"I felt like I was in a different bubble from everyone else.
Sue Meadows had moved to Colchester two years ago to help out with her grandchildren so her daughter Jade and son-in-law Mike could both work full time. But in less than a year the family’s life had been turned upside after Sue received a diagnosis of lung cancer which had spread to her lymph nodes and which would eventually spread to her brain. Jade, who was in her mid-20s, had to suddenly take on a role as carer for her mum as well as her young family. Jade shares what it was like to suddenly become a carer…
It was all pretty intense. My mum was agoraphobic and had panic attacks and I’d looked after her in the sense of taking her shopping and doing bits for her, but I’d not cared physically for someone who was really quite poorly.
It all seems quite a blur. Mum had been given 2-12 months from diagnosis. For a big period of it I was caring for her at her home, then for part of it she was living with me but she moved back home because it all got a bit too much. I don’t have a very big house; she was in my front room on a hospital bed.
St Helena offered me some complementary therapy and I started having reflexology. The treatments helped because they were just an hour to myself. I felt so relaxed, just at peace. I didn’t get any time to myself. I was eating microwave meals and I was running around with the chaos of family life. And it was just really difficult; I looked forward to that hour so much. I had to make that time for myself because otherwise I didn’t have any ‘me time’; 24 hours a day I didn’t have any time, so that was brilliant. I needed it to be kept human.
It’s going to be really difficult at home
If only I had been more aware of what the situation was going to be. Everyone kept saying to me ‘this is going to be really hard, Jade; you’ve taken on the role of carer, you’ve left your job, this is going to be difficult.’ But I’m quite tough, quite strong, so I thought it would be fine. Actually now I realise they were right. I didn’t realise how difficult it would be and I think it makes it harder watching someone you do love, that you don’t want to go, to actually know this is happening for real.
That’s how I imagined myself, I felt like I was in a different bubble from everyone else. I was floating around everywhere. If I’d known before it all started, I would’ve been able to deal with things a lot better. There is so much to find out and to know; who you need to speak to and where you need to go, all the services that are out there.
I didn’t realise how difficult it would actually be - the appointments, the phone calls, the prescriptions...
Our Community Nurse Specialist came out every couple of weeks or if I needed her to come before then. I had called SinglePoint many times for advice and help day and night. The thing I struggled with the most was mum’s medication and the thing I remember the most was there was a lot of phone calls and prescriptions, and that’s when I needed the guidance. It was reassuring to have them there because someone stayed on the phone or rang back quite quick.
There is so much involved with someone with cancer, but I didn’t realise how difficult it would actually be. The appointments, the phone calls, the prescriptions, the hospital visits, the various different medications… I just didn’t realise there was so much more involved. I was naïve. I didn’t know anything about it. I’d known various people who had spoken about family members who’d had cancer but to actually be involved when it is someone so close…
Staying at The Hospice
Mum went to The Hospice for a respite week at the beginning of August. We thought it was going to be a brilliant, lovely week, all peaceful and I knew mum loved The Hospice. But the cancer had already gone to her brain so her personality was quite different. She wasn’t herself, she wasn’t comfortable there and she didn’t want to be in The Hospice. She had been so het up that The Hospice was ‘where people go to pass away’, she didn’t just flow with it. I knew she wasn’t enjoying it as much as she should but she was really quite poorly that week, it was a difficult week. And because I tried to take a step back and not visit her every day to focus on some days with the kids. I don’t think she liked it, I think she was very scared once she knew it had attacked her brain and I think she gave up. She came across really angry but who can blame her when she was going through what she was going through?
But it was completely different from when she moved in there again in September, completely different.
The Hospice was just lovely. It was a nice place even though the circumstances were horrendous, but it didn’t feel as horrendous because it was such a nice place. The main thing I remember was they kept mum’s dignity. She didn’t talk for 11 days; she was just a person breathing. She didn’t eat or drink or talk or anything for 11 days but they kept her dignity. She was still a person and she was still Sue. She was looked after really, really well and that’s the main this I’ll remember from The Hospice. She was still as important as the day she went in for respite until the day she died, she was treated exactly the same.
And they did lovely things for her and us as a family. My sister and I stayed there for 13 days and nights in the room with her and I remember one day they strolled mum out into the garden so she could have some sunshine. We went and sat out there and had a coffee.
They were always there to help with the children. They had the playroom, they were entertained; I knew they were just up the corridor and they were safe and happy.
The staff in the kitchen were amazing. I think we had two weeks’ worth of food there morning, lunch and evening! They would be doing their meals and save us something back.
And the nurses were great. My sister and I were asleep on the pull out beds and the night nurses crept in to check mum over to see if she was alright and tried not to disturb us. It was really nice. I don’t know how I would have coped being at home, I honestly wouldn’t have known what I would have done. Being in such a secure place with everyone knowing their knowledge, like the lady who came to help with the children; she brought puppets and a story book. Really helpful. You can tell everyone loves their job. It’s kept lovely, the gardens are really pretty, the cleaners are always coming around, the homely cooked meals, the ladies on the desk at the front… all just as lovely.
Meaningful time with mum
When mum went in there I could relax a bit. It was weird because I didn’t have to run around and call the doctor and find the medication. And I didn’t have to keep her place clean and tidy, I didn’t have to make sure I was cooking her meals… the difference was amazing. Knowing I could be there sitting by her bed and have the energy to talk to her, watch a bit of tv with her and do some nice things, rather than stressing because I had to get some food shopping in or pick up a prescription or check her to make sure she’s clean and stuff. I just sat there in a chair by her side. And although it was a really short time because of how poorly she was, it was to me meaningful time. It was watching a tv programme but it was so much more.
I had been so stressed when she was at home and didn’t enjoy that time with her because I was stressing about stuff. It was really difficult because I didn’t know how to look after her properly 100%. It was difficult to be able to enjoy the time with her because I was so sad, fed up and everything else with everyday life. It was all very volatile.
I could just sit there with her and just be there and think about her, rather than worry about everything else
But at The Hospice, knowing the kids were playing with the games console or colouring two minutes away from me, it was comforting to know I could just sit there with her and just be there and think about her, rather than worry about everything else that was going on. It was really nice.
Mum had some Reiki there. It was really beautiful actually; she’d not eaten or drank or spoken for a few days and a lady came in and gave her some Reiki. We’d pinned an angel brooch on her and I remember the lady did whatever she did to her chest and her head, and mum moved her hand up and put her hand on the angel. We were amazed, she was still there. That was pretty amazing actually. It was nice to watch as well. It looked like she was relaxing.
Talking about mum’s wishes
We knew by then she was ready to go but we just didn’t know when it was going to happen.
We got to talk to her a little bit in the hospital and she never really said where she wanted to be at the end specifically but I think by then she wanted what was best for me as a carer looking after her. Because she lived alone we got the impression she didn’t want to be at home because she was scared, she was lonely, she was frightened. So for her she was in the right place and she did know where she was. I remember the doctors and nurses saying to her ‘do you know where you are?’ And she could answer ‘I know where I am, I’m in The Hospice’.
We were able to gather a few ideas like songs and special requirements that she wanted for a service. I would say now to people to do it a lot earlier on, because I wish I had been able to ask more questions but because she was so poorly we could only get a little bit out of her. We couldn’t push so much because she wasn’t very well. It was hard to ask because with the brain cancer it was very difficult to communicate. She struggled a lot to communicate properly towards the end. That was the tough bit because you don’t want to ask these questions but you know you need to. Does she understand us? But we did get there with some bits and pieces. I hope we did everything she wanted.
Mum was loud, bubbly, full of life. She used to be called the ‘life and soul of the party’. She loved her crosswords, she loved family, she loved spending time with her grandchildren, with her children and her brothers and sisters. She was always there to listen. We loved going to bingo together... If she was in a room full of people you would know she was there!
I have moments when it hits me now and again. We just had my son’s birthday and that was hard because we had all been singing happy birthday to him in The Hospice last year, so it’s the memories of it just being a difficult time. And after mum died, the guidance we were given was great; help with the children, the support for the funeral arrangements, the funeral directors, what to do about closing mum’s accounts, finances, knowing where to go for things. I wouldn’t have been able to find that information myself or if I did it would have been a struggle to get all that information. It would have been draining to search for it. Somebody came and spoke to me and it was done. They didn’t just pass me leaflets, they physically came and spoke to me for a good period of time.
Involving the children
My children were six and ten at the time. They’d always been close to my mum and she’d always played a big part in their lives. I was talking to my husband about which way to go; do we bring the kids to The Hospice to see mum, do we get them involved, do we allow them to see mum really poorly? That’s where I was 50/50 but I’m so glad I found out what St Helena could help with.
Mum had lived with us and I had been her sole carer, the children had always seen nurses and doctors and medication, so that wasn’t such a bad decision for me to have to make. But it was the decisions after my mum died; do I allow them to go say goodbye and do I allow them to attend the funeral? How do I go about speaking to them because I’m a mess myself, so how do I turn around and tell two young children nanny’s passed away? But here was a lady who came in and really helped with speaking to the children and give us some time as a family. We sat in a really nice lounge at The Hospice and just reflected.
This will be the second Christmas without mum. Last year was hard. It was strange because I even remember fireworks evening being really hard - and mum hated fireworks. I remember watching a display and I just fell apart. I couldn’t believe it. Maybe because I hadn’t really grieved before and I didn’t expect to feel what I felt. And Christmas day I tried to hold it together as much as I could for the children. Christmas was hard.
Remembering good times
There is a wide range of services and people. It’s quite amazing just what things there are going on. I had the counselling, I had the complementary therapy, I had the help with the children, help with the funeral directors. I would say to people to definitely ask to speak to somebody as soon as possible. Get there early as possible because the time does go so quick and the more help and support and guidance you have right from the start, the easier it will be to follow all that through.
And The Hospice is really not a scary place. It sounds like it is but actually when you get there… we even witnessed a wedding, it was beautiful. We took our dog in there because she wanted to see the dog. I can’t believe what went on in there in those few weeks and I will always be forever grateful for the help we go. It was amazing. It really did help. I do the hospice lottery now. I’ll always continue to raise money. I’ve just booked for my husband (Mike) to jump out of a plane on 1st March!
I did the Midnight Walk in memory of mum with my sister and a few close friends. It was a really good evening. It’s such an uplifting event that it’s just a great buzz really. My legs were hurting the next day though! It was great, a really good atmosphere and we’re going to do it next year, it’ll be our little thing now that we do each year, a memory thing.
I got the forget-me-not flower too which is beautiful and I’ve got it in a lovely pot. Things like that have helped because it’s a positive remembering, it’s not a sit there and think of the hard sad times, it’s remember all the good times.
And we’ve got the big Star of Hope Winter Charity Ball on 24th November which we’re going to raise thousands of pounds at. St Helena is struggling for funds. They do so much and I can’t believe it’s all charity based with everything they do, so hopefully we’ll raise thousands of pounds in November.
There’s loads of entertainment in place; fire eaters, some little children performing the winter wonderland, a choir, a rat pack singer, an auction, a raffle… it’s going to be a really good event. We need to hit the maximum so we can raise the most amount of money. Mum loved a party!
The Star of Hope Winter Charity Ball raised an incredible £4,915. Jade's children wrote a poem each about the Hospice which were read out at the event:
To contact the St Helena Fundraising team, please telephone 01206 931468 or email firstname.lastname@example.org , Monday to Friday between 9.00am and 5.00pm.
24 hour advice: SinglePoint 01206 890 360
SinglePoint is a 24/7 advice and support helpline which helps to coordinate an individual’s care with the hospice. SinglePoint also works alongside other healthcare services such as GPs, Community Nurses or Specialists.
To contact a patient at The Hospice please find the address and telephone number below. Phone calls can be made to patients at any time of the day or week. You can contact Inpatient Services 24 hours a day, 7 days a week.
The Hospice, Myland Hall, Barncroft Close, Highwoods, Colchester, C04 9JU
Telephone: 01206 845 566
You can contact The Hospice in the Home Team Monday to Friday, between 9.00am and 5.00pm on:
Telephone: 01206 845 566
Tendring community team
Telephone: 01255 221 222
You can contact the Joan Tomkins Centre (Colchester) Monday to Friday between 9.00am and 5.00pm on:
Telephone: 01206 848 163
Fax: 01206 752 245
You can contact the St Helena Tendring Centre (Clacton) Monday to Friday, between 9.00am and 5.00pm on 01255 221 222
Tendring Centre Postcode for Sat Navs: CO15 1EU
The HR Team can be contacted Monday to Friday between 9.00am and 5.00pm on 01206 931 466
To contact the St Helena Finance Team please telephone 01206 931 450 Monday to Friday, 9.00am to 5.00pm
The Volunteer Services team can be contacted Monday to Friday between 9.00am and 5.00pm on 01206 931 466
For all media enquiries between 9.00am and 5.00pm, Monday to Friday, please phone the Marketing and Communications team directly on 01206 931 464
If you, or a member of your family has a life-limiting illness and would like to discuss whether St Helena care services can help, you can contact the SinglePoint telephone service 24 hours a day, 7 days a week on 01206 890 360
To contact the St Helena Bereavement Support team please telephone the bereavement helpline: 01206 984 274, Monday to Friday, 9.00am to 5.00pm
The Learning and Development Centre is open Monday to Friday between 9.00am and 5.00pm and can be contacted on 01206 851 560
For more information on the St Helena Service User Group please contact Chair, Ken Aldred on 01206 751 397
To contact the Lottery team please call 0800 285 1390 or visit the website here, Monday to Friday between 9am and 5pm.
If you would like to write to or visit the Lottery team, the address is: Your Hospice Lottery Office Unit 6 The Atrium, Phoenix Square, Wyncolls Road, Colchester CO4 9AS.
Feedback, comments and complaints about St Helena care and support services may be made verbally or in writing to: Director of Care, St Helena, Myland Hall, Barncroft Close, Highwoods, Colchester, CO4 9JU. To speak to a member of our team, call 01206 845 566