My sister is 54 & lives in an awesome RCF. She has had a feeding tube for 5 years because of gastro problems - mostly esophagus. Though she's had a g-tube, she's had a good quality of life, i.e., she bowls, dances, plays bingo, gets her nails done, goes to movies, etc. In the last 6 months she has had one infection after another. Our parents are both deceased & I am responsible for her care. I love her more than I can say & do everything I can for her, even though I have RA myself. In the last 6 months she's gone from infection to infection, i.e., g-tube site infections & problems, aspiration pneumonia, & lastly a c-diff infection. She still has some quality of life but is getting very fragile and frail. How do I know when it's time to start her on hospice? I see her weekly & see her decline. It is tearing me up inside. I've felt responsible for her most of my life. I need support & help on making decisions with her care. Anyone out there who can give me some advice? It's harder watching her decline than it was our dad who died 2 years ago from Parkinson's.
It sounds like you are feeling overwhelmed and lost within the amount of responsibility you feel you have with regards to your sister, who's health you say is declining. You feel as though that you are alone and are not sure what decisions to make and whether any decisions you make will end up being the best decisions for her health and future. How you are feeling is nothing to feel bad about and being a carer carries with it huge responsibilities. Have you considered going to speak to your GP about how you are feeling, they may be able to direct you in the right direction and help bring in support from other health professionals. furthermore if adult social services are not involved they may be able to again provide some level of support and liase with other professionals to help you and your sister. Lastly you may be able to gain some emotional support from a carers association. Here is a number and some details
Carers Direct on 0808 802 0202
Free, confidential information and advice for carers.
Lines are open 9am to 8pm Monday to Friday (except bank holidays), 11am to 4pm at weekends. Calls are free from UK landlines and mobiles or you can request a free call back.
Thank you for your response. I am in the US and feel like there is just no support, no help, nothing for aging Down Syndrome. They have all kinds of programs for parents with childen with Down Syndrome. I just feel totally alone in this. I've been caregiving for too long with a chronic pain disease myself. Some days it's totally overwhelming. I do have a meeting with my sister's primary care and the nurse where she lives on Tuesday to see what step to take next. I was really hoping to find a forum where others have experienced the same situations, but I can't seem to even find that.
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