Someone I trust (even tho I haven't seen her in a couple of years) told me "They work for you, not the other way around" (referring to doctors, nurses, home health aides, etc, etc....). People have been telling me this for the last eleven years when I first helped my mom coordinate care for my father (of blessed memory). First we cared for my him, then for my sister (of blessed memory) & now I am caring for my mom. I am sometimes a slow learner, but this particular lesson (that I am in charge, not all of the holders of the jobs mentioned above) has been imprinted on my brain finally, I hope. I am stronger & more capable of standing up for what I believe my mom needs. I realize I'm not an expert in their fields & will of course listen to them, but I am the boss, I am my mom's advocate. I will fight for her right to be as independent as she can for as long as she can be. I am tired of being "patted on the head" & mocked as some kind of obsessive- refusing to face reality- daughter. They need to recognize OUR reality, OUR goals & OUR beliefs. I think I might write it up & make it required reading for anyone coming into our home to help us.
Last night, I called the old friend mentioned in this post's first sentence & asked for free professional advice. She offered some suggestions within her practice guidelines(friend or not, a professional cannot offer advice without actually seeing the problem). I called her because my mom was going to have to wait 2 weeks for this kind of official appointment. The PCP wanted to wait until some other test results came in. I understand the theory of this. It's good medicine, although my suspicious nature told me it was being denied because they thought I was not facing "reality" &/or expecting too much. There is also need to suss out problems of cognition vs problems of strength. I don't want my mom getting weaker because I expect too little of her, on the other hand I don't want to endanger her because I am expecting too much of her. I won't go into detail in this post about the problem, but it involves the bathroom. I said that if we could not get help for 2 weeks, then the bathroom was going to be completely unsafe & dysfunctional in the interim. The nurse said, in that case, she would come look at the problem today. I appreciated that but it wasn't good enough. I cannot describe how dangerous & upsetting the situation is/was. I called my friend & told her the problem. We talked a long time. She said she agreed with the PCP about waiting for the test results but understood my frustration. She offered a suggestion. I immediately put it into effect & guess what? It works!!!!! No more crying or arguing from either my mom or me. Also, a lot less stress. I wish I had insisted on this type of consult several weeks ago. Instead I was left on my own & the PCP/Nurse suggestions. This lead to a wasted $110 fix that didn't work. You of course cannot return used bathroom items.
I am so happy right now that every trip to the bathroom does not need to be feared by either my mom or me!
Tuesday, March 10, 2015
Saturday, March 7, 2015
Potpourri
Several things are going on...
My mother's strength & ability to stay focused in reality are declining rapidly. I have written about my mother before. (The D word, Lost in Translation, & A Cup of Tea) I feel like I am betraying her by writing about how she is doing. It's private, but I need to write. It is my way of trying to make sense of the incomprehensible. Let's just say that I remember my great grandmother in her final years. She "saw" & "heard" things that were not there. She was not always cooperative. She didn't communicate much. She needed help from my grandmother in the bathroom. She was strong though. She walked around the house without a problem. My mom is having trouble even getting around with the walker. We have the wheelchair easily available now, because some times she needs it. She is capable of far more than she attempts. "I can't" is her favorite expression. If I walk away, she can do more than if I stand there & tell her she can do it. It's hard to decide though. I don't want her in danger, but sometimes if she says "I'm going to fall" it sounds to me more like a threat than a prediction. When I think about what I used to worry about with her, I would give anything to go back to those problems rather than the ones we have today. Will the current problems sometime in the future look "easy" or "mild"? I have been alone with my mom for almost 48 hours, save for an hour when the nurse practitioner came to see her yesterday. I have some relief coming in the morning for a few hours. What I look forward to the most is conversing. When I am away from home or if I'm able to talk on the phone after my mom is in bed, I chat & chat & chat..... I strike up conversations with almost everyone I see. Now I sound like I am whining. This is happening to my mother, not to me. I have so much to be grateful for. I need to count my blessings.
I am finding it hard to interject any humor, even my dark, sarcastic humor into this. I titled this post Potpourri because I intended to discuss other things that are going on. Thursday night the world lost a lovely inspirational woman at the tender age of about 57. I only knew her for a year but will never forget her serene demeanor in the face of an awful illness. Someday I hope to find what it takes to be at peace with a bad situation even while fighting against it. Tomorrow morning I am going to a group meeting where I met this lovely lady. The mood will be sad. Unbelievably, the set topic of the presentation & discussion will be friendship which has been planned for a long time.
We should all just breathe.......& try to be present for ourselves & one another.
My mother's strength & ability to stay focused in reality are declining rapidly. I have written about my mother before. (The D word, Lost in Translation, & A Cup of Tea) I feel like I am betraying her by writing about how she is doing. It's private, but I need to write. It is my way of trying to make sense of the incomprehensible. Let's just say that I remember my great grandmother in her final years. She "saw" & "heard" things that were not there. She was not always cooperative. She didn't communicate much. She needed help from my grandmother in the bathroom. She was strong though. She walked around the house without a problem. My mom is having trouble even getting around with the walker. We have the wheelchair easily available now, because some times she needs it. She is capable of far more than she attempts. "I can't" is her favorite expression. If I walk away, she can do more than if I stand there & tell her she can do it. It's hard to decide though. I don't want her in danger, but sometimes if she says "I'm going to fall" it sounds to me more like a threat than a prediction. When I think about what I used to worry about with her, I would give anything to go back to those problems rather than the ones we have today. Will the current problems sometime in the future look "easy" or "mild"? I have been alone with my mom for almost 48 hours, save for an hour when the nurse practitioner came to see her yesterday. I have some relief coming in the morning for a few hours. What I look forward to the most is conversing. When I am away from home or if I'm able to talk on the phone after my mom is in bed, I chat & chat & chat..... I strike up conversations with almost everyone I see. Now I sound like I am whining. This is happening to my mother, not to me. I have so much to be grateful for. I need to count my blessings.
I am finding it hard to interject any humor, even my dark, sarcastic humor into this. I titled this post Potpourri because I intended to discuss other things that are going on. Thursday night the world lost a lovely inspirational woman at the tender age of about 57. I only knew her for a year but will never forget her serene demeanor in the face of an awful illness. Someday I hope to find what it takes to be at peace with a bad situation even while fighting against it. Tomorrow morning I am going to a group meeting where I met this lovely lady. The mood will be sad. Unbelievably, the set topic of the presentation & discussion will be friendship which has been planned for a long time.
We should all just breathe.......& try to be present for ourselves & one another.
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