My daughter had a health condition about a year ago that has left her a quadraplegic with short term memory loss. She was married and had a grade-school age child. Now she has progressed to an electric wheelchair and can carry on a pretty normal conversation, but she does not seem motivated to do more than watch TV. I've known many individuals with quadraplegia who go home and go on with their lives, but we're not making any progress. The problem is my daughter's husband...he continues to move her from hospital to hospital and in and out of nursing homes, and says he's not ready to "give up on her yet" from a therapy perspective. I think he is having a real problem with reality, but also he doesn't know how to take care of her. He will not ask anyone for advise or help, including the medical world. The medical world talks about how hard it will be to care for her at home, so they aren't motivating him either. He acts as if he is loving and doing everything for her, but I'm afraid he will leave her in a nursing home the rest of her life. He is distant from us, resents us, and we cannot talk to him. The husband has legal rights and is making all the decisions. Has anyone else faced this type of problem before, and have any suggestions?
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Get Her Out
Started by
*MovinOn*
, Dec 20 2005 06:39 PM
4 replies to this topic
Top#2
magicthise
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Posted 20 December 2005 - 07:28 PM
All I can say is, I became paraplegic at the age of about 7 years old... and it was tough. Even having great parents, motivated people around me and being a child... (who let's face it generally have far more bounc-backability). It took me way over a year to get anywhere near motivated to do anything. Coming to terms with a disability is a long long road you have to travel. Even when you think you have got it all sorted in your head, and years down the line something can still knock you for six and make you feel as though you are back at square one. I can't imagine how much more difficult it is to deal with everything when you are a grown woman with a husband and a 'normal' life in all respects and to have that suddenly taken away from you must be horrific. Your daughter has all this to deal with, a year is no time at all, i think you need to chill a bit to be honest.
As for her husband, try seeing it from his point of view, the woman he has loved fully and has been his life partner has had this awful thing happened to her. No matter how it happened he is bound to feel guilty, no matter how nonsensical it is, that it is his fault, he didn't stop it. Then add to this the demands of personal care and it is difficult looking after someone with a high demand for care. It has only been a year for him too. I think being critical is not what they need, perhaps some good councelling for them both, but if you push either too hard you will simply be seen as interferring. He has such a lot to deal with and nursing home to nursing home is not ideal, true, but you seem to assume that your daughter is ready to come home and wants to, can you be sure of this? If she does then it is up to her to sort that out with her husband and for them to put into place a package of care that they are happy with... wether this be that her husband fulfills the lion share or they have a third party to help it is ultimately their choice.
http://poss-ability.com
As for her husband, try seeing it from his point of view, the woman he has loved fully and has been his life partner has had this awful thing happened to her. No matter how it happened he is bound to feel guilty, no matter how nonsensical it is, that it is his fault, he didn't stop it. Then add to this the demands of personal care and it is difficult looking after someone with a high demand for care. It has only been a year for him too. I think being critical is not what they need, perhaps some good councelling for them both, but if you push either too hard you will simply be seen as interferring. He has such a lot to deal with and nursing home to nursing home is not ideal, true, but you seem to assume that your daughter is ready to come home and wants to, can you be sure of this? If she does then it is up to her to sort that out with her husband and for them to put into place a package of care that they are happy with... wether this be that her husband fulfills the lion share or they have a third party to help it is ultimately their choice.
http://poss-ability.com
Edited by magicthise, 20 December 2005 - 07:29 PM.
#3
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Posted 20 December 2005 - 07:49 PM
Hi MovinOn and Welcome! 
As a mother of a young son, I can only imagine how difficult this is for you and your family. Ultimately, as the poster above said, these decisions are strictly up to your daughter's spouse and herself, if she's able to assist in the decision-making process.
You mentioned that there is some resentment going on...I think that if you want to be more involved in helping...it's essential that you and your son-in-law try to find some common ground and work together for the good of your daughter. Let him know that you'll be there to support any decisions he makes...and that you would like to be included, as far as giving your own thoughts on the issues at hand. You may not be comfortable with some of his decisions, but when he sees that you are genuinely prepared to stand beside him, that door of communication may open a bit more. Trust his judgment when you can.
If there is further alienation and resentment, that will only serve to isolate you from your daughter's life and care. These things tend to take on a life of their own, and can easily evolve into something much bigger than what we're able to fix. Now is the time to build some good, strong bridges into your daughter's life.
I can say with certainty that he does need help...even though he refuses it...it's important to build the trust that will have to be in place in order for him to open up and allow others to assist him through this trying time.
The above poster also made a very important point...one year is still relatively early...nothing is set in stone at this point. It's good that her husband is seeking out continued treatment and therapy. Just look at how far she's come in only one year! Encourage him in his efforts and try to be a supportive element in her recovery.
As a mother of a young son, I can only imagine how difficult this is for you and your family. Ultimately, as the poster above said, these decisions are strictly up to your daughter's spouse and herself, if she's able to assist in the decision-making process.
You mentioned that there is some resentment going on...I think that if you want to be more involved in helping...it's essential that you and your son-in-law try to find some common ground and work together for the good of your daughter. Let him know that you'll be there to support any decisions he makes...and that you would like to be included, as far as giving your own thoughts on the issues at hand. You may not be comfortable with some of his decisions, but when he sees that you are genuinely prepared to stand beside him, that door of communication may open a bit more. Trust his judgment when you can.
If there is further alienation and resentment, that will only serve to isolate you from your daughter's life and care. These things tend to take on a life of their own, and can easily evolve into something much bigger than what we're able to fix. Now is the time to build some good, strong bridges into your daughter's life.
I can say with certainty that he does need help...even though he refuses it...it's important to build the trust that will have to be in place in order for him to open up and allow others to assist him through this trying time.
The above poster also made a very important point...one year is still relatively early...nothing is set in stone at this point. It's good that her husband is seeking out continued treatment and therapy. Just look at how far she's come in only one year! Encourage him in his efforts and try to be a supportive element in her recovery.
* * * * * * * * *
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
Female. Incomplete para following a cord stroke in '03. Spina-bifida, severe scoliosis. 18 surgeries total...five spine-related: Three fusions w/hardware, two tethered cord releases.
#4
hillarymcarter
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Posted 20 December 2005 - 09:19 PM
Hi MovingOn. Sounds like you are in a very tough position.
I wanted to give you some adivce from the spousal perspective. My husband was rendered paraplegic just over a year ago. It is an ongoing battle and it sounds as if he is in far better shape than your daughter. He still has a hospital bed and he still has nurses who must come to the house three times a week.
One of the hardest parts of his recovery have been his parents. We are trying to move on and trying to make a new life for ourselves and they just can't seem to back off. This has made his recovery harder than it has to be.
I know that you have your daughter's best interests at heart and I can't not begin to act as if I know what it is like to be in the parents role. But, it is still VERY early in her recovery and it will take awhile for them to figure things out. The best thing you can do for both of them is to let them try to figure this path out on their own.
This stage in her recovery is crutial for the outcome of their marriage. If they don't learn to work together now, then they will most likely not come out of all of this together. I know that you might believe you know what is best for her because you are her mom. The reality is that your daughter is a married adult now and her husband is an adult also. I'm in no way telling you that you shouldn't be a huge part of your daughter's life, but you must realize that she has her own family now.
If this behavior (on the behalf of the husband) continues for another year then I believe that you have a right to step in and a right to be worried. Right now, it is just too early to expect things to snap back to normal.
This is also an important time for you and your son in law. If you burn bridges now, there will be no turning back. My mother in law burned those bridges with me when my husband was in the hospital and I just can't seem to get past it. I hate to think of how it will affect her relasionship with our children when we have them. For the well being of everyone, and for future relationships, I would step back a little.
One of the reasons that he won't except help is because he is being treated like a child. I know this first hand because it happened to me. My in laws assumed that because I was only 22 when my husband got hurt that I couldn't handle it and they would take control of everything. Because of this, I resist help from them anytime I can. I can't stand for them to help me do anything now because I feel like that is me admitting that I can't handle it.
I hope you don't take offense to anything I've said...I'm just trying to prevent what happened between me and my inlaws from happening to you and yours. I really, really pray that everything works out for your family.
I wanted to give you some adivce from the spousal perspective. My husband was rendered paraplegic just over a year ago. It is an ongoing battle and it sounds as if he is in far better shape than your daughter. He still has a hospital bed and he still has nurses who must come to the house three times a week.
One of the hardest parts of his recovery have been his parents. We are trying to move on and trying to make a new life for ourselves and they just can't seem to back off. This has made his recovery harder than it has to be.
I know that you have your daughter's best interests at heart and I can't not begin to act as if I know what it is like to be in the parents role. But, it is still VERY early in her recovery and it will take awhile for them to figure things out. The best thing you can do for both of them is to let them try to figure this path out on their own.
This stage in her recovery is crutial for the outcome of their marriage. If they don't learn to work together now, then they will most likely not come out of all of this together. I know that you might believe you know what is best for her because you are her mom. The reality is that your daughter is a married adult now and her husband is an adult also. I'm in no way telling you that you shouldn't be a huge part of your daughter's life, but you must realize that she has her own family now.
If this behavior (on the behalf of the husband) continues for another year then I believe that you have a right to step in and a right to be worried. Right now, it is just too early to expect things to snap back to normal.
This is also an important time for you and your son in law. If you burn bridges now, there will be no turning back. My mother in law burned those bridges with me when my husband was in the hospital and I just can't seem to get past it. I hate to think of how it will affect her relasionship with our children when we have them. For the well being of everyone, and for future relationships, I would step back a little.
One of the reasons that he won't except help is because he is being treated like a child. I know this first hand because it happened to me. My in laws assumed that because I was only 22 when my husband got hurt that I couldn't handle it and they would take control of everything. Because of this, I resist help from them anytime I can. I can't stand for them to help me do anything now because I feel like that is me admitting that I can't handle it.
I hope you don't take offense to anything I've said...I'm just trying to prevent what happened between me and my inlaws from happening to you and yours. I really, really pray that everything works out for your family.
#5 *MovinOn*
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Posted 22 December 2005 - 04:17 AM
Thanks to all for your advise. It is very sound, and also leaves me with more hope than I had before. I appreciate it that you took the time to reply to a stranger. I will try hard to be more supportive, and positive. Again, thank you!
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