Sunday, October 16, 2011

I'm mis-er-a-ble

I'm back in Fairbanks at my sister's house. I came back on October 7 to help care for my sister, along with my youngest niece (46) and her husband (a living angel). We're my sister's caregivers, along with CNAs that come a few hours a week, and an R.N. that comes once a week. Now we also have an ANP making a weekly house call (Advanced Nurse Practitioner).

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.


Anonymous said...

Diana, your post made me feel both sad and angry. Our medical system is so screwed up. To make her ride in an ambulance when she is in the process of dying just to get pain medicine. How broke is our system???
How does that make sense at any level? That is so sad about your oldest niece. I can't imagine the additional stress that is putting on everyone. What a difficult situation. When you talked about your sister being angry with you, I'm sure she is so frustrated and you are the closest one to her that she can vent to. Plus none of her body is functioning anymore... every part of her is shutting down. I don't understand why they force people to go thru all this pain and misery when there is no hope or possible recovery. I know we can't begin to appreciate how difficult your situation is. I just want you to know I am praying for you and your sister. When I think how quickly things changed its scary. One day your sister was healthy and well and within a short time she lost her health completely.... About 20 years ago I was a primary caregiver for a friend that died of aids. I shared the responsibilty with 5 other people. We took turns spending the night and caring for him. His immediate family had totally rejected him. His father was a minister and could not accept that his son was gay. I remember it was so draining and hard and how glad I was that we were all sharing the burden and able to leave and take breaks. Diana I don't know why you are having to go thru all of this. Just know our thoughts and prayers are with you and your family and that God is there. I always think of that saying "This too shall pass". Your sister is so blessed to have you there with her during her transition. I also can't imagine how much it means to your youngest niece and her husband. I have a feeling it will happen very soon. I will be praying for all of you.

Megan S said...

I have been reading you for years and it has always been so obvious what a bright spot your sister is in your life. I can't even imagine the agony you must be going through. I am truly sorry.

Lyn said...

I am so sorry Diana, I feel your pain in your words. I wish I could say or do something to fix it. Just know you aren't alone and people do read and feel for you and your sister and many prayers are being made on your behalf.

Sarah G said...

I am so sorry, Diana, that you, your sister and your family are having to struggle so hard through this. My thoughts are with you all, I wish you all strength and peace.

Diandra said...

I guess the pain is taking its toll on everyone, but still... no one needs drama under these circumstances. Your family will be in my prayers.

kristi said...

I am so sorry you are having to go through this tough time. Hugs.

Heather said...

I'm just so sorry that you're having to go through this... sorry she's having to go through it.... sorry for the demons that are haunting your niece. How are YOU doing physically? Keep your strength! *hugs* and definitely prayers!

Grace said...

I am so sad for you and your family. I wish I could see you and give you a hug. I am praying for you.

Carrieheff said...

I'm so sorry about all of this. I guess you and your sister were right when you were talking about how miserable it would be to have a stroke. I've never thought about it before, but it sounds just awful. I hope your sister can find some peace in all of this and join her husband as peacefully as possible. {{{{{HUGS}}}}}}}}}

Dawn said...

I'm so sorry. This sounds like unimaginable pain.
Tell your sister how much you love her and that's all you can do.
I wish there was more that any of us could do...but you have friends here who will listen, and support through these awful weeks and beyond.
Take care of you

Ron said...

I am so sorry you are having to go thru all of this. I hope you all find peace real soon. We hate to lose our loved ones, but we hate to see them suffer too. Be sure and take care of yourself Diana.

Jane Cartelli said...

Diana - They say 'that which does not kill us makes us stronger.' It sounds like you will have a strength of 10 by the end of this experience. I am praying for you all and wishing for the best.


bbubblyb said...

I'm so sorry Diana, I feel so sad for you. I can hear your pain in your words. My thoughts and prayers are with you and your family. *big hugs*

Deniz said...

There are no words I can use to make this dreadful situation any better. So I'll just send hugs and support from afar.