical help and refused to open up and talk, even to me, thus it was a constant battle for him.  In a way, I wanted to stay with him, why wouldn’t I, I loved him and we had a child together.  However, on the other hand, it was such an arduous situation, where my health and whole well being was seriously beginning to suffer.    I was more or less a single parent anyway, as if Ken was not working, he was sleeping.

All these factors were beginning to influence the need for bringing Mum home.  I did not want her to feel alone, in addition, in a selfish kind of way, I did not want to feel alone.  I wanted my Mum, with Marcus and I, where she belonged.  I decided to wait until after Christmas and then discuss the matter with Mum’s Social Worker.

 Christmas was horrendous; I tried to keep it as festive as possible for Marcus, but it was such hard work.  My sister, my niece and my Dad came for Christmas dinner.  In hindsight, they should have bloody well taken me out!  I served up an extra plate to carry up to Allan, who was becoming more and more isolated.  Neither my sister nor my dad would have anything to do with Allan, which put me in a terrible position.  I felt like I was in the middle, acting out a balancing act in a desperate attempt to hold everything and everyone together.

A couple of days after Christmas, the home telephoned informing me that Mum had suffered another seizure, the Doctor was there and Mum was not coming round nor responding in any way.  Grabbing my coat and Marcus’ hand, I flew out of the door and arrived at the home within half an hour.  Mum looked shocking; her eyes were rolled towards the back of her head.  She lay there, propped up with many crisp white pillows and wrapped up warm in a sheet and a fluffed up pinky coloured quilt.  Oh my, she had deteriorated; her false teeth were out, her hollow cheeks now sank back even further, her chin stuck out in a caricaturist way.  The skin on her arms, I had noticed had become almost transparent.  She was not coming around from this one, I could see that.  “Oh please Mum, not now”, I cried.  “Stay with me, I could not cope if anything happened to you”. 

The following day, Mum’s eyes had stopped rolling, but she was unable to move. 

Mum was now doubly incontinent and was not able to feed her self.  The staff was monitoring how much she drank, by using a syringe and counting up the mils.   The Doctor came out to see me and explained that he could send Mum to hospital for a brain scan and further tests; however, he did not think that it would be worth it for Mum.  Even though, I desperately wanted to know exactly what had happened, I did agree with the Doctor.  It was not in Mum’s best interest to be poked about in a noisy hospital; plus she would be more likely to pick up an infection whilst in there.  Health professionals could not give me a prognosis; however, I was told it could be a matter of days or weeks before the end of Mum’s battle with dementia.  I cried to Mum every day, begging her to hold on as I was not ready to lose her.  Selfish I know!

By February, Mum’s condition had not improved, although it had not got any worse either and she had lasted longer than all of what the professionals had said.  Mum was not talking now; she would communicate with facial expressions, with the occasional noise arising.  The home was no longer able to cope with Mum, as she needed to be in a home equipped for EMI patients with in-house nursing staff available.  On St. Valentine’s day, Mum moved to a home in Hunslet; it was such a shame that she did not know that she was back in Leeds 10.

  Weeks went by and Mum was either laid on her side in her bed or sitting looking very uncomfortable in a bucket chair in the corner of the lounge area.  Always slumped to one side, mouth open and eyes shut, on every single visit.  I did not think it was possible for Mum to become any thinner, but she did.  Allan was too poorly to visit her; however, my Dad continued to give her some stimulation.  I began visiting at meal times so that I could take over feeding her, in the attempt to make sure that she was getting some food.  If I was not there, Dad would be, reminiscing about their days on their bikes; singing Mum’s favourite songs and gently stroking her face or holding her hand.  Mum suffered another seizure and ended up in Seacroft hospital.  It is here that I noticed the nurses taking more time when feeding Mum and she seemed to slightly improve.  This was it – I contacted Social Services and got the ball rolling – Mum was coming to live with me.

  I had several meetings with Social Workers, District Nurses and Doctors and eventually they agreed to arrange for Mum to come home.  My home went in to complete chaos, as a hospital bed, air pressure flow mattress were delivered, hoists attached to the ceiling, etc, etc.  I don’t know why, down to red tape I suppose, but it took months to get Mum home.  I had been doing bits of supply teaching here and there since graduating, but due to all the other personal problems in my life, I did not have a full time job.  I would stay at home and care for my Mum and be there for my son; that is what I needed to do. 

My living room had now become Mum’s bedroom, but I still managed to keep the sofa and TV in there.  It was a small space, but nevertheless, it was cosy and it was ours.

With some money left from Ken, I took Marcus to California for 17 days before Mum was due home.  I thought of it as a final fling!  Marcus was heavily into the WWE wrestling at the time and I had bought 2 tickets for Wrestlemania 21 in Hollywood.  I wrapped the tickets in tissue and placed them in several different size boxes and gave them to him on his 11^th birthday.  I will never forget his face on opening them!  Pure joy, which is all I can do to describe his little face.  He burst into tears as he hugged me that tight, he hurt me.

We traveled to LAX and stayed in North Hollywood, with my friend Steve.  Steve is a very gentle person, with a very easy going personality, thus a perfect companion for a long trip.  Tall, dark and slim with his shaggy hair and baggy tee’s, Steve looked like the typical groupie.  He does actually play the bass in his band “Leodis”; he looks quite cool with his beanie hats and his big bass guitar. 

After the “big event”, days sightseeing and flying around roller coasters, we drove to Anaheim for 3 days and visited Disneyland and Knotts Berry Farm.  Our holiday continued with a long drive up the pacific highway coastal road, (Highway 1) with its breathtaking ocean views on the left and stunning mountain ranges to the right, staying over at Ragged Point, the half way point between Los Angeles and San Francisco.  Ragged Point is on the Big Sur, not far from San Simeon and its famous Hearst Castle.

  The Ragged Point Hotel is a serene place, positioned on the cliff top hosting floor to ceiling windows, offering a panoramic ocean view.  The motel style rooms were pretty basic, but the environment was pure magic.  We careered off on a wilderness hiking trail; however, we soon retreated back to the comfort of the hotel restaurant on site of “bear warning signs”.  I am afraid; we are city people through and through!  The following day, we were onward bound for San Francisco, with its flamboyant style, thriving art scene, its eclectic mix of Victoria and modern architecture and of course its famous landmarks.  Steve fitted in very well here!   

We visited Alcatraz, which had previously housed notorious inmates, such as Al Capone, George “Machine Gun” Kelly and Robert Stroud (The Birdman of Alcatraz), we walked the Golden Gate Bridge, twice and we jumped on and off several cable cars, pretending that we were in the films.  We witnessed the eccentric, lively and jaw dropping urban gay village of Castro, we dined in Chinatown and saw trendy teenagers and old hippies in the Ashbury/Haight district., where Steve bought a new bass.

  We spent the nights at Fisherman’s Wharf, Pier 39, watching the sea lions barking loudly, as they each fought to stay on their piece of floating wood.  Well we did have an eleven year old with us!  It was a wonderful holiday, of which I will never forget.  It is here that I experienced my first tattoo and realised the crucial importance of good brakes when driving up the famous hills, of which I had seen many times on television.  Lombard Street is indeed a street of which I will never forget!  I was gobsmacked when Steve learnt to drive on returning home.  If only we could have shared the driving!

The holiday did me the world of good; I came home feeling refreshed and excited for my new role as full time carer and full time mother.  I was also very happy to have spent that time with Marcus.  Ken’s dream was to travel the world with his son and introduce him to new things, people and cultures.   Ken had traveled immensely in his younger days, as he was a photographer on cruise ships, sailing to New Orleans, the Caribbean and many other wonderful places.  I indeed had the travel bug myself.  I would rather not go out for a year, but then go on a big adventure with my son.

 We have traveled to the East and West coast of America and I have driven as far south as Tampa, Florida.  I even had my gallbladder removed in Las Vegas!  Now that is another story.  I have taken Marcus to the Greek Islands, Spain and the Canary Islands.  We have scoured on foot the vast city of Toronto and walked across the bridge to Buffalo, New York State, over the Niagara Falls.  We climbed the Empire State and sang gospel hymns in a church in Harlem. We experienced the hair raising see through lift whilst ascending to the top of the CN Tower and hopefully we have yet many more adventures to undertake.  India and the United Arab Emirates are next on my list for as and when funds permit.  Mum would have loved to travel such distances.  She toured Europe many times, but back in Mum’s earlier days, the United States and beyond was just too far away for a Hunslet lass.

After several more meetings with professionals, a care company was found and it was arranged for two carers to come three times daily to help me with Mum’s personal care.  On the first day of Marcus starting high school, Mum finally came home.  I managed somehow to get Allan down to my house to see her.  He held her hand and they both wept.  Sadly, that was the last time Allan and Mum saw each other, as Allan’s own health declined even further.  Allan was later diagnosed with Picks disease and he too, began to receive carers from the same company.  However inappropriately Allan began to behave, he could still tell you to the pence how much money he had in his wallet and even in his bank.  Although, his behaviour was becoming increasingly deluded and our Wednesday trips eventually had to stop, as he struggled to walk and became incontinent. 

Mum had plateaued and I was not sure how long I actually would have with her.  I bought her the best possible foods and blended them and spent literally, hours feeding her.  Maintaining hydration was a problem, as my room was very warm and she quickly overheated.  I noticed when Mum became too hot; she would experience yet another seizure.  However, these had now become quite mild, with the medication that she was on.  Marcus seemed happy that his Grandma was home, although he did say he felt a little scared, which is quite understandable after what he had been through.  I always made sure that I was the first person down on a morning to check in on Mum. 

On the first night of her being here, I gave her a kiss and said goodnight.  To my utter astonishment, I heard a little voice emanating from the hospital bed, “Goodnight”.  Tears rolled down my face in amazement.  How did she do that?  I tried to get her to say it again, but she didn’t.  However, I felt content and slept better than I had done in a long time. 

*

The decision to bring Mum home was not such a tough decision, which I can imagine it is for many people.  I had had experiences that had pushed me in that direction.  Moreover, I was lucky enough to be in that position where I could care for her at home.  When Mum was displaying aggressive behaviour, I do not think it would have been possible to care for her at home, as she would have been a danger to her self and indeed, my son.  The timing was right.  I had felt regret that Ken had passed away on his own and I certainly was not allowing that to happen to Mum.  Mum, Ken and Marcus were the most precious things in my life and I was going to do everything I could to keep Mum and Marcus safe. 

 If you are faced with this decision, it will be one of the biggest decisions you will have to make.  Talk it through with family and friends and ask yourself if they will be there for you.  Do you have a good network of people around to support you?    To some people, caring for their loves ones is the most naturalist thing on earth.  However, to others, it is alien; it will affect you, your family, your friends, your social life, your career, in fact your whole world will be turned upside down.  It is not a decision to be taken lightly and it is not for everyone.  You are tied to the house and spontaneity becomes a thing of the distant past.  However, if I could turn back the clock, would I still have brought Mum home?  One hundred percent, most definitely, yes!