• entries
  • comments
  • views

Sharing my story, self advocating




Recently I had to speak up about how my diabetes is treated, I told the nurse I had dr. permission to administer my insulin and I knew how to take care of myself  and then she said AND YET YOU ARE HERE IN A NURSING HOME....and I suggested since she is new does not know me can she go get the supervisor who could advise her, she insisted we do it her way which was with holding insulin and that was wrong. And in the end The next day, my endocrinologist called them with specific instuctions which I had been self advocating all along. No one said that nurse got it wrong....


I cried because I have reasons for being here, and that sounds benign but it was insulting.


And all my doctors, therapists say self advocate, educate about stroke,about pain syndrome, about  what I need,who I am.


So today that lovely woman brought me communion. I cherish her. I talked about my appt yesterday with pain clinic. I shared about my possible upcoming electrode surgery. She helped by saying she knew knew 3 that worked well,1 that did not. But I shared my story about stroke and getting pain, and how I came to be here, my disability denied then established, my inability to live  alone. Well she asked me what to pray for and I told it all. I noticed she looked at her watch. I apologized for burdening her with all that including talking about my lost career being early retirement, but I missed my work dearly. She said if we help 1 person we are successful. I wonder if anyone listens.

A new worker here replied this is a nursing job,pays the bills. I doubt either one of those statements about being a CNA is entirely true. And I am more horrified at her statement to a patient. I worked in schools, I would never told that well it was a job.......well perhaps for that unfortunate soul, maybe this is first job she gets or keeps...but we here in a nursing home are not afforded any dignity.


I feel sorry for the employees here because I had successful job and life and I knew how to behave professionally, even when I had challenges, but I am regarded now as a vegetable, but even though, I have broken body and mind, my soul my soul is here requiring nuturing and dignity.


So that visitor brought me a reading along with communion. It said to be humble...lots of stuff about humility and blessings. I feel bad for my pride, yet rebellious because hey I earned that...but in the end are we not all damaged, are we not all the same in that we got where we got with help, and that we pray for those who do not understand. I realize I am one who does not understand maybe. 


I just feel violated, treated disrespectfully, but I must trust them because of the surgery I need. All this self advocating is exhausting. Thinking is exhausting too.


I have unseen disabilities that is difficult to deal with. I have pain which is crazy to talk about.


But can my future change with an electrode?



Recommended Comments

Pam :


I so understand your plight. It has to be so  difficult when you are dependent on others  for our basic needs, if one asks for his or her rights than they are bossy & if one doesn't then they don't get their rightful services. you did not ask for this, but this are cards you are dealt with, how about asking for things nicely & appreciating all the work those nurses are doing for every one in the facility. It is not easy being caregiver & who knows their personal life, every one is going through some troubles in their life, so being kind to people also gets the job done. Personally when I work at home or in office if people are nice to me, I won't mind going extra mile for these people, so being kind to others will help too. at home also if hubby says u need to do certain things this way, then I m  like "ok u think u can do better than go ahead & do it






Link to comment

Pam I can't even imagine myself and how I would deal with some of these things. I do know that you are a person who deserves nurturing and dignity. That being said, I understand that this has fallen short for probably many reasons...some innocent and some not depending on each person...which is a shame and unacceptable. Your voice and experiences I hope can be a shield for these types of insults. People....People are so different in what they are educated on, what they feel, their perspective, their reasoning, their approach...everything. it is my belief that you have to learn you and then learn tolerance at times. Pray, educate, and learn about others and what may affect their choices and behaviors in life. Hope that your experiences afford you those moments. And yes, advocate for your own rights. I feel everyone should be afforded the same. Really take the good from those experiences with others that inspire you so as not to forget that there are others who love and inspire. Boundaries are imperative and self preserving...so important. I am so sorry that there are times when these things do not help and insults happen. I know it must feel really bad...wrong. I am sending you hugs Pam and hoping that my good thoughts and hopes reach you. 

Link to comment

Add hugs from me. I am getting some disrespectful treatment because I am 70 so "possibly" senile in the eyes of those who are advising me. It is one way of those who feel nothing for others to cope, that give-it-here attitude and yes, I would get mad about it too. It is hard to be the good little Christian lady sometimes. I attempt it but often don't succeed So it is chin up and on we go with our life. (((Hugs))).

Link to comment

Sue I can totally respect where you are coming from. I know I have let the mean thing out of me and I don't always feel bad about it. Some of my deficits make it difficult to advocate for myself in a way...When I find myself in a spot like that I can be like a bomb. Sometimes people bring it on themselves...I know I'm pretty patient and know I have empathy toward others but if someone blatantly disregards my boundaries and lacks this then self "advocating" is the answer...then so be it. This Is my nice way of saying I am not always nice...Lord knows that I always try. Pam if a CNA said that comment to me in your situation that could be one of those moments where I might not be nice. So hugs again with Sue because I hope they just help you feel better. Some people are just not cut out to be what their profession is.

Link to comment

yes, thank you guys, i always feel better when you take time to see me, and wow, we are alike.


Yes Asha, There is a thing here called caught you caring...you write up paper to put on bulletin board and it goes to drawing....i have always written up a bunch all month for my  good ones, in fact one lady won a 25 dollar gift card. I say thank you, appreciate the help all the time, hoping they will get to know me and maybe care more, i chat... but i do not pay or buy food for people as some patients do, i cannot afford it. oh i share sweets. but this goes beyond this bribing or showing appreciation...i see others buy nothing really either, you cannot change a leopard.


Well, I strive to to keep my dignity and act with integrity at all times, trying...


always helps to vent and be understood...thank you, much appreciated.

Link to comment

Pam :


when I say being kind & nice to other, sometimes just saying thank you and appreciating some one did something special for us & went out of their way is good enough. I guess thats my personality, I feel loved when I get appreciated by others that's my love language, some people show their appreciation or love by act of service. I feel validated about my job or work when someone appreciates me & says, thank you  that makes me feel good.




Link to comment

Hang in there Pam. We can't always be nice especially when someone pushes our buttons.  Sometimes all you can do is appologise afterwards. Saying "sorry I lost my temper, but what you said hurt too"  can be helpful in both mending bridges and asking people to see your side as well.  Even in ordinary hospital where you know you are only there short term there are some nurses/carers who don't see you as a person, I'm sure that happens even more in a long term care environment.  Just because we had a stroke does not automatically mean we also lost all our marbles, but so many nurses and care staff can't seem to get past that stereotype.

Hugs and try not to let the turkeys get you down.

Link to comment
Add a comment...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.