So yesterday I picked up my sister from the hospital and brought her home, to her home, not mine. It has been a very interesting journey one that we are still trucking along on. Suzi was fed up with being in the hospital. I honestly can not say i blame her. She was in since April 22 and I took her home July 6. That’s a long time to be kicking it in a hospital bed. Though i tease her a little and tell her she missed a month of it while she was on support so…lol
Anyways this is where i feel that the system breaks down somewhat. The first time they let my sister go home for a few days to see how she would do. I had to work and she didn’t get a lot of support. At the family meeting they suggested she didn’t need support. Well i can tell you she did. Anyways. we then did an over night at my place and then we did a couple nights at my place.
her first outing at her place we realized she doesn’t register to eat. so if i don’t remind her to eat breakfast lunch and dinner she wont. She will just drink her coffee and carry on. Some times it can take me a good hour or two before she will finally eat, with my mass texts and annoying promps. We also learned that she is unaware of things, like cars in parking lots. She will walk out into the parking lot and not pay attention to the cars or register that it is dangerous. With that information we brought it back to the hospital, hence the gradual outing starting at my home.
While staying with me i was able to see more things. her instability when she became tired, her confusion on how and when things were done. Her short term memory loss. I reported back to the hospital. I 100 percent do not think that my sister is capable of staying on her own without care in place, complete opposite of what the hospital had to say. she definitely needs a walker because without she will fall and is unstable specially as the day progresses. again opposite of what the hospital had to say. So i have had to voice my concerns each and everyday. She plugs things in and forgets she has done so. danger.. how is that going to work with cooking? curling irons? I have set up a safety plan however i have never had to do one of those for this situation so i am hoping it works. But here is my issue. They are sending someone home who forgets when they have taken medication, is unable to regulate eating, is extremely tired and lacks any awareness of feeding her cats, doing laundry or cleaning up. Forget meal prep or self care it just isn’t on the radar. So why am i having to fight for care? why are they so willing to send her home to a place she cannot afford to live in, with no income coming in, a brain injury and little to no support.. wtf. and then fight me on it. because they are low staffed. I want my sister to live independently however i am not sure it is the best for her. I struggle with it. She can not drive, she lives in the middle of no where i can see the depression for the injury taking its tole on her. I have expressed to everyone on her release team that i believe they are setting her up for failure. I could carry on with the home support scheduler being a complete douche, to fighting with social workers, occupational therapist, physiotherapist to doctors, however what’s the point. our medical system is broken and i alone can not change it. I do not plan on sitting down and ignoring the issue, because there are going to be more families and more suzis in the world and it really shouldn’t be this hard to make sure someone is safe when they are getting ready for discharge from the hospital. Right now i still need to be the voice for my sister to make sure she is safe, taken care of and somewhat happen within her new self.
So when i started to write it was about my sister, how incredible she is. How she beat the odds again with this aneurysm. But her strength and determination wasn’t just in the beginning. That is when people show up and support because its traumatic and everyone knows it is touch and go, but it is the now. right now is that part i find so completely amazing and the admiration i have for her grows each day. She knows she isn’t the same, she knows she has challenges, she knows that how she once lived wont be again. She knows that her thoughts are scrambled and she try’s to make the best of it. Oh she gets frustrated with me when i have to tell her things that she doesn’t want to hear.. how she may have to move, that we have to sort of finances, that we have busy days ahead of organizing. She would love to stick her head in the sand and at times i would as well, however, that is not going to make life better in the long run. for either of us.
My sister suzi is incredible. she is amazing in ways that i am unable to put into words. I know that we have some tough roads ahead and that we will have struggles and hard choices and i approach those with gentle hands. Its not easy handing your life over to someone else, allowing them to make choices and decisions that will effect you for the rest of your life… and yet she has handing me the control without hesitation, without doubt, without worry without a once of concern. The grace in which she gifted me the control of her life melts my heart. not because i have some sort of power, it isn’t like that..in reality its heartbreaking, stressful and a lot of work.. what melts my heart is the unconditional love, the acceptance, the trust. She loves me enough to trust that i am going to take care of her, she knows that i will get frustrated and never take it out on her, she knows that when push comes to shove that i will always push in favor of her well being.. she knew this before her aneurysm and some how through it all she knows it now. That strength, that trust, that is what i am in awe of with her each and everyday. I don’t know how she finds the strength to surrender and to accept which allows her to find peace in this long hard journey however each day i see it i feel blessed.
my sister suzi is amazing.