Today is day 26 of my sister refusing all food and drinking very little water (less than 8 ounces a day). I honestly don't know how she's staying alive. She was 160 pounds when this started and now she's very thin.
There was (and still is) some serious family drama going on involving my oldest niece (she's 49). She has the medical power of attorney for my sister as well as executor of her estate. She has pretty much lost her mind.
I wish I was kidding, but I'm not. She hasn't even seen my sister since October 1 (other than one 40-minute ambulance ride). She lives about ten miles from my sister's house, where my sister has been since October 3.
My crazy niece called 911 twice on October 7 claiming her mother was having another stroke. She wasn't even here and it was a lie. My poor sister was taken on a 40-minute ambulance ride to Fairbanks Memorial Hospital, where they said there was nothing wrong with her and sent her back home in the ambulance.
My crazy niece had followed the ambulance to the house and then rode in it back to the hospital with my sister, ranting about how they'd get her on a morphine drip and she'd die in a few days.
My niece was locked up in a padded cell, then shipped to Anchorage Psychiatric Institute for 48 hours, where she then walked out and flew home. They couldn't keep her against her will.
After she had many screaming tirades with hospital staff, with me and the rest of the family, she has hired an attorney to deal with the family and the hospital. The hospital has banned my niece from the hospital and they are refusing to speak with my niece or her attorney.
None of the family is allowed to speak to my oldest niece. As of last Thursday we have to go through her attorney. We never were allowed to speak during the numerous phone calls she made to us. She would yell, screaming lies about how we were force feeding my sister, forcing her to stay alive, as well as forcing water down her throat. She told all of us she was suing us and how much she hated us. Before any of us could ever respond to her accusations she would slam down the phone. She is crazy.
She's been spiraling down into very strange behavior since her father passed away two years ago. We all saw a change in her but we didn't realize the seriousness. It's not depression, but she started talking incessantly after my brother-in-law's death, saying odd and inappropriate things to anyone that would listen. She also became highly defensive and went on attack mode if you said anything she disagreed with.
Now she's become extremely mean and hateful. I'm still in a bit of shock over some of the things she said to me, very hurtful words. Even though I know she's mentally ill, it's hard to accept it's the illness talking and not my niece. It's not just me she's attacking, but everyone in the family. Her viciousness and anger strikes anyone in her path.
So this is just another layer of hell that's going on in addition to my sister's illness.
My sister. What can I say other than what she tells me every day. "I'm mis-er-a-ble". She says it very slowly and angrily, over and over, spoken as someone who has had a severe stroke. Slowly and deliberately. One syllable at a time. She still can nod yes or no, but now she seldom even tries to speak. The smiles and laughter are gone.
She absolutely will not eat. She refuses all food. She sips very little water a few times a day.
She still has some strength on her left side, but it's becoming weaker. The right-side paralysis is still complete. Today is day 26.
We've talked about death. She wants to die. It breaks my heart to watch her kill herself by starving herself to death. This is the hardest thing I've ever done.
Thursday she came down with strep throat, at least that was our guess. Since her doctor in town refused to prescribe any pain medicine for her unless he saw her in person (that would have required an ambulance ride), we called 911 to take her to ER. She was in agony and the Tylenol and Advil we had been giving her for back pain wasn't working on the strep.
I rode with her in the ambulance for the ride to town, about 40 minutes. They admitted her in the ER for a "sore throat". This actually turned out to be a good thing since we were able to get her primary care provider changed to an Advanced Nurse Practitioner who can prescribe pain medicine and will make house calls to my sister's house (23 miles from town).
The ANP, Janice, came to the hospital at 1pm (we'd been there since 9am), and saw my sister. She's an angel and deals with hospice care. She prescribed Oxycodone, a strong pain killer which immediately eased my sister's misery. Miraculously we were able to do this without a medical power of attorney (without the crazy niece's approval). Janice will make a house call on Tuesday to check on my sister. We also got an antibiotic for the strep. Since you can't die from strep, this won't make her live longer but only make her more comfortable.
My sister came back home the same day and has been on the Oxycodone for three days. I'm calling this the most "miserable" phase of my sister's slow dying process.
Up until the pain medicine, we had a lot of laughter with her. We talked to her a lot, she interacted with us. One day she kept pointing at the TV, or at least I thought it was the TV (her hospital bed is in the middle of the living room, facing her big picture windows and glass door - looking out on a river). I asked her if she wanted the TV turned on, she shook her head no, but kept pointing. Finally she grabbed my chin and face and turned it to the glass door. There, standing in the middle of the river was a cow moose and calf. We both had a good laugh over that one.
Now my sister sleeps most of the time and when she's awake she's groggy, and very unhappy. Last night she got mad at me. I don't know why. She was trying to talk and I could see the anger in her face. I asked if she was mad at me and she shook her head yes. I kept trying to figure out what was wrong, and when she tried to speak again, her anger was very obvious.
My sister has never said a mean word to me in my entire life. She's always been loving and kind. Even during the the past three weeks, her responses were always softly spoken, although we couldn't understand her. Lots of smiles and you could see the appreciation in her eyes. What happened last night was awful. I know it's the drug talking, but I hated it.
The honeymoon phase of her dying process is over. I've lost her to the pain and the pain medication. I really hate this more than you can imagine. This is the part I dreaded. I knew it was coming but that doesn't make it any easier. I'm not sure if I'm staying to the end. I'm not sure I can handle it.
There's a lot of discussion as to where my sister should spend her final days. She could go on for up to four weeks, or possibly only a week or two. No one knows.
We're working with the crazy niece's attorney (who I detest), trying to find a solution that everyone will agree to. The crazy niece wants to hire CNA's to attend to her mother's care 24/7 since in her demented mind we're not qualified to provide comfort care. Never mind we've been doing it for almost two weeks and every R.N. and CNA (there have been several) that has made a home visit says we're doing an excellent job.
The problem is that you can't find an available R.N. or CNA willing to come out here to my sister's house, a 40-minute drive from town, for 24/7 care. The alternative is an assisted living home in town, and I could write a book on how I feel about that situation. Remember, we're in Fairbanks, Alaska.
I'm not sure what will happen in the next few days. Dealing with the attorney is very unpleasant. She's a condescending bitch believing every word of the crazy niece, who has only spouted lies about this family. Our only concern has been the comfort and care of my sister during her last days. My crazy niece's goal, to put us all through her own special version of hell.
As my sister says, I'm mis-er-a-ble.