I apologize this is so long but I have so many thoughts and questions going through my mind. I'm not sure how to say/ask what I want to say/ask but my husband and I (mainly me) are struggling with the caregiver/disabled roles and I don't want it to ruin our marriage (23 wonderful years last month!!). Let me start by saying I in no way want to offend anyone who is a caregiver or make light of what you go through on a daily basis. I want to further understand it because the man I love with all my heart is going through it and I don't know how to help him (us). I have RSD/CRPS, Sjogren's Syndrome, and Palindromic Rheumatism (a form of RA). Up until 5 years ago I was a healthy wife and mother of two teenage boys (now in their early 20's). I was working full-time as a RN on an oncology unit and serving in the church alongside my husband in numerous ministries (he is the Minister of Music at our church) while taking care of the family, house, pets, and so on. Life was full, busy and very happy. Then within a very short period of time our lives changed forever due to my health. Life suddenly became a whirlwind of doctor's appointments, hospitalizations, surgeries, tests, medications, medical bills and diseases. At first the RSD/CRPS just affected my right arm and shoulder and I was able to continue working and do most things with minimal assistance. But as time progressed the RSD/CRPS spread and in March 2008 I was forced to leave work and go on full disability. The RSD/CRPS now affects both arms and shoulders, rib cage on both sides, chest wall, and my spine. It also affects my stomach and heart. And the Sjogrens and rheumatism have difficulties of their own. 95% of everything I use to take care now falls on my husband's shoulders. In addition to working full-time in ministry (which is way more than a 9 to 5/40 hour work week) he has to care for the house, the boys (who are fairly self-sufficient but still need advice and guidance--my oldest is 22 and a senior in college living at home and my youngest is 20 and suffers from chronic daily migraines and requires frequent trips out of town for dr. apts), and me. He seldom complains but I know it has to be a tremendous burden on him. If I could in anyway pick up some of the slack for him I would in a heart beat. Then there are the financial pressures. We went from making a pretty good income to living on his pay as a minister (which is meager at best) and my SSDI (which doesn't come anywhere close to what I was making as a RN). Praise God--He has provided for everything we need and we haven't been without a meal yet but the medical bills keep coming and more than once my husband has considered leaving full-time ministry (which I don't want for him) or getting a second job. More stress he doesn't need. I worry that over time my husband will resent me--not on purpose--but subconsciously. There is nothing I did to cause this nor anything I can do to change it and we both know that but I still worry that over time all the added stress and pressures will wear him down. And try as I might I can't help but feel like it is my fault that he is having to go through all of this. I don't want to be a burden to him. Does this make sense to anyone?? So, how can I help him through this?? I try to encourage him to keep an outlet. He is an avid cyclist and rides his bike almost daily. He is sometimes gone for hours at a time, especially on Saturdays when he can take a long ride and it's just him, his bike, and the open rode. It's also great exercise which I know helps with stress reduction. We use to ride together and I miss it so much!!! I also miss sharing in many of the ministries we use to do together at church and I am no longer able to do. I feel like I am becoming less and less a part of his life. How do I stay involved when I can't get out of the house for weeks at a time? Last year he went on a mission trip to the Ukraine and of course I could not go. I missed him terribly while he was gone but I grieved that I wasn't a part of it. I can feel us slipping apart and I hate it. Another area we are slipping apart is in the bedroom. We have always had a healthy sex life but the frequency has gone way down. Although we have found ways to adapt and make it where sex itself is not painful (the majority of the time) I often have increased pain for days--sometimes up to a week--afterwards. As much as I still find him desirable, I'd be lying if I said I looked forward to the pain after. Much in the same way he doesn't want to hurt me. The result is his needs are not being met. It's not like our relationship is all about the physical or anything but that is a very important part to him. I don't know if any of you have read the Five Love Languages by Gary Chapman or not but it talks about the way we show/receive love. My husband's love language is physical touch. When the physical part of our relationship is lacking he feels alone and unloved. That is the last thing I want him to feel and yet it is in direct conflict with this monster of a disease I have. So what do I do? He is such an honorable man he would never cheat on me but I almost feel like I am tempting him to it in a way. I'm not purposely withholding from him but we tend to avoid those things that cause pain. So what do I do? He'd be so much better off without me but neither one of us want that. So how do we do this? Does it get easier/better as time goes on and you adjust to the new roles life has handed you? I'll be the first to admit I am not dealing with all of this very well. I am hoping that some of you that have been through this can help me...give me advice. You all probably think I am a mental case but I really just want to get through this with our marriage intact and hopefully stronger.
Cricket

Cricket,
I'm sorry you are going through such a hard time. Although my marriage hasn't been going for as long as yours as stories sound very similar. We have two young children (both under four), I was a very active stay-at-home Mom. I would run 5m. daily, as my stress relief. My husband had his bowling leagues he enjoyed, as well as he occassionally "boys night" out. Then last April I had a shoulder surgery and our lives changes forever as I developed RSD/CRPS from the surgery. It has spread to my whole left arm and up to my neck, starting in my back. As you said 95% of the household duties now fall on my husband's shoulders, as well as being the only income for our family. I have recently applied for disability but have heard the process is long and difficult. The amount of stress it has added to his life is heatbreaking to see.
You are the first person that I have see talk openly about the painful effects of sex. I love my husband with all my heart and want to express that to him in every way possible. Also, the intimacy is such a special part of a marriage, and I feel that slipping away at times. How have you and your husband found ways to make it less painful? We try and have small intimate moments, my husband's love language is also physical touch. What do you do when the physical touch causes so much pain? We try and do little things like hold hands or pinch a butt cheeck now and then but it's just not the same. He's afraid to touch me, and likewise I'm afraid to have him touch me. I would love to hear anyone's ideas on how to create the intimacy without the pain....
Eli

Eli,
Thank you for replying. I am sorry for all you are going through too. If it gives you any comfort, when I applied for disability I was worried because I heard all of the nightmares of how difficult it was and how long it took also but I was approved the first time and it only took 3 months from the time I turned in my paperwork until I got a decision. I'm not saying this will happen for you, just giving you a ray of hope. I would be happy to share more with you about some of the ways my husband and I have discovered how to still be intimate without excruciating pain but I prefer to Private Message you rather than share it in an open forum and risk the chance of offending someone and after all there we do have young readers who don't need details. It's late tonight and I have an appointment tomorrow but I will try to PM in the next day or two.
Cricket

Bless your hearts ~ Both of you are going thru some pretty rough times.

I'm a chronic painer -- and have been for more than 25 years. I've had 2 open spinal surgeries which have left me disabled & in lots of pain. I take pain meds, but that barely touches it. I am also on SS disability.

My late husband also had spinal problems and was a chronic painer. Between the two of us, we couldn't make one good body! LOL Before he got ill with his final illness, he had to do most of the stuff around here because I was in worse condition than he was. I tried to do what I could -- but would always pay for it the next few days.

But I did "take over" some of the more stressful chores, like paying of the bills, talking with insurance companies about their payments to providers, or their lack thereof. In other words, I basically did all the "accounting." Then I managed to do the dusting -- I'd have to rest in-between, but it go done. If he carried the laundry to the laundry room, I did the washing/drying. We both cooked -- when I cooked, I sat on a tall stool. Sometimes I just couldn't do ANYTHING -- and it was the same with him. We just took care of the important stuff, and the rest could wait.

As far as the physical -- we had to experiment. You have to find what is the most comfortable for you and that's by trial & error. As long as you're both patient with the other, you'd be surprised what you can do. LOL And maybe it WASN'T as frequent as it used to be, but it was enjoyable.

I wish I had the answers to everything, but I don't. But as long as you love each other, and you're patient -- you'll be fine. God bless & take care. Hugs, Lee

I thought it might help you to weigh in as a caregiver of a bedridden husband who has such pain issues he can barely stand to be touched, and often can't stand to have sheets covering him. I have no insight for the physicality of intimacy, but I thought if I expressed some of my frustrations it might help you with your feelings of being a burden or losing touch with the relationship that you enjoyed with your husband. It may not be quite the same as I do believe that men and women view their roles differently, so please take whatever you can use from my post.
My husband has essentially been bedridden since January of 2009, his illness also rendered him blind, and he also has some dementia issues, so there are several cerebral things we can no longer share either. I miss his former ability to be able to make me laugh, to learn new things together, and to have him explain and teach me simple things I never learned (like righty-tighty, lefty-losey). What is hardest on me is that I sometimes feel that I have allowed him to become merely a patient, rather than a husband, friend and partner. So, I would advise you to take inventory of what you still have to offer for your family (it looks to me like your personality is still intact, and you still have the essense of you, right?!?) focus on those, and re-build from there. I sometimes feel like the only time my husband talks to me is to either tell me that he is in pain or needs something (water, food, radio, cleaning up, he pretty much needs total care). Unfortunately his pain is the type that we seem to have exhausted all of the alternatives for, so I'm often unable to help him which tears my heart right out.
So, please try to take your focus away from what you can't do, and embrace, celebrate and build on what you can do. Take inventory on your interactions with your husband and if you can, make sure that all of your interactions aren't caretaking requests. Kudos to you, by the way encourgaging his bike days, I'm sorry that you are in so much pain you can't ride in a side car or something along those lines.
I hope you are talking together about the career decisions, as much as he feels the call to the music ministry, it may be more of a stress on him to not bringing in more money, and there are probably some creative solutions out there. Perhaps you can create some kind of homebound ministry, perhaps having elderly or latch-key kids call and check in with you to let you know they are okay, and to have a plan for when they don't call.....
Hope this is helpful, I hope I didn't offend you in anyway. And you are one of the lucky ones to have a husband you can trust to stand by you!
Best of luck, this isn't an easy road for any of us, for sure!
Sandy

Cricket
I am an rn also and fell getting a pca pump. I am just over 2 years now and fine everyday getting a little more difficult. I can totally relate to your situation my husband took an early retirement just to go get another job to bring money in. He constantly says things about having to do it without coming out and blaming me.
As far as the sex I can't help but to tell you I'm having the same issues and was told we have to experiment. My husband doesn't do anything romantic and wants me to still do all the advancement. Which makes it even more frustrating because I know that if left up to me it maybe once a week or less. Feel free to email
Anita
P.s. I still hold that god as a plan for all of us

Cricket:

Does your husband know how you feel? Has he read your post? Do not be afraid to let him do so. Communication is key (which I am sure you know because you have a successful marriage)! Just knowing how you truly feel may relieve some of the stress you believe he is experiencing. I have RSD also and took care of my grandparents with dementia for 5 years and never resented them a day in my life (even though I needed taking care of too). Ask him how he feels about it.

I find it hard to believe that he would be better off without you. I know how easy it is to think that way for I have thought that many, many times. Remember that you are still the woman he married. You are not your disease. Do not let your disease run your life. Take charge of your disease. It will take time but it is possible.

You also stated that we think you are a mental case. Please do not think that. I have also thought that way. You will soon discover that you are not alone and that other people have/are experiencing what you are.

I hope this has helped. I know that when you are in the state of mind that you are in right now it is hard to believe that things will get better. They will. Hold on to that thought.

Sandy also has great insight. Grasp the positive things in your life and concentrate on them.

I sincerely hope everything goes well for you!

Jennetta

Hullo - I'm so very sorry you're hurting so much. I'm overwhelmed reading your post --- I can only imagine LIVING it!

Ok, for myself, when I get overwhelmed by our situation (hubby has Traumatic Brain Injury) I envision myself BENEATH the throne of Grace. I used to picture myself flat on my face before the throne of the Most Holy God - now, I crawl UNDER it and hide out (I think He knows I'm there ). I advise you HOUND God for peace, grace, wisdom and discernment.

On the tangible side, you mentioned....

my youngest is 20 and suffers from chronic daily migraines and requires frequent trips out of town for dr. apts

We have friends of a teenage boy that had chronic daily or every-other-day completely disabilitating migraines for many years. For them, it took a radical change of diet for him to heal. I believe there are MANY quacks for doctors out there - they found a good one in Grand Rapids Michigan that tested him for allergies and took him off just about everything edible. Really - he was FURIOUS for the first 6 - 9 months with the diet changes. But, it began to work. He was on a severely restricted diet for about 2 1/2 years or so (no gluten, no dyes, no dairy, etc). Then they slowly began adding foods back in. Fast forward a couple more years and their son can eat pretty much everything in moderation. His dr said it allowed his immune system, etc to heal and his body to build a tolerance to the foods that previously made him so sick.

Just a thought I wanted to throw out there!

Cricket I have a lot of empathy for what you are going through. I did go through a very similiar thing when I got e-coli and almost died from it and then I was diagnosed with Fibromyalgia a few months later. Our life totally changed. We owned a floor covering store in Az. and I was a big part of making the business successful. I don't mean to brag. We were both just very hard workers. It got to the point I couldn't work anymore. I was in so much pain. He took over the business and it broke my heart that he had to do it on his own. He's a light sleeper and along with Fibro I had RLS and my legs would kick in the night and I was restless, tossing and turning so finally we decided to have seperate bedrooms. That broke my heart also. It was a huge change in our lives. We are retired now and I'm so glad. I don't have to feel so guilty about my hubby doing it all. The guilt will tear you up inside. I finally gave it to God and I know it was with His guidance that has helped us pull through. Communication is key for all your feelings and your husbands feelings. You may be surprised how he feels about it. Of course, he is grieving for your old way of life. And if it will never change, it's time for acceptance and remembering the vows you took when you got married. I know---easier said than done. But, rolling with it with God's help is better than fighting against it and never winning. Your marraige sounds strong and I am sure God will help you get through this. Best wishes to both of you and to your boys. God Blessings, Julia (Blossom25)

As a primary caregiver for a relative with FTD (Frontotemporal Lobe Dementia), I know it is important for both of you to have periods of respite, where you each have time to not be focused on health or its related issues. If there is a Helping Hearts organization in your area, one idea may be to enlist input and also be able to speak freely.

I've heard repeatedly is that it's essential that family members who are closest in relation not be the primary caregiver. It can either strenghten or create a rift in relations.

I do feel for you.

Life doesn't make it easy. Maybe that's why it's called life. Just don't let it wear you down or break your spirit.