12/19/15

Let's Chat~ The Pre Coffee Saturday Edition






Morning! It's been quite the week. But the tree is up and cookies will be started today. I can actually do some Christmas shopping on Monday. It will be small, but, the boys are used to that. I am blessed that they both know that the most important thing is family. I found out a few things yesterday. A doctor can decide to no longer work with you, even after 20 some years. Mom received a registered letter from hers yesterday. While I think it was the lowest of low to not talk to her after all this time and to pull it on a heart/end stage COPD patient, I do think he did her a huge favor. All he has been doing for years is just pushing medication and therapy. Both parents are under the delusion that she could possibly improve. Mom would have a much better quality of life if he would have implemented comfort measures along with her therapies. 




I'm not saying he should have given up, but he should have been more realistic. Mom can not do everything for herself, and for me to do so is exhausting. I need help. He could have ordered more for her. He could have given her more resources. I know shes upset right now, but the program I read about yesterday (and I will post about it later because it seems like an excellent resource for area seniors!) looks like it could be the answer. Mom will be getting out of the house a few times a week instead of sitting on that bed thinking of ways to make me miserable. (ok not always, but lately....) 



I'll be taking the computer downstairs today so that Mom can read what I read yesterday on my phone. I think she'll feel much better. There have been times that it was suggested that she go into a nursing home temporarily to help with more intense therapy and they couldn't afford it ($3000 a shot, who could?) This program will pay for it. It might just extend her life a little and it damned sure will make her much more comfortable towards the end. And adding to the quality of life is always a good thing. And if truth were to be told, she has NO quality of life. 


She sits on that bed day in and day out. Twice a week the nurses come in, once or twice an aid comes in, lately no aid at all. She get PT and OT twice a week. The rest of the time it's Food Channel and obsessing about yarn. People rarely call, people  rarely visit. She drove me nuts worrying about when the church was coming caroling, but then I realized, as lonely as I am, I can go out. I go out on the porch and theres people. I go to Walmart and run into friends. Mom sees us. Day in and Day out. I get sick of us. She's more isolated than I am and if I'm miserable, how does she feel? 



Dad takes his meals in his room, he spends most of his day there or running here and there. And I do escape a lot. It will be nice for her to see new faces, and do new things. To get out and socialize with others. It might be good for her. And I'm going down now. Making coffee and breakfast, I'll rid off a chair in the kitchen and start those damnable cookies with her there. It won't be easy, but I think I just gained a new perspective. I'm an ass at times. But, I'm going to fix that right now. 




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@TerrorMom

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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 
 

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