Caregiver Induced Guilt

bigwave916bigwave916 Posts: 14Member
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We have been dealing with my SCI since September of 2017.  I've always felt a little guilty for what this has done to my wife, but today I got the most severe kick in the nuts I could have imagined.  It came out in a discussion and not necessarily a fit of anger so to me it seems even more hurtful.

The conversation centered around remodeling our home or having a home built that is user friendly considering I am in an T10-L1 somewhat dependent on a Hoyer lift.  I haven't had a shower in 2 years and have to be cathed. I can't get into the bathroom.  We had a custom builder come in to discuss an addition to the house that would include a sunroom, an enlarged master bedroom and an enlarged master bath with a shower that could accommodate a wheel chair.  The cost we learned is enormous.  I was thinking $50,000 and the builder says $80,000 won't cover it.  It would be so much cheaper to have a home built with provisions for my disability.  After the builder left she went out to do yardwork and that gave her time to think.

When she came back in, I wanted to discuss further, but what came out of that discussion was her saying to me that if I'd lose 100 lbs I could use a manual chair and then renovations wouldn't need to be so extensive, and we could stay in our home.  I'm  large guy and always have been.  I've lost muscle and put on fat so that makes life in the chair worse.  The weight she wants me to get down to is less than I weighed when I was a senior in high school playing football and other sport with a young man's metabolism.  I'm hurt, disappointed, and a little pissed off. 

She's concerned about a mortgage but I can work this so that the house payment is same on a new purpose built home as it is on our current mortgage.  She doesn't want another mortgage because she wants the current mortgage to run it's course.  Damn it. This mortgage is little over 3 years old, so a new 15 year loan isn't exactly a hardship. I can't believe she thinks I should just get better.  I'm doing the best that I can.  If she is going to fight me on this, maybe it's time to think about divorce and living on my own. If she's going to use my money and hoard hers then I want to be separate our finances and relieve her of any pain she's having related to my disability.

35 years of marriage, and I wasn't expecting this.    I'm upset and really feeling hurt and I don't have anyone to talk to so getting this out was important to me.

Thanks


Comments

  • AskNurseLindaAskNurseLinda Information Specialist Posts: 74Moderator, Information Specialist Information Specialist
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    Hello, Bigwave916, Your story saddened me for you, your wife and your family. SCI has the potential to really take a toll on everyone. It sounds like there are unresolved issues on all sides. I hope you will take advantage of some counseling. A third, outside professional can help defuse the situation as well as getting to the root of the issue. 35 years is a good foundation. I hope you will be able to build on that. My thoughts are with you both. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

    Register for my next webchat! Sign up here!

  • WAGSofSCIWAGSofSCI Moderator Posts: 301Moderator Moderator
    100 Likes 100 Comments 25 Awesomes First Answer
    @bigwave916
    Hello :) First off, sharing your story must have been extremely difficult for you. You have amazing courage to tell your Side of this story, and you should be very proud of yourself for putting this out there. It's going to help many people and encourage others to share their stories. 

    From my perspective as a WAG of SCI, I can tell you your wife's actions are very familiar to me, since I have acted that way myself when I was frustrated and feeling hopeless at times. I have also witnessed many many other women who are caregivers and partners to someone with an SCI act this way. 

    My husband is a C4 - and is totally dependent. He has worked so hard to become the slightest bit independent, but, his level of injury and secondary complications in his left shoulder hasn't permitted that yet. He uses a power chair most of the time, and when he does use his manual chair, he needs help doing everything including getting round. He has learned over time to take full responsibility for his health, what he puts in his mouth, and how he devotes his time to rehabilitation and working out as best he can. I am very proud of how far he has come as I know that there are many C4 injuries out there who cannot even lift their arms. Ive always found ways to be grateful and accept his limitations 

    That being said, there are times when I feel frustrated, alone, and unheard/unvalidated in my emotions. When something happens to do with finances especially, its hard NOT to blame things on him and his injury. I have learned however that the reaction is coming from frustration - and is an immediate reaction to the situation. I used to get angry at him, yell, become depressed for a moment - but I learned that me wishing things were different is NOT going to get US anywhere. 

    Being a caregiver and a wife is a choice. Its hard, yes, but it is also very rewarding. We have learned to communicate with one another so well that I have learned to watch myself and become very very self reflective on my actions when I feel frustrated at certain situations. Ive learned that in no way can I blame any situation on his injury as I have chosen this life, and, it is not his fault that things DO cost more for people once they sustain an SCI. He didnt ask for this life either, but, neither did I. *Breath- accept - release.* Ive learned that all I can do myself is learn to look inward - how can I handle things more efficiently and without becoming more resentful toward him? The simple but difficult answer is talking everything out - as hurtful as it is to him. He himself has learned to not take my frustrations personal, and its difficult for him to hear me say "i'm frustrated that your injury has left us in this situation because of the limited options we have" BUT.. he has learned to listen and help me come to certain conclusions with compromise and patience. 

    I read your story and I immediately thought of how she could be feeling from my perspective. Resentment, isolation in her feelings and being stuck with options that are not ideal to what she thought her life with you would dictate. These feelings are NORMAL. As a caregiver, this injury impacts the spouse in SO MANY ways - without the ability to express her true feelings as often as she would like, in the heat of the moment, things like "You should lose 100lbs" comes out because it helps her release her pain in a way that not is necessarily healthy for either of you. It hurts you, and she probably feels guilty for how it came out. 

    Like I said above, the answer is communication. Getting to a place where you both feel free to speak about your pain without the other getting personally insulted or feeling attacked. Yes, its very hard to get to this place and it requires an intense amount of work, but from my view, its worth it as these tools will become incredibly helpful for your relationship and yourselves personally as you move on in your married life. To get here, it requires you to listen - and hear her. Really hear her. And ask what she is actually needing when she lashes out with hurtful statements. It also requires you to get to a place where you wont get upset when she reacts this way after a big negative situation has occurred. It requires HER to start to realize that her reacting this way is just a release, and she doesn't necessarily have to release it this way. 

    You may have gained weight and it may very well be not helping the situation, but, getting upset at it instead of working out ways to get to a better place for both of you TOGETHER is not going to solve anything. It may be a factor in the situation, but like Nurse Linda said above, it sounds like your issues stem from a lot of other deeper things that can be helped with counselling.

    I know I do not know both of you or anything about your relationship myself, but seeing your story did shine a light on my experiences and does resonate with me because my husband and I have been there. I have thought about divorce myself at times, as it is the easy way to get rid of problems that haven't been attended to. But, at the end of the day, I love my husband enough to work on myself, as that is ALL anyone can do. Deal with their own stuff. You CANT fix another person, all you can do is compromise, work on communication, and learn to LISTEN to each other - IF that is what you want. I have always looked inward and tried to find ways that each unsavoury situation can bring GROWTH and make me a better human and communicator. Your emotions and reactions are your choice. 

    Thank you for listening, and nice again for sharing your story. 

    Brooke 
    Your WAGS of SCI
    (Elena and Brooke)
  • bigwave916bigwave916 Posts: 14Member
    10 Comments 5 Likes Name Dropper Photogenic
    Thank you @AskNurseLinda and @WAGS of SCI.  I really appreciate the thought and heart that went into your replies.  Just what I needed at the time.  I will find some time to respond with an update and how your insight and counsel have helped me.

    Regards,
    Bigwave916
  • bigwave916bigwave916 Posts: 14Member
    10 Comments 5 Likes Name Dropper Photogenic
    Hello again,

    Its been more than three months and I'd love to report to you that things are better, and in a way, they are.  The current status is that little or nothing really has been done about remodeling the home, but I think we're near to giving that another try.  Of all the options, that would please her most, staying in our current home and location.  She is happiest when our granddaughter, who lives just 2 hours away, is here. We just had a great weekend.  I managed to paint and renumber the mail box and post.  We played the bean bag toss game aka "corn hole"  (Looking forward  to Wheelchair Cornhole Championship if they ever have one.)  :)  We had a great time, went out to dinner, and everything was fine.

    I have PT/OT twice a week and it's a 40 minute drive.  She takes me without too much grumble or complaining, but I liked it better when she went into therapy with me.  I'm not sure why she doesn't come in anymore.  Says she catches some sleep in the van during the two hour sessions.  My therapists want her to come in so they can teach......she doesn't want to and I can't force her, obviously.  I'm getting better on transfers and looking forward to transferring again at home but we need a different bed and I need her to help.  I've had two falls that resulted in severe leg/hip fractures and to say we are timid about transfers is to understate the situation.  So while I'm trying to get better, she just doesn't want to get any more training it seems.   

    I'm worried about her anger spells.  It is hard to believe that she has gone from a beautiful wife, with dark brown eyes and a radiant smile that she displays nearly non stop when others are around, to someone who can display the most hateful look with jaw clenched and a scowl of disgust fully displayed.  She is now having more and more severe fits of road rage when we are on the road.  Some of these are nothing at all but she perceives these as great infractions and offenses that require an icy stare and usually laying on the horn to get the other driver's attention. It's not healthy, to say the least.

    She is napping right now, 2 hours on this nap plus another hour or so during my therapy plus 7 hours or so last night.  I fear the need for all this sleep is a sign of depression.  I don't know what to do for her. Talking about it is just as likely to lead to another fit of anger than any sort of relief.  I don't want my girls to have to deal with this, but I fear it is only a matter of time before they are affected.

    Funny thing is, I can't go anywhere unless she takes me, so a lawyer is out of the question.  I'd get to work on losing that 100 lbs, but food is compensating activity.  Tomorrow is my SCI support group. She has attended with me so far.  I hope something comes out of tomorrow' session that helps us to turn the corner.  I don't want to be 67, crippled, and divorced.
  • prc_Bethprc_Beth Information Specialist Posts: 17Moderator, Information Specialist Information Specialist
    10 Comments 5 Likes Photogenic

    Hi Bigwave916!

    I'm sure this must be stressful for you and I'm sorry you are going through this emotional stress. She might be depressed. Do you think she might be interested in speaking to a Peer Mentor? It might help her to have a someone she can talk with about how she feels. You can be matched with a peer mentor as well. Information about the Peer & Family Support program can be found here: https://www.christopherreeve.org/get-support/get-a-peer-mentor

    We also have a fact sheet on Caregivers, Personal Care Attendants and Respite. That fact sheet can be found here: http://s3.amazonaws.com/reeve-assets-production/Caregivers-PCAs-Respite-2-19-1.pdf

    Stay strong!

    Beth

    Associate Information Specialist


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