Guilt, even when you know there's no other choice. Is this normal?
Hello, all. I am going through a rough time lately with all my husband's health issues and I can't really tell you what moment "clicked" where I knew I couldn't take care of him by myself or at home anymore. He has been in the ICU two months. The litany of health issues: COPD, Polycystic kidney disease (end stage renal disease) dialysis, anemia, leg amputation from bone infection, and NED from lung cancer has come to a tipping point. I think I knew the likelihood of him being bedbound was highly likely as his mobility has gotten less and less over the last two years.
The mobility became a problem when he has osteonecrosis in his hip requiring a replacement. Even with PT both in and out of the home he has never been able to lift his leg below the knee. He had many x-rays and other tests which show nothing is wrong with the placement and no infection to cause this. He became wheelchair bound. He could still use his other leg and had arm strength, so I was able to help him transfer to his chair, the car, the bed. He was using a bedside toilet in another room and I would empty it. I admit I am scared because over the last six months he has been in a bad decline.
He went into the ICU because of plueral effusion. It was insane the amount of fluid they were draining off his lungs. The first time, he was in the ER and they sent him home after two days! Well, two days later we had to call the ambulance because he couldn't breathe. They had to put a drain into his lungs and kept draining fluid from his lungs. It was non-malignant. Anyway, they had to start him on dialysis, thus his move to the ICU. They discovered the bone in his leg was infected (he had wounds on there that had not healed over a year, even seeing a wound care doctor and home health changing it and skin grafts).
My point is, I know I cannot care for him when he will require so much help just for daily living. I am 37 and he is 61 and I am crying feeling so guilty knowing I will not be able to care for him. It was hard when he had to have a hip replacement because he was bedbound and we had to use a hoyer lift (his late daughter and another male family member were helping me). We have been married 14 years and I feel like I have failed him, but he is a fairly big guy, at 170 lbs (he did lose quite a bit from both cancer and the hip replacement). I fear he won't recover the majority of his strength and at the moment is not coherent and has ICU dementia (except he isn't seeing things but the forgetfulness is crazy).
I still care about him and have love for him, but I feel so guilty like a horrible person. I think he will have to stay in the TX area and I will have to move. I have mental health problems and need to be near family to stay stable and I have high-functioning autism. I know that makes me a horrible person, but I am ready for a change to be in a smaller home and a smaller town. We moved up here so I could have a better job pool and salary. I am planning on moving back to my hometown in NM because honestly between my mental health and the cost of living, I need to. Can Mark join in the future? I hope so, I really do, but I am unsure.
I feel so guilty like I failed him. He was on disability when we married from anxiety. I feel guilty for wanting a simple life of being able to work, enjoying dogs, being near my family, taking a little daily walk, reading, maybe get back to writing. I want an occasional hang out time with my friends. I would like to get involved in a church again as Mark's faith has been kind of so-so and I am a believer.
I feel anger I shouldn't because I know his health problems are not his fault, but kind of like he has sort of left me even when he hasn't. Yes, I am trying to set up seeing a therapist, but I am mixed up and confused. My question is, will it ever be sort of normal? Why do I feel so guilty like I've been a bad person?
You married him knowing that he had issues, there was a big red flag raving in your face and you chose to ignore it.
Only you can do what is necessary to become whole again. Time for him to be placed you are in way over your head.
Sending support your way!
Words we continually repeat to ourselves have great power and you can't continue to do this.
The word "guilt" infers that you CAUSED something and can FIX it.
You didn't cause it and you can't fix it.
The correct word is GRIEF and this is well worth grieving so allow yourself to do that and accept/expect that he will grieve also. He has a right to that.
Don't let me hear you use guilt again unless you purposely caused pain and grief to someone because you are evil. That's nonsense. Were you evil no one here would have anything whatsoever to do with you.
This was inevitable from the beginning.
Why do you expect it to be without pain for you?
Why do you expect it to be without pain for him?
Is pain not a NORMAL PART OF LIFE in MANY circumstances?
Faith is lovely if it brings you COMFORT and support.
If however it brings you accusations and confusion then to me it is total trash in all honesty.
Carry forth. Know you are a human being and you may attend faith community but you AREN'T GOD and you can't fix this.
You are a human with limitations. Embrace them. You aren't a Saint and it is a horrific job description. They basically get shot through with arrows and then we pray to them for eternity to fix everything for us.
You have written us before about worrying about other people's judgement of you.
Why does that matter when you judge yourself so cruelly?
If you write us another thing about how you are a bad person letting hubby down and everyone is judging you I am just going to scroll on by.
I have read many things from you.
I have told you this before. You're smarter than this. You are SO MUCH SMARTER THAN THIS.
Guess what, everything isn't going to get fixed.
Then we die.
Really you cannot afford to keep moving into this space where you become maudlin and wallow in the tragedy that all of this is, worrying about whether or not you are a good person. If you believe in God then is HE NOT THE DECIDER on that one?
You are wasting energy.
You cannot afford to lose it.
Yes it does sound like if he ever makes it out of the ICU that he will need more care than you can provide at home because of his physical condition and his mental condition.
From your post it sounds like he moved for you because you wanted more job opportunities. Most of the things you post about wanting to do (apart from being near family and cost of living issues) you can do anywhere.
I think you want out of the marriage and this is your way of doing that by moving back home. It's perfectly OK if you do but maybe be honest with yourself about your reason for wanting to go back home. I hope you can find peace and happiness in whatever choice you make.
Did I make some stupid decisions? Yes, I did many ways, and I don't deny my own fault in any of it.
Erase the guilt. It doesn’t belong to you or any other caregiver that is in way over their heads. This isn’t your burden to carry. Drop it and move on.
Wishing you well and hope that you find the discernment to do what is right for each of you.
Stop holding on by a thread because it will eventually break. Start making useful plans for yourself.
It is good to be hopeful. But also practical to be realistic.
You are married but you have very different needs going forward. Therefore I think it wise & fair to make plans for yourself.
You wish to move closer to your family, to increase your support network. Self-care IS important.
At this stage, it appears your husband will need round the clock care if he survives this.
I am sorry for your situation.
It WILL change.