Grandma isn't getting better and I feel awful
For background, my parents were horrible to me so I cut them off. Then when I got married, they interrogated my grandmother to try to get information. When she refused, they cut her off so I took over all aspects of her care. Its been almost 5 years now. I'm her health care proxy and power of attorney, I managed all her medications and appointment and bills and such.
She'll be 80 this fall and her health just keeps getting worse and I feel awful. She's been in the rehab side of the nursing home for about 3 months now. She was sent over after falling again and the ambulance had to come get her and they said she needed physical therapy. But she was evaluated after a more recent hospital stay and it was determined that she needs 24 hour care. She has heart failure, diabetes, kidney disease, she had endometrial cancer so she had a full hysterectomy, high cholesterol, high blood pressure and current worst cirrhosis. She's on 14 medications for everything she's got going on.
She was first diagnosed with NAFLD (non alcoholic fatty liver disease), that progressed to NASH (non alcoholic steatohepatitis), and now it has progressed to moderate to severe cirrhosis. With the cirrhosis, her ammonia levels can go sky high and cause hepatic encephalopathy even with all the medications she's on to try to help it. When this happens, she doesn't know who I am or what year it is. She thinks she needs to go to work when she's been retired for like 30 years. When it gets super extra high, she becomes almost unresponsive, like she looks right through you and its terrifying.
When she first went to the rehab, she was ok. Her levels were doing ok, she was only slightly confused but she was able to bathe herself, take the medication they'd hand to her and participate in physical therapy. But after this last bout of hepatic encephalopathy, her confusion isn't getting better. She doesn't recognize me most days, she can't talk on the phone and she can't care for herself. She can't give herself the insulin shots anymore. Her doctors think this may be her new baseline. Her ammonia levels have been normal for almost a week now and she's still just as confused as she was when it was high.
I'm working with the social worker to get the paperwork started to move her into long term care and I feel like the worst grand daughter in the world. I feel like I'm failing her. I recognize that I'm not able to give her the 24 hour care she needs. I have a toddler that starts school in the fall and I start college in the fall. I have a husband and pets and household to take care of. I recognize that I don't have the ability or skills to care for her the way that she needs but I still feel awful about it. I know at the nursing home she's being watched and I don't have to worry about finding her on the floor again or getting a 2am call with her panicking because her blood sugar is in the 500s again. And they have activities and visiting therapy dogs and a dining room to eat with friends. They have a bus to go on excursions. I know she's safer there than at home. I know it's not safe for her to live at home anymore.
But I feel so guilty that I can't give her the care that she needs. When she has those brief lucid moments, she knows where she is and she doesn't want to be there, she'll cry that she wants to go home. But she can't go home.
And then last week my estranged father called the nursing home trying to get information about her and he was told his name wasn't on the list so they couldn't tell him anything and that he needed to contact ME to know anything. He still hasn't contacted me.
I feel like I'm in so far over my head with paperwork and trying to clean out her apartment and her garage and trying to find the papers to sell her car since its her only real asset and doing paperwork for the bank to get years of financial records for the nursing home paperwork.
I feel awful and guilty and anxious and sad but relieved that she's safe and in good hands.