Compassion, frustration and lots of dedication. How do you do it? You're important and you have needs--discuss your world here.
Posted on: Thu, Mar 6 2008 12:54 PM
Posted by: Spinner Posts: 37
IamwhatIam:Dear Spinner, First of all, I wish you and your guy all the luck and happiness in the world. I have a little bit of experience in this situation, and I can only tell you that he probably is feeling the same way I did. I could not believe that this wonderful woman would be satisified with someone with the limitations I have. She never gave up tho, and we have been married for 2 years now. The one bit of advice I could give you would be, if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both. Another thing that has to be a consideration is if he is receiving benefits. If he marries he may lose benefits, and that could put a strain on the relationship. It is a damn shame that the disabled are descriminated against this way, especially when any benefits received are not nearly enough to cover expenses. I sure hope everything works out for you, and you are as happy as my wife and I are. It is not easy, and I'm sure you are aware of special problems that will arise, but I know that if you love each other, and are strong, you will make a full and happy life for yourselves. All the best, Jon C-2 quad, on vent, 9 yrs post.
Dear Spinner, First of all, I wish you and your guy all the luck and happiness in the world. I have a little bit of experience in this situation, and I can only tell you that he probably is feeling the same way I did. I could not believe that this wonderful woman would be satisified with someone with the limitations I have. She never gave up tho, and we have been married for 2 years now.
The one bit of advice I could give you would be, if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both.
Another thing that has to be a consideration is if he is receiving benefits. If he marries he may lose benefits, and that could put a strain on the relationship. It is a damn shame that the disabled are descriminated against this way, especially when any benefits received are not nearly enough to cover expenses.
I sure hope everything works out for you, and you are as happy as my wife and I are. It is not easy, and I'm sure you are aware of special problems that will arise, but I know that if you love each other, and are strong, you will make a full and happy life for yourselves.
All the best,
Jon
C-2 quad, on vent, 9 yrs post.
He does seem to feel the way you do,which I honestly don't quite get. This guy is the love of my life, physical limitations or not, I want to be with him forever - period. I can't imagine giving up at this point, and I would love the chance to talk to your wife.
We recently discussed the fact that he would not want me to be his main caregiver, and all of his reasons made perfect sense to me. He is 18 years post-injury and has had the same caregiver for the past 16 years, he made it clear that she is part of the family and I am glad of that.
I don't know much about the benefits he receives, thanks for the heads up on that. Yikes!
Posted on: Thu, Mar 6 2008 12:56 PM
KaraSwims: IamwhatIam:if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both. I think this is great advice. If you don't mind me asking, have you all had conversations about this yet? I thought it was interesting in your post that you shared your love and then at the end you mentioned the caregiving role so I'm not sure if this is something you'd planned on together or sort of assumed because maybe you weren't aware there are sometimes some other options. Not easy ones but they might be worth fighting for...I think the best thing you can do to "convince" him is be patient, hang in there, and SHOW him your support/love....I bet he'll come around Good luck!
IamwhatIam:if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both.
I think this is great advice. If you don't mind me asking, have you all had conversations about this yet? I thought it was interesting in your post that you shared your love and then at the end you mentioned the caregiving role so I'm not sure if this is something you'd planned on together or sort of assumed because maybe you weren't aware there are sometimes some other options. Not easy ones but they might be worth fighting for...
I think the best thing you can do to "convince" him is be patient, hang in there, and SHOW him your support/love....I bet he'll come around Good luck!
We just started discussing this stuff, I think we have a long way to go before we have it all ironed out. But we know we love each other and are dedicated to making this work. Thank you for the support!
Posted on: Thu, Mar 6 2008 1:16 PM
Posted by: Walter Schmidt, VSO CPA CTM Posts: 229
IamwhatIam:The one bit of advice I could give you would be, if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both.
On the other hand...
As a tetraplegic who is 'defined' as being catastrophically disabled (can not do much on my own), does not have much in the way of funds (can not hire 24/7 PAs; can not even get them to 'come in' when I need them at 4:45am and 8pm), and is married, the reality of many such situations is that one's spouse does become the main caregiver.
--- Regards, Walt Schmidt
Posted on: Wed, Mar 26 2008 11:22 PM
Posted by: jodi2mark1 Posts: 1
How long has he been disabled? I am not being rude but honest, I have been married for 25 years and my husband was injured 2 years ago (c3 incomplete) He is not the man I married in every way and the physical ways you learn to live with if you love each other its all worth it. The hardest part is the anger, he is angry at everything and everyone and he won't get help It is getting to the point where no one wants to be around him. The reason I asked how long he has been disabled is that oddly enough when he first came home from the hospital he was wonderful, loving and just greatful to be alive, now it is like he hates being alive and I am thinking about leaving for the first time in 25 years. If your guy is not an angry person if his spirit is sweet and loving then there is no reason that it can't work. I hope this helps
Posted on: Thu, Mar 27 2008 12:04 AM
Posted by: IamwhatIam Posts: 70
IamwhatIam: "The one bit of advice I could give you would be, if possible, you do not become his main caregiver. IMO it is necessary to keep the roles of wife and lover seperate from being his nurse. It might be fine for a while, but it will begin to wear on you both.
As a tetraplegic who is 'defined' as being catastrophically disabled (can not do much on my own), does not have much in the way of funds (can not hire 24/7 PAs; can not even get them to 'come in' when I need them at 4:45am and 8pm), and is married, the reality of many such situations is that one's spouse does become the main caregiver".
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Unfortunately, Walt, what you say is true. That is why I said "if possible". I know my wife could, and would become my carergiver, but I hope that never needs to be the case. Is there any way you could change your schedule so you could get some help? Do you think having your wife as your main caregiver has made your marriage stronger or hurt it? I do think some people can handle things better than others. I am very sorry that you can't get the care you need and deserve. Especially being a veteran.
Posted on: Thu, Mar 27 2008 1:40 PM
IamwhatIam:Is there any way you could change your schedule so you could get some help?
My workday is 11 hours -- 2 before and 2 after the 'official' 7 hours. Others suggest we physical-challenged should "stay active." I suggest more of us would, if the assistance we need was available... on our terms.
IamwhatIam:Do you think having your wife as your main caregiver has made your marriage stronger or hurt it? I do think some people can handle things better than others.
While it hasn't hurt it... Last week we celebrated our 36th wedding anniversary. This, while many (most ?) couples we know are on their second-plus relationship. It's taken a strong partner to put up with my Idiosyncrasies [smile], no less my handicap-necessitated needs. I am very furtunate.
Posted on: Fri, Mar 28 2008 6:37 AM
jodi2mark1:How long has he been disabled? I am not being rude but honest, I have been married for 25 years and my husband was injured 2 years ago (c3 incomplete) He is not the man I married in every way and the physical ways you learn to live with if you love each other its all worth it. The hardest part is the anger, he is angry at everything and everyone and he won't get help It is getting to the point where no one wants to be around him. The reason I asked how long he has been disabled is that oddly enough when he first came home from the hospital he was wonderful, loving and just greatful to be alive, now it is like he hates being alive and I am thinking about leaving for the first time in 25 years. If your guy is not an angry person if his spirit is sweet and loving then there is no reason that it can't work. I hope this helps
He is actually 18 years post injury, and I think that is making this a bit easier (which is good because there is so much - independent of the injury - that makes this very difficult). For the first time I am starting to believe we can get through this to the other side. (With amazing, heartfelt, unbounded thanks to Jon!)
Jodi, my heart is breaking for you and your man. I am really sorry that you are both dealing with this. I hope and pray that it works out for you both.
Posted on: Tue, Apr 22 2008 3:42 PM
Posted by: Tom Posts: 44
Hi Spinner, I am a caregiver for a gentleman who is a traumativ brain injury which presents symptoms similar to a stroke. I too have fallen in love with him and due to the nature of his injuries, he needs assistance with getting up/down out of bed, take showers, get dressed, and all house work, laundrey, and cooking. Since you say your man is a C-5 injury, I am going to assume he is paralyzed from the neck area or maybe upper torso area down and has little to no feeling in his lower extremities. This can either be a huge problem for the both of you or it can be a minor issue, depending upon both parties mind set as well as the amount of decreased feeling he has because if he has decreased to no feeling, he will need a lot of care. My guy does not feel too good about himself in regards to his decreased mobility and even though he has full feeling, he has decreased mobility,bringing in the areas of assistance I help him with. That is why I say it depends on both parties mind set. That all said, I think if you are physically capable of dealing with the work involved with being a caregiver, and if you are willing to deal with days that are good emotionally as well as physically for this gentleman, then you need to sit down together and talk about not only your feelings/fears, but also his and if they are close enojugh to the same goals, try it out. My favorite expression is "nothing ventured, nothing gained", and believe me, if you have the love and respect needed for this type of a relationship, the ability to convey this to each other is something extremely rare but absolutely cherished. I know from my own personal experience, the relationship I have had with my guy by far exceeds what I had ever imagined as far as being able to the little pleasures life has to offer.
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