Met our Macmillan nurse today,Katy Bontoft for the first time not what I expected,she wasn't wearing the green uniform.It made a pleasant change to see her in 'normal' everyday clothes its easier to relate to,seen enough uniforms in the last week or so!.A very nice lady and to be honest quite relieved to see her finally,seems an age since a Macmillan nurse was mentioned but it was only on Monday afternoon when the district nurse visited.Had a very long chat with her about how we arrived at this point.We covered everything from when Mo started having problems back in April/May this year,her time in The Conquest,Hastings,eventual transfer to Hurstwood park,Haywards Heath,Mo's time in Hurstwood Park & the biopsy right up to her discharge from Hurstwood Park and her re-admittance back into the Conquest because of the seizures she was having and consequent discharge back home.Katy and I discussed Mo's current medication and her reaction to the dosage increases (steroids & Keppra) and the adding of Voltarol 50mg too and how she was generally and how I was coping.
While Katy the Macmillan nurse was here the Hospice@Home nurse also turned up,wasn't expecting her until Thursday,as they knew each other she stayed and we carried on talking.I did have a few questions for the Hospice@Home nurse written down ready for Thursdays visit,only way I could remember them..good plan! but Katy the Mac nurse had already answered several questions,questions like "Can you give Omeprazole with the Voltarol?","Should I get Mo up every day and mobile?",Mo got upset Tuesday because she started thinking about things"Did it mean the steroid increase dosage was working?",so there wasn't a lot more to ask the Hospice@home nurse.I did mention to both of them that I felt I needed to have some 'time out' now as I'm getting a bit angry/frustrated with everyday things,sorting Mo's meds out,trying to get her to wash/dress everyday,her personal hygiene,which is a huge 'bug bear' at present,trying to get her to eat regularly because of the meds she's taking and needing to be more mobile/independent.I realise its extremely difficult and frustrating for Mo too,even more so because she knows what she needs to do but can't mentally or phsically do it.Both nurse said i needed to discuss having a carer come in twice a week and a night carer once a week with Social Services which I will do when I see them Friday.After our chat, Katy the Mac nurse introduced herself to Mo & had a little chat.When Katy had finished she mentioned to me that it may be a good idea to increase her steroids from 8mg a day to 12mg a day because Mo wasn't responding or communicating as well as she would of liked on her current dosage or as mobile. katy said she would contact our GP about the change in meds and it may be an idea to get the G.P to do a house call instead of going to her appointment on Wednesday.Katy arranged another visit for Monday and gave me her contact details just in case I had any questions or queries or just needed a chat.
