 |
 |
Reply to message from [log in to unmask] of Sat, 29 Mar > >Dear List Friends.... > >I've been following this thread and thinking about it since it began, tho have >made no comments on it till now. My response is to the LIST, rather than to >any one individual, and if anyone is inadvertently hurt by the response, >please accept my apologies now, as that isn't my intention. > >I've had PD for 21 years, have had a unilateral pallidotomy 2 1/2 years ago, >and take a modest amount of Sinemet 25/250, plus a CR 50/200 "chaser" daily. >I'm 54 years old... (establishing credentials to let ya know where I'm coming >from) > >I'm not afraid to hear about or discuss death or dying because that's a >natural part of living and ultimately will effect us all no matter how we may >resent it and kick and scream about it on the way out. > >I've made myself aware of every nuance of this disease that I could over the >years, no matter how painfully some of the information effected me emotionally >as I found it out. And believe me, it IS painful... 'case there's eventually >only so long one can deny what may happen in the future 'cause that future has >a way of becoming "now." > >I read with compassion and also understanding each List message that comes my >way, yet have found myself loath to do so with this current thread. This is >*NOT* because I don't believe this forum is the proper place for a caregiver >of family member or even a friend of a person with Parkinson's shouldn't or >can't speak out here - they certainly can, as I see them as much in this venue >as I see others like myself. > >HOWEVER... I find it impossible at this point to separate my HUMAN feelings >from my feelings as a person with PD when reading the posts in this thread, >and the individual with Parkinson's just HATES to read these posts from >caregivers/family members of a Parkie suffering severe dementia, >hallucinations, loss of nearly everything we all need to function as human >beings in a not-particularly sympathetic or understanding society, and just >plain loss of SELF. >And I didn't even mention the stories from those who have felt it necessary to >place a loved one with PD in a hospital for whatever the reason or a nursing >home or other such care facility. IF any of us on the List was at THAT >point, we wouldn't be capable of posting here or reading these messages. A >scary future possibility for all, I'd think.. > >And of course there's that "end-stage Parkinson's," which is usually rarely >mentioned by the general Parkie community here on the List (but apparently is >subliminally on the minds of many of us). It's rarely mentioned here because >the fear of even THINKING about that, much less reading of it week after week >as viewed by various caregivers/family members who have posted their >experiences in their capacity as caregiver is EXTREMELY FRIGHTENING to many of >us, if not ALL of us. > >If a person with PD is at that stage of the disease, they're not capable of >posting HERE.... so we're not exposed to them directly to get input. Instead, >we see their personal agony thru the eyes of someone else who is also going >thru a personal agony due to PD, tho a different kind than the Parkinson's >patients themselves. > >I'm afraid I cannot read this thread and nor do I find it possible to hit the >delete key as I do with the few other topics I'm not interested in. I cannot >express the suffering I go thru in reading these pain-riddled messages >either... as I ache for us all as well as myself. > >This is not an attempt to censor anyone or to stop cold the thread in >question, however, please keep in mind that there IS a caregivers sublist >adjacent to THIS List JUST for the kind of discussion which has been carried >here on the PD List-proper out by the assorted caregivers/family members in >this thread (CAMILLA FLINTERMAN, WHERE AAAAAAAAAAARE YOU?!) <smile> > >I strongly urge you to consider moving this conversation to that sublist, >because speaking for myself only, this pain I get when reading this thread is >almost overwhelming at times and even if I don't actually read a new post in >the thread, that "subject" line is enough to remind me about the topic. I >can't believe I'm the only PWP who feels this way, either. > >Again, this is my opinion and feelings only which I'm sharing and no pain was >intentionally meant to be inflicted. > >Barb Mallut >[log in to unmask] > Dear Barb, I too feel the same way. Thank you for writing this letter. I have MSA and >38 yrs. old. I understand the pli8ght of caring for a loved one who is seriously ill and then dying, and I try to understand that the caregivers have a need to address their fears and concerns. I don't understand why SOMETIMES the ill person can't have a home health aide. However, that is just my own thought. Anyway ......Again thank you for writing this letter. I appreciate it. I too hope this added support for Barb's letter is not taken offensively. Sincerely, Nancy M. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >---------- >From: Parkinson's Information Exchange on behalf of Naomi Meyer >Sent: Saturday, March 29, 1997 5:14 AM >To: Multiple recipients of list PARKINSN >Subject: The Nursing Home experience > >Hello, all. I've been reading all the communications on the list, but I >haven't written anything for a long time because I've been trying to deal >with the Nursing Home admission of my husband, Dave, since January. After >he was hospitalized for 2 weeks from a psychotic reaction to zyprexa, I came >to the conclusion that I could no longer manage at home without help around >the clock. If he fell, I was unable to pick him up by myself. I could not >leave him alone at all. Since I have a job and for various other reasons, my >only solution was the nursing home. We had more or less expected this -- >Dave has had Parkinsons since 1972 -- and knew this might ultimately be where >he would find himself. > >I can only tell you it is one of the most painful decisions I have ever made. > (As Bob Howard will attest). I had the complete support of my 3 children >and their spouses -- in fact of all my friends and acquaintances, also -- >all of whom told me they don't know how I managed with him as long as I did. > But as all of YOU know, you just DO! > >It's been very painful for both of us; we're BOTH lonely and sad. But Dave >has improved. His mobility is better, the hallucinations are benign, his >paranoia is lessened and there is someone around to meet his needs. I can't >say he's happy, but I feel he is getting good care. My children and friends >visit him whenever they can and we try to take him out for rides and to >restaurants on occasion. I know that it was time. > >I, too, was confused by someone who referred to "the final stages" of >Parkinsons. I would like to know what they are. Since this is a "designer" >disease, as someone said, each patient seems to have different symptoms and >reactions to the medications and deteriorates at a different rate. Dave >really only began to get worse about five years ago -- after 20 years. > >Naomi Meyer, CG Dave 69 /25 > > --