That's the thing, to be able to care for someone else to this degree, as much as you want to, and as often as you actually do, put them first; really we have to be 'selfish' and put ourselves first instead otherwise we are not going to survive to be there at all. Like the airplane emergency video - put your own air mask on first before helping others. However, it is easy enough to say it but so hard to manage to do, especially where commitment to work is involved. Though I do wonder these days if I could add 'circus skills' to my cv, with all the juggling and plate spinning, and high wire walking it feels like I do daily. When the stresses of work feel like 'respite' from the daily care role,......!! But it is a lifeline to normality of sorts. And maybe we should all consider giving ourselves new job titles as CEO's as we are now pretty much in charge of everything, whether we wanted to or not.
I have just caught up on this thread, wow ; thank you ! Brilliantly expressed!
Even being self employed - artist & having a support worker ( I’m registered disabled) to help with my prep work a few hours a week through access to work ..... I still find myself daily struggling to get time to do my work. It’s hard enough just to keep up with the paper work etc. My Mum & Dad don’t live with me, Dads in a care home, Mum has carers in 4 times a day. Yet I struggle to balance life. So how full time carers manage I have no idea.
visiting the parents -
- one day a week I drive a 5- 6 hour round trip to see Mum
That’s almost a days work in travelling! Then spending time with Mum doing her shopping & making sure any letters still sent to mum are dealt with despite years of LPA we still have to sort some mail out!
Sorting out any issues on home maintenance etc. Meeting health teams etc; all this is done in one day a week ! it’s a good 16-17 hour day. The exhaustion I have the next few days leaves me bed bound & in extra pain - I have acute ME after having TIA’s over 20 years ago. Id like to point out I’m on the higher rate of PIP care but had my higher rate of mobility taken away( yes I contested it all the way but the fact that I drove such long distances went against me along with the fact that I don’t use a stick - I kept tripping over it !)
-Dads in a care home that is not meeting his care needs ( don’t worry folks it’s another thing that’s now in hand !) That has brought extra problems & again it’s down to me to sort it out.
- so my time isn’t my own
- I have a duty of care as LPA to ensure best interests of my PWD are in place
- my life if dominated by sorting out two PWD welfare. Both have different needs & are at different stages.
- my life revolves around ensuring that those daily needs of each parent are met!
no one else will do that
- both parents due to my continuing diligence & care have had the failings of the system highlighted & safeguarding issues raised. These are ongoing for Dad, meanwhile Mum now has the care package in place she needs - but I still have to be the liaison point as her GP failed Mum with dramatic consequences!
- if I didn’t sacrifice my time & quality of life what would have happened to my Mum & Dad?
- Mum wouldn’t have had the diagnosis she so desperately needed & the medication & help.
- Dad would not have had social services investigate his home for failing to meet his needs.
- my Mum who was unbeknown to me in had dementia was caring for my Dad who was diagnosed with dementia......
So to anyone who says well your parents wouldn’t want you not to have a life of your own , I totally agree my parents before dementia would have said that. But this is now my parents with dementia & the normal rules of life just don’t apply with dementia.
it’s a terminal diagnosis which isn’t treated as a terminal disease! The PWD is robbed of the ability often to express pain & discomfort, who else but a loved one can know the little signs that indicate distress.
in all honesty my parents have regressed, my mum to a toddler & my Dad to a baby. That is the stage of their care needs - I didn’t have a life when caring for my own young children & I don’t have one now. There isn’t a difference between the two experiences except funding & my ability to care for the PWD - otherwise the similarities are frighteningly similar.
Yes it’s not fair
Yes it means I have given up so much - work opportunities, social life etc but for Me I know that I have done everything I could have possibly done to ensure that they had the best care in place possible; & when the system failed them I was there to make sure that those failures were rectified.
Yes my own health & happiness has suffered but my parents are at end stage dementia- dignity & being pain free seems to be more important in my mind; maybe I’ve got it all wrong but I need to know that I did everything I could do
sorry folks if I’ve upset anyone but I’ve given u so much because of my parents dementia- perhaps I’m trying to justify it