NHS? No thankyou

Losing someone very close to you is terribly difficult at the best of times. It is made even harder when they are very sick for some time before. So, is it really necessary for things to be made even harder by medical staff? It was not until my father in law was hospitalised some weeks ago that we did, indeed, come to learn just what that word overstretched actually meant. For my husband and his family it literally meant the over stretching of their nerves and an abundance of stress right up to the moment their father died. It made me wonder how many other people are suffering this literally as I write this. We could not fault the nurses who were caring and considerate or the doctors who were obviously stressed and probably as those wonderful words express, over stretched. But the system is what let us and my father-in-law down. Red tape, forms and an abundance of incompetence.
For us it began when ‘Bud’ (my lovely father-in-law) entered hospital. He had kidney failure and was admitted to a renal ward. We were allowed to visit whenever we liked and the first thing to perturb me was the fact that he was always in bed when he was quite capable of sitting up. The curtains were always drawn, even on the most beautiful summer’s day. Does being over stretched mean that nurses cannot pull back curtains and brighten a patient’s day with a bit of sunshine? We would find him in bed every visit and often asleep. Come to think of it I imagine I would have been inclined to sleep if my room was in darkness and I was in bed. The few times we did find him in a chair we took him outside in a wheelchair. As the weeks went on he seemed to be more and more docile when we arrived for the visits and we became concerned why this was. On one occasion we arrived to find he had been moved. Bud seemed unable to give us an explanation for this, so we inquired and were told that he had an infection and needed to be isolated. We then presumed his sleeping was due to the drugs as no one gave us any clear answers. Our fears began that if we did not get him removed from there he would develop further infections. This spurred my husband, Andrew and his brother and sister on to get him out as soon as possible. However, this was to be more difficult than it sounds. My mother-in-law had had a breakdown and felt she could not possibly continue taking on the responsibility of helping her husband with his dialysis. He was not capable of doing it himself anymore. At eighty seven, he made mistakes and often forgot to perform important tasks relevant to his dialysis. We had a big problem. So began the journey of daily dealings with the system. It all seemed so simple. We would arrange for carers to come to the house and take care of all that was needed. Then we encountered the first issue, that of cost. It was not possible to sell their house as my mother-in-law still lived there. So began the filling in of forms and more forms and of course more forms to get the financial help needed. Only to learn that we were unlikely to be eligible for financial help as my in-laws owned their own home. This felt like something of a penalization but the battle commenced. Meanwhile, Bud seemed to be slowly going downhill and mostly slept through the whole of our visit. The plan to have carers at home seemed very unlikely especially as we would need them to be experienced in giving dialysis. Then, the idea of getting him into a nursing home seemed a possibility especially as they said they would get one of their nurses trained in dialysis. Mother-in-law seemed happy with selling the house and moving somewhere smaller and the owner of the home was happy to take part payment for father-in-laws stay until such time the house was sold. Then, there were more forms and we were told that he was likely eligible for funding but we would lose it if we took him out of hospital before the decision was made.

Lovely Bud

I cannot even begin to explain how Occupational health works and social services but It seems sufficient to say that they seem to make it as difficult as humanly possible and my sister-in-law seemed at the end of her tether some days. Meanwhile, Bud had gone a little downhill and when speaking to my husband the doctors suggested in the nicest possible way, of course, that maybe dialysis should be stopped!! We were appalled. This was five weeks before he died and I hasten to add it was not of renal failure either. His family made it quite clear this was not an option. The man on his good days was sitting up in bed joking with us and they suggested pulling the plug. It is still deeply offensive to us that this was even mentioned by anyone. The battle to get him home continued. We told the hospital that we had a place for him and we were then told that occupational health and social services, at least I think it was that way round, would fast track everything. As far as I know, it got done and finally came together to be put in place on the night of the morning he died! Finally, the wait became so agonising that Andrew, normally not known to show stress, slowly began to reveal the signs. By this time, his father who had entered hospital slightly unwell was now very unwell and the thing we had dreaded finally happened. He caught a chest infection. Again the doctors said it would be best to stop dialysis and that the doctor would talk to him about it. A stranger would talk to Bud about ending his life? My husband said no! If anyone would ask his dad how he felt about that it would be him and if he should choose to continue treatment then he had every right to do so. The drive down to the hospital that day was torture. I could almost hear Andrew’s mind whirring with what he would say to his father. Luckily, he never had to. They had taken blood tests which had showed his kidneys were functioning reasonably well on their own now that he was less active. He could come home without any worry about who would do his dialysis. Except, of course, it was never going to be that simple was it? There was the bed to organise. We had to get a full time nurse. The time for a carer was now past. Bud was at a stage where he needed full time nursing. So, began the phoning around again. Then, Bud took a turn for the worst and we rushed to the hospital. They said he was close to dying. Bud rallied round and stayed with us. It was now a rapid race to get everything in place to get him home. Not back home to get well but back home to die. Hospitals it seems do not always make you better.
We hired the most wonderful nurse and I think we will all thank whoever it is you thank every day of our lives that we found her. Bud came home at last. There the story ends you think. No, sadly it doesn’t. Our lovely nurse, who we will simply call J, worked well over her hours, staying up until late because the Marie Curie nurses it seemed could not make it. Or they seemed to be coming and then did not. Most nights a member of family stayed with him as by this time he could not be left alone at night. Bud was only home five days before he died. We did not hire another nurse for night time as we were assured Marie Curie nurses would come. In total 30 different district nurses visited in the space of four days. Bud never saw the same one twice. If we had not had J, I think Bud would have been terrified by all the different faces. The stress on everyone was overwhelming. The morning he died, J was excellent as were the district nurses who came in to certify the death. I think I would have felt fine about how the district nurses handled everything if the district nurse had not come up to us and said in a rehearsed voice.
‘I’m sorry for your loss.’ Five words I heard her repeat several times before she left. I can’t help wondering if the minister for health is also sorry for our loss. It was not the nurses fault. It is how she is trained. But I could not help wondering how many times she has said that in the past month to other bereaved families. Maybe the NHS did not actually kill him but they sure as hell did very little to prevent it, so maybe they should be sorry for our loss.

The Pain

This article was featured in The Scavenger magazine.

Childless While the pain of involuntary childlessness is devastating for both women and men, childless people should be considered an integral part of society and not as outsiders or victims, writes Lynda Renham-Cook.

My name is Lynda Renham-Cook and I am a childless woman – not by choice (as opposed to ‘child-free’).

I have been childless for over 25 years and my chances of ever being a mother is now negligible. The deep void felt by a woman who wants a child but is unable to conceive is indescribable.

I know, because I have tried to express my pain to my second husband, who is a father and he cannot comprehend it and I can barely describe it.

However, I consider myself lucky. I have never lost a child, or given birth to a dead baby like one friend who delivered at nine months her dead child because the umbilical cord was tied around her baby’s neck.

I have never had to endure the ordeal of an early hysterectomy or feel the constant physical pain that follows operations that have been unsuccessful. My own infertility has the dreaded, awful title of ‘Unexplained Infertility.’

In broad terms, this means that Doctors cannot find a medical explanation for why a pregnancy doesn’t happen. Through the years my emotions have resembled a fairground attraction. They have roller coasted from sadness, bitterness, devastation, loneliness, to almost madness.

I have read about women who have stolen babies from other women and although I do not condone this I can understand it. Many women are brought up believing that getting married and having children is the greatest thing a woman can achieve.

Many are practically ostracised from their families when they cannot reproduce. They have failed as women. How do these women cope with the loss of their own family coupled with their inability to have children? I cannot begin to imagine.

I have struggled to highlight the plight of childless women. It is very difficult for a woman, without children, to integrate herself into what is very much a family orientated society.

For many years I hid the fact that I could not have children. I deluded myself that it was the fair thing to do for others and myself. It was not right to embarrass the rest of society, or for me to face the pitied looks from other women. I told everyone I met that I did not want children.

The most common questions asked when socialising are, ‘What do you do then Lynda?’ and ‘Do you have children?’

Childless people are seen as an embarrassment

I find this exceptionally personal but it seems an acceptable question when in mixed company. Consequently, for much of my life I felt an outsider in society and still do, albeit in a more comfortable way now, as I am more relaxed with my situation. I still am, however, an embarrassment that most mothers do not know how to deal with.

Every mother reading this will shake her head in denial and think how ridiculous. But, they do feel embarrassment when meeting a childless woman, rather like people do when faced with grief.

They do not know what to say and suddenly you are a woman they have nothing in common with. They cannot discuss their child’s feeding problems, or their teenagers annoying habits.

They are uncomfortable to discuss their offspring’s achievements with you because you cannot compete with stories of your own. So they find ways of making you feel less inadequate, even though, you may not, and may never have felt that way in the first place.

Their most helpful comments are the following:

“Well you haven’t missed anything.”

Oh really?

“If I had my time again I wouldn’t do it.”

Do they seriously expect me to believe that they would not give birth to little Jamie or adorable Sophie if they could go back in time? Why do I not believe them?

Then, there is the religious viewpoint:

“God works in mysterious ways.”

Is this some strange way of telling me that God felt I was not good enough to be a mother?

However, my favourite has to be:

“Why don’t you foster?”

Now, there’s a thought. How easy that must be. Do I want to look after a child only to give it up after a period of time? No, I don’t think so.

Finding support

Time passed and I finally overcame my feelings of shame and when asked if I have children, I simply reply: “No, I couldn’t have them.”

I ignore the stupid comments they may make in an attempt to make me feel less inadequate. I have found other projects to fill my life and although nothing can fill that void, I refuse to be a victim of my childlessness.

It occurred to me that I could not be alone. I never had an opportunity to share my feelings with anyone when I first learnt I was childless but now, thanks to the Internet all that has changed. I have discovered many women all over the world are suffering the same plight.

Two years ago I began a Facebook group ‘Childless Support’. At the beginning only a handful of women joined. Almost one year later we have 150 members and are still growing.

I also learnt how to get in touch with my own feelings by seeking out a good counsellor.

Our aim is to highlight the difficulties faced by childless women. It is important that we are an integral part of society and not seen to be outsiders or victims.

Childless men

More importantly it should never be forgotten that men are childless too and their pain is just as acute. I am thrilled we have males in our group who give us a whole new perspective on being childless.

Jerry, a childless man has wrestled with his emotions for many years. Here is his story:

Like Lynda, I too dread that question at dinner parties:

“Do you have children?”

“No!” Is what I want to scream, loudly, angrily and in pain.

In the past I used to just say no and attempt to change the subject. Now, I say, “It hasn’t worked for us.”

This provokes a variety of reactions, some very supportive, seeming to recognise the depth of my sadness and understanding it, while others, obviously embarrassed, begin to utter those platitudes, well-meant but ultimately quite insulting as Lynda has already mentioned.

I can’t speak for other childless men, however, I can tell you what it has been like for me.

Way back when I was 22 I was taking a group of people around a local nature reserve and I can remember vividly how excited the children were at everything I was showing them.

Their joy and happiness and their laughter had an amazing effect on me. That was the day I decided I wanted to be a father more than anything else in life.

When I met my partner it was so frustrating waiting for her to catch up with my desires and the frustration continued when things didn’t happen as expected.

Then came the exhaustive and intimate tests, until finally we were given the label of ‘unexplained infertility.’ It is a frustrating diagnosis. It gives you nothing definite to kick against, to force closure, or to stop all those ‘what if’ thoughts that flood into your mind.

After four cycles of IVF we achieved a pregnancy only to suffer a miscarriage, but our little one lives on in our hearts. Eventually my partner could take no more disappointments and my life became empty, my future bleak. Everything I’d dreamed about and lived for was gone.

It has taken a lot of strength to get myself together again, to enjoy life once more because for a while nothing lifted me. Life as a childless man when all you ever wanted to be was a father is incredibly tough. Until you are in that position you do not realise just how many references to children there are in everyday life.

Families are everywhere in the media. Family life, form the basis of so many films and plays. Television adverts are full of children. You hear a child in a play call ‘daddy daddy’ and you realise you are never going to hear those words addressed to you and it hurts. It hurts a lot.

Every day, every hour, society reminds you of what you will never experience.

Infertility I think affects men differently from women. Childless women get a degree of sympathy and recognition.

Whenever infertility is discussed in the media the pain endured by women is recognised while that endured by men is so often ignored.

Men often feel that they have to be strong to be supportive of their partner, so they hide their disappointment, pain and anguish. Others find the inability to control events overwhelming.

What lifted me out of the dark place I’d sunk into was talking. Talking to pretty much anyone who had anything constructive to say – counsellors, friends, strangers, and of course my partner.

A vital part of that talking has been on the internet. That wonderful piece of technology has allowed me to reach out to others in the same situation as me and that has been so important.

It can be too easy to feel so alone when you are faced with such major issues in your life, as many will testify, and being able to talk and chat, online helps so much.

I have struggled not to be bitter and feel blessed to have found a wonderful husband whose own children have been very accepting of me and given me the pleasures of grandparenting, something I thought I would never experience.

I am always happy when someone in our group tells us they are finally pregnant. Bitterness is the road to destruction and not one I want to travel.

How to respond to involuntarily childless people

If you meet a childless woman please do not presume it is by choice. Do not feel you need to say anything to make their situation better and please attempt not to show any embarrassment.

One of the nicest responses I ever had was from a man I met at a dinner party. I had previously found this particular person rather arrogant and was not looking forward to seeing him again. He and his wife arrived late, full of apologies. Their babysitter had let them down at the last-minute and then their eldest child would not settle with the new sitter.

“Who would have children?” he had said with a nonchalant air as he removed his jacket.

“I would,” I answered in a flash.

He acknowledged me without pity in his eyes and simply said,

“I’m sorry.”

It was enough. I didn’t feel inadequate. It was the right response.

Lynda Renham-Cook is associate editor of The Scavenger. A freelance writer, she learnt she could not have children three years after being married. She was then in her early 30s. After a long battle with infertility treatment she eventually resigned herself to never being a mother.

As time went on her loneliness increased and she sought to find a way to integrate herself into society. In an attempt to seek support she set up a group on the internet and discovered many women suffering in the same way. Her discovery has not only helped her understand the struggles other women have gone through but also gained her many new friends.

Any woman wishing to join Lynda’s group can contact her childless@lyndarenham.org.uk