Littlegirl Posted June 14, 2006 Share Posted June 14, 2006 I just wanted to throw out this topic as it is something my siblings and I are trying to figure out. We've been going with my mother for all of her doctors appointments as well as my dad's (he does not have cancer but several other health issues as he is 80). Between general practioners, oncologists, pulmonary doc, gastro and other misc. procedures this has been alot of appointments, but we've always been able to have at least one of us kids there. (And most of the 7 in the beginning, I bet we were a bit overwhelming.) We want to be there for support in case there is any bad news as well as for memory help as my parents can get a bit confused or forget some things. My question is this....as caregivers do you all make it a point to go to every appointment? And those of you who are the patient...is it helpful to always have someone there or do you feel like you are being babysat or not in control? I know your first reaction is to discuss this with mom but I know she will ALWAYS say she does not want to be a bother so no need to join her. But I think she does appreciate the fact that she has a strong support system and if one of us did not join her I think it may be a bit sad for her. Today mom has a follow up from her EGD. And though I expect this to be a brief visit with no big news or change in meds I am going to go with her. Thanks, Karen Quote Link to comment Share on other sites More sharing options...
dihen Posted June 14, 2006 Share Posted June 14, 2006 Hi Karen, Just wanted to let you know that you and your siblings are not alone - either one of my siblings or I, or someone from our extended family has always accompanied my mom to all of her appointments or procedures (even a basic lung xray) to all of her different doctors since her cancer diagnosis. It is our way of staying in the loop and getting the "whole" story. In the beginning, my mom didn't want to 'bother' anyone to go with her but after awhile, she said she felt so relieved that someone in the family, other than my dad, goes with her and gets the information. All the best to your mom - may she continue to improve each and every day! Quote Link to comment Share on other sites More sharing options...
Kasey Posted June 14, 2006 Share Posted June 14, 2006 You're a great daughter (and your siblings as well) and I would say..........unless there is any resistance on your parents' parts..........go with them. It is always a good idea to have another set of ears. I ALWAYS had someone with me and was appreciative to have them there. If asked, Mom will probably say ~ no need ~ so I would pose it another way..........something like........hope you don't mind that I really would like to tag along, would make me feel better. You will know what to say. Kasey Quote Link to comment Share on other sites More sharing options...
dihen Posted June 14, 2006 Share Posted June 14, 2006 Oh, I noticed that surgery was not an option for your mom because of her emphysema. This was also what we were originally told/advised because of my mom's extensive emphysema, but after meeting with a renowned lung surgeon at University of Pennsylvania, she opted for surgery. All went well, and her first post-surgery PET scan showed NED, but she has not been able to shed the oxygen since surgery, and still has severe SOB (oxygen goes down to the mid 70's!) upon exertion. I think one of the hardest thing with cancer is trying to determine the best course of action in terms of treating it... Quote Link to comment Share on other sites More sharing options...
EastCoastLadi Posted June 14, 2006 Share Posted June 14, 2006 Karen, I can only answer for my circumstances, heck! I go to my husbands' onc., radiologists, and other specialist appointments. Sometimes I will go to his tests, if I really need to be there. But since the cancer center knows us pretty well by now, they're good at making appointments around our availability, and of course now with the kids getting out of school for the summer, we will just have to be a little more creative....and btw..even though my husband doesn't like me going w/him sometimes, I ask alot of ?'s, but I feel that I can hear and understand some things he can't......and these drs. really do talk to me as well, in the beginning of all this they thought I was a nurse or in the medical profession, because of what I knew.... Grace Quote Link to comment Share on other sites More sharing options...
Linda661 Posted June 14, 2006 Share Posted June 14, 2006 I always make it a point to be at every dr. appointment (including camping out during hospitalizations to catch the docs. there since they have no "set" visit time) -- often what they hit my mom with doesn't sink in and at least I've heard the info. first hand for a mom-refresher later. Plus, often mom isn't exactly up front about what her symptoms are or what meds. she's currently on (those seem to change weekly!) to help the docs. help her either -- I often get asked stuff by the docs. in that regard. Linda Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 14, 2006 Share Posted June 14, 2006 I think it is a good rule to accompany the patient to every appointment. More resource for questions, hearing what is said, etc. I let others take Lucie to radiation sessions, scans, tests, but when a doctor is involved, I want to be there personally to be sure we hear everything and all questions are asked, and the doctor's questions are fully answered. Don Quote Link to comment Share on other sites More sharing options...
cindy0519 Posted June 14, 2006 Share Posted June 14, 2006 Agree with other 110%! I have flown to Az to be with Dad and SM for most all appointments since his diagnosis. I also have an excel spreadsheet to track what doctor's he has seen and their address/phone/fax and another one for all of his medicine (including those he no longer takes and why). Makes it MUCH easier to keep track of things and have all the information right at hand. Gotten lots of remarks when we hand nurses/doctors list of medical professionals and meds. Good luck to you and your mom! Cindy Quote Link to comment Share on other sites More sharing options...
RandyW Posted June 14, 2006 Share Posted June 14, 2006 90% of people suffer short term memory loss when they are naked in front of their Doctor! I did not miss one apptmnt when Deb was sick. Took a lot of notes too. HAd questions always. Quote Link to comment Share on other sites More sharing options...
ztweb Posted June 15, 2006 Share Posted June 15, 2006 Karen, I haven't been able to make it to all my dad's appointments and I can say that I think I have missed out on much. I think it is good to go, as more heads to think of questions, the better. My mom tries to write it all down, but that is overwhelming for her too. She calls us right after, and we come up with questions for her, as she is just stressed to the max with this. I can say too that upon diagnosis, at Mayo clinic in Minnesota, I knew my dad held his head high as he had an entire crew with him there. He was proud to walk through those elaborate buildings, with people swarming about, knowing we were all there, we all care, and that we supported him 100%...this is just my 2 cents! Good luck! Quote Link to comment Share on other sites More sharing options...
hopeandstrength Posted June 15, 2006 Share Posted June 15, 2006 My mom went to all the appointments and I went to most of them. Like Don said, I didn't go to scans or radiation if I was working or something, but all of the appointments that were with the doctors I felt that I really wanted to be there. I'm a nurse, and sometimes felt that it gave me a little more power with the doctors. I didn't care for his onc that much..I think he was smart enough, but didn't think he had any bedside manner and he was much better when I was there! Quote Link to comment Share on other sites More sharing options...
Littlegirl Posted June 15, 2006 Author Share Posted June 15, 2006 Thanks for all your responses. I did go to mom's follow up visit with her gastro doc yesterday even though she was not expecting me to, and she seemed happy to see me there. Even though it was a minor appointment I thought it would be best for one of us to be there. It is best to get the whole picture and to be honest it helps me determine how mom is doing based on what she tells the doctor. She was telling us she thought she might be a little better, but when the doc asked how much better 25%, 50% better... she answered 40% better. He was very pleased with that as he said it will just take time to feel 100%. Her insurance refused to cover 2 Nexium pills a day so he wrote a script for one a day and gave her samples and said it should get her through till he sees her again in 3 weeks. And she thought he meant she would have enough samples to get her through so I could see that potentially when she ran out of meds in 10 days she would be aggravated that she did not have enough. But since I was there I explained all that to her. This simple step could be big in keeping her happy with the doctor as she is beginning to feel they are all lying to her, when in reality it is just a simple misunderstanding on mom's part (ususally). Sooo, I'm glad I went and will continue to go whenever I can. Quote Link to comment Share on other sites More sharing options...
cmrsm Posted June 16, 2006 Share Posted June 16, 2006 I think it is wonderful that one of you can go with your parents. I believe it is very helpful because people when dealing with bad things in their life sometimes fixate during a certain part of the conversation and get lost. They seem to not hear what the Doctor or any other person is telling them. It is always great to have a second pair of ears who are not the ones being talked about. I even find that in my profession, divorce attorney, that when I speak to a client they at times become so fixated with something I said that I lose them and have to bring them back into the conversation or discuss the issue with a family member. It all becomes overwhelming and having another person with you to love and support you could never hurt the situtation. In addition, you will know where things truly stand. Parents think by not telling us the entire story they will spare us from pain, but they are so far off. Good luck and God Bless. Quote Link to comment Share on other sites More sharing options...
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