Tag: Death

Losing Lily

TRIGGER WARNING for discussion of suicide, of deaths of people suffering mental health conditions, and of failings in mental health care. If you are in mental distress, caution is advised in reading this post.

A NOTE: This post mentions anonymously the death of a person who had recently left the care of a service I worked in. There was an investigation into the circumstances of the person’s death and the investigation has now concluded. I want to make clear that this post discusses solely my experience from my point of view and my knowledge of the situation, my thoughts and feelings. It does not reflect the position of the service I worked in, or of any other person or team involved in the person’s care.

During the time I worked in a specialist community and inpatient mental health service 7 or 8 years ago, two of our patients died. One lady had moved away to a different part of the country so hadn’t been in our service for a couple of years when she tragically died from an overdose. The other lady had just left our inpatient ward (as far as I know against doctors’ advice but assessed as having capacity to make her own decision in this regard) and gone to live independently, but deteriorated rapidly within weeks and died 4 months later. I’ll call her Lily*.

At any one time we were working with several other patients in my eyes dangerously close to death – because of their drive to harm themselves (by overdose and substance use and so on), because of their suicidal intentions, and/or because their organs were so damaged physically by the effects of their mental health conditions (starvation and other eating disorder or self-neglect symptoms leading to heart failure or diabetic coma, for example).

We were working constantly short staffed, physically and mentally unwell ourselves because of the workload and emotions and conflicts and fear of making mistakes, within constraints of time and policy that often felt out of our hands, trying to provide a service fair and the best for everyone, but knowing we could not give enough.

Lily has never left me. She’s come to my mind every week or so since the winter she died. I was a secretary, not a clinician. I didn’t know Lily as much as I got to know some of our other patients. She was intelligent and wanted to do well and was very driven for her goals. She made close friendships with a couple of people on the ward. Yet, she really needed love which I think she often didn’t find where she may have most expected it. She really did start to get better but something very painful remained impossible to reach. Sometimes I wonder if she was hurting so much she’d had enough. If everything was so locked in and disconnected from the people she needed and wanted to trust, that in her pain it felt like time to go – if she didn’t choose exactly when but she did know she’d quietly slip away.

We didn’t reach her. Even as she got a little better, we couldn’t reach through her pain. We didn’t catch her. We didn’t keep her safe when she was slipping. We lost her.

There was an investigation – many investigations – after Lily’s death. The final investigation ruled that the harm she suffered, and her death, were avoidable. I just now read the start of the report of the last investigation and horror and panic and confusion took over. The room swayed and spun and I couldn’t breathe. I’m still freezing cold.

Her life is on my hands. Not mine alone, and not the service I worked in alone because several other services were involved – but I was there.

Of course we had not wished to reject her or abandon her or disown her or her care. One of the worst things is that a lot of what was judged harmful in the report, were either actions in line with procedures we were taught to follow to give safe and fair and consistent care to every patient in the service, or matters that within the constraints we faced, we could not personally control. But whichever, it wasn’t right or safe for Lily. Consistency and guidelines and constraints are one thing but every individual patient is in very individual circumstances at very individual risk. Procedure under huge constraints imposed from outside, doesn’t make account of that.

What do we do when the steps that were supposed to have been good or safest or standard, or following established guidelines, or the best we could give, or taken in faith in the decisions of those we work for and trust, were actually steps that led to a death?

Personally, what should I have done and what do I do now? My heart is screaming at me, you did not speak up, you did not speak when you had concerns at what you heard, you did not act, you did not follow your gut – you followed instructions instead, and you know this wasn’t the only time.

Good intentions or having tried to follow what was supposed to be good enough, or even best, count for nothing now.

I’m reminded of my mother and her care and deterioration; how we were locked in an agonising cycle of her discharge, the same crises repeating, her deterioration and readmission, worse and worse every time, all of us knowing what would happen but all held powerless by legislation that didn’t allow us to put in place a few simple steps that would have kept her safe. Ultimately an adult judged to have capacity to make a decision is allowed to make a decision that will harm herself, allowed to cut herself off from sources of help, allowed to deceive everyone who wants to help. Even when those decisions and actions are the work of a delusion founded in deep-rooted, severe psychosis. My mother couldn’t be more different from Lily but I see similarities in how the hands of those who wanted to help were rendered powerless.

In my head when Lily stares at me, slowly fading, I don’t know what to say, and everything I should have said back then echoes around me.

(*not her real name. Again please note that the opinions and thoughts and experiences mentioned in this article are mine alone.)

Ginny xxx

Saying a last goodbye to my dear friend

Saying a last goodbye to my dear friend

The dear friend I wrote of in my last post, Father S, passed away last Saturday, a day after I had last visited him. Today was his funeral. It was a very hard but beautiful goodbye.

Father S was a Priest at my friend’s church. He was long retired however continued to serve and minister to his congregation – and to so many more, such as me. I came to know him through another good friend (the same who initially brought me to the faith); I have never lived in his Parish however he took such care of me and I know he prayed for me daily.  I can only imagine how much he is missed by those who knew him longer and more than I did.

Father S was an extremely humble, quiet and private person. He drew no importance or attention to himself. He worked, prayed, cared and gave of himself generously, not seeking recognition, never appearing discouraged, astoundingly giving continually even when there came nothing tangible in return. I think, indeed the Priest who gave the homily at the funeral said, that Father S has no doubt reached and helped far more people than we yet know or than he himself even knew.

I do not think his path was ever smooth. He moved between continents. He converted between churches and subsequently felt the call to become a Priest and dared to answer. I do not think he had many people to care for him in his early life, and he has lost and left behind many family members since. He suffered greatly, physically, mentally and emotionally, throughout I believe, the majority of his life, particularly in his later years. He faced intense physical pain and weakness, major health problems, increasing fatigue, struggles to get around. He suffered not only the mental cost and hurt of those things, but also deep distress, fear and sadness. Through all this, he continued to work and to give so much in friendship.

Only very occasionally did he brush the surface of what he went through, physically and psychologically. I knew and gathered a little from prayer, conversations and letters exchanged with him, and learned more today at the funeral. Though he did not make much of his suffering, he did not sugar coat things either. He did not pretend everything was fine, or not to care, or that he did not struggle, or that he had all the answers, or that we must be strong and healthy, or that all is happiness when we walk in the way of Our Lord. He lived and gave in every moment, acknowledging what exactly it brought, never turning his gaze away from Jesus and never fleeing. He taught me to begin to hold fast to Our Lord of love – seek Him in whatever is happening right now and hold fast (rather than running in fear from an image of a God I have created from all my fears and the torment going on in my head in my illness).

When I visited him the day before he died, all the more than ever, I sensed that he was very close to God. He had become much sicker very quickly at the end. On the way to see him that last day, primarily I was desperately hoping I would be in time. I was not afraid, but I did feel some uncertainty and anxiety as well as the sadness. How would I find him and what would be the right things to do? I have sat with the dying before, having worked in a hospice and having lost other elderly friends at a nursing home I used to volunteer at. Time somehow seems to change; it is not a bad thing, but indescribable; perhaps it is a result of so much that can pose a barrier to communicating, giving and loving, being stripped away. We are left bare and vulnerable faced with the finality of the separation of death. It need not be all sad. Somehow, in precious time like that, what we cannot express as we may wish to in words, can perhaps be communicated between our souls as we are held together by the Love that encompasses all of us. In our defencelessness, the stronger hold the love of God has.

In that visit as I talked with Father S, knelt and prayed with him, I felt I knew heaven was near and Mother Mary’s arms were around us. Kneeling beside him I told him some of the truest things I have been so afraid to admit. I thanked him as I should have thanked him much, much earlier and more often. Father S is one of the people whose encouragement, prayer and friendship has held me up when I have been at the very darkest times and he has played no small part in saving my life when I was at a point that I was going to try to end it. Kneeling beside his bed I prayed as I have not been able to pray for many long months. I felt that already, in the footsteps of Our Lord Jesus, Father S was drawing me after him, just as Jesus draws us after Him. In his prayer and his life that he had offered totally to God, he was drawing me out of fear to learn to know, perhaps for the first time, a God of love.

There was no ceremony, no astounding event in the moment when Father S passed. There were no visions, no glorious rays of light, no voice from heaven, no odour of roses. There was quiet, and love, and friendship, and hearts reaching out in prayer and thanksgiving to God alone. In the same way as he lived, he died, quietly, with those who loved Him, everything offered and united to the God of love He told us so plainly about in his words and his life. He died on the feast of St John Paul II (whom he loved), just before 3.00pm, the same hour at which Our Lord Jesus died. I feel that Our Lady and St John Paul came to carry him to Jesus.

I pray that now he knows in heaven the fullness of joy with the Lord he has reached out for, for so long; that he also now sees all the good he has done, especially that which remained hidden whilst he was on earth. I know so many hearts here below are full of thanks for him.

May the choirs of angels come to greet you,

May they speed you to paradise;

May the Lord enfold you in His mercy,

May you find eternal life.

(From Song of Farewell, by Ernest Sands)

Image thanks to pixabay.com – https://pixabay.com/en/banner-header-christmas-candles-880323/

Jealous of the Angels tonight…

These past two months several good people at my former church have passed. This week, I heard that the mother of one of the Priests had passed. She had suffered with MS for many years and in the end she had pancreatic cancer as well. I would not say I knew her well but she made a great impression on me the times I met her. She was kind and had a lot of selfless energy. She was an artist and prayed through her painting too.

Today, I learnt that an elderly Priest with whom I was at one time in close contact, is right at the end of his life. He is in a coma and it is likely to be a matter of a day or hours now. I’m asking that I may be able to go to pray with him and say goodbye tomorrow morning, if he is still with us. He is a dear friend though circumstances have meant that we have not so often spoken in the last year or so. I am very upset with myself that a lot of these circumstances I should have changed and didn’t and in my illness and fear I allowed or even set distance from this dear friend. I really care for him and he has been so kind to me and led me on in my faith. I have been useless and I don’t know if he knows how much he means and did for me. But soon he will, in heaven.

These two people both particularly affected me through their calm hope and the way they truly lived, really present and  experiencing the joys, costs, pains, losses, weaknesses, hopes and needs of every day. The experience was raw and awful and scary sometimes, especially in their illness. They didn’t stop being present or deny the feeling. They didn’t deny or worry about their imperfections or give up because of them.  They accepted their need for help, mercy and love. They gave it abundantly to others around them. Their feelings and their reality, and others’, was all part of what I’d describe as their constant prayer and thanksgiving. They didn’t deny or push down others’ feelings or tell them to think positive or that they should feel another way instead or that certain feelings are sinful or have to be overcome. They showed me that God is right here, right now. Not when we’re pure or perfect or when we’ve mastered and suppressed everything we fear about ourselves or when we’ve assured ourselves we’ve punished ourselves enough or atoned enough. God is here, with us and within us, in this scary, hurting, angry, overwhelming feeling, in our error, even in our failing and sin, just as much as in our joy, success and delight. I still get scared very often and still take the instinctive way of running, hiding, hurting myself. I still spiral down in very dark places. But what these two friends taught me is one of the very few things I can cling onto.

I miss them very much already. Part of it It feels like this.

Losing them has hit hard. Also, some conversations I’ve had this week, have hit me with some things I have to change. I can’t stop crying tonight. Therapy tomorrow will be…unstable I think. The very vulnerable child part of me is integrating with me and her emotions are coming out as mine, not just in the escape world. This will be scary in therapy group but I know it needs to be.

Ginny xxx

“Jealous of the Angels”, by Jenn Bostic. With thanks to Lite Brite for the video.