Mum's been at home now going into her fifth week. Discharged in early February, having been told there's nothing more that can be done, so over to palliative care. Macmillan nurses have been brilliant - both in the hospital and now in the community. Lorraine visits weekly, and gives mum the confidence and comfort that she really needs.
Dad's doing brilliantly, mostly. I've not lived at home for over 20 years, and finding the whole thing really surreal. From my father's denial and never-ending optimism through to the endless visits from caring neighbours, relatives and people I don't know. My ability to be the obligating good Asian daughter for these visitors waxes and wanes.... mostly wanes, though if I'm honest. I really struggle with the whole 'Of course, I'll make tea for the five thousand, that nobody will drink, and drop everything I'm doing to just tend to your every need'.. OK slight exaggeration, but I hope you get the picture.
How's it been so far - there's only one general statement I can make - 'it's hard, hard and hard'. Each day varies in terms of mum's physical and emotional health and the dynamics between mum, dad and me. The range of things that Dad and I have had to deal with over the last four weeks has been amazing - from the lowest of low, to the highs of laughing and reminiscing about past family events with mum. Moments of anger, sadness and hopelessness, though try to focus on the present moment as much as possible.
Mum's beginning to get really anxious - I think she's having panic attacks. She describes it as an overwhelming fear or 'dhar' (Punjabi). She had a fright a few days ago - as well as the cancer in her throat, she also broke her ankle before Christmas, so her left leg is in a plaster, so is wheelchair or bed bound. Whilst lifting her from her chair to the commode, she became unsteady for a moment - I held on and she didn't fall, but had a huge fright. This has increased her anxiety to the extent that now she will not get out of bed, unless she has to - holding on for ages before she asks to go to the toilet. And she will only be lifted by dad. I so wish I could make it better.
Feeling exhausted. My employers have been great, enabling me to work at my parents. Most days are OK, I get my laptop out, connect up and get on with work. Other days, I'm exhausted, there are demands left, right and centre, and all I want to do is find a quiet space to just sit and be.
Missing my life, but I'm here for mum. Just need to create that right balance between being there for mum and dad and creating time and space to recharge my batteries every few days.
