Know What? Mom Still Has Parkinson's!

           I mean after all those pills, the attempts at physical therapy, trips to different neurologists... not too mention all the comforting i've done (Oh yeah and all the help i get HA!), all the hours spent by her side... She HAS to be better, right?  Ok all joking aside, i really hate this disease.  And the meds. Still.

Also, I've done what i swore i would never do. I've moved back in with her 4 nights a week.  And maybe it's just me but it seems like she needs me even more now that I'm here.  This experience continues to baffle me at every turn.  Recently my brother and an old friend of my Mom's, who has "stepped in" to "manage" her care, tried to remove me from the central position i have held in assisting her for, oh, 6 or 7 years now, bringing in a slew of part-time help, claiming "i" wasn't in her best interest.  I was insulted, indignant, and amused.  I tried to compromise with them, and when that didn't work I just moved in and started sending people home.  I hate having to care for my Mom, but i cherish the opportunity to do it.  I've put any semblance of a career on hold to rub my Mom's hands and feet when they're cramped up.  And that's fine with me.  I'm astonished at the lack of participation by the people she's called good friends over the years, and how she's relegated to ranks of those who need assisted living. And the people who are supposedly working in her best interest? I don't know, i'm grateful, but they just don't really get it.  They say things like "they're doing the best they can do", or "as good as possible".  Not in my book.  Fact is, most people treat her as if she's already dead.  And she's far from it, let me assure you.  All the research I've done indicates a long, miserable road ahead for us.  I have faith in her, that she can develop a better attitude to help with the horribleness of it all.  Maybe I'm naive.  Maybe I don't understand what she's going through.  The feeling of helplessness really sucks sometimes.

She's my Mom.  And I'll do whatever I can to help her, be with her, no matter what the cost -financially, physically, mentally, or emotionally.  And if I don't stay at the center of her care?  Sadly, i'll probably never see her.  I'll work some suck-*** job and be too busy to come over like the rest of her friends and my brother.  Yeah, it hurts to say that.  Especially when I love her so much. 
johnnybliss johnnybliss
41-45, M
3 Responses Jun 2, 2010

Hi,<br />
<br />
How have you been since the last time we talked?

Thank -You for being here, I really mean it.

The home health aides care is limited. They do some things but not everything to care for those in need. Really even in assisted living they only care for the daily needs and drugs (Rx). They do provide some social events and activities; yet, its not the same as living independently. <br />
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You're right, its like the person is waiting to die. Most of their day is spent roaming around, reading or watching cable. The things that are available to keep the mind sharp and the emotions upbeat just aren't provided. I've asked over and over for some kind of psychiatric therapy for my dad and its just not available. In assisted living Rx pills are the solution for everything. Which I don't agree. Mentally you can cure a lot of sadness, anger and depression without Rx, just positive mental stimulation goes a long long way. At this time those types of therapies aren't available. Only physical and occupational therapies. <br />
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Oh yeah, people are busier and don't have 'time' for their friends anymore when this kind of disease comes along. They'll call every so often to see how they've been but really there's no emotional or mental connection anymore. The person with parkinson's or the person who used to be friendly. Its hard having a relationship with someone whose diseased. Their mental situation is limited and lots of people don't know what to say. If its cancer or something like that usually the mind isn't effected and there's a hope of getting better or going into remission. Parkinson's is a terminal type of diagnosis. There's no cure, its just a managed slow painful existence. <br />
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I know if I'm ever diagnosed I'm just gonna sell off all my stuff and commit suicide. I couldn't stand it. I don't see how my father does it. I know he sticks around for his family; though, that wouldn't be enough for me.