Thursday, July 16, 2009

The final chapter

My beautiful sister, Deborah Jeneane (Taylor) Sticher, passed away this morning at 6 a.m.

My thanks to all those family and friends who embraced us with their love and prayers through this difficult time. A special thanks to the staff at Atlanta Hospice who showered my sister with comfort and care during her final weeks, days and hours. Not only did they do an amazing job, but they came to genuinely love and care for her. May I suggest anyone looking for a worth cause to which to donate, consider this fine group.

I don't know that I'll ever be able to discuss these last few days with anyone but my sisters who were there with me in Debbie's last hours, and although I miss her terribly I have to be comforted by the fact there are no more tubes and pills and pain. She was sweet and stubborn and God better be prepared for some head buttin' when Debbie gets to town.

Sunday, July 12, 2009

Guilt trip to the pity party

I'm feeling awful that I can't be with Debbie today. Jackson is sick so he is sequestered on the couch with medicine, chicken soup, liquids and the remote control.
DeAnn is with her now. Ray never came back last night. His son said Ray fell asleep on the way home (he sounded out of it to me earlier...probably from the xanax) and his son was too sleepy to bring him back and Ray's parents couldn't. We'll see if he shows up today. Debbie's son, Dustin is also supposed to come visit.

Sonny stayed with her last night and DeAnn told me he was an absolute angel. He puts on a tough act, but he's such a big hearted guy. Debbie's getting weaker and she liked having Sonny there because when she needed to get back in bed he could lift her and put her in rather than the laborious and sometimes painful moving and tugging we girls have to do. I can so clearly see the image in my mind of my brother holding her.

Sonny has had to sort of distance himself from all of this thus far, for some very good reasons. But when you need that guy, he is there. We all decided we cannot count on Ray. Sonny is planning on either staying with Debbie and leaving from work from there every morning or finding someone who can stay with her. DeAnn and I will be going by every day after work and staying as late as we can. Tina is already making plans to come back here as soon as possible.

I stop by the chapel every time I enter and leave the hospice. I used to give thanks for another day with Debbie and to selfishly ask for one more day. Now I just ask that she be pain free.
All prayers appreciated.

Saturday, July 11, 2009

Where do I start and don't get me started

Note to self: reintroduce yourself to husband this evening.

Every evening after Glenn gets home, I head over to the hospice, or on the days he's off, I head over directly after work. DeAnn and I talked and realized we can only be there as much as we can (which in our case is every spare moment) but that between the two of us there is simply no way we can be there 24 hours a day, 7 days a week. Of course, that means our new garments are made of guilt, but what can we do?

Tina came up from South Carolina and spent Thursday night with Debbie. I joined her on Friday evening. I will cherish every moment we spent together. Deb's pump now has IV morphine in it. It gives her pain medication continuously and she can also push a button every 8 minutes for a "booster." When I say "she" can push it, I mean we. She's simply too weak. So we are in fact pushing it every 8 minutes and her pain fluctuates between a 7 and a 9 on a scale of 1-10. Which means it still sucks.

Tina and I got our pjs on and settled in for the night. The nurses came in and arranged her pillows and turned her on her side so she could sleep more comfortably. Debbie loved it. Mason, the cute male nurse called us the "yoohoo sisters" because Tina and I were yakking during the pillow arranging session and when he needed our attention he shouted out, "Yoohoo! Sisters!" Tina was exhausted from being up most of Thursday evening and although she made me take the more comfortable of the two recliners, she was able to get some rest Friday evening. I woke up every 60 minutes on cue and quietly got up to give Deb another shot from her pump to help with the pain as she slept.

We had turned in around 11:30 and Debbie woke up at 2:30 needing to go to the restroom. In spite of my previous post, we are still doing this which is a good thing since it gets her up and moving about. After, when she was washing her hands she quietly said to me, "I wish this would just come." Which I took to mean the end. DeAnn had me read this 20 plus page printout the doctor had left called "crossing the creek" which explains the death process and the various stages and what the body will do to make itself comfortable. It made a lot of sense to me and in a wacky way made me realize all this was a natural (albeit sad) progression.

I told Debbie she was in charge of that (when I read the printout it said terminal patients often hold on if they have "unfinished business"), to which Debbie replied she was in charge of nothing. "I'm not in charge of the cancer. I'm not in charge of the pain." I told her how sad I was this horrible disease had ravaged her body but that her mind and soul had not been touched.

She fell asleep again around 4 am and slept until 7. Tina slept another couple of hours and Debbie actually had a good morning (in this world of the new "normal") and had a little coffee as well as some grits. When DeAnn arrived Tina and I headed for High Falls, which is where Debbie lived until she came to DeAnn's, and then the hospital, and then the hospice, and then back to DeAnn's and now back to the hospice. Whew!

Debbie is the shutterbug in our family and she has a bar counter full of photographs at Tony's (the stepfather) at the lake at High Falls. Tina thought she could scan them all into a digital frame for Debbie so she could enjoy her photos at the hospice. Time was something of the essence as the sisters told me that the nurse practitioner at the hospice told them Debbie could pass away this weekend. I may be naive, but after the relatively good morning she had and the fact that she is still getting up and moving (though slowly and with pain) and still eating and drinking (though little) I just don't see that happening.

Tina ended up shooting the photos with her digital camera while I talked with Tony. He's 95, a little hard of hearing and still has a fairly heavy accent from his native San Salvador. I told him Debbie wasn't coming home and that she was going to die and that she was worried about him. She's worried the "vultures" as she calls them, will try to trick him out of his home and money. I told him not to give any money to Ray and that I would come by and check on him every other week, get him money orders for his bills and take him to the store. The main thing is I can tell he is very, very lonely without Debbie there and would appreciate the company.

It was nice having that time with Tina but it was incredibly painful to go in Debbie's room and see her still unmade bed from when Tina and DeAnn rescued her when she was home alone after being released from the hospital in Macon. It hurt to look at all the photos of Debbie, many when she was younger. She was beautiful and had long, long hair and such a beautiful smile. It hurts to know what this disease has taken from her. Those beautiful blue eyes are still there, though and they will pierce you to your soul.

My brother Sonny came to watch over Deb tonight. He was on a mission to find out her wishes for burial, etc and the sisters and I are praying he exercises some kindness and discretion. We think he will. I called later to see if he was doing okay and Ray and his son Joseph were there. I wanted to know if Ray was planning on showing up any time soon. Debbie doesn't like being alone and the reality is the rest of us have to work on Monday. I was taking to Ray and I know I was being cold and abrupt but when he started in on his problems I just felt as though I would vomit if I heard another word from his mouth so I hung up the phone.

He is an addict. He has addict behaviors. He lies, he steals and he tries to cover his tracks. He is a con artist and though his mother is a sweet woman, I think he cons her most of all. I no longer trust him and I don't think we can depend on him. I will be civil if that is what Debbie wants. If she asks him to be there I'm sure he will. No one can refuse those blue eyes. But my point and the reason I'm so pissed, is that she shouldn't have to ask.

Thursday, July 9, 2009

What do we do now?

Has it really been over a week since I last posted??

So much has happened...good and bad. We watched Debbie for several days and her blood pressure was good and she was responding well to the time release oral morphine. She was using the pain pump infrequently so we thought there was a chance she could go home. Much to our suprise the Doctor agreed, so the wheels were put in motion to make that happen. I spent Friday night with her and got her up and dressed. I held it together pretty well, mainly because we were all so frigging happy she was going "home", but when I saw her sitting in that stretcher to be moved to the ambulance, I just lost it.

Debbie looks like a baby bird right now. She's so frail and she has those little wisps of black hair coming in. She's sleeping a lot but when she opens those blue eyes and gives you a smile, or says something smartass, you feel as though you've won the lottery.

Once we got to DeAnn's they had to bring her in on a chair because the stairs were problematic, but the room was ready and we got her all situated. She fell asleep almost immediately and she just looked so relaxed and peaceful. She was happy to be home and later told Deann how happy she was to be there. In her bedroom is a photo of all five of the siblings going left to right from youngest (Tina) to oldest (me) with DeAnn, Sonny and Debbie in the middle. Debbie was always the prettiest and she had such long hair. She was quite proud of that hair. So sad to see it gone and her light fading.

I don't have the emotional strength at the moment to recount the last four days but it included very little sleep and my sister DeAnn was worn out. I got home from work yesterday around 7:45 pm and DeAnn called me around 8:30 to say Deb was having trouble breathing, was in a great deal of pain and had not taken her 4pm meds because she couldn't swallow them. Debbie wanted to go to the ER, which you can't do once you sign the hospice papers. I called the on-call nurse who agreed to come out and evaluate Debbie and I jumped in the car, breaking several speed limits to get there. Clearly the folks in front of me on Riverdale Road did not know I had a sick sister.

Bottom line is Debbie was transported back to the hospice last night. DeAnn and I were both in tears because we felt like we had let Deb down. We really thought, that between the two of us, with some major support from Ray and some occasional support from other family members and hospice volunteers that we could cover having someone with Debbie 24 hours a day. DeAnn found out rather quickly how totally consuming and exhausting it is, although she never once complained. For a mountain of reasons, I won't go into, DeAnn and I came to the realization we can't depend on Ray. So our dream of a peaceful sister, dying at home, was in shatters.

You need only to look at my baby bird to tell she can't swallow. Her throat actually has an deep inward indentation. The hospice doctor is putting all her meds in her IV line now so Debbie will be sedated most of the time. There won't be anymore watching "Case Case" at 1 am, or 3am bathroom trips, our laughter or silly comments. It will just be quiet waiting. Just waiting for what we know is coming but wish so very much wasn't. Simply not ready for this.

DeAnn just texted me to say Debbie was having a good dream and was smiling. That made me smile too.

Wednesday, July 1, 2009

Two steps forward, three steps back

After the memorial service for my cousin Steve, Tina headed over to the hospice to stay the night with Debbie and I headed home to see my kids and to sleep. I was hopeful Tina would have the same positive experience I had the night before, but unfortunately that was not the case.

Tina said Debbie was up and down all night and neither of them got much rest.
I don't understand the finer points of the tweeking that is going on to get Deb's pain meds at the right level, but I know there's a great deal of back and forth. For example, she was taking the MSContin 3 times a day and using the Dilaudid as her "breakthrough" pain med and that was working pretty well. Then Saturday, when Tina was there they switched the pain meds to 4 times a day and that's when things started to go south. The next modification was to go back to 3 times a day put up the dosage. So far so good on that.

Debbie is sleeping a great deal, but to be honest, I think she may be flat exhausted. When she has a good day, it's as though she has to squeeze every last drop out of it and she ends up wearing herself out. She asked Ray how she could make her lungs stronger and he told her to get up and walk around. As much as she'd like that, she simply doesn't have the energy.

Also, I know she's getting cabin fever, so I emailed Carla, the social worker and ask if she could have a preliminary discussion with the Dr. about when Debbie might be able to go home. Much to my surprise, she said anytime. I'm very happy to report the wheels are in motion and we're hoping to take her "home" to DeAnn's house on Saturday. Debbie's excited but also a little apprehensive because she won't have a cadre of nurses around 24/7 but she will have all of us who have been and will continue to be around all the time. And hopefully, she'll be more relaxed at DeAnn's and will get up and move around, perhaps even go out on the deck. Worse case scenario is she can come back to the hospice if she decides the home care arrangement isn't working.

I can't say enough nice things about the hospice folks. They're ordering a bed, bed tray, oxygen (also portable oxygen) and a wheelchair for Debbie. They have been so encouraging and caring. Knowing they are there as a safety net has really allowed us to keep going and to be there for Debbie. When I got to the hospice today Debbie was sleeping so peacefully. She was reclined in a comfortable position and breathing quietly. She wasn't sitting up fighting the sleep and talking to herself. What a nice change, and she needs the rest. I'm also relieved to know the hospice will be transporting Debbie to my sister's as they said her comfort is the most important thing.

And while I'm handing out warm fuzzies to all the nice folks at the hospice, I have to mention how kind Ms. Andrews at Monroe County DFACS has been in helping me to try and get Debbie's paperwork through on Medicare. Suffice to say, I have homework.

On a sad note, Debbie's next door neighbor at the hospice, B Jay Womack, passed away this evening around 9 p.m. B Jay was only 35 and had non-small cell lung cancer which is very aggressive. When he arrived two weeks ago he walked in on his own power (albeit slowly) but his decline was very swift. He had dozens of friends by to see him on his last day. B Jay was an incredibly nice guy and that's really all I knew about him. I've learned a great deal in the last three hours. For those that are interested, B Jay is the cover story on this week's Creative Loafing here in Atlanta (an alternative newspaper /tabloid). He was a fixture on the Atlanta Music Scene, going by the name Bobby Ubangi. I wish I'd had the time to get to know him better...that's a loss for me. But my focus was on my sister and that's a plus. Godspeed, B Jay.

Saturday, June 27, 2009

A Sister Sleepover

Friday was my first time to actually spend the night at the hospice with Debbie. We sent Ray home on Thursday night and already he's sounding rested and more chipper (via phone conversations).

When I got there around 5 p.m., Debbie's youngest son, Montana, was there as was Mark, my ex-sister-in-law's brother. He's great and actually lives not to far from the hospice. The room seemed totally different when I arrived.

Debbie had opened all the curtains and blinds and natural light was streaming in, plus I could tell she had been in "cleaning"'s just what she does, so I knew right away she was feeling pretty well. She was sitting up holding court. We talked a little about Michael Jackson and Farrah Fawcett and then we found the Farrah / David Letterman interview on the internet and watched that. Montana also found photos on the internet of the VERY nice apartment complex where he'll be living next year when he goes to Georgia Southern.

They both left around six and then it was just me and my girl. Debbie told me she had "the talk" with both her boys (Dustin had been there the night before and most of that day) and we no longer had to walk on eggshells for fear of saying something we weren't supposed to. I ask how they were doing and she just floored me with her wisdom. She knew it was going to be hard on them, so she immediately asked them to go get her a Sprite, so that they would have an "out", to get out of the room and get their heads straight.

She and I had dinner and then she started feeling sick to her stomach. We thought perhaps it was the quiche from dinner but then she realized she wasn't getting any oxygen from her nose cannon and that was the culprit. When the nurse had come to add water to to the container the air runs through, she had not put it back on tight enough. Once that was fixed Deb immediately felt better.

We talked a bit. She told me in no uncertain terms that she wants all four of us sisters to go to see the movie "My sister's keeper" together. I asked if she was sure and she said she really wants to see it but she doesn't want us all looking at her all weepy eyed. We talked some more about logistical stuff, Medicaid, Social Security, Health Directives...stuff no one really wants to discuss.
Then "Farrah's Story" came on TV so we watched that together.

I got in my jammies and pulled out the "recliner bed" and settled in for the night. I made her promise to poke me if she needed to get up during the night. We fell asleep around 11:30 and she poked me awake at 2:30 so she could get up and go to the restroom. Then we stayed up and watched "Cold Case" for a couple of hours before sleeping again from 4-7 am. I actually woke up feeling pretty refreshed. I got her a cup of coffee (they have the coolest FREE starbucks machine in the break room) with french vanilla creamer, of course. DeAnn arrived around 8 with the fresh watermelon Debbie had asked for.

When I left Deb was happily munching on sweet watermelon and I headed home to shower and get ready for the memorial service for my cousin Steve. Made a brief detour to get Krispy Kremes for my boy, Jackson, (who texted me last night "I miss my mommy") and I'm just waiting on sister Tina who is stuck in traffic on 85S. All in all, a rockin' good night. Now we just have to get the girl "home."

Wednesday, June 24, 2009

Best Day EVER!

Today I spent most of the morning in tears while on the phone with Medicaid and Social Security.

I mean, everyone is as nice as they can be but it's so frustrating...there are so many hoops to go through and no one can tell you anything because of "privacy" issues. I finally told the Medicaid woman that I didn't know why I was even fighting this battle...the hospital can just figure out how to get paid. In truth, I was thinking we might need to transport Debbie by ambulance at some point, and Medicaid needs to be in place for that to happen.

I left to head over to the hospice around 10 a.m. DeAnn and Tina spent the night last night and the plan was DeAnn would stay there until Dustin (Deb's older son) showed up to stay the night and that Tina and I would head to the lake to have a visit with Tony ("stepfather") and to do a couple of errands down there.

When I was about 20 minutes away I got a call from Tina asking me when I thought I'd be there. She whispered, "I didn't tell you this, but Debbie has a surprise for you." I usually come in the front door because I like to stop by the chapel and I like to say hi to all the nurses on duty, but this time I ran into my niece and Ray's parents in the parking lot so we went the "back way"....through the garden so we could enter by the french doors off the patio. Also, I had some clothes for Deb's next door neighbor B.J., and I wanted to see if his door was open.

When I went inside the room, DeAnn and Debbie were sitting on the side of her bed, Deb had her head on DeAnn's shoulder and looked sleepy. Then all of a sudden, she jumped up and said, "want to see me do a little jig?" and she started dancing around. She said she wanted to impress me. Boy, did she ever. Our sister was back....right there in the room. Was she weaker, and tired, and had her hair fallen out? Yes, yes and yes, but she was the funny, bright Debbie I love. I was so happy I could barely contain myself.

We can only attribute it to the change in her medication. The Dilaudid was really knocking her out to the point she was basically non-functioning so they cut back on that dramatically, shifting it from her "main" pain medication to her secondary "break through" pain medication, while starting her on a form of morphine. Now my ex-sister-in-law is on small amounts of morphine for her chronic pain and she tells me it keeps her from sleeping, which may explain why Debbie never slept today...that little energizer bunny was going from 5:30 am and according to DeAnn's text message to me is still awake now (11:30 pm).

She tried to rest and would catnap for 10-15 minutes then those blue eyes would pop open and we would sit and talk about anything and everything. Ray slept practically the whole day (what was THAT about????) so Debbie and I got to just laugh and talk. Hope this doesn't fall into the "too much information" category but today I helped Deb to the rest room (mainly just to steady her...she has it under control but we don't want her to fall) plus there is the oxygen cord and the pain pump that she has to take with her to contend with. On the way to the rest room, I (for about the 10 millionth time) knocked her oxygen line and made it come apart at the connection. Of course I apologized profusely as I was trying to put it back together. Debbie starts coughing and gasping for breath and I yell, "are you okay?" and that little stinker bursts out laughing. "Got ya!"

We were sitting in the dark later while Ray was snoring away, and she started to (lovingly) make fun of Ray: "oh my angel, oh my baby" which is what he says to her all the time. And remember those 11 pills I said she had to painstakingly take the other morning? Tina said she popped a handful in her mouth this morning and washed them down with a slug of apple juice. Look up dumfounded in the dictionary and you'll see my picture! DeAnn (the joykill...kidding sweetheart) gently reminded us that Deb often has a "good day" when her meds are changed.
DeAnn is basically waiting for the other shoe to drop.

Well, I know that shoe is coming for for today, she had me at "want to see me do a jig." It gives me hope that if she can have a few more days in a row like this, we may actually get her out of there and to my sisters. In some ways I think it could work better and not be as tiring on DeAnn as she wouldn't have those long drives back and forth to the hospice.

I won't be back until Friday when I'm planning to spend the night (my first overnighter there) but I'll have to leave fairly early on Saturday morning to get ready for the memorial service. I'm sure I'll be getting loads of text messages tomorrow and I hope they'll tell me Deb had another good day. Fingers, toes and eyes are crossed.

Next post: A sister sleepover