My advice for visiting a loved one in hospital - Helen's story

In 2022, Helen's brother, who experiences schizophrenia, was sadly detained under the Mental Health Act for 12 months. She reflects on her personal experiences, sharing advice to help other carers, particularly siblings, who may be preparing for a hospital visit.

Reaching crisis

My stomach begins to churn and gurgle as we wait for the hand to strike 11 o’clock and make our way to the hospital. It’s a 45-minute drive but we must allow an hour. For me, the anxiety before the visit is one of the greatest challenges. The questions spin around my head: Will my brother have washed today? Will he be agitated? Are the staff doing as much as they can? Have they found my brother’s clothes that the hospital lost? My brother, Edward, is four years older than me and this is his fourth stay in hospital. In 2010, he was diagnosed with schizophrenia, and in 2022 faced the trauma and isolation of catatonia.

I made the 999 call from our family home and still fight the images away of six police officers standing on the driveway – ready to come inside the house and restrain my brother on the floor. He lay still, motionless, his eyes shut and his mind troubled. My heart ached, longing for him to be well and to come back to us. I was able to call for an ambulance and my brother was taken off. To my relief, he went voluntarily. My brother had been aggressive and violent during his psychotic episode.

I can still picture him, halfway up the stairs, turning around and saying to my Dad, ‘I’m going to strangle you’. The next morning, he tried to follow through with his wish. There were ghosts in the house – demons – that’s what my brother has now told us. I can’t begin to imagine how scared and frightened he must have felt.

At that moment, the family, the carers, are in survival mode. That same night, I was too scared to sleep, despite knowing that my brother was in the safety of the hospital, I was traumatised. I remember placing the Dyson hoover against my locked bedroom door for an extra defense. Now, it was time to visit and be a sister.

Back inside the car and my thoughts still flow in quick succession – how much weight has my brother now lost? Will he remember anything I say? Shall I hug him, or will he hurt me? How do I comfort my mum when she starts to cry, and I can see her walk slowly along the corridor to visit her child? ‘Remember it’s not him’, ‘it’s the illness’ and ‘he is in the best place’ are some of the phrases we say to one another.

Remembering the good times

I think of happier times in the car. I take myself back to climbing trees in the garden, my brother giving me a helping hand to reach the higher branch. The day he saved my life when I swung from the treehouse on our makeshift swing – my legs dangling and away from the safety of the treehouse roof. The time when we crunched over the autumnal leaves in the beautiful Lake District in our matching frog wellies and another time when we played tennis for hours and went in search of the countless tennis balls in the farmer’s garden. We spent more time searching for balls than hitting them with our rackets.

Remember that your sibling or loved one is still them, always. Hold onto the good memories in times of crisis because these powerful connections and times of joy will really help you when you don’t recognise the person you are visiting. This is hard and it took me a long time to be able to do this.

One day at a time

I remember on the first visit my brother wouldn’t come out and see us. We would wait in the family room and hope to see his face, to hug him, and to reassure him. When he did finally come, my brother was speaking irrationally and very quickly. It was difficult to understand. In 2018, I decided to do the Mental Health Foundation First Aid training and I would really recommend it. You must really think about your responses on those visits. My brother became incredibly paranoid and even my eye contact made a difference. I would agree and nod and treat his delusions and fears as reality and wouldn’t challenge his beliefs.

I found asking about his daily routine helped – what have you had for lunch? Are the staff nice? What have you been watching on television? Are you sleeping ok? It was helpful to ask these questions when the silence came. The key for me was to keep my brother talking and to understand how he was feeling. In the beginning, my brother only stayed in the room for 30 seconds but by his final visits, we were having days out in the city centre and trips to coffee shops. My advice having been through it is to not look too far ahead and to focus on one visit at a time. My mum told me this advice and it really helped us all.

What helped me

Here are my take-home points. Of course, every individual and family is different, and you will know what’s best, but I hope this helps.

Visiting times: All hospitals will have different visiting times but if your loved one is in PICU (Psychiatric Intensive Care Unit) it is possible to see your loved one outside of these times. Don’t be afraid of asking the hospital. An important consideration is mealtimes and medication rounds. We would visit in the afternoon after my brother had had lunch, so he had time to relax. There was a period when he did not eat for weeks and weeks and this was when it was critical that we visited any time we could to try and communicate with my brother and tell him that we love him.

Prepare for the visit: Write a few questions down on a phone or notepad for what you want to achieve from that hospital visit – do you have an important question to ask the staff? Do you want to visit the garden with your loved one or go for a walk? Make a plan before going and it will help.

Gifts and presents: Consider activities and things to do. There is sometimes just one television on the ward and your loved one might not want to sit with other people on the ward. We took in a radio for my brother, so he could listen to the football and cricket. A newspaper is also a good idea or a book. Keeping in touch with the news and what’s going on in the outside world is something to consider. My brother lost track of all time in the hospital and missed so many key events. My dad took football programmes to hospital, this helped him feel in touch with the latest football news. We took in a chocolate bunny at Easter and even a cuddly toy.

Small things make a massive difference but remember to log all items with the staff. We also brought in photographs of our loved on and shared lots of photographs with the staff – ‘this is Edward’, they couldn’t believe that this person was the person they were caring for. We found it really helpful for the staff to get to know your family member’s hobbies etc and the staff printed out pictures of my brother’s football team to put on his bedroom wall.

Consider your body language: For my brother, he didn’t like it when you stared for too long at him or moved your hands. You will know your loved one and their illness best but it’s something you can be conscious of before you visit. For example, which chair will you sit in, and how close are you? Where will the staff member sit?

Consider the environment: Depending on the hospital, you will probably see other people who are on the ward. Some people are very poorly and may shout things at you, one man threatened to hurt my mum through a locked door. Staff will walk with other service users to go outside or in another room and a smile and a ‘hello’ to other people on the ward goes a long way.

Get to know the staff and their roles: There is an overwhelming number of staff and multiple wards. There are usually pictures/headshots outside the wards with the staff member’s name and this can be helpful to familiarise yourself with when visiting. The hospital will have a main telephone number for the ward and a patient’s phone. The patient’s phone was a critical lifeline for us when my brother refused face-to-face visits. We could then build a connection with him over the phone. It started with him hanging up the phone straight away and by the end, my brother was calling us up.

I also wrote some notes and questions before calling the hospital. It really helped to ease my anxiety. Virtual visits also happen, and this is a good time to get to know staff. We did a weekly Teams call with the consultant and nursing team staff. Usually, the consultant will update you on the treatment/medication plan and the nursing staff will update you on sleep patterns/behaviour on the ward, and an Occupational Therapist may be assigned to your loved one to help with activities such as cooking, art therapy, and walks.

Ask for help and talk: I self-referred myself for counselling after the crisis happened and told my place of work exactly what I had been through. Being open and honest about how I have felt has really helped me. I had just two weeks off sick in the 12 months but sometimes I came to work later or left earlier than planned. I have been able to hold down a full-time busy role throughout my brother being in hospital and I don’t think I would have been able to if I hadn’t been so open.

Educate yourself about the illness but be careful of Google: I found reading about my brother’s illness really helped me because I wanted to know the facts. For example, my brother needed to re-start on an antipsychotic medication and I wanted to know more about that. My brother was then given Electroconvulsive Therapy (ECT) and reading on Rethink Mental Illness was certainly beneficial. Make sure you speak to Rethink for reputable websites and resources because there are some frightening articles online.

Don’t look too far ahead and focus on one day at a time: This is an old saying but I found this really helped me and my family. Mental illness can change so quickly. Try to use weekly update meetings as a point of reference for progress.

Complain if you aren’t happy: The hospital lost a number of possessions while caring for my brother in 2022 and my brother developed bed sores. We complained to the CQC (Care Quality Commission) and the hospital and staff were aware of our concerns. It’s important you familiarise yourself with the appropriate channels and if your loved one lacks the mental capacity, they are counting on you to stand up for them and protect their rights.

Remember everyone experiences things differently: Members of my family processed and dealt with visits very differently. There is no right way to experience a visit and it’s important to give other family members space and time. That’s why having other outlets and people you can talk to is so key – your family member may not wish to discuss your loved one and the hospital when you need to talk something over.

The storm will pass

I’m so delighted to share that my brother was discharged from the hospital earlier in 2023 – after a short stay to monitor blood results. He is now living independently and is occasionally working. A few weeks ago, I spent a full day with him 1-1 in my house. I even walked down a wooded path and I didn’t feel scared or look over my shoulder. I looked at the trees overhead and I’m taken back once more to the tree climbing – I look back at my brother, with his new clothes on, his beard shaved and at the smile on his face, and I smile too. Who knows what’s around the corner, perhaps another hospital stay, but I know I will always be on the journey with my brother.

Now, time for a coffee and maybe we might even play some tennis this summer…

If you're interested in Mental Health First Aid Training, read more here to find out how you can gain the knowledge and skills to spot signs of people experiencing poor mental health, start conversations and signpost a person to appropriate support.​