Helplessness
Hi Friends,
That is the word of the day...helplessness. The feeling is absolutely overwhelming as I sit at mom's bedside and watch her be frustrated and agitated and not be able to do a thing about it. I try talking to her and telling her everything is okay and explaining to her where she is and who I am and that she is alright, but I don't know if she understands me. I try to hold her hand, but she seems to like to jerk it away lately in frustration, and is constantly kicking her legs and moving herself around the bed as though she'd give anything to get up and leave. She gets these looks on her face of utter dismay at being in the bed, and imploring me to help her, and I don't know how. She has now started to be able to make sounds with her throat (when they downsized the trach tube, the new one they put in does not have a cuff blown up in her throat to hold it in place and has holes in it that allow air to pass through the vocal cords), and most of the time it is a keening, wimpering sound which breaks my heart even more. But she is trying to form words - her lips move sometimes when she makes the sounds, and they come out mostly as whispers which are very difficult to hear or understand. But I swear I heard her say "Oh f*#@" once, which would definitely be just like her. ;)
It is almost harder to see her like this than it was to see her with tubes coming out of her everywhere and lying motionless and fragile. Of course I know this is good progress, and as Lori N pointed out, MUCH better than seeing her laying there with a look of happiness and contentment on her face...her frustration means she is fighting, and she is working so hard to get better. This I know, I just need frequent reminders of such. And as my aunt Betty keeps telling me, these little things are all progress, the baby steps we keep talking about and looking for.
She is also moving her right leg even more, bending up her knee and everything, and pretty soon it'll catch up to the craziness of the other one. She moves so much around in the bed now, they had to put a soft restraint around her waist to make sure she doesn't fall out of bed! She has a splint on her right arm to keep her from clenching her fist so much so she doesn't get contractures, and so the fine motor movements of that hand are still lacking, but the gross movements are increasing each day...today she was bringing that arm all the way up to her face, and I had to keep her from knocking her face with the splint! Her left hand she uses now to itch her face, and I caught her trying to itch underneath her helmet on the side with the soft spot a few times, which makes me nervous, but I guess she can't get too far under there. The only thing I do that seems to calm her even slightly is when I give her foot massages with her Lilly of the Valley lotion. We're now about 3/4 of the way through the bottle, I can't believe I've been using so much! But the nurses always comment on how good she smells, and they use the lotion too on her back and after they bathe her. So I make an effort to do this when she gets particularly agitated.
This afternoon Pam drove me out to Des Plaines to check out this facility she may go to called Holy Family. The drive out wasn't actually that bad, I think it took us about 35 minutes, and we did hit a fair amount of traffic. The woman who met us was very nice, and sat down and told us a bit about the place and answered my questions first. One of the things that concerns me is the very short periods each day that are devoted to rehab, and the fact that the rehab itself is done in the room at the bedside. I was hoping there'd be a place outside the patient room where she'd go everyday, to get her out of the room and get a change of scenery. Other than these concerns, it seems to be a nice place with good care. My problem is that it doesn't seem good enough unless it's RIC. Speaking of which, I heard from the Social Worker again today who tells me the physiatrist in charge of evaluating mom for RIC is very much still pushing to get her into RIC despite the decision made per the physicians over there who don't think she should come based on looking at her chart. He is fighting for her to get into this program at RIC, and really believes that is where she should be. So this in addition to my wonderful, dear, sweet Lori who is also working on this for me as though it were her one mission in life, there is hope yet.
As I was saying goodnight to mom this evening while Natalie and Kim waited in the lobby for me, I put the picture I had brought to the hospital of mom and I at my college graduation on the bedside table where she could see it. I was talking to her and saying she could look at this picture during the night if she was lonely or scared, and she was looking at me while I was talking. I told her to look at the picture, and pointed to it with my finger. She then looked right at it, just like I told her to!!! Then I told her to look at me again, and she did it!!! I am really hoping this is the beginning of her really being able to understand and respond to commands, as she hasn't followed one since that thumbs up a few days back. I definitely will continue to work with her and do as much as I can to stimulate her before she gets to rehab. I know she's ready for the next level and she's bored to tears lying there doing nothing.
Please, I need as much love and support from you right now as possible so that I can continue to be strong for her and help her through this rough patch before she gets to rehab. I cannot describe to you how much it hurts my heart to feel so helpless, and somewhere I need to find the strength and patience to get her through. I've been digging very deep, and I'm hoping I don't hit the bottom yet because we've got a long, long way to go.
That is the word of the day...helplessness. The feeling is absolutely overwhelming as I sit at mom's bedside and watch her be frustrated and agitated and not be able to do a thing about it. I try talking to her and telling her everything is okay and explaining to her where she is and who I am and that she is alright, but I don't know if she understands me. I try to hold her hand, but she seems to like to jerk it away lately in frustration, and is constantly kicking her legs and moving herself around the bed as though she'd give anything to get up and leave. She gets these looks on her face of utter dismay at being in the bed, and imploring me to help her, and I don't know how. She has now started to be able to make sounds with her throat (when they downsized the trach tube, the new one they put in does not have a cuff blown up in her throat to hold it in place and has holes in it that allow air to pass through the vocal cords), and most of the time it is a keening, wimpering sound which breaks my heart even more. But she is trying to form words - her lips move sometimes when she makes the sounds, and they come out mostly as whispers which are very difficult to hear or understand. But I swear I heard her say "Oh f*#@" once, which would definitely be just like her. ;)
It is almost harder to see her like this than it was to see her with tubes coming out of her everywhere and lying motionless and fragile. Of course I know this is good progress, and as Lori N pointed out, MUCH better than seeing her laying there with a look of happiness and contentment on her face...her frustration means she is fighting, and she is working so hard to get better. This I know, I just need frequent reminders of such. And as my aunt Betty keeps telling me, these little things are all progress, the baby steps we keep talking about and looking for.
She is also moving her right leg even more, bending up her knee and everything, and pretty soon it'll catch up to the craziness of the other one. She moves so much around in the bed now, they had to put a soft restraint around her waist to make sure she doesn't fall out of bed! She has a splint on her right arm to keep her from clenching her fist so much so she doesn't get contractures, and so the fine motor movements of that hand are still lacking, but the gross movements are increasing each day...today she was bringing that arm all the way up to her face, and I had to keep her from knocking her face with the splint! Her left hand she uses now to itch her face, and I caught her trying to itch underneath her helmet on the side with the soft spot a few times, which makes me nervous, but I guess she can't get too far under there. The only thing I do that seems to calm her even slightly is when I give her foot massages with her Lilly of the Valley lotion. We're now about 3/4 of the way through the bottle, I can't believe I've been using so much! But the nurses always comment on how good she smells, and they use the lotion too on her back and after they bathe her. So I make an effort to do this when she gets particularly agitated.
This afternoon Pam drove me out to Des Plaines to check out this facility she may go to called Holy Family. The drive out wasn't actually that bad, I think it took us about 35 minutes, and we did hit a fair amount of traffic. The woman who met us was very nice, and sat down and told us a bit about the place and answered my questions first. One of the things that concerns me is the very short periods each day that are devoted to rehab, and the fact that the rehab itself is done in the room at the bedside. I was hoping there'd be a place outside the patient room where she'd go everyday, to get her out of the room and get a change of scenery. Other than these concerns, it seems to be a nice place with good care. My problem is that it doesn't seem good enough unless it's RIC. Speaking of which, I heard from the Social Worker again today who tells me the physiatrist in charge of evaluating mom for RIC is very much still pushing to get her into RIC despite the decision made per the physicians over there who don't think she should come based on looking at her chart. He is fighting for her to get into this program at RIC, and really believes that is where she should be. So this in addition to my wonderful, dear, sweet Lori who is also working on this for me as though it were her one mission in life, there is hope yet.
As I was saying goodnight to mom this evening while Natalie and Kim waited in the lobby for me, I put the picture I had brought to the hospital of mom and I at my college graduation on the bedside table where she could see it. I was talking to her and saying she could look at this picture during the night if she was lonely or scared, and she was looking at me while I was talking. I told her to look at the picture, and pointed to it with my finger. She then looked right at it, just like I told her to!!! Then I told her to look at me again, and she did it!!! I am really hoping this is the beginning of her really being able to understand and respond to commands, as she hasn't followed one since that thumbs up a few days back. I definitely will continue to work with her and do as much as I can to stimulate her before she gets to rehab. I know she's ready for the next level and she's bored to tears lying there doing nothing.
Please, I need as much love and support from you right now as possible so that I can continue to be strong for her and help her through this rough patch before she gets to rehab. I cannot describe to you how much it hurts my heart to feel so helpless, and somewhere I need to find the strength and patience to get her through. I've been digging very deep, and I'm hoping I don't hit the bottom yet because we've got a long, long way to go.
Comments
What a courageous person you are, and your strength is amazing. I pray for you and your mom daily-and now will pray for RIC too!
She is one lucky mom to have a duaghter like you!
My love and prayers are with you
Rebekah
Bev is so blessed to have you watching out for her at all times. You are so blessed to have such a willed strong fighter for a mother!! She will need all of this strength and determination to overcome the hurdles that lie ahead. It IS frustrating for her, but the more she fights, the stronger she becomes. You two are perfect for each other!! I agree with you, I think she's trying to take more than just babysteps at this point! Praying for RIC!
Jessica
I don't know if you remember me, but I am the office manager in the theatre department at MSU. Bev and I came to this department at the same time and we clicked immediately. I have to tell you that Bev is one of the strongest women I have ever met and she will get through this. It may take time but with you beside her, the most important person in her life, (she told me that all the time)she will fight like hell. I have something I would like to send to Bev. Can you email me an address where I can send it and she will get it?? my email address is beth.weisbecker@mnsu.edu I will continue to pray for both of you and please know, that my thoughts are there 24/7. Thanks for keeping us posted with this web site. Please give Bev a big hug from me and let her know that I miss her.
Beth