Hello everyone,
I am new to these forums and am hoping to both contribute and learn much.
My mother has PD and I have been her primary caretaker since 1990. I set us up on a small farm so I could be with her 24/7 as the need arose. I am a retired family therapist (Was certified at the National Level.) and knew nothing about country living; however, with our limited income, I could not think of any better way to care for mother. We have been on this little 6 acres since 1995 now, owe no one anything and, though extremely limited, we have more monies coming in than is going out. Thus, we are making it ok.
Now, the situation at hand is this: Mother is now bedridden and has been for nearly a year now. We have a hospital bed, trapeze above bed, side railings (now full length) and a "dependable" CNA who is in our home 4 hrs each weekday. Mother's parkinsons disease, though bad, is not nearly as difficult to deal with as is her depression. She is on antidepressants and has been for sometime, though I cannot tell they are doing anything. While she was still lucid and able to discuss her situation, I promised her she would never be hooked up to anything mechanical to keep her alive. This included "feeding tubes" and "resuscitation". No matter how hard things get, I am determined to keep my word about this!
I have settled in to keeping her clean, as well fed as possible, as comfortable as possible and safe. (I have a wonderful grown son with me dedicated to the same goal concerning his grandmother; thus we are certainly blessed!)
The immediate problem and the one bringing me to this forum is this: Mother cannot swallow well, cannot chew well (no teeth and can no longer wear her false ones) and often has no desire to do so, though she continues to make an attempt. (We are "spiritual israelites" and, thus, any form of self abuse is not an option. To put it bluntly, no matter what occurs, suicide or mercy killing will not be done!) So, mother is literally living off Gerber's baby food, whatever regular food I can mush up well and Ensure. (She gets fed 3 times a day with #3 baby food. I recently started mixing refried beans with it to hopefully help curve her loose bowels. She gets 2-3 cans of Ensure daily with a whole jar of #2 baby food mixed in with each serving.)
In her last visit with the neurologist, I mentioned my concern about her constant loose bowels and what he suggested has given me cause for concern. (Thinking this post is getting too long, I will stop here and see if I can edit it to continue. If not, I will start another post with this same title and "continued" in it.)
Ok, it appears I can edit this one; so, I will continue with a little basic information behind my present concerns. It is this neurologist! Mother's regular neurologist moved out of state and there were only two near us left to choose from. (One I had dealings with before. He had denied my request a few years back for a Rx for a wheelchair, telling me he would not prescribe anything like that unless mother was bedridden. This making no sense to me as I saw the wheel chair as a deterrent to being bedridden, I took Mother to a different neurologist.) This means I only had the one neurologist now to choose. There was termoil immediately as he would not even talk to mother, test mother in anyway and only wanted to concentrate on me. His office also not only double-booked but triple-booked appointments and my mother was in no condition to sit and wait when she arrived. Of course my saying so did not help him focus on Mother; but continued his focus on me. Then the first year Mother saw him his "entire" office went on 3 vacations, closing down the office and I had to take Mother to a regular physician just to get her regular PD medicines refilled during those times. He also wanted mother to come in for office visits every two (yes two) months even though her condition had not significantly changed for years and her getting out of the house was now extremely difficult. Now, this last visit (just last week) his whole attitude had done 180 turn and he actually spoke with Mother ... ummm "to" mother as mother is not lucid most of the time now. He was polite to me and courteous, even stating how it was obvious I was taking good care of mother. He still wanted me to bring her in every two months; but when I told him I would not get mother out that often, he let me state how often. When I chose a "year" with the option of calling for appointment should the need arise, he politely agreed. Now this is all well and good on the surface; however, his suggestion of a means to treat mother's loose bowel movements has made me suspicious. He suggested two things: (1) add refried beans to her meals and (2) decrease her sinemet by a third for one week, cutting it out altogether the second week. ???? Since this has been mother's main PD medication, a red flag went up! Mother is taking Stalevo (150 daily) and Namenda (10mg 2xday) as well and he did not change this. I began wondering if this was not his way to cause mother to "need" to be seen by him often!
Here is why I am posting: Can anyone in here talk about this change in sinemet for the purpose of firming up bowel movements?
Post Edited By Moderator (yekkimo) : 5/16/2007 3:41:17 PM (GMT-6)