My mother

Stroke

The following story discusses what happened to one person after her mother had a stroke.

There are two main types of stroke:

An ischaemic stroke is the more common cause of stroke and occurs when a blood clot blocks an artery serving the brain.

A haemorrhagic stroke is caused when a blood vessel in or around the brain bursts causing a bleed or haemorrhage.

The symptoms of a stroke can include paralysis on one side of the body , slurred speech or difficulty finding words or understanding speech, blurred vision or loss of vision, dizziness, confusion, unsteadiness, or severe headache. Depending on which part of the brain is affected and how much damage is caused these symptoms may be minor and short-lived or may be more severe and permanent. Around 130,000 people in the UK have a first stroke every year, stroke can affect people of any age.

My mother

It was July 1992, and a boiling hot day. My mother, aged 68, was due to arrive at my house at 8am to look after my children aged 11 and 9 so I could go to work. My sister was due to take over from her at 9.30 am. She had her library books ready to take back, she had spent the previous evening playing bridge, and she was looking forward to continuing teaching my children how to knit.

The doorbell rang. Some people walking a dog brought my mother inside the house. They had found her seemingly faint at the front gate. After sitting her in a chair I made her cup of tea, she didn't move or speak. I had no idea what was wrong with her but quickly called my sister and husband to come. We called an ambulance which arrived quickly and my mother was taken to A&E.
She was fully conscious and smiling at us.

Stroke

At the hospital they told us they were keeping her in for tests. When my sister and I arrived at the hospital the next day my mother was sitting up in bed, smiling brightly, with a drip attached to her arm. She didn't speak to us, just kept smiling. We were told she's had a stroke, but she didn't look too bad. Every day we imagined she was getting better.

What was a stroke? I had to look the word up in a dictionary and read about it at the library - I had never heard of it before. A nurse told us that the drip was to give my mother fluids because she couldn't swallow and that if she didn't start to swallow by the end of the week she could die. We didn't take that too seriously, she looked all right to us.

There seemed to be three wards in all, and the nurses were literally rushed off their feet. There was no one to talk to, unless you managed to grab one of them. We just kept visiting and talking amongst ourselves. We did notice people kept disappearing (going home or dying?).

Shock

At the end of the second week, we were taken into a small room by an African doctor who could barely speak English; he had a very strong accent. We managed to gather from him that my mother had suffered a very severe stroke and had almost died. He told us that she had started to swallow again but that she would never recover. She could not move, talk, read, write, or understand most of what was being said to her. We left the room in complete disbelief. My mother had been playing Bridge and walking to the shops only a couple of weeks before.

We were soon told that my mother could not go home, that she needed to go into a nursing home. We laughed to ourselves - surely not! We didn't believe them; she looked better to us each day. Of course, we were in shock and disbelief was quite natural. Again, there was no one to talk to at all. We'd never know anyone who had suffered a stroke and we didn't know anyone in a nursing home either.

Hounding

A social worker began arriving, a woman. She began hounding us, complaining that my mother was occupying a blocked bed and needed to move on. I said that we had no money to pay a nursing home and hadn't even begun to look for one. She handed us a photocopied sheet with a list of nursing home and addresses in the area. After telling us that she couldn't get involved and that staying in the hospital was not an option she walked out of the swing doors leaving my sister, my husband and myself stunned.

We were left to our own devices, my sister began visiting nursing homes and my neighbour, who was a nurse, gave us some advice about which ones were good and bad. We had the life and future of our mother in our hands, with no help at all.

I decided to contact the DSS (now the Department of Work and Pensions). I cannot praise them enough - I was taken into a private room with a member of staff who explained everything to me clearly. I told her that my mother had enough money to pay for a nursing home but that I couldn't get hold of it for 6 months until Court of Protection was sorted out. She said that the DSS would help with payments for six months until the money was arranged; she really put our minds at rest.

Getting worse

Back in the hospital, things got worse. The nurses were so rushed that my mother was put into a chair with a cushion behind her back and fell out, bruising her face. She was left with a catheter as they had no time to take her to the toilet and meals were regularly left on her paralysed side where they couldn't be reached.

But who could complain about the nurses who were working as hard as they could? No speech therapist was available. We were wary of meeting the dragon social worker again in case she started having a go at us. Unfortunately we couldn't avoid her.''What if your father had been brought in here with a heart attack and there was no bed?'' That was her latest tactic. ''Wouldn't you feel so guilty that your mother had been taking up a bed?''
''My father died in 1983'' I replied. I suggested that my mother was moved from the critical ward to a normal one.
''There isn't anywhere'' was the reply. Thinking back, I should have made an official complaint but I was too upset and shocked by the whole business.

One day my sister was walking into a ward when a nurse walked past and whispered the name of a nursing home in her ear.''I'm not allowed to recommend anywhere but try, and don't say anything''.

Discharged

That is the place we moved my mother to and she lived there until she died of another stroke in 2001. I did attend a meeting at Guild Care once, for people who had relatives in nursing homes. I met an ex staff nurse from Worthing hospital there and she told me about the hospitals discharge policy - that somebody cannot be discharged without adequate planes being made.

When I asked her why my mother could not be moved from the critical ward to the geriatric ward or the female ward while we searched for a suitable nursing home she told us about the hospital consultants unspoken code of conduct. If a patient is accepted into a hospital they come in under the care of a particular consultant and consultants will not transfer patients or accept patients from other consultants. Work that one out!

I just hope that things are better now; it was a very unsatisfactory experience at Worthing hospital, most of all the dreadful social worker. A year or so ago I saw an article in the Worthing Herald written by the individual responsible for trying to 'free blocked beds'. I was so annoyed that I wrote to her to let her know how difficult it is to find somewhere for a person to live who cannot go home. It can't be done quickly, they can't just be shipped out on a conveyer belt - I never got a reply.

What I wish I had done differently

Ignored the social worker and made a complaint about her total lack of help or care, and her appalling comments. I wish I had had the courage to answer her back and not creep away like a timid mouse.
Asked to see the hospital discharge policy.
Refused to let my mother be discharged until we had found a suitable nursing home. Stand firm and don't be intimidated.
Asked for my mother to be moved to a geriatric or female ward to take the pressure off the critical ward.

Complain, make a fuss, and don't be fobbed off. Realise that you are just a number until you shout! Complain about poor care - my mother should not have been allowed to fall on the floor and someone should have realised that one arm was paralysed and she couldn't reach her meal.

Above of these things are very difficult when you are distressed, confused, and ignorant of procedures and when you have nobody to speak to who has time to listen.