May 31, 2015 - 11:59 AM
You are NOT wrong for wanting your life back! My goodness, look at all you have done for your mom! I went thru a similar scenario as you about 25 years ago with all the pangs of love and guilt that you are expressing. Mom was developing Alzheimers and had been living alone. My brothers and I all lived at least an hour away. We visited her whenever we could and I would take her to stay with us as often as she would allow but she always wanted to go to her home (she had agoraphobia). Then she fell and my nightmare began because the medicare/medicaid laws had just changed and were more rigorous. Whereas only a year before, simply being incontinent were good enough grounds to get you into a nursing home, suddenly, when she most needed to be in one due to a broken pelvis and worsening dementia, she no longer qualified! And knowing this, her doctor would not even admit her into the hospital (for a broken pelvis?!!), because she knew Mom would have to stay in the hospital until a room in a nursing home became available. It's a quirky rule, but once they're into the "system", it is up to the system to make sure her home was safe to discharge her to, and of course, having dementia and ambulatory issues and living alone, it wasn't.
And this is where your story comes in - Your mom is already in the system. And with your mother's falls and weakness, she is in the best place possible for her. Simply because she has run out of money does not mean the rehab facility can just discharge her. I don't mean to sound harsh here, as if I didn't want my Mom living with me. Her agoraphobia, coupled with Alzheimers made it virtually impossible, so I was leaving my small children with my husband an hour away so I could stay at my Mom's home until my brother could watch her on the weekends. And it seems your situation is just as dire as mine was back then.
My plight got local attention from the medical community. I was invited to speak at a nurses seminar about how dementia patients fall thru thru cracks with the new "one-size-fits-all" Medicare rules (this was back in 1994). There wasn't a dry eye in the room when I finished - but it was there that I leaned about a new facility that had just opened specifically for Alzheimer patients (there were few to none in my state at that time). So that's where I took my mother to live.
However! Like your mom, she ran out of funds and the home sent me a letter that they were going to discharge her onto my doorstep and gave me a bill for the 15 grand it had cost to keep her since the funds ran out! Having learned about the hospital discharg- to-home liability, I doubted a nursing home could legally do that, either! So I called an ombudsman and they got that matter settled with a stern letter to the home and they helped me find the funds (from her social security, etc.) so she could stay where she was well cared-for (albeit the business office was shame-faced!) where she had a busy, sociable and well-rounded life - all which I (and you, too) could not give to her.
Your mom is where she needs to be (and it isn't up to your finances to fund her personal care home - just something I want you to know). If you need help figuring out what to do next, please call your local agency on aging and/or an ombudsman. I don't know what I would have done without their help. You have been under terrible stress. It is natural to feel the guilt and for your mom to want to come back to be with you and your husband. But is that what is really right - for her? How happy will she be when everyone around her is stressed, depressed and barely functioning? You can not take care of someone else until you take care of you. I have prepared my kids to never, ever feel guilty when/if I need to be in a home. They know I adored my mother and that I did what was best for her. You need to keep in mind that what is best for you is ultimately what is best for her.
My mom lived 2 years in that nursing home and she died peacefully there with my brother and me at her side. The staff was loving and attentive and a few hours later, after the funeral parlor took her precious body away and I walked to my car, I looked back at the nursing home - her home - And right over it was a beautiful double rainbow.