TWM, I'm the daughter of a Mom who has a C-3,4,5 incomplete injury which left her with no functional from the shoulders down. My Dad has been her caregiver for the past 11 years since her injury with the assistance of in home help from ladies who come in about 10 hours a day. They are now both 82 years old. I didn't think he would stick with it this long, and one thing my husband and I have talked about is that Mom can't walk away from her situation, but Dad could at anytime.
Mom is not the person she was before her injury. She feels guilty and at fault, she's angry at herself and thinks she's being punished. She feels that she's caused their financial ruin and has taken away my Dad's enjoyment of their retirement years. My Dad feels that he's a victim, unappreciated, overwhelmed, tired. He doesn't have a caregiver personality, isn't good at organization or multi-tasking, needs to be around people. They are both depressed and irritable. They have isolated themselves from friends and family. I honestly expected my Dad to walk away after the first year, and I'm impressed that he hasn't. They are both unhappy, when I visit (I live 3,000 miles away) I don't see the loving touches, talk, joking that used to be there between them. Dad talks to her like she's a child, with impatience, as if she's not there. Mom constantly asks him to do stuff while he's doing stuff she just asked him to do, with never a moment's rest. She's obsessed with watching clocks and the temperature inside and outside - not how it feels, but what the number is.
They refuse to go to counseling together or on their own. They refuse to go to support groups. They have only briefly met or talked to another quad in 11 years, just long enough to buy used equipment. Mom will not go anywhere except the doctor's office or hospital. No where. She won't even take a wheel around the mobile home park in CA where they live. She only goes outside to sit in the carport in the shade. My parents travelled worldwide, they crossed the country several times by car and RV, they took weekend trips to places in CA. My Mom was positive, an encourager of everyone. I have cousins and friends from school when I was a kid who tell me that my Mom made them feel beautiful, accomplished, capable, and encouraged them to work hard and strive to do anything they wanted. She motivated so many people who have told me they would not have gone as far as they did in their lives had it not been for her. Now she rarely communicates with anyone.
TWM, SCI is a huge event in both your lives. One thing to consider is that the individual most likely had some kind of brain trauma also due to a blow on their head or diminished oxygen to their brain because of interrupted blood supply during and after the injury. That alone can cause a change in behavior and thinking skills. The emotions and change in thought, the depression, the choice to see the injury as a negative situation that can't be overcome is something many get stuck at in their recovery. YOU can't make the injured person DO anything. You can only encourage, attempt to motivate and provide opportunities. For year after year. BUT....you asked,
"At what point do you have to think about yourself and your mental health?" You know you are the only one who can answer that question, but I'm going to throw some stuff out, and it will be scary to people. It scares me. I've been the facilitator for an Alzheimer's Association Caregiver Support Group since 2008, I started going in 2005 because my mother in law had Alz and we'd been helping care for her since around the time of my Mom's injury. Being with this group has helped me in coping with the emotional, financial and logistical decisions I've had to make while caring for both my families. I had two mothers I care deeply about living with devastating long term medical situations and I couldn't do hands on intensive care for both of them. I talk with and listen to many, many people like you who don't know how much they can take. They have lost the person they loved, the spouse they married, the best friend they shared life with. Their horrendous injury has altered the personality of their loved one so completely or taken their memory so completely that it's caused such a huge change in their relationship they are no longer husband and wife, they are now patient and caregiver.
Some people are able to accept this situation, some patients are more agreeable, amiable, require less care, are more motivated, enjoy life, are more inclined to be positive, and advance regardless of their situation. Some caregivers thrive in the task, are patient, with boundless energy, thrive in the constant duty, enjoy the challenge, willingly accept an obligation (don't take that as a criticism, it just is a part of their decision). Some people can't do this over time, for years and years and years. It slowly kills you to care for another person so intently. You become their body or their memory. You give up your own body, thoughts, needs, wants responsibilities, desires. And you worry, you don't voice your fears, you don't say you're angry, you don't say you're overwhelmed and ready to quit. You don't want to burden or bother the patient, you don't want to put more on them. Then it gets to the point where if they say just one more time "Could you pull up my blanket?" or "Where am I at? Is this near Frank's Grocery? Why am I here? When can I go home? Where are you from? Do you go to see your parents? Is your Mom not able to travel?", you want to hit them upside the head with a frying pan. Or hit yourself.
Go to a support group of caregivers if you can find one in your area. If it's a SCI group or not. A caregiver is a caregiver, no matter what the patient is dealing with. If you can find a group your husband will go to, get him there. Don't you both go to the same one, so you each can talk freely and openly about the things you need to. Get in contact with other caregivers by phone, where you can call and talk about what stupid thing he just did or said, before you blow off at him. Find a counselor or psych you can talk with and who can prescribe meds if you don't already have them for depression. I've been on the deep end of depression twice, the place where you later you can't remember months of your life. It's not somewhere you want to be, and if you end up there it's not somewhere you want to stay. You have to first rescue yourself before you can rescue or help others. If you continue to stay in a place where you are totally unhappy, where you feel unappreciated, where you feel no hope or future, or you no longer care about yourself, you are in great danger of in great danger of harming yourself or the person you are caring for. It's critical to get help from someone who can give you both perspective. You need help from someone who can help you both begin to talk to each other with honesty about your issues and what could be done to work things out, or define what steps you need to take if you decide you can't reconcile. You need to see if you can get help for respite care through any programs for critical mental stress which may help you tremendously.
It's not easy no matter which path you choose and you will be judged by people who don't have all the info, because only you and he know what is going on. As Jason and Dr. Dan said, leaving is a very last choice solution after you've done and considered every other possibility. You need to know that it's not just the paralysis that caused a change in your relationship. Most likely, if you both decide to end your marriage, you will find that would have happened eventually with any high stress event in your lives, that there was something going wrong before the accident and it just magnifies the issues. If you stay and work things out, you will find that this situation brought about an honesty and respect you wouldn't have imagined possible.
Lastly I want you to know that whatever you do, YOU decide it. No one can ever know all the details that factor into your decision. There are little things that go into the thinking that only you know. I tried over and over for years to save my parents, to give them options, stuff, ideas, methods, programs to help them and make their situation easier. Nothing, nada, zilch. Except their stubbornness made me feel defeated, hopeless, helpless, worried, fearful, irritated, angry, confused, upset, protective, exhausted, overwhelmed, consumed. Then one night when I was leaving Mom's after a long and honest conversation with her I just decided I was done with it all. Finished. I would be consumed no longer, would not allow their situation to take my life or happiness anymore. I would step away from their negative reactions and take care of me by not taking care of them since they won't allow me to. It's been so much better since then. No one else really gets it, but I don't care. They and others do the "you shoulds" but I say "yeah," to just quiet them and go on. I now just visit but do no work or problem solving. I listen but do no searching. I wait and do no pre-planning for the "what ifs" that may come. And it really, really is better.
I learned my best lessons from the support group people that surrounded me. One man taught us that when his wife really got on his nerves, really upset him, he would tell her he "needed to take out the trash." He'd get a bag and take something outside to spend a few moments gathering himself before he went back inside, a tad calmer. Cesar Milan, the Dog Whisperer taught great lessons to everyone constantly about how to create "Rules, boundaries and limitations." I learned that those could, should, apply to all the people in your life, especially when you are caring for a loved one and other family members are involved. We send you daily hugs and great appreciation for the kind caregiving you do each day for your husband.