Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 Belinda, The fear of nursing homes was also a prime concern for my wife. It is a good idea to communicate those feelings with your husband now. Charlotte (my wife) and I talked out all our concerns back in 1996 and got all the legal paperwork out of the way at that time. We had been married 38 years at that time and I did not know she wanted a casket burial rather than cremation, because we never talked about those things. She was buried in the casket she chose and the way she wanted last year. Because we talked out concerns and expectations, I knew that I could do my best to keep her home. Charlotte was in a nursing care (rehab) facility 28 days in 1998, and 32 days in 2001 due to complications of infection. She died at home where she wanted. All of the things you mention ARE part of MSA, so I would not worry about a specific MSA diagnoses. The doctor only has to mention the specific symptom - not a disorder, to get insurance to pay for equipment. Spinocellerebra ataxia, dysphagia, dystonia, rigidity, autonomic failure, etc. are symptoms and can be used to justify equipment. Just as sleep apnea can be used to justify CPAP equipment. My wife got tons of equipment and only the shower chair was not covered by insurance. Her death certificate had a cause of death as " cardiac failure " and a secondary cause as " Parkinsonianism " although she had been diagnosed as MSA in 1995 (at NIH). We will never know exactly she had as her wishes also included no autopsy (which I would have had done if I had not known her wishes). Talk out your concerns with your husband now. He also has concerns and you can help each other accept the problems you will face in the years to come. Note too, after you and he have reached agreements with each other on expectations, also talk to your kids about them. The old Gernam heritage in Charlotte and me prevented us from communicating our decisions to our kids, which has made it much more difficult for them to accept her death. Communication WILL become more difficult in years to come, do it NOW. Take care, Bill Werre belnorest wrote: > Hi everyone > I do not know if most of you know that I have not been diagnosed yet. > I am hoping to get an appointment at Wake Forest Baptist Hospital. I > spoke with my brother last night and there seems to be some confusion > there who would be more knowledgable to help me. It has been very > challenging to me and my family to say the least. I have been asked > why does it matter if you haven't been diagnosed yet if they can only > treat the symptoms. This may be so, but I still want to know what is > wrong with me. One doctor told me he thinks I have Spinocellerebra > ataxia. I go to another doctor who said he thinks I have Parkinson's > Plus and maybe some ataxia. I have read alot about MSA and feel that > I have alot of the symptoms of MSA. I feel like I have to be the one > who finds out about it as much as I can because I know no one else > who will do it for me.(family and close friends). My husband is > wonderful when it comes to working, cooking, laundry, child care, > taxi driver but when it comes to constant caregiving I dont know how > he will be. I know that there are times that nursing homes are > necessary and I dont have any hard feelings for someone who uses them > but I am terrified of being put in one. I hear nothing but horror > stories of the nursing homes around us. I have read everyones post > and seen the trials that everyone has gone through. I am afraid > without a diagnose that when I need equipment for something I won't > be able to get it. I hope that pouring my heart out to you all that > you won't see me as being a whiner because I am not. I am trying to > be very realistic in which my family for generations has always had > trouble facing what they do not want to face as well as my husband > and his family. If anyone knows of a doctor who can help me in or > around Georgia please let me know. I am on a HMO and have to go to > providers that are listed in my book which also narrows the field for > me. If you can help me please let me know and if not all prayers are > always appreciated. > Love and God Bless, > Belinda > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 Bill, You always have such sound advise for all of us. Thank you for the advice that you have given me. I do believe it is best for me and my family to sit down and discuss all our concerns before we aren't able to do so. Thank you again, Belinda > > > Hi everyone > > I do not know if most of you know that I have not been diagnosed yet. > > I am hoping to get an appointment at Wake Forest Baptist Hospital. I > > spoke with my brother last night and there seems to be some confusion > > there who would be more knowledgable to help me. It has been very > > challenging to me and my family to say the least. I have been asked > > why does it matter if you haven't been diagnosed yet if they can only > > treat the symptoms. This may be so, but I still want to know what is > > wrong with me. One doctor told me he thinks I have Spinocellerebra > > ataxia. I go to another doctor who said he thinks I have Parkinson's > > Plus and maybe some ataxia. I have read alot about MSA and feel that > > I have alot of the symptoms of MSA. I feel like I have to be the one > > who finds out about it as much as I can because I know no one else > > who will do it for me.(family and close friends). My husband is > > wonderful when it comes to working, cooking, laundry, child care, > > taxi driver but when it comes to constant caregiving I dont know how > > he will be. I know that there are times that nursing homes are > > necessary and I dont have any hard feelings for someone who uses them > > but I am terrified of being put in one. I hear nothing but horror > > stories of the nursing homes around us. I have read everyones post > > and seen the trials that everyone has gone through. I am afraid > > without a diagnose that when I need equipment for something I won't > > be able to get it. I hope that pouring my heart out to you all that > > you won't see me as being a whiner because I am not. I am trying to > > be very realistic in which my family for generations has always had > > trouble facing what they do not want to face as well as my husband > > and his family. If anyone knows of a doctor who can help me in or > > around Georgia please let me know. I am on a HMO and have to go to > > providers that are listed in my book which also narrows the field for > > me. If you can help me please let me know and if not all prayers are > > always appreciated. > > Love and God Bless, > > Belinda > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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