‘I associated Blythe House as a really bleak, “end of the road” place – but actually the minute I arrived, I felt like I was on this lovely warm bus and it is just such an embrace.’

Lodi

Lodi became ill in 2015 and advanced very rapidly downhill after receiving multiple diagnoses, including Parkinson’s and motor neurone disease, in February the following year. After much persuasion, the Chinley resident started to attend Blythe House Hospicecare at the beginning of 2017, and now after being discharged, Lodi says: ‘It’s wonderful, it’s unbelievable, and it’s very special to have that service.’

She explains: ‘I associated Blythe House with a really bleak, “end of the road” place; I thought “if I go there, it will be very depressing.” I was worried about the vibe, and I was just very afraid. My healthcare team leader, Jackie, kept gently encouraging me and saying it would do me good.

‘When you have an illness like mine that rapidly progresses, it’s not just difficult on yourself, it’s difficult for the people around you too. My daughters Zara (13) and Pippi (11) found it extremely difficult to come to terms with my illness and you just feel very isolated and alone. As well as me, Blythe House has supported by eldest daughter by offering her counselling and allowing her space to come to terms with my illness.

Zara and Pippi

‘I think what I did find really hard was that when you have an illness like mine, you almost start to lose something of yourself and you feel trapped; that was my problem. People worry about coming to see you as they might think “oh Lodi might be having a really bad day, or she might need to sleep or get some rest,” so the illness has acted as a blockage to family and friends coming to see me.

‘So I thought “OK, I’m going to Blythe House! I’m going to give it a go!” And actually, the minute I arrived, I felt like I was on this lovely warm bus; and from the word go I could just be myself. Although there are people here with different illnesses to me, it really helped to know that they are there and that I still feel part of a special group; I didn’t have to put on a brave face, I could just cry. If I couldn’t hold my cutlery, if I choked on my food, it really didn’t matter here, I could just totally chill, and that’s been so important during my illness.

‘You really do associate hospices with all of the bad things, but Blythe House is such a positive place! I used to get my nails done, and Cathy [Grange, Beauty Therapist], went to great lengths because my right hand used to curl up into a fist and my fingers wouldn’t open properly so she would put a nail varnish pot in-between my fingers and my palm so that they would rest on the bottle rather than in the palm of my hands. It’s just thinking of that, and the great lengths of care that people go to, to make sure I didn’t miss out on getting my nails done. The staff and volunteers at Blythe House go the extra mile, they really do!

‘I went through a period where I was really very sleepy and the nurses encouraged me to do some art because I’ve always been very artistic, but with my hands being weak and spastic I just couldn’t do it anymore. I just thought “it’s going to look rubbish, it’s not going to look like how I want it to look.” Doing artwork really did take me such a long time; it was a real learning curve and the staff and volunteers kept gently pushing me. Then they helped me to make a butterfly, I was very sleepy but I look at it today and the emotion I feel is just overwhelming because it’s thanks to Blythe House that you made me realise, it doesn’t matter at what stage you are in your illness that you can still achieve. To give that to people when they’re so ill is an amazing gift, it really is.

‘With my illness, my quality of life has really declined. I always worry that I can’t properly take care of my girls, I can’t go silly dancing with them or go on the trampoline – or say “let’s go out for the day.” You feel so guilty but coming to Blythe House, I feel that that aspect of my life has started to build back up again.

‘The catering staff here went to great trouble to make sure my food was right just for me because I couldn’t chew or swallow properly. They always made sure it was the right consistency; not too runny, too solid or too mushy, because if it was my tongue couldn’t cope with it. The staff were brilliant, making it right for me so that I could have my lunch here, and enjoy it!

‘I was in an electric wheelchair and I struggled with my speech; it was very complex, I had a lot of spasticity which effects your mobility and I had a horrific spastic attack. They couldn’t move me because it would have been so difficult to move me from a chair to the wheelchair but the nurses were so patient, and they helped get me into a friend’s car to get me home.

‘The volunteers are also amazing; you feel like you can talk to them. At a time that I was really ill, Simon [Cocksedge, Spiritual Care Leader], came to sit with me and I just completely let it all come out; it didn’t matter that there were other people in the lounge because you feel like there’s such a privacy there as well; people can be crying, people are talking about their medication or how they’re coping with the illness, you don’t have to put up a front, you can just let it all go. I think that’s invaluable, it’s wonderful, it’s unbelievable, and it’s very special to have that service.’