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My mom has had a life long history of bipolar disorder and is now in a nursing home. For the last couple of months she's been in and out of the hospital with fevers and catatonia. A complete battery of tests shows nothing of a physical or infectious disease. The neurologists think she has PSP, progressive supranuclear palsy. At first I thought that this was a cop-out diagnosis, there is no test to validate it and no treatment, but the more I read about the disease the more it matches what she is going through: inability to swallow (now has a gtube), moodiness, eyes not always tracking, spasms through her legs, no longer able to speak clearly. A month ago her doc was suggesting hospice as a way for her to get comfort care because it seems that when people are near her, just sitting near her bed and talking with her she tends to be more at ease. She's been having good moments though lately, where she is more alert, so we have not yet gone through with hospice. Three years ago she went thru a similar catatonic episode where we put a gtube in too, and over the course of three months she managed to come back (although not 100%)enough to be able to eat and enjoy daily activities at the home. Now I don't know what to do. Give her that time again to see if she comes through? Do I just sit with this diagnosis? In a more recent conversation with her doc, her tone about hospice changed, saying that while on hospice it would be difficult to have insurance pay for PT or speech therapy, and that my mom is still young (71) and because she came out of it before, she MAY come out of it again. I was confused that now the doc's tune is changing but maybe it's because she's showing a bit of improvement. She instead is now saying if I can hire a private companion to visit with her consistently and just keep trying to engage her, that this would be beneficial. I feel ok about this, because I don't want to put mom in "a box" yet with hospice. Her vital signs are fine and she doesn't seem to be in distress, except for moaning now and then but when we ask she says she isn't in pain. Has anyone else out there a) dealt with PSP and b) hired third party companions to go into a nursing home? I can go in during the evenings but not during the day. I'm using vacation days now to drop in more during the week, but in the new year, I'm considering requesting intermittent FMLA at work to go in and spend two days with mom a week at the home and supplment with a companion the other days? I don't know if this is going to fly at work though....At this point I'm just looking for advice from anyone who has been through these situations. Thanks and just want to say I hope everyone finds some peaceful moments during the holidays. Maryann

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Hi Maryann,
First of all, if your mom is on hospice and she improves, she can go off. That happens frequently. So you aren't boxed in.
Anyway, certainly you can hire someone to work with her in the nursing home. It may not be covered by any insurance, but it's worth a try. In-home agencies often don't offer medical services, but they do offer companionship. You can also check with your mother's church if she has one. If they offer Stephen Ministers, they are trained to visit with elders with issues. That would be some "free" time for you, though you may want to hire more. Do what you can - maybe she'll come out of this. But if she gets worse, please do consider hospice.
Take care of yourself,
Carol
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I can tell you that in Maryland, Johns Hopkins Home Hospice will send out volunteers while she is in hospice. They will spend approximately 2-3 hours with her. Otherwise, hiring someone is WELL WORTH THE MONEY ! I found a certified aide for $15.00 per hour and she has been a life saver. I almost have my sanity back as a result !!! Family is not always appreciated as much as a stranger, and she has become a "friend" and confidant to my mom, which gives me time to work and have peace of mind. Need I say more !
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It is possible to hire home health companions to come to where ever your parent or senior lives. Establishing continuity in her schedule would be key in helping her 'come back' if that will happen, 'one to one' attention may help her 'connect'. Palliative care is another option to provide the support and medical services she needs while treating this chronic condition. Utilizing any and all resources at your disposal including hospice volunteers, community and church volunteers and hiring professional caregivers all provide your mother and you the support your both deserve. Trust your gut, follow your heart.
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Hi Maryann,

I have been through this with my own mom she passed away in jan oof this year
i miss her so very much, I know what you are going thrugh. I was a stay at home grandma so I was able to take care of her all day. I would love to help you out I do not know where you are but do feel your pain.

linda
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where I live it's volunteering through "caring callers".
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