mom has a rare illness called psp, it is very rare, she has a feeding tube, has nomore mobile abilities, cant see, and has no balance, so shlbse cant walk at all anymore, cant even brush her teeth, she isnt able to even pop the cap on the toothpaste open to apply it to the toothbrush, she is able to eat once in a while under supervision, if she starts to cough its a sign that the food is settling in her lungs, phewmonia is a very big cause of death as well as falling, well every time I go there every other day now, she looks worse and worse and is disintergrating badly..............I think she is 70lbs, and just looks terrible, she used to be so independant, now she has to rely on help from everyone and just wont do it, Its just so hard for me to watch this, pretend things are not as bad as they are, when she eats she spills most of the puree stuff all over herself too so its like shes not eatting at all anyway, She is now denying very important medications that are in no uncertain terms helping her stay alive, I am really depressed, as I feel the end is near,,,,,,,,,,,,,,please help me find ways to cope,
I call her too on the cell I bought her, and she cant even open it to answer, and when she does, she speaks with the phone upside down so I cant hear her, this all is really emotionally and physically draining me, any ideas on how to stay sane through this time?
Welcome back neighbor!
I don't even dare imagine the pain you're going through, and wouldn't have a clue how to handle it if it stared me in the face. Still, it's easy to see you're overwhelmed, depressed, frustrated, angry, and resentful. ... Because you care so much. The real downside of these feelings is that they may leave you feeling guilty, ashamed, and anxious; and the harder you try the worse things get.
Find support groups that meet in person, on the phone, and on the Internet; as your own psych or therapist. Don't hole up as you've been doing all these months. I know you're a strong, proud woman but falling off the map to suffer in silence isn't healthy at all. We're here for you. ... I am here and always will be.
Anyway, expand your support network and contact: (1) Family Caregiver Alliance, National Center on Caregiving @ 800-445-8106; Society for Progressive Supranuclear Palsy @ 800-457-4777; and the Eldercare Locator Service @ 800-677-1116.
Good luck girl, and please don't hide from us anymore.
-- Ed
wishing you and your mum well!
all we need is another infection, which in turn into pnewmonia again, and she is so weak right now that she wouldnt be able to fight the infection, let alone all the medicaton she would have to get put into them.....I have never seen my mum so bad off and so weak and sickly, she was always kinda full figured,now she is just a bone, its very sad for me to take in, I was there and just started to get all choked up now that we have a decent relationship, as we never did before we are just really getting to know each orher as well as we never did get along very well, so with that all said, want to let u all know that is PSP is just something I myself couldnf deal with, I would have to say that I would opt out,,,,,,,,,,,,,sorry guys for my sobb story, and thanks for listening
I think you should talk to a social worker preferably form hospice. They can help you come to terms with your moms sickness and possible death. We're here for you.
Sorry no one has answered yet, don't give up on us, this site is very helpful and supportive. Please stick with us and let us know how you progress.