Hi...I am a retired RN whose wife has an incomplete SCI from a tumor / treatment in the thoracic spinal cord 1.5 years ago. Range of motion but little muscle strength. Foley catheter. She can take her self into the bathroom for bowel care using a transfer chair. The issue is, her attitude seems to be, "If I can't do everything like I used to, walking, I'm not going to do anything at all." She has a really nice, new, electric chair / scooter, but doesn't want to use it. I know many folks with SCI get up everyday, make their meals, clean, supervise help, go to a job, etc, but she just wants to just stay in bed. When I experimented with the chair, I could make coffee, build a wood fire, make a salad, etc, etc, but she refuses to try to develop any independence skills or to even try. I think getting up in the scooter and trying, puts all her limitations and horror of her injury right in her face and she cannot deal with it emotionally. She keeps saying she is going to walk again, the PT's say she could get some improvement, maybe she could transfer easier or stand with a brace but walking doesn't really seem possible. Even some improvement would mean hours of work every day, which she doesn't want to do either. Anyone have any insight or advice on what is going and how to approach this with her? She just can't face the thought, "I'm probably going to have this limitation for the rest of my life, I have to accept and adapt." Too much. She's in total denial and is "on strike" against her condition.
Its good that you are looking for advice...Your lady is going through an adjustment period..She is still very new to her injury and its very possible that she has not quite accepted that this is permanent.
So maybe in her mind she is just recuperating from surgery and soon she will make improvements. It takes some time to accept this and some people never do but then most people get on with it and learn to live as independently as possible.
Giving her a time limit on getting up will be good....hopefully she is doing stretches before she gets up and then encourage her up....find her a task to do or encourage a friend to come call...so she has to get up, Maybe say you need her to go with you or you would like her to make you guys a drink.
Sounds like she has great care because if noone was doing her meals for her, she sure would be in the kitchen making some lol
Will she come on the site here and talk to us, she will see a lot of normal positive people..well kinda normal lol
I can imagine that this is hard and a bit frustrating for the two of you. It seems like you've been doing a good job trying to encourage her to be a little more active though its not really working. If she wants to get better and walk again and be "normal" again she's gotta push herself and work for it. Laying around in bed all day will get her no where and if anything will worsen her condition and she needs to know that. Perhaps she can read these posts and understand she ain't getting no where with that attitude.
I'm a C6 complete quadriplegic and I worked hard to get to where I am now. I'm active and try to be as independant as I can and have quite good strength considering my injury and I accomplished this through lots of hard work. I know a guy in rehab who was an incomplete quadriplegic and had a lot more function than me but did absolutely nothing and ate junk all day. Now he's overweight and stuck in a powerchair when he could have been walking with at least a walker if he pushed himself.
pindy686, I would ask PT if they have a peer support group that she could be around others in chairs. I mentor others in chairs and try to help them see that life isn't over, it's changed. You being able bodied and trying to do things in her chair is great but it's not the same as it is for her. You sound like a great person and she needs you now more then ever. If you're in the Dallas Fort Worth area, let me know and I would be more the happy to help. This site is awesome too so please use the resorceses here.
I have been where your wife is now. It took a whole lot of pressure from my best friend to get me to get out of the house and try to enjoy something. I was existing and waiting to die. I was severely depressed because I felt like everything I enjoyed doing was ripped out of my hands. My best friend saw how bad off I was doing mentally and he started coming to my house and making my do things with him outside of my prison. It took time and tough love to get my to go out of my house by myself. In time I found new things I could still do that bring me great pleasure.
Music. It has to be the single most energizing forces in the universe. Upbeat and positive music is the best motivator. Make sure she has plenty of good music to get her through the day.
No TV. If you have a TV in your bedroom, take it out! It will give her excuses to stay in bed. If she wants to watch TV she'll have to get out of bed.
Tough love is the key. Make her bedroom a boring place to spend the day and one day you'll find her in the living room or kitchen.
Pindy, all good advice above! You know from your work that if she stays in bed, your wife will get weaker muscularly, be more vulnerable to disease, wallow in misery, and be at greater risk for pressure sores. But she is the one who need to get motivated to make the best of her life now. With good range of motion, she is more likely to be able to build her strength in unaffected muscles. And she is still in the window of improvement neurologically, so every effort may pay off way more than expected. Please encourage her to get involved in a local (face-to-face) peer group, as well as online support. And, as Truwrecks said, make that bedroom boring when she's in there alone! Incentive to leave is a great idea... Maybe invite her to prepare some of her favorite meals. (I'm sure you've done that.) We're here to support you, too. I think SCI is as hard on the caregivers as it is on the injured person.
Good stuff in previous posts. I like the no TV in bedroom. Also I would consider no food unless there a good reason. Friends were key for me. I got involved in sports which opens up your world. Maybe some other interests. She will have to do some of this on her own. (Armchair counselling is tuff!). Richard
Good stuff in previous posts. I like the no TV in bedroom. Also I would consider no food unless there a good reason. Friends were key for me. I got involved in sports which opens up your world. Maybe some other interests. She will have to do some of this on her own. (Armchair counselling is tuff!). Richard
No food richard,, lol that would help me lose weight!
Good stuff in previous posts. I like the no TV in bedroom. Also I would consider no food unless there a good reason. Friends were key for me. I got involved in sports which opens up your world. Maybe some other interests. She will have to do some of this on her own. (Armchair counselling is tuff!). Richard
No food richard,, lol that would help me lose weight!
I think richard means no food just in the bedroom!
I get so frustrated with my wife and son not doing things that I used to do the way I like it done. For example loading the car up for trips. We went away for a few days over Christmas, and my son was attempting to load and secure our swags to the roof rack, but it was not being done the way I would have done it and I lost it and took it out on my boy, which was very wrong of me. But I have learned over the last two years to take a deep breath and just get on with things. I'm sure that given time pindy686, your wife will come round and start enjoying life again. It's a huge shock not to be able to do the things you are used to doing. Just give her time, it's still early days mate.
Hello Lara and everyone..! Sorry for the delayed response! I did read all the replies (several times) and am very grateful and appreciative for everyone's advice and insights, thank you! I was a bit overwhelmed and "digesting" everything. After going over everyone's advice and thinking on it, I can see there are many different elements to her / our situation. Number one, it's going to take time. It's a huge hit to suddenly have everything changed so profoundly and that's just the way it is. Only she can slowly put the emotional pieces back together for herself. In the meantime if I try and reinforce where she is moving forward and try to slowly discourage where she's stuck, that's all I can do. We're not currently in any crisis and I do too much and make things too comfortable and at the same time when she does want to get up I want to try and make it a positive experience. "Want lunch? Come on in the kitchen and we'll make it together". So a lot more work to do. Thanks again to everyone for all your insight and advice, very valuable. I will be reading them again and learning more from the forum. Best wishes to all of you.
Hello Lara and everyone..! Sorry for the delayed response! I did read all the replies (several times) and am very grateful and appreciative for everyone's advice and insights, thank you! I was a bit overwhelmed and "digesting" everything. After going over everyone's advice and thinking on it, I can see there are many different elements to her / our situation. Number one, it's going to take time. It's a huge hit to suddenly have everything changed so profoundly and that's just the way it is. Only she can slowly put the emotional pieces back together for herself. In the meantime if I try and reinforce where she is moving forward and try to slowly discourage where she's stuck, that's all I can do. We're not currently in any crisis and I do too much and make things too comfortable and at the same time when she does want to get up I want to try and make it a positive experience. "Want lunch? Come on in the kitchen and we'll make it together". So a lot more work to do. Thanks again to everyone for all your insight and advice, very valuable. I will be reading them again and learning more from the forum. Best wishes to all of you.
Hello pindy686, its great to hear from you again! To be honest, there is no easy answer to any of this, every individual, circumstance and situation is different but it does sound like you are on the right track.
All the best and remember to take care of yourself too! Im looking forward to seeing you around the forum