Caregiver unmoored from life; any suggestions?
My spouse had a serious stroke in 2011. After a long stay in skilled nursing he was able to come home and I've been caring for him for about 6 years. His cognitive facilities survived but he is physically disabled and a fall risk and he's had a couple of serious hospital scares for a persistent cardiac problem. He is on a PACE program (heartily recommended; our provider is excellent), but the toll on me has been significant. As a result of not being able to put in sufficient work hours, I lost my job as a business publications editor, and with it, my professional identity. I could no longer do things for my contact base. Anyway, that's not all of it. While my spouse's adult day health program gets him 4 days a week, which sounds like it would leave me a lot of free time to network, it's not the RIGHT segment of free time. I have to be home when the chair van arrives in the morning and home when the chair van comes to drop him off at night. I will NOT have him come home to an empty house! But I can't do Business Before Hours and Business After Hours meetings to network for freelance ops. He can't be left alone safely for long stretches because of the fall risk. Not to mention the doctors' and PT appointments that take up a lot of time. I am quite depressed but do not want to burden him with this (though he knows anyway). I not only took wedding vows but also signed the consent form in the hospital for the surgery that saved his life, so I am 100 percent responsible for what happens to him. A former work colleague recently asked me what I want to do next, and I was embarrassed that I utterly could not come up with any response. I just don't know! It was... what's the point? Too many other people can do what I did. I do volunteer work that is much needed, but as they said in Chorus Line, 'That ain't it, kid.' Has anyone else gone through this? How do you try to save your own life without upsetting a beloved care receiver?
It comes to the point that we need to make a decision. Do we lose our personal identities and become “just” a caregiver? Well, yes. Your husband gets out. Mine does not. Just the physical strains on me of getting him into a wheelchair and into the community van would exhaust me and I would have no strength for socializing. Plus, he would be miserable. He is and always was a homebody.
That is why this website exists. Burnout is probably the most popular of all the boards on it. Most of us here rant about how unfair it is to have to give up our lives to change adult diapers and urine soaked sheets. It’s NOT fair. But it’s reality. Maybe you can’t, as you said, “save” your life and go on as before because that, quite frankly, usually isn’t possible. It’s readjusting, doing what you can when you can and trying to find some balance along the way.
You obviously are a talented lady. Could you redirect your talents to another occupation that might be better suited to your availability? Maybe then you could arrange your hours to coincide with hubby being at the health center. If it would be feasible for you, what about a volunteer job with a charity where you could utilize your talents and set your own hours?
At that time there were some good books on career management, focusing on underlying skills and adaptability, and other related issues. So I started out factoring out the skills used in contract negotiation, added those to other legal background skills in transactional law, and found many common factors I hadn't realized before.
Then those factors could be used to move laterally or segue in positions that require similar skills, some of which can be done at home.
And, the same "factoring" exercise for the Medicare work you're doing now... volunteering, providing what probably is close to legal advice, and what I see are overlapping tasks of analysis and decision making. Working with a different type of "population" is a factor that could compliment working with business pros.
And given your experience, working at home (w/o needing employer sponsored medical insurance I assume) could give you some leverage in an employer's consideration of cost containments.
So, what skills did you use as a business publications editor? What other literary or businesses need those skills? And which of them could you do from home? What skills can you identify that are using in the Medicare Patrol Program? Working with a diverse population would be one.
I'd really be interested in what you decide could work. I want to return to work as well, after a good rest, but the thought of struggling through winter storms on workdays deters me. "Been there, did that, don't want to do it again."