My mother has died – had enough of the whole thing

(This person wrote a partial story on this site but couldn’t manage more)


Written January 2015

It has now been a few months since my mother’s death and I finally feel able to write a bit about the whole experience. I do apologise for not getting back to you earlier, but to honest, I’d just had enough of the whole thing

Looking back, I suppose my biggest concern of the care my mother received falls into two categories.
1. Lack of ‘real’ care.
2. Lack of joined up thinking.

Let me start by saying that there were many occasions when my mother did receive care, proper care, kind, attentive, non-hurried care. Unfortunately, this was not always so.

It’s true to say my mother never really enjoyed full health. Childhood illnesses, such as asthma and excema she coped with, but toward the latter part of her life, the illnesses just piled up;
Severe headaches
Acute glaucoma
Age related macular degeneration
Arthritis in the neck and spine
Primary Billiary Sclerosis
Gall bladder removal
Double incontinence
Hip replacement
Double knee replacement
Swollen legs
Pulmonary disease
Vascular disease
Cancer of the stomach

When I look at the list, I’m left wondering how she managed as long as she did.
When my father died, some two years before her, we quickly realised just how much he did for her. But with jobs and families of our own, it was clear that as time went on she needed proper help. After a series of five hospital visits due to falls, I asked for help. Trying to get a yes from the woman I met in the ward who spoke to my mother (whilst I wasn’t there) was like trying to get blood from a stone. In her opinion, because my mother could shuffle to the toilet, she was reluctant to provide anything. I told her she was practically blind, incontinent and disabled, but it made no difference. I didn’t realise it at the time, but this was to be the first of many such battles. By the time I asked for help again, the first person I had spoken to had left. This revolving door syndrome is rife in the NHS and private caring agencies and is terribly unhelpful.

When help was finally granted in the shape of three ‘flying’ visits a day from a ‘carer’, we were truly shocked. A young girl, who’s first language wasn’t English (she had a heavy African accent which I found difficult to understand, let alone my blind, deaf mother) rushed in whilst her boyfriend sat outside in the car with the engine running. She had virtually no people skills and no experience. She barely had time to make a sandwhich and a cup of tea before running out, sometimes leaving the front door wide open. Before long, my mother was back in hospital, resulting in the whole process of trying to get help starting all over again. The endless questions, the same answers to different people. Sometimes I’d be on the phone for over an hour arguing with someone who’d never even met my mother or seen her condition, trying to get extra visits. When we were finally ‘granted’ approval for six visits a day, we were ecstatic. However, it wasn’t long before the same old problems occurred.

“Wake -up’ visits were often over an hour late, sometimes they didn’t show up at all, leaving my mother laying in dirty and wet sheets. Her mid-morning visits sometimes didn’t show until lunchtime, when instead of one carer, the early lunchtime one would appear at the same time! Sometimes, the lunchtime call didn’t show at all and the bed-time visits varied so wildly it was ridiculous. Phone calls to the ‘care’ agency were often met with an answer-phone or a shrug of the shoulders response – “we know, but there’s not a lot we can do about it”, or “we just can’t get the staff”.

It soon became clear to us that many carers did the bare minimum. Commodes weren’t emptied, rubbish not cleared etc. And so bit by bit, my brother and I would find ourselves doing what the care agencies were being paid to do. The hassle of getting the care, and the thought of having to go through the whole process yet again meant we just had to grin and bear it. And so did my mum.

We all learned a lot about ourselves and what we were capable of, although I have to say I could have done without having to change my mum’s incontinence pads! I’m afraid when you’re blind, deaf and incontinent, dignity goes out the window and we all discovered how useful a sense of humour could be!

Also, it has to be said that there was a hardcore of three or four carers who were excellent and caring in the true sense of the word. They frequently stayed longer than their allotted time allocation and were clearly very fond of my mother. But it was obvious they were utterly worked off their feet and that the agency was clearly taking advantage of their kindness and loyalty. All of them, without exemption told us they were looking for other jobs. Thus, the one thing a frail, vulnerable person wants – consistency in their carers – was never going to happen in this system.

Hospital appointments were a nightmare, as just getting mum out of the house needed so much preparation, and towards the end, she just couldn’t manage it. So nurse visits became the next feature of our lives. Some didn’t turn up when they said they would. Sometimes we’d go round and fine two there, because of a lack of communication between departments. On one occasion, I found three nurses on the doorstep! Doubtless someone somewhere else wasn’t getting their visit because three were on our doorstep! This is what I meant by the lack of joined-up thinking. Different people, different departments – always changing, never talking to each other.

The only time when it seemed that everyone seemed to know what they were doing was when my mother was finally diagnosed with cancer. I say finally, as it ‘slipped out’ in a conversation with my GP – (we were never actually told and found out by accident) and she was admitted to the Farleigh Hospice. The change in attitude, care, commitment, compassion was extraordinary, and, frankly, very humbling. The fact that someone was waiting to greet us at the door, who knew us (all) by name, who bothered to talk to us, rather than at us, were all new experiences. After settling her down, she returned home and a new, live-in-carer arrived. The whole standard of care at this ‘end-of-life’ stage was excellent.

My brother and I will always be grateful for the care my mother received, but we’ll always bear with us the constant battles to get that care, and, sadly, the inconsistent nature of it. For every genuinely compassionate HCP we met, we met far too many who patently didn’t care, were too busy to care, or who, frankly, shouldn’t be in the ‘caring’ profession at all.

If I were to distill it all down to some basic points, it would be these.

1. Care agencies are a law unto themselves. They sometimes employ wholly unsuitable people, pay them too little and ask too much of the ‘good’ carers.
2. Hospital departments just don’t communicate with each other enough. Ringing several departments on the same day, when sometimes they share the same office is insane.
3. Getting care itself is a nightmare struggle, where you are made to feel guilty for asking. There should be a clearly defined, transparent and common sense approach to what is available and to whom.
4. Too many people don’t stay in their positions for any length of time – probably because of stress and overwork. Everyone wants to be a manager, no one wants to actually get their hands dirty.
4. There are too many people who don’t see nursing as a vocation – more just a job. I don’t believe you can be taught ‘care and compassion’ – you either have it or you don’t and more needs to be done to encourage caring people into the ‘caring’ professions.
5. Simply sitting by someone’s bed and having a cup of tea with them is worth ten times as much as a hurredly prepared microwaved ready-meal. Never, ever, ever underestimate one moment of real compassion, however fleeting.
6. Quality of care is slipping. I once saw a poster stuck on the ward exclaiming their ‘mission statement’. It was a small, A4 poster, with just two paragraphs. It contained no fewer than five spelling and grammatical errors nd it was about excellence! Perhaps less paperwork, more hands-on caring might just improve things and remind us all that one day, it will be our turn.


Things That Need Improving:

  1. Care agencies are a law unto themselves
  2. Hospital departments just don’t communicate with each other enough. There are too many people who don’t see nursing as a vocation - more just a job.
  3. Getting care itself is a nightmare struggle. There should be a clearly defined, transparent and common sense approach to what is available and to whom.





Date Experience Happened

2012 - 2014