Beverly, I'm so sorry you're both in this predicament.  Are there any neighbors or friends who would help out, if only for an hour or so in the evening?   Easy for me to say, but I would tell the son that he needs to step up to the plate and help out in a practical way, on a regular basis, not just drop in when his conscience gets to him.  You do need to take care of yourself first - as a friend told me recently, even airlines tell you to put on your own oxygen mask before taking care of anyone else.  Wish I could help you. 

‎"In sickness and in health, for better or for worse"...Just about the easiest vow to break when you are placed in such a life changing event. Sometimes family and friends can't cut it. True sympathy comes those who have been in your shoes. Hang in there though Betty...sounds like you need a solid support group. Look for peer support groups for families living with SCI "survivors" in your area, they're always a good source of not only comfort but have plenty of first hand resource knowledge. All the best to you and your husband.

I live in the UK and am in my 5th year of caring for my husband who is a c4. My career has had to take a back shelf as no one will employ someone who, as you are experiencing, needs time off as and when and all leave has been taken. I have found any support soon  falls by the way-side, everyone has their problems  and work commitments also, then they find it harder to call. The pressure to keep everything going as normal as possible, especially as we have a little girl, is immense, and expectations are high. I have spent so much time and energy making my husbands' world safe,  protecting him from neglectful situations, fighting for his rights, that i too wore myself out and my own health  has been affected. Like yourself I also have dreaded coming home, knowing what i would be walking into again, but i now make everyone wait when i go through the door until i have had a coffee and size everything up, then begin to sort things out. I have learnt to be a little selfish and alot more firm. We are only one person and one pair of hands but soon become like an octopus. In our situations, whatever gets thrown our way, we can only do our best, when is it ok to walk away? I have seen so many do just that in the first hour after an injury  because they cannot cope or soon find out this new way of life is not for them. I never condemn these people as they had a choice. I chose my path, you are quite within your rights to choose yours without any guilt or remorse. i agree with the remark to get the son to pull his socks up and take some responsibility, i think you are a strong lady deep down, even if you don't think so, and just need a break now and then. You are not alone! with love and support from Wales.

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dear beverly, I'm sorry you and your husband are having such a difficult time right now especialy around the holidays always seem to just bring that little extra.I am certainly no expert on the situation at hand but I can offer some friendly advise. I have only been paralized since aug. of this year but that dosen't mean that my girlfriend and I didn't have to find some sort of neutral ground. I think your on the right page when you said that when you get home from work you just need a few minutes to yourselk to figure things out, I personally see nothing wrong with that at all and then just start taking things one at a time in order of priority. Then at some point in time your husband is going to have to start taking some of the responsabiliies on his own shoulders within reson of coarse. Even if its just folding a basket of laundry or doing the dishes or just something that shows that he is trying to help you and himself. I see nothing wrong with trying to do some housework while my girlfriend works besides it gives me something to do and makes the time go by quicker if i'm busy and don't get to see her. As far as the son goes that situation angers me to my core. He absolutly should be there on the weekends helping you and his father out. The best thing he could do is give you a weekend away from home , go somewhere by yourself or a girlfriend and have some fun let your hair down and go to a nice resturant  even if its just for one weekend out of the year. Where you don't have to think about home if something like this dosen't  happen soon I afraid of the out come and qulity of your life. Your husband should also see that if your a happy person its going to make his life a whole lot better. I will check on your story from tme to time I hope everything works out for you both. YOUR FRIEND MARK

Hi Beverly,
    I hate that you are stuck in this predicament. Your husband is trying turn learn how to deal with the loss in his life! He doesn't know, "who he is anymore". Our government has made it extremely hard to survive. They keep cutting benefits that were already in short supply. I know because I am a T-10, T-12 para. In 2004 I lost my wife, house, job, truck, dog, etc. everything that I own! It takes a while to process. Many times I wanted to take the easy way out. If it hadn't been for family support, I would have!! I don't know if your husbands attitude will get better soon or not, that is soley up to him!!! I can only say how proud I am of you for trying to hold it all together. Most people run from the start. I hope that the two of you can make this work, but you do have to realize that your life is and always will be changed forever. I never had in home care and didn't recieve much medical care because of budget cuts. It has taking me nearly 7 years to want to have a life again. My family has had a hard time trying to understand all of this!! Finally though, I am ready to start over!!! I wish you well and hope that things get easier for you!!!!

Sincerely Shannon

Beverly,   Sorry to hear your predicament has gotten worse, I understand some of your frustration as I worked 12 hour shifts as a Respiratory Therapist in two ventilator dependent unit for ten years. 
For the past 12 years, I have developed a concept of Assisted Living for ventilator dependent quadriplegics.  It houses vent. dependent quads in an ultra-modern setting allowing them more independence because of computerization. However, It lacks the important necessary variable, the $800,000 to set one up.  Individual costs are $94,000/year/individual client.  If I could get 10 clients with the cash to complete the concept with a facility, we could help you.  Check outmy website  www.vdqliving.org for particulars.

Dear Beverly, I am mother and caregiver to my 25 yr old son who has a C 6 complete injury for 4 1/2 yrs. My son lives at home with my husband and I .  We have had our share of ups and downs too. I know that our situations are completely different but you sound exhausted to me. I would encourage you to take some time to rest and recover while you have the home care available. Even if you take the weekend to go to a girlfriend and rest and watch movies and do something just for you. I think one of the hardest things to do when you are a caregiver is to realize that you can't do it all. Is your husband working? Is he doing rehab? Depression may be an issue as well and may need treatment. You both may benefit from talking to a counselor even just a few sessions in order to set some boundaries for one another. My husband and I are planning on doing that in the New Year, we need to get our son doing some planning for the future that doesn't include us 24/7. Blessings to you, Kim

Dear Beveryly,

I feel for you I really do.  In 2010 my significant other had a C6/C7 complete injury.  We're in our late 40s.

When you said "We argue about everything, everything!"  I could easily relate because that's been our story lately.  But we go through this from time to time.  Then we have a big, raw, honest all out argument and get everything out on the table.  And by everything I mean everything.  Because if we don't, whatever we don't talk about festers.

Then we make changes where we need to.  And there are no rules to the changes we make.  If it works for us it works.  We are very "out of the box" thinking kind of people and some solutions are unique one-of-a-kind things just for us that we came up with on our own.

So far this isn't so much a matter of what works or a plan (just like, as you know, nobody plans an injury like this) but it's what happens with us and we're still together.  We also want to stay together (so far) because we both truly like each other's personalities. --  Do you like your husband's personality?  Has your husband's personality permanently changed?  Has yours?

I refuse to treat her as if she has a mental disability.  In other words if I have something to say I say it.  I don't go easy on her.  But I also stick to the facts and no name calling.  Just like she doesn't go easy on me.  That would be insulting to both of us if either one of us did that.

Last night, I said I was "done".  Then, around 2:30 in the morning we started to get to the bottom of things and today got things worked out - this time.  I don't know what will happen next time, and there will be a next time, but if past history is any indication then I think this will be our pattern.  But then again maybe it won't.  Everyone is different, every injury is different, every recovery is different and every relationship is different.  As you know, people and relationships change.  Sometimes they change in the same direction and sometimes they don't.  That's life!  No guilt, that's just life.

For us, before the accident and since the accident communication's the most important thing in our relationship.  The good, the bad, the ugly.  I tell her when people hit on me she tells me when people hit on her.  And yes, she's been hit on after her injury by both disabled and able-bodied men.  Nothing is off limits for us to talk about.  We talk about everything and sometimes we argue about everything but I think that's good to do.  So far the talking is outweighing the arguing.

I didn't read where you mention having a "come to Jesus" meeting (big argument) with your husband.  Maybe it would help if you did this if you haven't already.  Maybe it'll help maybe it won't.  What's important is for both of you to get everything out in the open.  Be completely honest with each other, listen to each other, and then be completely honest with yourselves about what the other person's saying.

As far as his son goes.  I'd just tell the son . . . look, you wanna come here? then it's gonna be like this . . . take it or leave it.  Then you tell the son exactly what's expected of him.

The son's a know-it-all?  Sounds like my sweetheart's mother.  It doesn't matter what the son knows.  What matters is what his dad and you need.  And only the two of you can tell the son what those needs are.  The son can't tell you what you need.  If the son listens - great!  If he doesn't listen - I'd say tell him to leave and stay gone until further notice.

It also sounds like the son needs to have it explained to him in no uncertain terms that his dad has had a very serious injury and with the injury comes bedsores and bedsores can lead to infection and infection can and sometimes does lead to death.  If the son doesn't get this then he needs to stay away until further notice.  Like the U.S. Marines' saying "lead, follow, or get out of the way".  You and your husband lead - the son needs to follow or get out of the way.

Just thought I'd chip in with some of our experience.  Hope it helps!

Hi Beverly,

I am shocked.  If your husband is a paraplegic T4/5 he should be taking TOTAL care of himself!  I am a C5 quad and do most things for myself my wife only helps with things that are impossible for me. You should not have to do anything for him other than what any other wife would do for a husband. I believe marriages should not be broken but both parties must be committed and both do your best. Give him an ultimatum to get himself right with enough time for him to do it. A T4/5 does not need a care giver.  
 

Andy

Hi Beverly. I'm sorry for what you're dealing with. Do you by any chance belong to a faith community in your town? If so, perhaps you could ask for help from other members. Does your husband have any friends who may be willing to come over and watch a game or play cards, whatever, and give you a chance to get away for bit? As for his son, your husband needs to speak with him and point blank ask for assistance for both of you. I wish the best for both of you.

oh god, you need a vacation to Hawaii, and just lie in the sand and be a slug. Caring for us with Spinal Cord Injuries is a BIG job. Is your hubby on antideppressents? I know they saved my life and made it a lot easier for those around me. I was injured in 1972 so I have had a Long time to perfect this Disability stuff. It stinks, but the alternative is worse. Give your hubby my email address and maybe he can vent on me and love you. For a man it has to be even harder than for a woman.You are carrying a Huge load, let me see If I can help..Love Nia

How correct you are about our government not making It easy for the disabled. I can have all the surgeries my Neurosurgeons can think up, but I can't get help for food or shelter. I see the Welfare families in my neighborhood having the biggest homes, the newest cars, and even boats and large motor homes.  These people collect Welfare and at times I find it hard to find enough pennies to buy lettuce. The disabled are overlooked, but it is even worse in other countries. They are  out in the streets living with their cups and only the love of those who pass by who put a few coins in.

I think WE (the disabled) should somehow start a fund so that we can send these incredible caregivers to Tahiti or  Hawaii to lie on the beach and contemplate the surf. These caregivers are the True Angels on Earth.

Beverly, When my mom was injured over 9 years ago I was really sure my dad wouldn't last a year of caring for her as a C3,4,5 quad.  They had longterm care insurance to help pay for caregivers to come into their home about six hours a day the first 7 years, and now private pay for about 7-8 hours a day except Sundays.  My parents are now 81 and I know my dad's past the end of the rope, but he hasn't thrown in the towel.  There are a few things I've seen that may give perspective.  Mom lost control over lots of things when she was injured, so she kind of quit doing everything, including keeping things organized and managed.  Both their personalities were magnified by the pressures they had to deal with after the injury.  Mom felt she had no control over most things in her life anymore, and Dad felt he had to take care of everything, something he actually enjoys, but isn't doing well.  They've had a few arguments about control issues, and I believe Mom is reluctant to say much to Dad because she's afraid that if she tells him everything about how she feels that he will walk away, because he can.  On the other hand Dad stays to care for her because he does love her, and throughout his life she did lots to care for him and he feels he owes her.  

I'd like to see them get counseling together so they could talk about the things that create tension between them, but they won't.  They did go get anti-depressants, but that doesn't help solve the problems between them.  I've suggested support groups, but they won't do that either.  They've alienated most of their friends, so they don't have anyone to talk to about their problems, except us, their kids, and who listens to ten year old daughters?

Beverly, you both should consider counseling, separately or together, to talk honestly about your feelings in a fair way with someone who can help you work on ways to form a plan to make changes that you both agree will make your lives together better.  Try to find a support group for caregivers, whether for SCI or not, caregivers are caregivers, so any care group will do.  It will help you so much to know that you are not alone in your feelings and the reality of your life.  Your husband should try to find a support group for himself too if he can, one for people with SCI if possible, but people with ALS, MS, Parkinson's, are all faced with similar situations of being dependant on others for their care and limitations on their lives.  Then consider your financial situation and see if you can afford a week or two of respite care a year, where your husband is placed in a facility or stays with another relative (not his son) while you take time away to rest.  If he has served any time in the military make sure you are getting all Veteran Benefits that he's entitled to, which may include "Aide and Attendance" that would allow you to have paid help to come into your home to help care for him, or pay for him to go to an adult day care center.  Check with your County's Adult Social Services to see if they have any kind of programs that offer in home care each week for reduced cost or free that he may quailify for.  Also try calling 211 and explain your needs to see if there are any chruches that have free programs that may help, like Shepherds Centers or home visitation programs.

In the end it is an issue you have to make a decision about because only you know what the situation is and just what you can handle.  Caring for another person is incredibly difficult no matter who you are.  Having to handle their personal, financial, medical and legal care, as well as your own while working, doing housework, yardwork, grocery shopping, blah, blah, is way more than any one person can handle without any help from other friends or family.  You can only do so much for so long before your body, mind, and spirit break down from complete exhaustion.  It's easier to do caring for someone who is appreciative, and when you feel you are caring because you want to and not because you are forced to.  Maybe some time in counseling or with talking with others in a support group will help you focus on your needs, your husband's, and where the two of you need to be in the future.  You absolutely should be more content and live in a situation where you come home at night to a place where you feel safe, loved and welcome.  

Beverly, I realize this post is almost a month old, but I would love to speak with you. I feel this way often, just exhausted having to bear all the responsibility, I would really like to talk to you! I am out of town til friday which gives me a chance to talk....its my first time away in over 2 yearS! My email is thekeils@yahoo.com and my phone number is 3035708495 Thanks Tracy

Hi Beverly,
I was responding to you before I hit the wrong button on my computer and deleted everything.  I was nearing the end of my responds when this happen.  It's late and I'm tired. so I was not going to write to you.  I had given up, but I can't stop crying and thinking about your life.  Your story is so much like mines.  On 12-14-11I had a very bad car accident and had to be cut out of the car.  I'm still receiving treatment for my injuries.  I just had surgery on my shoulder on 10-25-11.  I'm still suffering from nerve damage, back pains, neck pains, arms pains and legs pain all resultlng from the accident.  I try to keep a positive mind and I spend a lot of my time helping others.  That's the way I handle my problems.  My injuries has changed my life forever.  I know the car accident I had changed my family life as well.  At times it seems like things was so bad I just wanted to give up.  I knew I couldn't give up, because of my faith.  My advice to anyone that might be going through something that make you feel like giving up and when your home is no longer home sweet home.  Look up and thank the Lord in advance for the better days that is coming.  I know you may have heard these words of encouragement before, and you may have said to your self (It's easy for you to say that bause it's not you who is going through this.  After reading your story I knew the time has come for me to look into my own life. I need to focus more attention on my family and the pain I most have caused them.  I thank God that they haven't given up on me. Most of all I thank God for not giving up on us!  My advice to you is for you not to give up, because your husband need you.  Believe me your husband feel and see your pain.  That's why you guys argue a lot since his injuries. It sounds like both of you are looking for some attention and arguing has become the way to get attention.... Always remember that old staying "The Lord Will Not Put More On You Than You Can Bear".  Always remember that we were all born with a purpose for our lives.  You will be rewarded one day for all the good you have done.  Reach deep down in your  heart and soul and fine the person that took a vail to love her husband for better or worst.  Here's something that I hope you will always remember when you are feel like giving up.  Thank the Lord for having a story to tell, because some people don't live to see a new day.  I know there have been times in your life, when you looked back and asked yourself how did I get through all of the hard times?   Well let me tell you it was the Lord that carried you.  The answer to your question when is it ok to walk away?  It's time to walk away when you are willing to let the Lord carrie you!!!!   I hope to stay intouch with you because we have so much common.

Theresa E.