Helping Those Who Care for Parkinson's Patients
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Sorry to be posting so often these days but I really need help in understanding. He eats almost nothing ... maybe 5 or 600 calories per day and that he gets from a little cream of wheat in the a.m.; small glass - about 3 ozs ensure with ice cream, half and half and 1/2 banana mixed in .... he usually refuses to eat any dinner at all ... drinks maybe 6 ozs water per day, 4 ozs orange juice in the a.m. and 2 or 3 cans of carbonated soda to quench his thirst (he doesn't really like it) All he wants to do is sleep. Goes to bed around 6:00 p.m. and I need to force him to get up at around 10:00 or 10:30 to clean him up, change diaper, etc. I force him to change positions and sit in chair upright. He has a threatening bed sore on his tailbone that is angry and bruised but hasn't broken through the skin .... yet. He started this downward spiral only 4 months ago and its been dramatic and steady. Up until the trauma of the surgery he had a very slow progressing parkinsons. Now its rapid and swift. He's gone from 160 pounds to 110 pounds in this short period of time. My inclination is "I love the guy; it pains me to see him forced to do what he doesn't want to do; why not just let him sleep if that's what he wants; why force him to eat when he hates it so?" and on and on and on. I have called hospice and even though we have no 6 month prognosis, I'm afraid this is the beginning of the end. I don't want to hasten it by not forcing him to do what I think is good for him but neither do I want to prolong his awful quality of life! I'm conflicted, confused, saddened and very very frightened!!!! |
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| Punky, All of this spiral and quick decline seems to be result of the operation and ensuing complications. I'm really not sure what to tell You. However, You might want to copy the post and call the Neurologist, the primary care Doctor and request a copy of their notes. Then (even if you use only the past couple of years notes) staple them together and request the Doctors to read them. Is there a teaching neurological hospital in your area? If so contact them and send the papers to them also. Educate them as to what's going on, pick their brains for assistance! If you get "I've never heard of that happening" tell them well it's about time you did! How many times on this forum have posts appeared from a baffled, scared caretaker asking for help and guidance because of a downturn after surgery? This is a small population here of the whole Parkinson's community and We read all to often of post surgery horrors. I mentioned a teaching hospital before because the are training new Doctors and bringing these problems to their attention will enhance their training and position in standings for funding and students. (which also may need to be brought to their attention if you get no results from them at initial contact.) I wish you the best of luck, take care and hang in there. Sincerely Al |
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| In addition to seconding what LOHENGR1N said, I want to tell you that he needs a MINIMUM of 1,000 calories a day just to properly function. Make sure that whatever you feed him is extremely high-calorie. Taco Bell works. |