thank you, more and redreaming
hello everyone,
I'd love to reply to everyone individually, but a group reply seemed better - I am so grateful for all your responses, and I'm feeling like my feet are firmer on the ground for it. I've never found the idea of going to a support group appealing (tho' I think it definitely has its merits) but this is perfect! I think sometimes part of feeling so anxious about our situation is feeling isolated with the experience of continually losing someone, like watching a gradual unbecoming, and the cycles of grief that go with that. My friends are wonderful at listening to tears and doubts, however, being in contact with others experiencing the same, and so generously sharing it, feels a huge comfort.
I work in London, but am visiting home in Bristol this weekend. I have 2 younger siblings, my bro also working in London and my sis in her first year at uni. Being the oldest and who I am I sometimes feel a lot of responsibility and weight. I'm grateful to be able to dip in and out- it's my dad who has to do the weekly caring and who coordinates day centres, carers etc. Back in March my bro and I looked after mum for a weekend, which felt draining after a week atwork, tho' I know it's what many people have to do. I prefer to come home when my dad's here and help by cooking, leaving cakes/meals, taking mum out, giving her a shower etc. We are lucky to have good contact with a Clinical Psychologist, social worker and relevant organisations. I suppose sometimes I end up worrying about him too, tho' he seems to be doing well and being sensible about asking for help and taking time off - a steep learning curve, but essential.
It can be hard to have not been home for a month, and then to come and see how mum's changed. This weekend has been positive however in the sense of being able to share some of my feelings with my dad about how tough this is. Sometimes I get such a basic child-like craving for my mummy, usually when I'm feeling low, and that's when the pain of her not being there as she might have been is worst. Recently she came off aricept as her latest examination showed she'd declined too much to be on it on the NHS - for me somehow that felt like a huge shock or like a rubberstamp on the reality of the further continual decline we've got to face and that scares me sometimes.
Margarita, your words reminded me of something I often think of - sometimes it helps to think of it as mourning the loss of dreams... what might have been... relationships that might have been mended, grandchildren that might have been seen, conversations, holidays... But, you then get to redream, create a different narrative to be part of and make part of you, your wisdom, beauty, experiences. I do a lot of writing which I find helpful - someday I hope to write a sort of problem solving book detailing difficult situations one's likely to encounter when living with someone with dementia, and how to work your way through them and out the other side.
Sometimes I just want to get on with life, sometimes one has to find the humour, beauty, sometimes cry, be angry... or just stop, which is what I've just done and taken time off work to go and stay with my aunt and some friends.
A long posting - take care of yourselves and listen to your intuitions and needs when you can. Looking forward to being in touch more.
H
