Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Sam. sorry your Dad isn't doing as well. Not everyone opts for the feeding tube, I hope you ask Hospice about it. Sometimes if people are dying the tube can cause the body to have problems. THe tube is keeping them alive and the body is shutting down. So the body is fighting itself. Glad your sister could be there for a while to help. I'll bet the ramp you had built is helpful if he has to go anywhere. Can he use the wheelchair at all? Sending good thoughts and lots of hugs your way. Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Hi everyone Just a note about my dad he has gotten worse over the past few months but we have had a cpl of good days in between but not many my Sister was in for a month from Cali. shes gone home now but she was a big help to my Mom and myself as well anyway my Dad is mostly in a hospitail bed now the legs not working right all the time, He also had to have a feeding tube put in as he has a swolling problem. Mom is doing the best she can but she is wearing herself out and how do you make someone slow down we also have hospice now as well. Sam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2006 Report Share Posted August 4, 2006 Yes on all parts Janet he does have a pt that comes in but not much luck in that area you know how it is legs only work when they want to we have made all the arrangments for the harvesting of his brain to be given to the MAYO Clinic for study hope it helps others later down the road well anyway we will be praying for you all and thanks for all the support when we need it the most....Sam > Hi Sam, > Sorry to hear that your mom is having such a hard > time. I have experienced the delusional behavior of my > husband thinking I am having an affair/affairs too. > Many of us experience this with our LO. It is part of > the LBD speaking. I have been going through this for > about 3 years now. I have managed to develop a hard > shell against it and don't take it as personally > anymore. I know it is the LBD speaking and not my > husband and I know that I have nothing to feel guilty > about when he accuses me of this, since I have done > nothing wrong to deserve these accusations. I am > accused of affairs with every male in the neighborhood > if I as much shout hello to them across the street. > When I do the grocery shopping, I leave him with a > caregiver and I am accused of going out to have an > affair and it goes on and on, so now I let it roll off > my back and go on with my duties. It is very hurtful, > but it's the LBD, not your dad. I hope that your mom > begins to see that she will have to take a break for > herself once in awhile or she will burn out and wear > down her resistance and then she will be of no help to > your dad. She may even end up in the hospital herself. > She must let go a little now and then for her own > health. I know it's easier said than done. Believe me > I had to work on it, but it is now easier for me to do > and I know that Jim is not going to suffer without me. > He usually forgets I'm even gone until I return and > then he says, " Where have you been, I was calling you " > Which he wasn't, because he had the caregiver here to > help him. > I resigned from work because of sleep deprivation. I > could no longer handle work and being up all hours of > the night and wee hours of the morning. I was sleeping > maybe only 1 to 2 hours before having to get up for > work. It is very hard with our LOs, because they have > no recognition of day and night. > Does your dad have a physical therapist or someone > that can work with him to keep his strength up to walk > if even a little. My husband is in an Adult Day > Program from 10:30 - 2:45 two days a week to keep him > stimulated physically and mentally. There is a > Physical Therapist that works with him there. He needs > assistance to walk with a walker, but he can still get > around with a little help. I use the wheelchair just > to get him around from the living room to the bathroom > on time during the day or to take him for walks, but I > try not to let him sit all day, because his legs will > atrophy from sitting long periods. There are exercises > they can do with their legs to keep their legs more > able to walk. Eventually, the disease takes it's > course and they can no longer walk, but it helps to > keep their legs going a little longer than they would > without the exercises. > It's good to hear from you Sam. Take care , I know > this disease is so hard on all families. Your family > is in my thoughts and prayers....Jan > > > --- ask ill tell wrote: > > > Sorry to here about all of the deaths, I know its > > been awhile since i > > have been on here and for that i am sorry but as you > > all know life is > > hectiac with LBD and everyday life. just a little > > update on my Dad of > > course nothing is better he is tarting to see things > > again they > > increase med's and then decrease med's every time my > > mom is out of > > site he thinks she is fooling around on him and it > > is hard on her. The > > next day he knows he did or said something and > > apoligizies for > > anything he might of thought but we all know he > > dosent remember what > > it was. they are not sleeping well at night and it > > is taking its toll > > on my mom she needs to get away but wont leave she > > is hard headed but > > we still love her if things keep going the way they > > are now we belive > > he will be in a wheelchair within the year and that > > will be harder on > > them as they live in a 14 x 80 trailer. Well i will > > go for now and > > hope you all get much needed rest and support. You > > are all in my > > prayers and have our love and support......Sam > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2006 Report Share Posted August 5, 2006 Sam, thanks for the follow-up. I'm sorry your dad has gotten worse - I wish for more good days to come. > > Just a note about my dad he has gotten worse over the past few months > but we have had a cpl of good days in between but not many my Sister > was in for a month from Cali. shes gone home now but she was a big > help to my Mom and myself as well anyway my Dad is mostly in a > hospitail bed now the legs not working right all the time, He also had > to have a feeding tube put in as he has a swolling problem. Mom is > doing the best she can but she is wearing herself out and how do you > make someone slow down we also have hospice now as well. Sam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 WELL I BEEN DEALING WITH CHIARI MALFORMATION SINCE 2006 AND I THANK GOD FOR KEEPIN ME.WHEN I HAD MY FIRST SURGERY FOR DECOMPRESSION.THOUGH THE SURGERY I END UP WITH BACTERIAL MENINGITIS AND ASEPTIC MENINGITIS AND ACUTE RENAL FAILURE.AND A SERVE DRUG ERUPTION.AND I HAD FOUR BRAIN SURGERY ALL TOGETHER AN THE BACK OF MY HEAD STILL OPEN UP AN LEAK.AND I HAVE SLEEP APHEA.AND THE DOCTOR THE THAT DID THE SURGERY MESS UP AND WAT RELEASE MY RECORDS AND WANT NO OTHER DOCTOR GO BEHIND HIM TO CORRECT THE MESS UP.AND HE ABANDON ME AND PUSHME OFF ON A PLASTIC SURGENT.AND THE PLASTIC SURGENT HAD TO MAKE HIM COME TO HELP WITH THE SURGERY AND AFTER THE SURGERY HE DIDN'T COME TO CHECK ON ME.SOTELL ME WHAT DO I DO.I JUST PUT IT AN GOD HANDS. Quote Link to comment Share on other sites More sharing options...
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