Denise’s husband, Richard, was diagnosed with motor neurone disease (MND) in 2021 and was referred to Phyllis Tuckwell. Since then, our Living Well team has supported both Richard and Denise, through individual appointments and group sessions at the Beacon Centre in Guildford, and visits to see them in their own home. Our support isn’t limited to our patients, but extends to their families and carers too, who may need both practical and emotional support to help them look after their loved one. Many carers have other commitments too, such as work, or children to care for, and may not know about the range of help which is available to them.
"Richard is totally supported by Phyllis Tuckwell,” said Denise. "They’ve been amazing, we couldn’t have survived without them. His condition changes all the time, and they manage to adapt every time to the new things. They know what his next need is before we do; they’ve been instrumental in bringing things that he’s needed into the home. We haven’t projected forward, because with MND no two journeys are the same. They’re very good at staying at the level that you’re at; they don’t frighten you with what they know is in the future. My husband is very different from me, he wants to know what’s happening, and what’s going to happen, whereas I like to stay in a ‘happy bubble’ as I call it, where I don’t know what’s coming next.”
Denise cares for Richard at home, as well as looking after their two teenage sons. She has found support from our nursing team and through our Carers’ Support Group, which meets once a week for six weeks, to offer peer support and discussion around different aspects of living with an advanced or terminal illness.
“I know with Phyllis Tuckwell I can ring them at any time and someone can speak to me. They’re experienced in all different conditions. They kept me in the loop with the things that were coming up, like the support groups. At the beginning I couldn’t really leave my husband, so it was very difficult to join in, and it wasn’t really until later that I needed that support. In the early days of his diagnosis, my husband and I could speak to each other, but latterly he has sadly lost that ability. So for me, knowing that there are professionals that you can reach out to for anything, has been brilliant.”
Our Carer’s Group Sessions cover topics such as resources available to carers, forward planning, how to manage relationships when they change, coping strategies, and what to expect when your loved one becomes more ill and when they die.
“It was nice to feel you’re in a group with other people who are all carers. There were all different conditions, not just MND, so everyone has their own experience as a carer. It was great to be guided through different services that are available, financially as well as emotionally. Every week it was a different topic. In the first week we talked about ourselves and our story; a little bit about our background. This gave us the opportunity to get to know a bit about the other people that were in the group. You learn very early on that it’s a safe space, so you can say anything you like in those sessions. They talk through practical advice, things like where else you can get support and how Phyllis Tuckwell can help you. It was very varied and covered a lot of subjects. As the family or carers of patients, we don’t know what’s out there at all, it’s a completely different ball game that we’re in. We don’t choose to be carers, we’re here by unfortunate circumstances. For me, it is good to know that I can reach out to the professionals who know and understand what is needed and can either help or guide me to where I can get help.”
“There was one session on the end of life, which as a carer you might not want to hear quite yet. The good thing about Phyllis Tuckwell is that they’re aware of that when planning the meetings. Every week we would get a reminder of what the topic was that week and then we could duck out if we wanted to, if we weren’t ready to face any end of life conversations. We could then be asked to that session in the next six-week block. That gives you time to build up to those difficult conversations. It was good to be in a group that was supportive; you feel like you are in the same boat together. As a carer I feel trapped in a place where I need to be with my husband, but I don’t want to share my anxieties around his condition, so at times I feel very isolated.”
Throughout the sessions, we all had a lot of emotional support around all the topics. There is a familiarity; you get to know the others over the six weeks, and you can stay in touch if you want to. I was able to give my contact details and if anyone from the group wanted to contact me, they could.”
“In the final week, we had a summary of what the sessions had covered and were given opportunity to share our thoughts on how we felt at the end of the sessions, and to give any feedback we had. This helps Phyllis Tuckwell to gauge the usefulness of the topics for the next block of sessions. I missed a couple of the sessions because of commitments at home, but I was reminded that I would be invited to any that I missed or didn’t want to be a part of that time around, which was good to know.”
As well as offering information and advice, and signposting Denise to other places where she can get support as a carer, we’ve also helped her to get a gym pass, so that she can go swimming, and have offered her individual counselling sessions, where she can talk to one of our specially trained counsellors.
“Being able to go swimming is good for my mental health, so Phyllis Tuckwell in that way has taken care of me. As my husband needs more care and we have a care package in place, I feel able to spend a little bit more time away from the house. Swimming helps me to escape, and I can also meet up with friends and take our boys out for a coffee. I’ve had counselling from Phyllis Tuckwell, and that’s been very useful. We have teenage sons who are going through school, and they’re watching their dad deteriorate and watching me struggle with everything, so the counselling has been amazing. I had about 10 sessions, which finished last year. I know that, should I need any more, I can request to be put on a waiting list. This is good to know because, as my husband ‘s condition changes, I may need the help of a counsellor to guide me through my feelings in a safe space.”
"Richard feels reassured too; he knows that I’m cared for and looked after emotionally, and there’s someone I can talk to. Sometimes when someone’s suffering, they don’t want to talk to you about their feelings and anxieties and you don’t necessarily want to share how you feel with them either, so having the support of somebody outside of family and friends is important. You can voice your worries with a professional therapist who understands your concerns. It is another one of the great services that Phyllis Tuckwell offers to carers. It is also available for our boys too, if they want any support. Phyllis Tuckwell has given me some leaflets that I can leave around the house for the boys to read, should they want to, although so far the boys feel that they are ok.”
“When you’re told you’re being referred to a hospice, you go to a completely different mindset of this is the end of life but in reality, it’s not. It’s a support network that is there for whatever journey you are on. We don’t know how long that journey is, that’s the thing about the condition my husband has, things can change on a day-to-day basis. The support we have had has been amazing right from the get-go, for him and then gradually for me too. Anyone from the team who visits Richard always asks me how I am when they come and see him, so we feel that we come kind of as a package really, which is good. You feel like you’re part of the Phyllis Tuckwell family - him being cared for and me being supported.”
Richard and Denise are visited at home by different members of our Living Well team. Lyn, our MND clinical specialist, acts as a single point of contact for Denise and Richard to the team, which includes occupational therapists who advise on and can provide some of the equipment that Richard needs to help him remain independent and manage living everyday life, physiotherapists who can help him with strength and movement, and complementary therapists who can provide massages to relieve symptoms such as muscle pain and stiffness.
“We have people come to the house often, and more so latterly. The support is always there, whatever your stage is. They know ahead of the game what the next thing is, so they bring that support in, but all of them have been amazing. We can also ring the nurses; they just say just ring anytime, and we’ve got contact numbers for nighttime and daytime. Although Richard's not an inpatient, you can still have support from the nursing team if you’ve got any queries in the middle of the night, or any problems. Lyn comes around quite a lot, and sometimes she does joint visits with some of the other services that support Richard. All the teams come from Phyllis Tuckwell or are connected to us through Phyllis Tuckwell. The complementary therapy is for both me and Richard. You can have anything done - head massage, back massage, feet, hands. Richard has his feet and legs done, as he’s had problems with his legs and his feet. He’s never been into anything complementary ever, but this has made a massive difference to him, because parts of him can’t move anymore but they can be massaged, which has been fabulous for him. We’ve had four sessions each. It feels like everyone is a part of one team and everyone’s in contact with everyone else. It’s a whole team that looks after Richard. It's been a really good experience.”
Because Richard was referred to our care as soon as he was diagnosed with MND, we have been able to support him as his illness has progressed. Our team has been able to provide him with the equipment and guidance that he and Denise have needed at that time, and help them to be ready for what will come next.
"At the beginning there were a lot of dietary changes and Richard had to have a PEG (a type of feeding tube) fitted, so they guided us through that. The occupational therapy team have been brilliant as well. They’ve brought in different things that we’ve needed to make life easier - hoists and standing hoists, and then moving to the next hoist. They’re always assessing is there anything else we can do? You explain the difficulty and they come and assess and say right we can try this now. They try lots of things, they bring lots of gadgets into the mix, which has been really good. They work with you until everything’s stable and then the teams just check in with you every now and then. Once Richard’s on an even keel we can be left for a little bit, but we’ve got their contact numbers if we need anything.”
MND often affects patients’ speech, and Richard’s speech and language therapist, Marianne, suggested that Richard might like to have his voice banked while he was still able to speak. Voice banking enables a person to record themselves saying words and phrases, so that when they can no longer speak, they can use these recordings to communicate with others. Electronic voices are available for them to use, but banking their own voice means that they can continue to communicate using their natural voice, which is important both to them and to their loved ones. Richard is also using a new form of technology called ‘eye gaze’, which enables him to select words or phrases that he wants to type on his computer, or for his recorded voice to say, just by looking at the words.
“The eye gaze is basically a tablet that’s on a stand that he can make eye contact with, and once he’s made eye contact with the letter that he wants he can press a button. It also has predictive text, so once he sees a word he can look at that word or click on it, and it will write or speak. He had been using an alphabet chart, but he can’t use his arms as much now, so he can’t reach across an A4 sheet. As you go along, sometimes with these illnesses you don’t want to accept the next level, it takes a little while, and then you think ‘oh, I see the benefit of this’. Now he is more conversant, he can say more to us and we can have more conversations. Having his voice banked, after his diagnosis, means anything he writes comes across in his voice, which is good for the children. He’s also got his voice banked on his phone, so he can speak through his phone to us in his voice, and he writes texts. We try to keep hold of him as much as we can.”
“Phyllis Tuckwell have been brilliant. After the diagnosis, our first letter was you have MND and you’re under Phyllis Tuckwell, and you think ‘oh that’s it’ but actually it’s not end of life, it’s just making life comfortable. Richard’s not bitter about it or annoyed or cross, it’s just ok this is it, let’s crack on. We live every day at a time and that’s the good thing about Phyllis Tuckwell, they live every day at a time. That’s the only way you can survive it, I think.”
