My wife's been in a nursing home since 2009. She has dementia but knows who I am. She talks crazy and thinks there's nothing wrong with her. She thinks she can get up, drive and go to work but can't walk, can't eat solid food and wears a diaper. I'm all she's got. The kids live 1000 miles away. I see her once a week but only for an hour as I still work part time and work around the house. I live with my mother, I'm 66 years old and feel I should do more. I'm still dealing with this and wondering how our lives turned out this way. We lost our home and everything because of her stroke and dementia. She was more worried about taking care of herself than our home. A lot happened back than. Should I do more? Should I talk to someone about dealing with everything I've been through? Has anyone ever had the same problems? She and I want to be back in Texas around the kids, but don't know how to get her there. Plus we don't have the money. She's in nursing home on Medicaid, I'm on social security and working part time which won't be much longer.
There are so many aspects to this situation that it's difficult to advise. If you're able to reassign some of the household chores to mom or a hired handyman, you could spend more time with your wife. That might be a good place to start.
Good luck to you.
Don't feel guilty, since you didn't cause all this. You had a normal life until a stroke damaged it. Not just your wife, but you and all your plans. Having so much stress is no picnic.
I sense from your stream of consciousness post that you are possibly in a fragile mental state and who can blame you. You have social and financial stresses. Yes, I think talking to someone (like a therapist) could be helpful for you. You need to clarify boundaries so that you don't completely burn out. No one is going to take on the responsibility of telling you what, when or how to do anything, so this is why you need to find and defend your boundaries. A good therapist can guide you through this. Or, talk to a faith leader, like a Pastor or priest. Many churches offer counseling services.
Regarding visiting your wife: maybe what you are feeling is actually grief, and not guilt. You shouldn't feel guilty since you're doing nothing wrong. I used to feel guilt about visiting my very sweet MIL (in LTC 3 miles from my house) for only 1 hr a week, but then again she never remembered our visits and the director said she was fine in between times. It's not possible to be anyone's Entertainment Committee. People with cognitive impairment are rarely, if ever, happy due to the organic impact of the disease. I got good at shrugging and saying, "oh well it is what it is" and moving on. I can't control everything and must accept with peace the things I can't control.
Even if you visited her twice a week, is this enough to make you feel less distressed over her situation? I don't think so. Maybe spend that extra hour not visiting her but instead checking around the facility, talking to staff and gauging whether she's getting proper care of not.
Is your wife on any medication? Often people with cognitive impairment require medication to help their emotional state. Maybe have this conversation with the facility to see if this would be helpful to her, which would be helpful for you to know she's not so agitated.
Have you talked to your kids about moving closer to them? Would such a move mean your Mother would go, too? Your wife can certainly be transferred to another state and qualify for Medicaid there, but it's a big and permanent effort (that will cost money) and you'll need their help -- if they're willing and able.
I wish you clarity, wisdom and peace in your heart as you work on boundaries and look for relief.
I wouldn’t guilt myself or take on guilt trips from anywhere including here over you visiting once a week. That’s enough so that the staff there realize it is to their advantage to prioritize mom vs someone with no visitors,
Moving her in her condition would be prohibitively costly. Unless kids have the money, she likely will stay where she is.