Sunday, October 23, 2011

Can it really get any worse?

First, a huge thank you for all of your kind words and support. I read every comment and they fill my heart with gratitude. Each comment is very much appreciated and greatly lifts my spirits.

Friday was a horrific day. We moved my sister to the assisted living home for hospice care. Even though I had explained to her several times that she was moving so her daughter (the insane one) would come visit her, at the last minute my sister decided she didn't want to go. It was beyond horrible. The crying and moaning tore my heart into pieces.

After she was moved by ambulance she became non-communicative.She didn't want anything to do with any of us. She fell asleep or pretended to fall asleep. My crazy niece came by for five minutes and then left.

Crazy niece didn't even visit yesterday. I was there all day and had a great visit with my sister for several hours. My other niece who is now seriously depressed only stayed a few hours. She was diagnosed as clinically depressed for the past 17 years and is on a multitude of drugs, bipolar,anti-anxiety, anti-psychotic and several anti-depressants. She's a sweet girl (well, 46 year old woman), but she's not much fun to hang out with. My brother came by a couple of times, bringing me his laptop and a giant TV for our sister's room. He's a laugh a minute so he hung out with us for a few hours.

My sister napped off and on, but was awake most of the time I was there, from 9am to 7:30pm with a break when I went out to lunch and Walmart (yuk!) for some nails to hang pictures. She told me which pictures to hang and where. Her wedding picture made her cry and cry. It was so sad I thought I was going to die. She started talking very sweetly to the picture, and touching her husband's face in the picture, and cried. I told her it was okay to cry. It was just me and crying wasn't a bad thing. I couldn't understand her words but I think she was saying how much she missed him and loved him. I told her I knew she missed her husband of 51 years, and I told her how lucky she was to have been treated like a princess for all those years. We both cried and I held her.

We had a lot of laughs yesterday too. I was trying to adjust her pillows and was having a heck of a time getting them in the position she wanted without pulling her hair. I told I was sorry I was Nurse Ratchet from One Flew Over the Cuckoo's Nest but I was never trained in pillow fluffing. She yelled out "Ouch!", then laughed and laughed. She still has her sense of humor.

It was a really great day with her. The people that work at the home are really nice and the owner that lives there is amazing and a great help in helping me accept this situation.

Unfortunately my crazy niece called me when I got back to the hotel. She wants to get a morphine patch put on her mother so she'll be basically unconscious. My sister has sublingual morphine drops for pain, which work fine when she needs them. She doesn't need a patch with constant morphine.

My niece got hysterical when I told her that her mother was drinking a lot of water. No food, but water. My niece insisted I was pouring it down her throat or holding the glass. I'm not, my sister holds the glass and drinks it.

The conversation went really bad when I lost my temper over the morphine patch and then Linda said she couldn't visit because she "has three young boys" to take care of. I've heard this excuse thousands of times in the last four weeks. The "young" boys are 16, 14 and 9 and she has a husband that's perfectly capable of caring for them. For the very first time in four weeks I completely lost it and called her a stupid, crazy bitch, and I was sick to death of hearing about her "three f--king boys". Yes, not my finest moment but honest to God, I've had it with this woman. She may be my niece, but when this is over if I never hear her whiny voice or see her ugly, angry face again, I will be happy.

I just want my sister's final days to be peaceful and comfortable. I want her to laugh and not be afraid and worried. Water is part of comfort care. My niece wants to withhold water, but fortunately it's in my sister's living trust to provide sustenance such as water and bread for comfort, just no feeding tubes. The morphine patch is ridiculous. She doesn't need it.

I've blocked my crazy niece's phone numbers from my cell phone (there's an app that does that). If she visits her mother today (highly unlikely), I'll leave until she's gone. My hotel is two blocks from the home, so not a problem to just leave for a while. I know if she does visit it'll only be for a few minutes. Without me there for her to attack, it'll be better for everyone. Luckily for me her reputation is well known. I talked to Adult Protection Services yesterday and they knew all about the crazy niece. They work with the local hospital and had already received phone calls about my niece.

Did I mention during the four days I was in Seattle she went to the hospital business office demanding to see someone in charge? No one was available so she laid her body down on the floor, blocking the entrance into the business office. She was physically carried out by security. Just one of her many crazy stunts these last four weeks, documented by the hospital and the police.

My husband is flying up today. When I broke down a couple night's ago after a crazy niece encounter and couldn't stop crying so I could even talk to him, he said he'd fly up. I can't wait to see him.

I'm sure today is going to be a better day. I'll avoid crazy niece, and I get to see my husband. And I still get to make my sister laugh.

Friday, October 21, 2011

Death becomes her

Today marks day 30 since my sister's stroke, and also day 30 of no food and very little water.

It's a strange thing, watching my sister die. Each day, a little more of her slips away. She's a little less aware, a little thinner, and laughing a little less.

Yesterday was a wretched, horrible day. She can no longer get out of bed because it's too painful. Her paralyzed side, with all it's intact and working nerve endings, tortures her with pain if we try to move her even half an inch. Her doctor, who makes house calls, said it's not worth it to move her and have her in so much pain. The morphine sublingual drops don't even help with that intense pain. She doesn't want to move and since the time is short, she remains in one position, on her back, where she is the most comfortable.

I spent several hours alone with her yesterday, as she sat in bed, staring out the picture window, looking at the river and the snow. I did everything I could to make her smile. She would only look at me with tears in her eyes. I kept asking her what was wrong, besides the fact she was dying, why was she so unhappy.

Once again, as she has several times in the past several days, she spelled "E.....L.....I!" I know what this means and it breaks my heart. I asked her, are you asking about Linda again? (heavy sigh on my part) A big nod yes from my sister. Linda, my sister's oldest daughter (49), who lives only ten miles down the road, has not come to see her mother since October 1.

There are a lot of things I could say about Linda, but I hesitate to say anything. I know she's mentally ill, but right now I can't excuse her behavior. Linda told me today that she can't bear to see her mother like this because it hurts her too much. A lot of responses went through my head, mostly that I wanted to tell her she's a spoiled, self-centered little bitch, but instead, I told her I understood and that it was okay.

After spending several hours with Linda today (she's finally talking to me again), she has agreed if we move my sister to a hospice for her last few days, she will visit her there. She just can't come to the house where she only had happy memories. It would ruin it for her.

Again, the thoughts in my head were quite different from what I said to her. I hate the idea of another ambulance ride for my sister. It will be her fourth in four weeks, but this one will be one-way to the hospice. I think dying at home would be better, but I also know my sister's dying wish is to see this daughter. We have almost everything lined up to move my sister tomorrow to the hospice.

My other niece (46) and her husband haven't left my sister's side.  The sad part of this is that this niece, sweet, mild mannered and kind, suffers from severe depression. The kind of clinical depression that  leads  to suicide. There have been many attempts over the years, several were almost successful.

My sister was not only her mother, but her best friend, her support and her confidante. This is a very difficult time for this niece, and I'm not sure she's going to pull through what is undoubtedly the most catastrophic event of her life.

Funny thing about my sister. She's always been a great beauty, she had movie star good looks in the fifties. People would often comment on her beauty. Even though she's 73, she's still gorgeous. She never thought she was pretty. Each day, as she gets weaker and thinner, she becomes even more beautiful. Her wrinkles are disappearing. Her eyes are bluer than I've ever seen them. When she blesses me with a smile, my heart melts.

I already miss her.

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.

Tuesday, October 4, 2011

Dear God, please let me have a break

Thank you for all your kind comments on my last post. Each and every one of them touched my heart. Especially as I read them while sitting by my sister's side as she slept. They meant a lot to me.

I'm home. It was the most intense and emotional twelve days of my entire life. I've never cried so hard nor felt so much emotional pain. Even losing my mother six years ago wasn't this difficult.

My beautiful, vibrant and very active sister had what was originally a mild stroke two weeks ago and then later classified as a catastrophic event. She's completely paralyzed on the right side, unable to walk, read, write or speak anything other than mutterings that no one can understand. Yet she is still completely cognizant of everything that's happening, can answer yes/no questions and has use of her right side.

She's given up and is refusing all food. I had a lot of good visits with her before I left on Sunday, but I knew it was most likely the last time I'd see her. My niece said my sister is not only shaking her head no when offered food, but now she's covering her mouth with her left hand. Yet she still drinks water so this will probably go on for weeks.

My one niece and her husband have moved into my sister's house with her and plan on staying with her for at least the next three weeks. Since she's becoming weaker each day, this probably won't last three weeks.

Sadly there was a lot of family drama due to another very close relative that was going through some sort of mental breakdown before this happened, and during the past week they spun out of control. I've never been in the presence of someone suffering with mentally illness. It was another nightmare on top of the nightmare my sister was going through.

Even though it was horrible seeing my sister so disabled and knowing her choice to slowly commit suicide by starving herself to death, I will always value those wonderful moments with her. Often it was just the two of us and we laughed ourselves silly. We had a really good time together, especially when it was just the two of us. Some people couldn't bare to be in the room with her, I couldn't bare to not be in the room with her.

Three of my family members called me yesterday and told me they were diagnosed with strep throat. I've had a sore throat, terrible stomach pains, and the worse headaches of my life during the last four days. I thought it was all stress induced. As today progressed, I continued to feel worse. Finally at 4pm I went to the urgent care clinic and yes, I have strep throat too. I have a horse-sized bottle of Amoxicillin.

The only positive thing I can say is my weight is 173.4. The truth is that I really don't care about my weight right now. Everything I was so worried about, my weight, my clothes, my hair -- in the scheme of life it's all a bunch of trivial crap.

When I got home Sunday night I decided to stop taking Ambien. The last two nights I've been rewarded with some of the worst nightmares of my life. Full of death and violence. Both nights I woke myself up screaming (and my husband). I don't know if this is some sort of Ambien withdrawal or if it's from those twelve days of hell in Fairbanks. Whatever it is, it's scaring me and really interrupting much needed sleep.