I've posted on here a few times this past year and you've all been such help.
Grandma died this morning a little after 7am. I feel so guilty that I wasn't there at the end. I keep swinging from being kind of ok enough to call and notify the people that need to know to not being functional.
What do I do now?
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.
A few years ago I had a horrible reaction to compazine in the hospital and that made me scared of all medications. But I need to start taking lexapro.
I took a quarter of a 5mg pill and can't stop panicking.
Can anyone tell me about their first day or first time taking it? I'm scared out of my mind
I've been caring for my grandma (79) for the past few years. She's currently in the nursing home after another bout of very high ammonia. I feel so guilty that I can't give her the care that she needs. She needs 24 hour care and medication administered multiple times a day, she can't dress or bathe herself and she can only walk maybe 15 feet with her walker. She can't follow multi-step instructions to give herself her insulin shots. My son starts preschool in the fall and I start college in the end of august. I feel awful I have to put her in the nursing home. Logically I get that its the safest place for her, she's right near the hospital and her doctors, there's always someone keeping an eye on her. Most days she doesn't know who I am anymore.
This last time I found her on her floor. Its gone from happening a couple times a year to at least once a month. Her ammonia level was at 235 mcmol. The most recent was lower but she doesn't seem to be getting better and they're recommending she move to long term for 24 hour care. It's now a week after being hospitalized for it and her level of confusion hasn't changed. They upped her lactulose and she's on rifaximin too. It's always been a fight to get her to take the lactulose as much as she was supposed to.
The doctor was rushing me when I was trying to ask about it all. I know she has a TIPS in her liver (she's had multiple revision surgeries on it), and her original diagnosis was NAFLD and she kept getting fluid build up on her stomach and we had to keep getting it drained. But she hasn't had that in ages now. Then they said its NASH, now its just cirrhosis? And he said the confusion is hepatic encephalopathy.
On top of that, she's a type 2 diabetic and when she was hospitalized she had a blood sugar of 545, she has diastolic heart failure, high cholesterol, severe osteoarthritis, and had a complete hysterectomy 2 years ago for endometrial cancer.
I know we live in the age of the internet and I can google to my hearts content, but I'm really struggling to understand. I'm struggling to understand what I need to be on the lookout for, what my next steps for her should be, should I be pushing for more or different testing?
I'm just lost and don't have anyone I can ask. If anyone can give me some advice or encouragement I'd very much appreciate it.
I've had my instant pot duo for more than a year now. Tonight when I plugged it in, I ran my hand on the side of it without thinking and it felt like strong static?
My husband said it could be shocking me but I've been shocked before and it hurts like crazy, but this didn't really hurt.
When I unplugged it to test, the feeling was gone. The outlet didn't trip, so I think it's something wrong with the cord itself.
I ordered a new cord to be safe but I'm looking to see if anyone else has had a similar experience.