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?