Where to start… What can we do? My mum has MS and has reached an incredibly low point at the moment. She is wheelchair bound and has been for a few years although until very recently she had been able to self transfer to the toilet or in and out of bed. She has been really struggling with depression and anxiety over the past few weeks - lack of sleep combined with this has really contributed to her decline in mobility and confidence. She has a couple of days ago had a hoist delivered but has spent nearly three weeks either in bed receiving nursing care ( toileting in bed in pads) or accompanied by family as we have taken it in turns to go around to get her out of bed, sitting with her toileting and showering etc. This was designed t do until the hoist arrived. We all pulled together.
The hope was the hoist would give her some independence back but she hates the indignity of everything. She is in a living assisted flat where carers are on site 24 hours a day and she presses for assistance but she hates this - terrified if waiting too long and has an accident. She feels ashamed and says she is in a living nightmare. She is trying to hardly drink to avoid needing the toilet (despite knowing this is really bad) so she needs the toilet less. She is now becoming confused as you would expect. She is safe and the carers are great and we as a family do a lot. But it seems it’s not enough she is scared to be alone.
She does not want to be here and did attempt an overdose a few years ago but is no longer physically able to do anything although she has admitted to health professionals she would if she could. My mum is in such a dark place … we just want here to be as happy as she can be and of course safe. We don’t know what to do… maybe respite… maybe employing a companion…
We just want to help but feel so helpless and we are all living this nightmare with here.