Chapter 5 - Mum's move in to residential care.

Mum began to catch the access bus on a weekly basis to Aire Court day centre, where she would be continuously monitored and assessed.  Moreover, this gave Allan a much needed break.  It was getting very tough for Allan now, as he tried in vain desperately to carry on as normal.  I did all that I could to help, but it was so hard trying to juggle being a single mum and a full time student as it was.  Mum sometimes turned up at my house in the middle of the night after a fall out with Allan and I would take her up the stairs to sleep in my bed, as I would lie awake on the sofa with Storm.  These events were getting more and more frequent and I realised that Mum had become incontinent through the night.   Thus, buying a new mattress and a protector for when Mum stayed was a must.   

I felt so sorry for my dear step-father; it must have been so difficult.  He had health problems himself and for a man of 80, to be quite frank, he was doing bloody marvelous.  However, as Mum was becoming more and more aggressive towards Allan, I was worried that one of them may strike out, if indeed this had not already happened.

It was late 2001, one Wednesday morning, when I walked up the small hill to Mum’s to wave her off on the access bus.  Wednesday was my study day so I did not have to go into uni.  She seemed unsettled, confused and distant and did not wave to me.  I went in the house to have a coffee with Allan.  He was inconsolable.  His glasses were placed on the kitchen table, as he was wiping his puffy pale blue eyes with a huge white handkerchief.   He blew his nose so loud, I was reminded of Concorde.  “What’s happened Allan”?

He looked at me with laser intensity.  “I cannot take it anymore, I don’t know what to do, she hates me and I don’t know why?  All I have done is love her”. 

“Oh, Allan”, I sighed, hugging him tightly.  I had been through all this hate.  It was me who was the target at the onset.  I tried to reassure Allan that she did not hate him, it was the illness talking not Mum.   Mum and Allan had only been married twelve years.   They married when I was eighteen and Mum had been so happy to find someone.  Someone to share things with, somebody to make her happy.   Allan was without a doubt, the most chivalrous man I had ever met.  Why was this happening now?  It was so very unfair. 

 I had been so happy when Mum met Allan, as I thought that I would not have to worry about her anymore.  I waited for Allan to get dressed and compose himself before we went to the car for our Wednesday trip to the Garforth garden centre.  I had started taking Allan out on a Wednesday, albeit just for a few hours, as it was time for him to talk and to get out of the house.  He was going stir crazy cooped up indoors all of the time.  We enjoyed the garden centre and our little strolls around its perimeter.  Allan was green fingered and would spend ages looking at seeds and would talk about fruit trees for what seemed like an eternity.  However, I would do anything to hear him twitter on about them now.  I would often desert him after a while and head over to the pet shop inside the same building.  Eventually, we would meet up and saunter into the adjoining café for coffee and scones.  We had the same every week; scone with strawberry jam and fresh clotted cream for over three years! 

If I can remember rightly, Mum usually came home from the day centre at about 4 o’clock.  I would normally leave Allan at 2.30pm to pick Marcus up from school and I would later walk up to see them after tea.  Marcus and I strolled the short distance to Mum’s and let ourselves in, Marcus running past me to see his Grandma and take her the picture he had done for her at school that day.  “Where’s Grandma”?  I heard him say.

“She’s not home yet lad”, Allan replied in an anxious tone.

“Where’s Mum”?  I repeated quite concerning.

Allan began to cry.  “I don’t know what has happened, but she is not coming home…..I don’t know where she is, but a man came and took some of her clothes and things”, he sobbed profusely, blowing his red nose after each sentence.

“What?  What do you mean, she is not coming home”?  “What man”? “What are you talking about Allan”?  My voice was shaking.   Marcus was now crying and I was fighting back the tears trying to get a grip so I could sort it all out.  I shakily went through the contacts on my phone and rang the day centre to find out what had happened.  I was told that Mum was frightened to go home and had declared that her husband was abusing her.  She had therefore, gone into emergency respite and was in a residential home in Armley.  I put the phone down totally numb struck.  What do they mean, Allan is abusing her?  That is rubbish.  That is her illness.  How dare they take her away from us?

 It took me 4 years to get her home living with me.  Allan only managed to see her on two more occasions due to his ill health and own mental decline.

Later on that evening, I drove the seven miles or so to the residential home where Mum had been taken to earlier on that day.  I was amazed that nobody had called to inform me of this drastic decision.  I kept thinking to myself, why was I not informed?  Why was I not consulted with?  Unfortunately, due to the stress and anxiety, I was not strong enough to ask these questions at the time.   As I pulled into the car park, my heart was pounding like a drum.  How was Mum going to react?  How could I face her?  She would think that we have deserted her.  “Oh, Mum”, I kept sighing to myself out loud.  I intrepidly walked to the main glass doors, paused whilst I took a deep breath and entered with significant unease.  I approached a lady in a blue uniform and asked her where my Mum was.

  I was asked to wait, whilst she shuffled off in to a side room.  I looked around the lounge area of where I was standing.  High backed chairs lined the walls; the odd resident propped up with cushions adorned the odd chair here and there.  There was a distinct smell of urine and cleaning products rolled into one.  A lady cried out, “I want to go home”.  Nobody replied.  I continued to stand there transfixed on the door of which the lady had entered.  It was not a bad room.  I suppose it was the kind of room I would have imagined an “old people’s” home to look like.  Large flowery drapes dressed the large windows, a piano in one corner, a TV in the other.  Spider plants adorned the antique style coffee tables whilst old black and white framed prints of Leeds decorated the walls. 

After what seemed like an eternity, three ladies came out and approached me.  There was one woman who seemed to be the Manager, as she was dressed in normal clothing (no uniform); she asked me if I would like a cup of tea.  I did not want a bloody cup of dam tea, you stupid woman, I want to know what’s happened to my Mum? I thought.    “No, thank you”, I replied.

I began to ramble on about what had happened that day.  They seemed concerned that I had no idea that she was going to stay there.  The three ladies walked me down a musty smelling corridor, paused and stopped outside a ground floor room on the left.  The door was slightly ajar.  I cautiously opened the door and took a glimpse of Mum curled up in the fetus position on a single bed shoved up tight against the wall.  I looked around at the bleak oppressive room and then rushed up to Mum.  I placed my hand on her shoulders and whispered gently, “Mum, Mum, it’s me”.  Her eyes opened, her face was damp where she had been crying.  I asked the ladies to leave us alone, as I climbed onto the bed and cuddled Mum’s shrinking frame.

 Mum and I laid there for over an hour.  Her hair and pillow were warm and moist from the tears that were rolling steadily down my face.   It was dark, the main light was on, but it gave out little light.  The green crepe curtains struggled to close like the repulsion of the same magnetic force.  The wall was magnolia with the odd nail sticking out where a previous resident had probably hung their pictures and personal nik naks.  There was a single brown wardrobe at the foot of the bed standing beside a small matching chest of drawers.  Opposite the bed, the sink unit stood, clean, almost clinical looking with a big mirror hanging above.   A small black TV unit with a bent metal coat hanger attached as an aerial, stood precariously on the top of the drawers.  Neither Mum nor I said much that night.  I left her asleep, turned out the light, gave her a kiss and gently closed the door.

The following morning, I called to see Allan to try and reassure him that everything would be OK and that we would eventually get Mum home.  He was very quiet and quite frankly he did not want to talk; I left him alone and continued with my phone calls in an attempt to get Mum back.  A Social Worker returned my call later in the day informing me that it was no longer safe for Mum and Allan to be left alone.  Even though I was very angry, I suppose I did have to agree.  I could not be there all of the time – I suppose I had not realised how serious and in fact how dangerous the situation had become.

  Later that evening, Marcus and I went to see Mum.  A lovely elderly white dog greeted us on our arrival.  “That will make Grandma happy”, Marcus said. 

“I bet she will”, I replied, bending down to stroke the wire haired matted fur on her back.   The staff were hustling and bustling about their business like busy little bees.  Mum was sitting in one of those high back chairs, like a Shackleton in design.  She beamed as she caught a glimpse of her grandson.  “My lad and lass have come for me”, she said proudly nudging the gentleman in the adjacent chair, almost knocking his tea cup out of his already shaking hand.

“Hi Mum”, I said in a joyous manner, trying not to upset her.

“Are we going home now”, she snapped.

“Not yet Mum, we need to make sure that you are feeling better before you go home”, I said in a calm gentle manner.  A care worker made us a nice cup of tea and brought Marcus some juice as we sat and chatted.  Mum asked over and over again when she was going home and I continued to tell her that we needed to make sure that she felt better and was stronger, therefore she needed to eat and drink well.  Her eyes were as hard as granite when I left.  I will never really be able to put in words how bad and guilty I felt leaving her there.  I also tried over and over again to explain to Marcus why his Grandma no longer lived with his Granddad and why she had become how she had.  Marcus was very close to his Grandma, it must have been so hard for him seeing her deteriorate so rapidly in such a way.

  There were many issues at the home where Mum was staying.  Mum insisted that the woman in the room opposite her was an “evil bitch” who tried to hit her.  This really was not how Mum would normally have spoken, consequently Marcus laughed nervously as she shouted it out across the corridor.  

Sitting at the old wooden science desks at uni, knees bent uncomfortably, playing with my hair and really not taking anything in, I felt my phone vibrating in my jeans pocket.   I glanced at the number, oh my God, I thought, it’s the residential home.  I sheepishly held up my hand in an apologetic way and asked if I could go outside to take a call.  My tutor nodded in a curious manner.   Physics was not my strong point, I know I had to concentrate and be in that lesson.  I was aware that we were studying “moments”, but please do not ask me to work any out!  I had missed the call, thus I pressed the call back button almost immediately.  The Manager answered the phone and seemed relieved to hear my voice.  Mum had waited until a visitor had left the building, escaped and was running down Tong Road.  Tong Road is situated in Armley, being a main road into the centre of Leeds, you can imagine how busy it is. They had been unsuccessful in their attempt to bring her back and they didn’t have the time or staff to keep following Mum around.  I quickly made my apologies to my class, grabbed my old leather brown weather beaten bag (student bag as I called it), raced across campus and launched into my car.

 I drove as fast as my little red Nissan micra would allow straight to Tong Road, frantically searching for a little old lady in the road.  Then as quick as a flash I caught her mutinously running (and I mean running) on the footpath towards the local Gurdwara Temple in Armley.  I turned my indicator to the left as the brakes screeched and my little micra came to a sudden and abrupt halt.  I honked and flew open the passenger door.  Mum laughed and continued on her journey to oblivion.  Tearing the keys from the ignition and grabbing my student bag, I abandoned the car to chase after Mum.  As I caught up, I linked into her arm and slowed her down.  “Where are you going Mum”?  I laughed breathlessly. 

“I am going for a walk; nobody can stop me going for a walk.  I will walk when I want and if I want to walk I will”, she said defiantly. 

“But everybody is worried about you Mum, I have been worried about you”, I retorted in a more serious manner.  This serious manner seemed to agitate Mum; therefore, I tried to lighten the situation.  “Mum, you have been naughty escaping like that”, I laughed again.

“I know!  They can’t catch me”, Mum went on.

We both laughed at Mum’s cheeky little adventure.  However, on a more serious note this could have been far worse.  What if I had not have found her?  She would have been totally lost!  What if she had been knocked down by a car?  It did not bear thinking about.   “Come on Mum, get in the car and when we get back, you can show me how you escaped”, I urged.

Back at the home, they were not happy.  Looking back now it seems laughable, but boy was the Manager cross!  Secretly, I was quite proud of Mum and impressed at her running and cognitive abilities.  Give me five Mum!

Mum stayed at the home over the Christmas period and apart from the odd fight with the “evil bitch” across the corridor, things had seemed to settle down a little.  Well at least I thought!   It was early February, when Marcus and I went to visit early tea time.  Marcus had produced a lovely painting, showing both of them flying on Concorde and he was eager to give it to her.  Marcus was incredible at drawing Concorde, in spite of his age.  The big yellow smiley sun in the top right hand corner of the painting brought a wonderful warm fuzzy feeling that filled me with contentment, even if only for a short while.  Our white furry friend was there to greet us on entering.  Marcus gave her a pat and raced along the corridor shouting “Grandma” at the top of his voice, waving his painting as he skipped along.

“Shhh”, I tried to whisper.

He peered in to Grandma’s room and came running back.  “She is not there, Mummy, she must be in the lounge”.  We strolled hand in hand to the lounge, peering round for Mum.  “Where is Mum”? I asked a care worker. 

“Your Mum is not with us any more”, she replied.

I froze to the spot, unable to breath.  I was overcome with shock.  The care worker must have immediately spotted the misunderstanding as she quickly added, “She has been moved to another residential home, just one moment, I will get somebody to come and talk to you”.

I collapsed with relief and found myself in one of the high back chairs.  The Manager came over in a somewhat stern fashion.  I felt as though I was going to be told off.  “Social Services have found your Mum another place to stay in Dewsbury.  They came for her this afternoon.  I am sorry, but we were just not able to cope with your Mum anymore.  She was starting arguments and continued to bully the lady over the corridor from her.  We just do not have the staff to be able to cope with that kind of inappropriate behaviour”.  Now I know how Mum felt when she was ordered to my school due to my teenage misdemeanors!  

I was now bubbling over with rage.  I venomously spat, “And you did not feel the need to tell me this earlier”.  “I should have been with her, how dare you not inform me”.  I was visibly shaking at this point; I could hear Marcus sobbing at my side.  I was in a rage. 

This was the second time I had gone to see Mum and she had been moved to a place I had no idea about.   I could feel my heart throbbing inside me; I held my chest as it felt like it would burst open with intense ferocity.  Wiping the sweat from my forehead, I demanded they write down the name and address of this so called new home immediately. 

Dragging Marcus beside me, I marched to Mum’s old room checking in all the drawers to ensure Mum had got everything.  However, this was a joke, as nothing is sacred in any residential setting.  Mum had lost various amounts of clothes and two rings had already walked.  As Marcus was so upset, I was unable to get to the new home that night.  I did not have a clue where it was as I did not know Dewsbury very well at all.  It was a long, long night as I struggled for hours to get some sleep.  Marcus on the other hand snored like a baby and did not stir all night.

The following morning, brought even more anger to my already stressed and anxious mind.  I was unable to comprehend what had happened the evening before.  Had I dreamt it?  Unfortunately not, as Marcus awoke asking if he could miss a day of school to visit his Grandma in her new house.  “I don’t think so, little man”, I told him.  “You can visit Grandma at the weekend so make sure you save that lovely painting for her.  It will look lovely on her new wall”, I went on.  Another physics day missed (no wonder I still do not understand “moments”), as I traveled to Dewsbury to find Mum’s new home. 

Allan was distraught, but unable to do anything about it; he felt helpless, useless and sunk into his own depression.  Alan was twelve years Mum’s senior and had heart disease – it was quite apparent that this was all getting too much for him.  The only thing he seemed to enjoy was our weekly outing to the garden centre.  It was on these occasions when I would tell Allan of the funny things that Mum had done and the funny things that she had said in order to keep things on a lighter note and somehow try to lighten his day.   Fortunately, I followed the map well and found the home relatively quickly after heading towards Huddersfield out of Dewsbury town centre.

 It was a grand old building – reminded me of those old hotels on the seafront at Blackpool.  Beautiful landscaped gardens encompassed the structure, with the odd bench dotted here and there for residents to sit out in admiration of the view.  I walked down the graveled path and potted plants to the huge wooden entranceway.  A huge bell adorned the wall adjacent to the door.  As I leaned towards the bell, the door suddenly opened as a family was on their way out.  The gentleman held the door for me as I nervously walked in.  My first opinion was that it did not look as nice on the inside as it did on the outside, but nevertheless, it did not look bad.  There was no smell of urine so that must be good, or so I thought.

  A man came out of a small side office to greet me.  He was an odd looking man, dressed somewhat casually with wild windswept hair.  I referred him to our earlier telephone conversation.  I don’t know why, but I felt very anxious, nervous and a little upset.  He led me through some heavy glass double doors and up a very steep staircase to a further set of similar doors, then through to a very long dark dismal corridor.  I had seen Derek Achora in similar surroundings!  He pointed out a toilet and a kitchen to the left and then to the right at the very end of the corridor was Mum’s room.  “Your Mum is not in her room, she is downstairs in the main living area, but I thought I would show you around so you can get your bearings”, he instructed.

The room was surprisingly nice.  It was quaint with pink flowery curtains (right up Mum’s street), matching bedspread and cushion.  The bed was under the window, which was south facing and gave a beautiful view of the gardens.  I noticed a chest of drawers dressed with a glass vase filled to the brim with glorious yellow daffodils.  Then in a shocking fleeting second, I noticed another single bed at the other side of the room.  He must of noticed my confusion, as he immediately muttered, “Oh, that is Ada (not her real name), she is your Mum’s room mate, so to speak”. 

“Oh my God, are these people absolutely stark raving bonkers”?  I questioned to myself.  “My Mum was moved here because she could not get on well with other residents in her previous home due to her illness, so why is she sharing a room with another resident here”?  I asked in disbelief.  He shrugged his shoulders as he told me that this was the only bed available at such short notice and he assured me that the staff would keep a close eye on Mum and not to worry.  I was pleased to see, some of Mum’s pictures had been placed on the windowsill and that her clothes had managed to make it there with her. 

I continued my personalised tour of the home and eventually made it back down the hell bending stairs to Mum.  Mum was so pleased to see me.  “I want to go home”, she began.  “I know Mum, I know”, I gave her a huge hug squeezing her that tight; I had to let go quick, forgetting how frail she had become.  Mum spent eight months at this God forsaken place.  I could tell you many stories that would shock you to the core.  However, it would take that long, it would need another book.  To give you an idea of how bad it was, I once walked in and told the Manager I had a camera in my bag, I didn’t, but that was not the point.  In a way I wanted to frighten him.  It worked as he threw me out.  I fought for seven months to get Mum out of there and eventually my letters, time and energy paid off. 

The only thing we missed about the place was our weekly walk to the local park.  Mum enjoyed watching Marcus and Storm running around and she equally enjoyed watching the little Asian children playing on the playground.  She would beam at their little faces and always ask their name and how old they were.  Often we would go to the little café on site.  It was during these visits when I noticed how hard it had become for Mum to eat.  I would chop her food up and I would have to remind her to eat again after each mouthful. 

The memory of the last visit we made to the café will remain with me forever as I cringe to actually tell you what happened.  The café was brimming with people; children were eating ice creams outside the door.  There were other dogs in there and tables and chairs had been pushed together so bigger families could eat together.  Mum was fighting with her sandwich as Marcus’s elbow knocked over his drink and coca cola spilled everywhere.  Storm jumped up from his slumber under the table and suddenly noticed a whippet in the corner showing his teeth in a ‘don’t dare come near me’ manner.  Whoosh, he was off, I jumped up as quick as a jack in a box to grab his leash.   I managed to do so just before he got face to face with the now submissive, terrified looking dog.  I can understand how he felt.  It must be horrifying to see a huge white wolf like German shepherd heading towards you with the hump because you have just given him a dirty look!  Even though I saved the whippet from its early demise, I did not save my coffee cup, nor did I save the pushchair at the side of me laden down with bags.  Marcus was screaming, Mum was laughing, Storm was barking whilst I just wanted the ground to open up and swallow me whole.  I have often wondered if there is a photograph of us stuck to the wall of that café, with a “wanted” sign above our heads.   I believe my Dad once took Mum in to that café some weeks after the lively event, fortunately, they were not arrested!

Well you will be pleased to know that despite earlier traumas, I was allowed to view and choose, within limits of course, Mum’s new home.  It also helped that my sister came with me on this occasion, thus, I did not have to make the decision on my own.  We quickly found a lovely place in Gildersome.  It was back in the Leeds area and the staff all seemed very friendly.  It was clean, fresh and bright.  It housed a big conservatory, which the residents seemed to enjoy.  The rooms were small, but nicely decorated and the furniture looked new (which was a first).  By now, Mum did not have much to pack and what she did have wasn’t hers.

 I ventured to the White Rose Shopping Centre on a mission to buy new clothes, shoes, slippers, toiletries and ornaments for her new home.  I was thrilled and excited at the prospect of this new home.  I had a good feeling about it and was happy that it had been my choice.

  It was the end of October, when Mum’s social worker called to say she would meet me at Dewsbury so we could all go together.  I decided to follow them in my own car, so I could stay longer with Mum and not have to rely on her to take me back.  Moreover, I did not want to go back there at all costs. 

On arrival, staff came out to greet us with happy smiling faces and smart clean uniforms.  Mum got a lovely warm welcome and even though she was very confused, she managed a smile back.  She seemed to like her new room and quickly settled in.  It was here that Mum found a friend, which made life much easier (well for me anyway).  He was a sweet natured small gentleman, looked a little younger than Mum, but had wonderful silvery hair that would shine as he turned away from the light.  They would often sit side by side, smiling and nodding at each other, but not really saying a word.  Mum would tell me how lovely he was on every visit.

    Christmas came and went and even though Mum seemed to be getting more and more confused, she did seem happier.  She had stopped asking to go home and seemed calmer.  Mum had no aggression in her anymore; her nature was back as it was before the illness.  She would laugh, smile and dance, although she was finding it harder and harder to communicate and her fits were becoming more frequent. 

We had several emergency visits to the Leeds General Infirmary!  Mum was now on a much higher dose of Epilin in the hope to control the seizures; she was in fact quite frightening to witness.  Mum continued to loose weight as she would now only eat bird size portions.  However, the staff and I did constantly encourage her to eat in spite of it being such hard work.

 Although it broke my heart to see mum’s mental health deteriorating even further down the dementia road, it was paradoxical that mum seemed chirpier in herself.  The rosy cheeks did come back, albeit more sunken, but nevertheless they were there.  I was a little happier. 

I had finished my degree and was actively looking for employment.  Marcus and I had enjoyed a holiday to Florida with my uni friends. Allan seemed to have come to terms with being on his own, as he had gone back to his gardening and began baking his own bread again, although he often forgot about the bread and it would stand there that long and became so hard, it would have made a wonderful doorstop.  However, seemingly we were on an even keel.

*

When choosing a residential/nursing home with your loved one it is so important to feel one hundred per cent happy with your choice.  If you have any niggling doubts, listen to them, as those negative feelings will problem be right.  My advice to you would be to visit the home several times, ensuring that you go at different times of the day.  Early morning when breakfast is being served is a real eye opener!  Watch to see how the staff interacts with the residents.  Is it a happy atmosphere?  Are all the residents dressed?   Check out resident’s toilets, this is another key area, which will tell you if it is a good home or not.  Furthermore, wander in to the laundry room.  Are all the residents clothing in named baskets, or are they all jumbled up?  Is the staff happy at their work?  Another essential time to visit is after tea time.  Are the residents put to bed too early?  Are they allowed to stay in the lounge areas and watch television?  Do they have outside visitors, such as mobile hairdressers?  Is there an entertainment program?  What is the food like and is there a choice?  Will they be able to practice their religion?  Will they be able to maintain their hobbies?  These are all fundamental questions; I can not reiterate that enough. 

There is one point that I fail to understand and that is why in the majority of all residential care homes are all the chairs lined in circles, backs up against the wall.  I would truly hate that.  What if you didn’t want to look at someone? What if you did not want anyone looking at you?  Especially for those residents that are unable to communicate and express what they want.  I am afraid it is a case of you will sit there and that is that!  Even though I suppose care homes do not intentionally mean to, they do certainly depersonalise their residents.  A lot of research and inspections need to be carried out in this area to improve these settings, sooner rather than later.  A further bug bear of mine is “carers”.  Why are carers not classed as “professionals”?  There seems to be a real lack of training and skills in this field of work.  Many a person can walk off the street and providing they do not have a criminal record, can get a job working as a “carer”.  If carers were expected to have qualifications and continued training, monitoring and assessments and their pay reflected this, then the industry would be vastly improved.   Care work is poorly paid, which in my opinion is an outrage.  How can we expect the best out of people when they are paid peanuts.  Moreover, it is a bloody hard job, which I can assure you takes its toll out of your back.  It does not matter how many “lifting and handling” courses a person attends – a carer always ends up with back pain at some point during their job.  Do not get me wrong, there are many wonderful carers out there that love their job and would not swap it for the World.  However, due to its very nature, there are those that just need a job and due to lack of qualifications and/or experience, care work is the only option available to them.  Thus, it would be advisable to try and find out what the staff turnaround is when looking for a residential home.  If there is a high staff turnaround….walk away.