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Caregiver / Wife needs advice

MEvansMMEvans Posts: 3
edited 01/11/2016 - 8:23 AM in Depression and Coping
I am reaching out to this community as I am scared, frustrated, and at loss for what else to do...

My husband is 45 and suffers from lower back pain, and migraine/cluster headaches.

The migraine / cluster headaches usually spring up as a result of frustration with the back pain, or me for not understanding his position.

The lower back pain truly is the source of his ongoing Chronic pain.. Degenerative disc disorder, spinal stenoisis, herniated disc, bulging disc and tears...

7 years ago is when the pain started, he went through a series of going to Physical Therapy, injections, then surgery 6 years ago. Things were OKAY for about 2 years, then the pain started in again. We've managed, but he hasn't worked since the surgery as he is usually bed ridden approximately 1 week per month. We agreed that I would take a new job, that had a lot of demands for travel, but would be an increase in salary that it wouldn't matter if he worked. So that is what we agreed to..

Not to bore the entire forum, I'll skip to the last 14 months. In the last 14 months, my husband has been in bed approximately 16 weeks. he does what he can around the house, but for me, its very very tough - he doesn't want to see the doctor as he doesn't want to have to deal with what he dealt with 6 years ago..

I've tried to encourage him, and not bring any of my troubles to him, as I know he has a lot on his plate just trying to deal with the pain.

Finally after such a terrible 2015 and me threatening divorce, I convinced him to see a doctor, he had the MRI, the doc wanted to do (Interspinious process spacers) and my husband was agreeable. The doctor warned that our insurance (united health care) may not want to do it, and instead we may have to go down the path of spinal fusion for L5-S1. Well the call came in on Friday, January 8th 2016 that the insurance denied the spacers and so the surgery for January 13th has been cancelled while we go through the appeals process, which will be for the full fusion of L5 through S1

But now my husband doesn't want to go through the appeals process, he doesn't want the fusion as he's afraid that they won't give him enough pain meds to get through the healing process (He's had a lot of challenges getting pain meds from the doctor - Tramadol makes him tired and doesn't give him any relief) - so he's decided that he'll just deal with the pain and not do anything.

Our marriage is falling apart. I'd do anything for him, but he's never clear on what he needs me to be or not be during his bouts with pain. I work from home when I'm not traveling ( I travel 30-40%), so I bring him food, drink, meds.. I sit with him, but when he is in pain, he says nothing. But we also have a 13 year old daughter at home that I'm trying to stay involved with, plus trying to keep up with my career to maintain our household.

I do work 12 hours + days. I know its hard for him when I'm on the road, and I've even offered to give up my career, and take a much lower paying job, but that we would have to give up the extra's (Our Travel RV, all the channels on Directv) etc.. Plus I do pay for his medical marijuana which can be as much as $600 per month. NONE OF THIS DO I MIND.. AT ALL.. but when I offered this, he told me I was just trying to rub his illness and pain in his face. I've tried talking to him when he's doing okay (when we are camping, etc..) - He doesn't want to talk to me about it. He feels I'm not compassionate.. And I know I have faults, but I know I'm not fully to blame. He has to take some accountability right? I make all the appointments when he says I can, I deal with the insurance. I deal with all the financials, I deal with everything in our lives.

Maybe I'm just looking at this too black and white - I know I can't fix him, but maybe just maybe someone has some advice. I'm willing to give up anything or do anything.. But how do you help someone who has fallen so deep into depression they won't go through the motions of the doctors appointments and therapies. or whatever.

Any advice would help.. I just want to help him...


Normally, I would attach a series of questions about the medical condition, treatments, surgeries, medications, etc. But I feel while that might also be helpful, this thread is more about you , being the caretaker and how to handle it all.

Let me start by saying that I've been a chronic pain patient since around 1975. Countless surgeries, flareups, etc. Fortunately, through out that time, I still was able to work. Yes, I missed time.. In all those years, add it all up and it was about 3 years of missed time. My wife had always been working. She is in the medical field, as a Respiratory Therapist and now as a Registered Nurse for Pulmonary Rehab. So, she was quite adapt at understanding patient problems, but that still did not make things easy for her. She was my caretaker all those years, helping raising our children, doing so many of the chores I could not do because of my medical condition. Needless to say, that put a strain on our relationship. I was not the best patient in the world, I can 'see' some of me in the things you described about your husband.

Each person has to be accountable for their actions. From what your wrote, it sounds as you have been more than accountable. It appears that you take care of everything that needs to get done from the medical situation to the financial situation. I know there are always two sides to any story and I can almost predict that your husband does not view his behavior and actions the way you described them.

On the other side, it appears that your husband may take things for granted and is not 100% behind taking the right actions to correct his medical situation. Anyone in chronic pain understands that surgery is not going to be the final answer. We only hope that it helps to minimize some of the constant pain we have. Even all the pain medications will not eliminate his pain. It sounds like he is very concerned about medications, (pain narcotics to medical marijuana). That is something everyone in chronic pain can face, but also must understand that there is so much more. Just for an example, read The Blend. This was something I wrote several years ago about managing chronic pain. Its a concept, not everything has to be followed, but every person can select which modules will work for them.

You are smart to realize that you can not fix him. Too many people in relationships feel that they have failed because they cant fix their partner's condition. It also sounds to me that if this continues, it will just snowball into more difficult situations. He is dealing with the physical pain and also with a good amount of depression, which is fairly common with chronic pain patients. You may not feel the physical pain, but you are suffering from the emotional pain. He has pills that can help make him feel better, there aren't pills that can do the same for you.

I am no medical professional, just have been through this so many times. At some point, before there is disaster in your relationship, there needs to be some assistance. It would be great if the both of you could sit down and have one on one open communications. Sharing fears and feelings about your current situation. There is also nothing wrong about seeking professional help in the way of counselors. There are many counselors that deal specifically with people living in chronic pain. We all accept the fact that people can take medication to get better, but not everyone feels comfortable about seeing professional counselors to make our souls feel better.

Both of you are not on an easy road. It is difficult. There isn't one clear cut answer. I just hope that some of what I just wrote makes some sense.
Good luck, I think you will need it and also stay strong, but at the same time, realize everything cant be on you.

Ron DiLauro, Spine-Health System Moderator
Merideth Evans


  • SavageSavage United StatesPosts: 5,427
    Welcome to Spine-Health
    Please click on link for helpful information!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • SavageSavage United StatesPosts: 5,427
    I very much agree with Ron's response to you, above.

    It is very difficult to see someone you love suffering so. And you have taken over in so many ways.
    It can be exhausting for you.

    I may have missed it, but I wanted to add, please take care of yourself, also.
    Ron suggest counseling, and I wanted to add, even if your husband may not want to go, it may benefit you greatly if you went for yourself...and take care of your feelings...re anything...and I would think your feelings re some of your husband' decisions.

    It doesn't have to be a forever thing.
    But information you can receive ..tools you can use..can be quite helpful and useful...actually life long benefits.
    As Ron mentioned, it's not an easy road....for either of you.
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • Lily2014LLily2014 Posts: 84
    edited 01/12/2016 - 6:02 PM
    Just to add to the above. I think Ron's comments are really helpful and I replied to you on another thread, but will post here as well. It sounds as though you have been a wonderful support. I cannot even begin to imagine how my life could have been different if I'd had the type of support you have given. To give a brief history, I've had chronic pain for nearly 4 years and have had 2 surgeries. I've posted on here a few times about my partner/significant others and their support (or lack of it). I tried everything to get my partner to understand and support me in the way you have described. But after many years, he has decided very recently to leave me (6 months before our wedding I may add) because he doesn't want to be with someone with chronic pain. I have done everything to try & keep the relationship going, but sadly it hasn't worked. Despite needing support, I took on extra work because of our financial problems because he decided to take a lower paid job. This inevitably caused me many more problems with my back. I did all of the chores - the washing, ironing, hoovering etc despite the pain it caused me because he simply wouldn't do it. Over time, as I've needed more help, he began to resent me and the anger built up inside of him until he'd had enough.

    So I think that everything you have done and continue to do for your husband is truely amazing. It's really important however that you have an outlet to talk about your feelings. Don't feel like you are struggling alone - ask friends or neighbours to help. You'd be amazed how many people do offer help when you ask. Your husband may feel guilt and a sense of loss about what he can no longer do. He may feel resentment that you can go to work and do all of the things you can do which he can't. Please remember that although this may be directed towards you, these are his feelings of loss and sadness. The situation you are both in is very very difficult and both of you will have your own feelings of sadness about the pain he is in. I think it is an excellent idea to go for some help from a counsellor or other specialist who can really help you to both feel valued. It seems as though you feel under valued and at a loss as to how to help. Remembering that go can't fix it, but can help, is really important.

    With regards to your husband's fears about the surgery, I can relate entirely. After my first surgery, the pain management was really poor and I didn't cope well. When I knew I needed the next surgery, I spent quite a bit of time speaking with the Dr's about how it could be managed beforehand. There were still problems. However, I was in far less pain and having planned my recovery, I have coped much better. I think it's important to remember that any surgery is really scary and we always worry about what may happen if it goes wrong, doesn't help etc. I'm allergic to a number of pain meds which made my situation more frightening, but there are many (stronger) pain meds which Dr's can prescribe to help with pain.

    Please stay strong and look after yourself. The road may seem long and daunting, but you obviously care about your husband a great deal and that in itself will help you to get the help you both need to survive this difficult time.
  • Thanks for all the thoughts expressed here.  I have taken up some talk therapy that is helping a bit, but outside of taking care of myself and hearing that husband needs to take his own inventory on how he talks to me and my daughter - I haven't found much relief for him or me.  

    I've been searching for Caregiver support groups, as well as doing a great deal of research for my husband to hear from others with Chronic Pain, but he's just not interested in reading any of the material I've provided.  

    I won't give up, and I'll continue to try to help, continue to read in this forum of how others are coping with pain and continue to be an ear for him.

    Thanks to all!
    Merideth Evans
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