After his wife Ann died, Ken Aldred was asked along to a new service user group for people who had experienced hospice care, to help to develop the way St Helena Hospice was run, and soon he began volunteering as chair of the group. Ken continues this role today, 14 years later, and also volunteers as a trustee, chair of the patient and family services committee, and as an ambassador.
I'd heard of St Helena Hospice but didn’t have much of an idea of what they did, I wasn’t even sure where it was. I was aware that it existed because when we first moved to Colchester in 1984, it was when the initial big fundraising exercise was happening so I would have seen it in the Gazette.
None of the people in my family had ever used a hospice, so it was just a name I was familiar with, nothing more. And life was really nice and rosy… until in 1997, my wife found she had breast cancer.
It was a huge shock to us because we’d never had any illness before so we were fairly naïve as far as the health system was concerned. But she had some exploratory work done and the lump did turn out to be breast cancer. She had a mastectomy and chemotherapy, and appeared to have gone away and we thought that was great.
And then about three or four years later another lump appeared. So another operation, more chemotherapy and more radiotherapy. And again we thought we’d beaten it a second time. But it came back in her bones which we were told was not going to go away. And that was about the most traumatic event I’ve ever had in my life.
It completely changes your world view around, so you’re worrying about fairly inconsequential things like what colour to paint the living room or where to go on holiday, and suddenly all that is swept away now you’re looking at health and treatments and medications and hospital appointments.
We really were not sure what to do. We felt fairly on our own. I was still going to work because we still had the bills to pay, but Ann was needing quite a lot of care at that time, so I was working and rushing home and being a carer, and doing the shopping and the housework.
Then a friend asked if we’d thought about contacting St Helena Hospice. So Ann herself phoned up and explained her situation and a very nice lady said ‘well come along and we’ll have a chat’ and she was then accepted into the day services, as it was then.
She went along one day every week and she absolutely loved it. It just changed her life. I think to meet other people that were in a similar situation meant she didn’t feel quite so alone. She just loved the whole atmosphere of the place. It sounded to me a bit like a cross between a golf club and a social club! She just loved going there. She had various complementary therapies but I think it was the social aspect that she liked more than anything. It was just being with other people and being able to talk about how you felt with people who understood; she gained an awful lot from that.
I was told they were organising a carers’ workshop and I thought I’d go to that because, like Ann, I felt alone. I didn’t have anyone to talk to. So I loved that, I found that very useful, just to meet people who were in the same boat.
One of the things I said while at the group was that I was amazed at how difficult it was to organise Ann’s medication. I said, we’re both fairly intelligent people but we seem to be having these arguments all the time about ‘well did you take that?’, ‘yes I’m sure I did’, ‘are you sure or was that yesterday?’ And then somebody said ‘why don’t you use a pill organiser?’ which I’d never heard of, didn’t know these things existed. So it was going to that workshop that sent me out to the chemist to buy one of these organisers and that solved the problem. If the pill was still in the box it hadn’t been taken, if it wasn’t there, it had been.
Looking back, we were just so naive about what support was available and I was surprised how little information we got about some of the things. We didn’t even know the questions to ask never mind understand the answers. I didn’t realise we could get medication prescriptions delivered, so I’d rush home from work, get Ann some tea and then rush off to the chemist to get her prescription. I didn’t realise I could have got that organised, nobody had ever mentioned it. Standing in a queue at the pharmacy was a real pain when I really wanted to be at home with Ann.
In hindsight we just knew nothing about the health system at all; we’d never been involved in it, and suddenly overnight we had to be. It was a very, very sharp learning curve.
The carers’ group was superb. They taught me what was going to happen, what I would need to do afterwards in terms of the admin, what sort of things to look out for. Just having a little bit of information in advance takes the stress away and the carers’ group was great for that, so I was always eternally grateful for going on that one. I really nearly didn’t because I wasn’t a great one for going on courses, and there was so much else going on that I thought can I really spare an afternoon to come on this? But it was so useful I was always really glad I did.
It’s difficult to describe to somebody who has not been there, how lonely and exposed you feel having the responsibility of caring for somebody without the knowledge that you need and no back up. You just feel totally on your own and hoping that nothing is going to happen. I wish SinglePoint had been there at the time. I would have paid a lot of money to have had that there.
It’s strange being a carer, because in one respect you are an amateur and in another respect you are an expert where the other person is concerned. So I think sometimes when a carer says to a professional ‘I think this is serious because it’s never happened before’, they’re in the position to know that something’s not normal and yet quite often they’re not listened to. It is a very strange position to be in. Quite stressful. You can say this doesn’t look like anything I’ve ever seen before, so I’m taking it seriously but sometimes it’s difficult to convince a professional of that because they see you as an amateur, which in all other respects you are.
I couldn’t believe how stressful it was and I didn’t appreciate how much toll it took on me. I think when Ann died, I didn’t feel back to normal again for at least six months. I was absolutely exhausted. I was running on empty both mentally and physically but without realising it. I’m sure other people probably noticed it. I was, so I’m told, a lot snappier or volatile than I normally am. I remember going to the pharmacy one night and they had half the prescription and I had to come back the following day for the other half, and I just lost it because I really didn’t have time to go there twice. And that’s very unlike me and then I apologised to the assistant, it wasn’t her fault. I thought oh gosh this is getting to me. But you just have to cope, you’ve no alternative.
So that carried on for probably nearly a year, and then things deteriorated fairly rapidly. I always remember, her nurse visited and found Ann in quite a confused state. She arranged for Ann to go into the Hospice to see if she could become stabilised, which was a bit of a shock because we suddenly thought, oh gosh that’s the next level.
So we went along to the Hospice, at which time I thought I was coping all right but I didn’t realise how near the edge I was. It was the first time somebody spoke to us separately; a nurse did an assessment of Ann and a different nurse took me to one side and asked me how I was getting on. Nobody had ever done that before, and I’ve never forgotten that. In fact, all I did was burst into tears and just say how awful it all was, how I didn’t quite understand what was happening, and questioned why it was all happening. I just thought it was wonderful someone asked me. Nobody had ever done that.
I think everybody just focuses on the patient and sometimes sort of ignores the fact the partner is probably under equal but different issues and stresses.
The other thing was someone asked her if she would like lunch and she asked for some fresh pineapple and I remember thinking, well you’ve no chance of that. But within five minutes a plate of fresh pineapple arrived. I think things like that make all the difference. It just made the whole assessment process of us thinking, this is somewhere special.
Ann was in the Hospice for a couple of weeks and then things really deteriorated. And then on 12th April 2005, unfortunately she died. But I was there when she died and it was peaceful. I’d never seen anybody die before; nobody in my family had died in my memorable lifetime. I think you worry about what you don’t know, the fear of the unknown, but it was very calm and very peaceful. Nice is not the right word I suppose, but… yes, it was a nice death.
At that point I just remember going home and thinking, I just don’t know what to do now. You literally go from running around with no time to stop to draw breath, to suddenly having nothing to do. It was like falling off a cliff. It’s quite difficult to explain. I just remember thinking I had no reason to even get out of bed. And then the cats came upstairs and said they wanted their breakfast and that was the reason to get out of bed.
It was just an amazing change from being totally stressed because you are trying to do everything at once, to just wondering what you are going to do.
And then a very nice man phoned up from the Hospice who said he was a bereavement counsellor and was I interested in talking to him. I thought that was really nice so I said ‘yes please’. He phoned every week and we would talk about anything and everything; sometimes about Ann, quite often about how I was doing, what I planned to do. He was a great walker and I like walking so we’d talk about walks. It was lovely. If somebody had said to me at the time did I want counselling or support, I would probably have said no. In hindsight, I think it was very valuable indeed and lovely to talk to somebody who was not a close friend or a family member, but just somebody who you could say anything to at all. I was very grateful for that service which prior to this, I didn’t even know existed. It’s amazing what comes out of the woodwork when you really need it.
And then in 2006 I got a letter from the chief executive at the time, saying they were thinking of putting together a user group of people who had used the Hospice services to get together and talk about their experiences and see if it could be used to help to develop and change the way the Hospice was run. I thought that sounded like a good idea, so I went along. To my surprise – or because I wasn’t fast enough in hiding – they asked if I would chair it. I was quite happy to do that and that group continues to this day and there are a few of the original members still on it. It still meets every month, it still does some good work and I think it has been quite a benefit to the Hospice.
So that got me a little bit involved in the running of the Hospice because part of what the user group does is to ask people to come along and talk about what they do and how they do it just to make sure our knowledge stays current, so you do find a lot more out about what goes on. My experience was simply picking Ann up from day services (I wasn’t quite sure what went on there) and sitting there with her in the Hospice. Then you realise how much more goes on; I was quite surprised actually to see the sheer scope of what St Helena does.
And then in 2011 I got an approach to see if I would be interested in becoming a trustee. By that time, I’d got a bit more experience of what St Helena does and I was also in touch with people who were using the service, so I was quite a useful liaison between the two. I attended my first board meeting in January 2012. The Board were a very nice group of people so I really enjoyed that. As part of being on the Board you go along to various sub committees and the one that interested me was the Patient and Family Services Committee because of my experience there. At the end of the year the chair of that sub committee wanted to step down so I was asked if I wouldn’t mind chairing that committee, which I did and still do.
So now I feel I’m embedded in St Helena but I still like the opportunity to talk to people who are patients and their families. I do still enjoy the service user group aspect because you pick up little things that people have said and you can feed them back in and sometimes make a difference. It enables us to make sure what we’re doing is focussed on what people really want, not what we think they really want.
To actually walk through that door for the first time is quite something. I remember the husband of one of the ladies in our user group was very ill at home but wanted nothing to do with the Hospice. She came to the carers’ group and asked him to come and pick her up. So the first week, he drove up to the door and she came out. The second week she said, ‘could you just come and wait for me inside?’ which meant he then got talking to the receptionist.
And then the third week he thought ‘oh this is quite a nice place’. And then the fourth week, he agreed he would come into the Hospice. He was just terrified to come through the door that first time and then the comment was, like everybody says, ‘I wish I’d know about this sooner’.
This story may not be published elsewhere without express permission from St Helena Hospice.
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