Does anyone have experience with Palliative Care?

Well, Ginger!!!! I was just thinking of the Council on Aging! Jacksonville has a very good, active Council that will surely have info to help with these questions. ashby1947......I'll contact tomorrow and maybe this is a resource for you??? Chat soon Blessings. Elizabeth

@trishanna- One time when my son was very little my pediatrician decided not to spend a lot of time with me answering questions and started to walk out the door. I said, "wait a minute, please, I'm not done asking questions. This was long before insurance companies got into the time game. And he came back in. If I were you I would say, " Not one of my doctors will discuss how I am to coordinate all of this. Please help me." Don't take no for an answer. You have the right to proper medical care.

As far as your husband goes, he needs to take control of this too. He needs to get his doctor's attention.

If this confusion happened in another part of your life, for instance, a confusion with different contractors who are fixing your house, how would you both solve it?

@merpreb Appreciate your comments. Should have mentioned my husband has Alzheimer's. While I have lists which tell me which foods do what, putting it all together in a meal I can prepare is my problem. Guess I need a menu dietician!

@becsbuddy Have tried my large clinic and googled USA, etc. - none - but will add your ideas. Insofar as nursing homes are concerned, think they have doctors on call, but many residents maintain their relationship with their own pcp. Think there is a shortage of geriatric specialties - more so in our Midwestern area.

@trishanna- Oh, dear this does make it more complicated. What kind of a diet is he on? Also, what is the biggest problem with your diets? Is it your kidneys? There are several members who have had kidney transplants that can help guide you with that.

@trishanna, How utterly frustrating all of this must be for you! Can tell you that with pre-diabetes and kidney dsease diagnosed very close together, I was spending hours of printing out foods good for one but not the other. Getting to a good dietition who provided a meal planned for both diabetes and kidney saved me a world of time and effort. Sending you best wishes with the hope that you can make your voice and needs of yourself for your husband heard successfully!

@fiesty76I loved that you jumped in here fiesty! Perhaps you can share how the dietitian made it easier for you! I know how hard this can be. I've had vegans, salt-free, fat-free, and meat-eaters all at once. It can drive you nuts!

@merpreb, The dietitian provided me with charts and lists of foods groups, along with individ. content values, that could be used for both diabetes and ckd meal prep. Also some samples of breakfasts, lunches and dinners with values of the ingredients. Because I am also seriously under weight, he added some foods that I could add to diet for additional calories.

The guidelines and specifics and how they would apply particularly to me and my lab values proved invaluable. Some were published by nat'l dietetic org/foundation/institute? and then he wrote out some specifics for me based on some individual tweaking. like how much protein,carb, etc were needed / meal because I am also underweight. Cannot emphasize enough the stress reduction his help provided. I've pretty much memorized which foods work and those make up my grocery lists.

I may have been exceptionally lucky to have had his particular help but am so grateful for the time and effort he spent with me because subsequent lab results for both conditions have shown continued improvement in lab scores. When I called for a ff-up appt. with him was told that he had moved away so haven't yet met his replacement.

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Pallitive care is good with pain management. Symptom management. They are not just end of the road providers. Regards, Zuccaro