I know I should speak to a counselor or therapist, but in simple terms--I don't have time. I'm a caregiver for my husband and still work full time. He is in a wheelchair, has primary progressive MS and is 99% unable to help me around the house and 100% unable to help outside the home as he can't drive. When he was diagnosed with MS, he had already had it for probably 15 years (no one knows) because he was MISdiagnosed for many years. He was finally diagnosed with this devil disease in 2011, was using a walker and in a short, turbulent 2 years, ended up unable to walk (in a wheelchair). Not much of a chance for me to get used to caregiving and certainly not enough time for him to adjust to the pain he is subjected to. Also has peripheral neuropathy. I am the only one who can 'do' anything: shop for everything and anything needed whether its g roceries, hardware, gifts, cards, tools, car repairs, home repairs....well, everything. Then, there are the meals to prep and cleanup, housecleaning, laundry, bills to pay, budgeting, making appointments, taking him to the appointments, keeping track of the paperwork...oh, the list goes on and on. I know I'm not alone, but it is overwhelming. I work full time so these all other things are done in the evenings or on the weekends. He has a habit of making me feel guilty because I'm not there with him. He calls when I'm out doing errands, etc. We don't have a marriage any more, so I'm sad about that. At the same time, I'm angry, mostly at the situation I'm immersed in, but a lot of times, I'm angry with him. He rarely listens when I try to include him in conversations (probably his condition and/or meds), so I have no one to talk to when it's the two of us alone at home. He yells and cusses if things don't go his way (due to the MS and loss of dexterity, he often drops things or has difficulty getting dressed). Rather than call me for help, he yells and cusses. Loud enough that a neighbor could hear the noise. I've tried to reason with him about self-control, but it doesn't help. So, I end up angry. It's like having a grown child. I need to get away by myself, but feel guilty that he can't do the same. He misses his freedom and the life he is living breaks my heart. So how can I go away to visit family and/or friends, when he can't do the same? Oh, we could go someplace together, but I want to get away from caregiving, NOT bring it with me.
I'm so sorry that the MS has robbed you of your marriage and your life and your free time. And I'm sorry for your husband that he has to deal with it all too. I would imagine that it would feel like you're talking care of a big child.
I can't imagine how you work full-time and take care of your husband too. Do you have outside help that comes in while you're at work? If not, is that an alternative? It would lighten your load considerably if you could come home from work and have the house halfway decent and some laundry down as well as your husband cared for and fed.
And you do need some respite badly. Assisted living facilities offer respite care (some of them). But from what you wrote your husband would hit the roof if he had to stay in respite care. But you know what? Too damn bad. Wouldn't he get out of this situation for a while if he could? Aren't you allowed to feel the same way?
If you're not comfortable with Assisted Living respite then I hope you look into hiring a caregiver to help you out. Most agencies require a deposit and a 2-hour minimum. You can pick any time you want, whatever suits your lifestyle and your husband's lifestyle. And maybe if you could get away even if it's just to a movie or lunch with a friend it will give you the strength to do everything else you need to do.
I hope you come back and let us know how you're doing.