Holy shit. What a week! Friday was totally awful. Mom could not speak an intelligible word. Unless you call a mumbled okay intelligible. She tried so hard to communicate, but it was just grunting and moaning. I wanted to cry. Is she in pain? Possibly. She scowls, she moans, but if you ask her if she is in pain, you don’t get an answer that you can understand. The lady in the next room bitches and complains constantly and I want to walk in and scream, “Are you dying? NO, I didn’t think so. Then shut the hell up and quit your incessant whining, because the lady in the next room IS dying and she never complains! She shouldn’t have to have your bullshit as her soundtrack, and neither should we!” I can fantasize. Mom is now getting ativan, to calm her a little, since not being understood seems to agitate her somewhat. Or maybe it’s pain. God, I just don’t know!

This week, I couldn’t find the fabric I intended to use as Jenna’s quilt squares that I am making in lieu of a guest book for the wedding. I hate guest books. I think they are dumb. No one looks at them, and all there are, are signatures. So what. I had to go and re-buy the fabric. (I found it this morning, in the dumbest place ever) Then, one night, I came home and ran my car into the built in cabinets in my garage. Didn’t do any damage, but I still don’t really know what happened. I can’t find my car charger for my phone and it’s making me crazy. I never take it out of my car. Yeah, I’m okay.

Last night I woke up in the middle of the night, and it hit me that the worst thing isn’t mom dying on Jenna’s wedding day, because everyone knows not to call us on those three days. It is mom dying, after we leave, but before Tyler does. If that happens, he is alone in Tucson and we are already gone and in wedding mode. That would be awful. Please! Let her make it until he is out of town or we are all back in town. He is so close to her and I know how hard it will hit him. It will be hard on all of us, and as awful as it sounds, watching this for the last three months, I think there will be a certain degree of relief. For her, for us, everything. We have lived in limbo and it is sucking the life out of us. My friend Vivian, told me how bad she feels that she hasn’t been here to help and support me during this time (I hate to use the term, but Vivian is a snowbird). The truth is that she texts me often, as does my friend Lauri, and it IS supportive. I feel the love and the support, with no pressure. It works. I haven’t seen much of any of my friends. There is no time for that. Dinner or lunch out with friends a couple of times and that’s it. We’ve made plans with people and cancelled many times, because I can’t just have fun right now or carry out plans. Neither can Tyler. We are consumed by this, so, yes, it will be a relief when it’s over, but we will miss her forever.

It also hit me yesterday morning, that not only have I not begun to pack, I hadn’t even thought about what I planned to take. After Rick went to bed last night, there I was trying to figure that out. My crazy, wonderful closet system has made that much easier, but Rick may actually have to pack his own suitcase this time, because I just can’t seem to get in to that this time. All of my errands are complete. All that is left is my eyelash extension appointment tomorrow (seems silly, but I want to do this for the photos), meeting with the house sitter and going to the leasing office and buying out Tyler’s lease. If I do forget something it won’t be a huge surprise, but I think I’ve got this now. We’ll see……

This morning mom’s a little more awake and is talking a little more and you can understand her. I noticed that three people had been here already but she didn’t remember anyone being here. Even if she can’t remember later I think she still enjoys it at the time. And it’s good for the staff to see people coming and going. Mom’s friend Penny is putting together a schedule for people to keep her company while we are out of town. If you would like to take a shift or two you can call or text Penny at 520-237-4848. We all appreciate it and a big thank you to Penny for putting this together! It’s a huge comfort.

Shoes! When we started our adventure to hospitals, re-habs, and nursing homes, it was tank top and flip-flop weather. Now, here we are in jeans and shoes already. Where the hell did the summer go? Oh, yeah, now I remember-it was snatched from us by cancer……

When you visit makes a difference. And it also seems to change day to day. At this point, mornings are pointless. Mom seems to come around after 1:00pm. Evenings are touch and go. The night before, Tyler sat with her and she never woke up, talked or held his hand. Yesterday, I went down around 11:00 so she could FaceTime with her favorite sister, Alice and niece Steffie. She had little to say and drifted in and out. By 12:30, I left. I have been there countless hours and watched her sleep. Yesterday, I had a full day of things that had to be done. I heard from Patricia that mom was awake and engaged in the afternoon. Tyler and I went together after he got off work and she was still awake. She talked a little, smiled, held his hand.

I have learned that if you get there and she’s asleep, if she doesn’t wake up in the first 10-15 minutes, she probably won’t. Just leave and try another time. It’s frustrating and she doesn’t know you’re there. On Thursday she knew exactly who visited in the afternoon but didn’t remember that I was there or that we FaceTimed with Alice and Steffie. She didn’t remember seeing Bob. I’m waiting to go until around 1:30 and will bring Molina’s beans.

I finally got Connie’s airline ticket cancelled and refunded today and mom’s flight cancelled. Hers was non refundable, but they refunded more than half and told me how and when to get the rest refunded. Plus the agent was very kind……Southwest Airlines, you rock!

I think Rosa must be the luckiest person. Mom always seems to do well on days when Rosa visits. Tuesday was no exception. Rosa normally comes Tuesday and Thursday, so I have some hope for today. She has had her ups and downs this week. Wednesday was another down day. I was able to catch every 5th or 6th word. Her breathing was uneven and she said goodbye often-actually it was auf wiedersehen. In between auf wiedersehens, she passed along little pearls of wisdom. To Jenna, don’t get discouraged, keep on going, everything will work out. I wasn’t sure what she was talking about in particular, but good advice nonetheless. To me, be there for Jenna, she will need your advice over the years. Okay! I’m on it. To all of us, keep up the German traditions. Christmas Eve is the important day, even if Americans think it’s Christmas Day. She seems to be very focused on Jenna right now. She mentioned that she still can’t believe she can’t go to her wedding. She told me I would love being a grandmother. I agree with that as well. She fell asleep often and never let go of my hand.

Tina, the day nurse, came in and I told her mom kept saying goodbye. She asked mom where she was going and mom said she was going to the next dimension. The hairs on the back of my neck stood up. She mentioned the pretty light in the glass of champagne. Really a weird day. I kept thinking of the twilight zone soundtrack.  Before Tina left, she gave me her mobile number in case I want to talk to her, because she will be off today.

Sleep, for me, has been pretty restless these days……there is just a constant feeling of unease, dread and sometimes panic. I can’t seem to shake it.

This morning before going to Handmaker, Taylor Adair came to the house to get mom’s final arrangements in place and all the paperwork signed. Apparently this cannot be paid for in advance, but it can be arranged. Creepy still, but not as creepy as the room at the funeral home. When I got to Handmaker mom was in worse shape than yesterday-not really able to talk, noisy breathing and choked easily. I tried to feed her some oatmeal and diet coke-the breakfast of champions! She got a little down but was unable to swallow her liquid meds…..I have to run out and take care of a few more things so that Tyler can move in to her house soon to take care of her feline babies. So much to do before I leave town!

Surprise! I didn’t drag myself to Adair yesterday. I found a million other things to do. Laundry, paying bills, phone calls, wedding details, you name it. Anything but that. I got a phone call this morning from Jenna’s old friend and former college roommate, Heidi Adair. Her husband offered to come to the house or even Handmaker to get the arrangements in place without having to go to that creepy room with all the caskets and urns everywhere. Thank god. We just went through that last year with Mickey and I was totally dreading it.

It was a beautiful day. For the first time this year, we could feel fall in the air.  Mom had her ups and downs. She went between okay and sad, sometimes you could understand her, sometimes you couldn’t. Sometimes she was awake, other times she was totally out. She ate a little more, but still not much. When Tyler and I got back in the evening, Dan, the night aid, was sitting by her bedside feeding her. I relieved him and took over, but it was very sweet. She has won over the hearts of her caregivers.

I had another meeting with the hospice nurse and the hospice social worker.  What a caring couple of people. We all decided that if something happens while we are in Texas, no one will contact us between Thursday and Sunday at noon. This will give us the opportunity to enjoy the wedding and Jenna can leave on her honeymoon without being totally sad. So even if you have my mobile number and you know-DO NOT CALL ME if she passes away at that time. It won’t change anything. We all get a few days break and Jenna can enjoy her wedding and honeymoon without grief.

Tyler’s old friend, Germaine, who used to work at the bank where mom and Mickeys accounts are, called her former manager who will help us release a CD to pay for mom’s very expensive care and the upkeep of the house. Another wonderful person who has helped us when we need it. It makes a huge difference at this rough time.

In the meanwhile mom made a few more goodbye Skype and FaceTime calls. She still didn’t get to talk to her closest sister, Alice. And we will keep trying-it’s very important to her.

Will it happen tonight? Tomorrow? Next Wednesday? On Jenna’s wedding day? That’s what life is like now. It is painfully obvious that mom is fading away. The question is when. Every day I see my mom, I am happy for what is left of her and sad for how much we have already lost. How long can this painful daily good-bye go on? It is unbearable.

Hospice care is in place. It’s the right way to go, but difficult nonetheless. Mom had a pretty good day. She didn’t eat a lot, she tried to communicate but it was often difficult to understand her. I always felt loved. My mom has always been honest and direct, generous, supportive and understanding. Yesterday she was loving and sweet. She wants to Skype with her sister today one more time.

After speaking to mom’s doctors, hospice nurse and social worker (and getting another stellar email from mom’s friend Barb), I know what I have to do next. It is not something I am looking forward to. Today is the day I will attempt to drag myself to the funeral home and make mom’s final arrangements. It makes me physically ill. I also have to write her obituary. It took me about 10 minutes to write Mickey’s but I have a feeling this one won’t go as quickly. I also have to cancel the airline tickets for the wedding and switch out the rooms at the hotel.

I have to designate someone to be in charge in my absence. This is not as easy as it might sound. It can’t be anyone who is too emotional, it needs to be someone who is level headed. And of course willing to grab the reins. Quite a tall order, it seems.

After what seemed like a miraculous turnaround, mom had a fairly good day on Sunday. She didn’t sleep as much, she was able to eat a little and she actively seemed to listen. It was very difficult to understand most of the things she tried to say, but she could get yes or no across pretty well most of the time. I know in the big scheme of things this day didn’t mean as much as I would like it to. How could it? There is a tumor that is growing. It will not suddenly reduce in size without treatment. There is infection. High blood sugar. Swelling. The possibility of new DVT’s or PE’s. I think change is what is constant-the tumor presses this way and that and there are bound to be countless effects. On Sunday, we were lucky and the change was more positive than negative, but I think we can be certain that it will not last. On this, I would love to be wrong.

Mom had mentioned how she would like to see her cat, Brandy. So Tyler and I went to her house and put Idgie’s old puppy harness and leash on her and put her in her carrier to go for a visit. I doubt we were gone an hour but by the time we got back, mom was wiped out and had some pain in her back. She didn’t seem that interested or engaged, which we both found surprising. Brandy was wonderful, sitting very quietly on the bed next to mom. She met some of the nurses and other patients, all of whom were impressed that a cat was on a harness and leash and so well behaved. Not bad for the first time.

On our way to get Brandy, we were stopped by Dr. Z, the hospitalist, who wanted to talk about getting hospice in for a re-evaluation in the morning. We once again discussed inpatient hospice vs. hospice at Handmaker. I mentioned that in all the time mom was there, and especially now when she is no longer getting out of bed, I have never seen anyone turn her. Ever. I will voice my concern about that to the hospice folks as well. If she is not turned often enough or does not have the appropriate type of bed, she may experience skin breakdown, or bedsores. Lo and behold by the time we got back, the aids started turning her every 2 hours. One more thing that was not considered until I mentioned it. Come on!

Someone may have mentioned to me yesterday, that there are those who find my  choice of words annoying, but I think offensive is probably a far more accurate description. I would love to apologize for that, but I won’t. Here’s the way I look at it, the last few months of my life have been hell. I’m living it every day. I don’t see my mom once or twice a week, not every other week, not every three weeks. I have missed 6 days out of the last 80, and that was when I visited my daughter. I have earned the right to drop every last f-bomb or whatever I see fit. It’s how I feel. I love being able to pass along information about my mother for her friends in one place that is easy to access. Ultimately, though, this blog is for me. How self-centered does that sound? Guilty, as charged-it is totally self-centered. I want to chronicle this time and be able to go back and read it, when it doesn’t hurt so bad. It’s easy to lose track of what happened and when and how it felt at the time. This experience has filled me with sadness, hope, disappointment, surprise, frustration, anger, and sometimes rage. You can choose to join me and accept me, potty mouth and all, or not, it’s up to you. At the end of the day and at the beginning of the next day when it’s just me and my laptop, this is what comes out with no filter, and I believe if it didn’t come out here, I would probably explode.

We had the appointment with the hospice intake nurse this morning and mom is now a hospice patient. All the paperwork is done for any possible transfer to Peppi’s and she is prepaid for her stay here for the next few weeks. It all feels unreal.

Yesterday was not a good day. I got there mid-morning and mom would not wake up. Lunch came around and still nothing. I spoke to the nurses aid and she said they got her in to a wheelchair and took her to the dining room at breakfast and brought her a bowl of oatmeal. She was not able to feed herself and could not speak. The aid fed her and took her back to her room and got her to bed. She never did have another bite the rest of the day. I was able to get her a sip of soda once around 1:00 but she had a hard time swallowing and coughed a lot. She briefly half-opened her eyes a few times but never really woke up or ate or drank anything the rest of the day.

SO many people stopped by yesterday  and everyone was shocked at the drastic change. I spent 6 hours there on Friday, and Saturday still managed to shock the hell out of me. We went home to make some dinner around 5:30 and were back before 8…..still nothing. We turned on her favorite Brit-coms and she just kept sleeping. By a little after 10 there was still no change and we called it a day. Scared out of my wits to see what today will bring. Getting to sleep was a chore, staying asleep was also a chore. The only thing that helped was a Benadryl around midnight and another around 4. I know I need the sleep because I have a bad feeling about today.

That’s all I have at this point. But, before I sign off, I need to say one more thing. I cannot believe what wonderful friends my mom has. You guys surprise and amaze me every single day. I have just recently gotten to meet some and have gotten to get much closer to others that I have known. You guys have helped us so much going through all of this and you will never know how much it means to us. I talked to my mom about this the other day. How did you make so many wonderful friends? She told me that you have to get involved with things that interest you and it just happens. The German Club, the Officers Club, her art, the canasta group, the Sam Hughes neighborhood…..she did a lot and it paid off in deep, lasting friendships. She is one lucky lady in so many ways. Just not so much these last few months……

Quick update: when I got to Handmaker mom had already had some oatmeal and was awake but her speech was still pretty much unintelligible. I fed her some bean soup at lunch and then she had a cheese blintz and some applesauce. I tried one too-how is it that I’ve never had that before. They are delicious. Anyway, an improvement for now.

You would think by now that every day would start to be the same. Not yet, though. You never know what you will encounter when you walk into her room. I had the requisite number of phone calls inquiring about mom’s condition. I know her friends love her and really care. They just want more information……that being said….I just wish more of them would read the blog. How many times in a single day do I need to go over the most heartbreaking time in my life? Help me help you. There’s this thing called the Internet….. Sorry, now I’m just being mean. It has been an incredibly rough week.

I had to go back to the scene of my meltdown on Monday….awkward! I had hoped the lady would not remember me but no such luck. She asked if the other place could hem my dress and how my mom was doing. I apologized for my meltdown…..People are beginning to surprise me. A lot. She then told me to enjoy my daughter’s wedding. Wow.

On the way to the maker of hand (sorry, writing or saying Handmaker is getting old), I stopped at Lucky Wishbone. Not many people can inhale the enticing aroma of the bone and not succumb. Mom could. She had not ordered lunch nor had she had anything since her morning bowl of oatmeal. When she refused to order dinner, Dan, the nighttime aid came to me and expressed his concern. I later ordered her matzo ball soup and latkes, because there is always room for that. Tyler was there for her dinner and she asked for a hamburger. So the appetite was back to some degree.

The hospice intake nurse was very nice, but told me that hospice would not take her while she is on IV vancomycin.  When that’s over we’ll do it, which of course will happen while I’m gone. She felt we should stay with the program for now. We are meeting again next Friday.

We had planned to go to a steakhouse with Buddy and Carol last night, but Buddy’s mom wound up in the hospital. Is there some kind of cosmic rule that says most people will lose their parents before the age of 60? I don’t know more than a few people over 60 whose parents are alive. Scary. And I might add tick tock.

My mother said Jenna needs to name her daughter San Antonio Rose. Um, wtf? As Jenna said, “so she wants her to be a stripper?” I pointed out that she also wanted me to name Tyler, Wolfgang. That would have been an epic fail. Clearly, I was lucky with Marion, which I never quite understood the logic of. I have a cousin named Marion and there are so many good German names. Heidi, Erica, Monika, Michaela, Stefanie, Olga, Charlotte! Anyway, mom is officially relieved of children naming duties. She later said it would be nice if Jenna would name her daughter something German-a nice broad request. At least she said daughter, because seriously, German boy names just don’t translate well. I can’t think of a single one offhand. She asked Tyler to FaceTime with Jenna. The conversation broke Jenna’s heart, she knows what we go through every damn day. Every. Damn. Day.

When I got to Handmaker yesterday morning, Eduardo, the CNA, was scurrying out of mom’s room to go get something. As he was walking out he told me that every morning when he checks on mom, she says Guten Morgan Sonnenschein (good morning sunshine). He came back a minute later with his iPad. He began to get her dressed and played the song Guten Morgan Sonnenschein by Nana Mouskouri for her on his iPad. She absolutely loved it! Seriously one of the sweetest gestures I have witnessed there.

Rick helped me get mom to her infectious disease doctors appointment around the corner from Handmaker. We walked over with the wheelchair and she liked being outside in the sunshine for a change. Dr. Valdivia is keeping her on IV vancomycin for two more weeks. She said if she were a candidate for surgery to remove the bone flap (ewwww, that term again), she would keep her on the vanco for another 4-8 weeks. As it is, after the two weeks, she will probably go to pills. I don’t really get the difference, but, I’m sure there is a good reason that is over my head. She was also concerned with the swelling in her left hand, which I’ve been asking about for weeks. Her left hand and both of her feet are so puffy, it worries me. They were planning to have someone come in and do an ultrasound or an X-ray, not sure which. I had to have my arm re-checked so I couldn’t stay to find out and when I came back later, mom didn’t remember if anyone came in to do it. I will check with the nurse when I get there.

I missed a few calls yesterday and didn’t return them. My apologies, I was kind of down and just couldn’t do it. I don’t think she will be going to any outside appointments for a while, so feel free to visit whenever you’d like. She is not asking for anything in particular right now, so if you want to bring anything, feel free to use your own judgment. I just can’t be of any help on that. I offered to bring her something from Olive Garden for lunch and she didn’t want anything. I actually find that a little alarming. I will try not to overthink it, but will keep an eye on her appetite, which was the only good thing she had going of late.

We have the appointment with the hospice intake nurse today at 1:00. Everyone has assured me that mom is not a candidate and I have to say that if the nurse told me today that they wanted to move her in, I would be terrified because I now get exactly what that would mean and I’m really not ready. I just want so badly for her to be comfortable and not be so terribly sad. I think she may be giving up and I understand why she would. Don’t worry, I will not try to guilt her in to hanging on for me, but I am trying to give her goals. Visits from my cousin Steffie from Germany after the wedding, Jenna after the honeymoon, her good friend Stephanie in November…. She just doesn’t seem to believe she will be here that long.

Oh. My. God. I can’t believe it’s already October. Holy crap, Batman. I would love to be beamed to a beach right now. Any beach. Okay, not really ANY beach. One with clear turquoise water that I can stand in and see my feet with a lot of space for walking. Maybe a nice beach bar that serves cute little rummy drinks, with or without the umbrella. And really great fresh seafood and fresh vegetables. I am eating like crap when I do eat. I have no time to cook. I am so tired. Seriously, I need a beach.

Mom got up yesterday morning and announced it was the day she would die. Hmmm, probably not today. But, I ran right over to see what was going on. She was crying inconsolably……She saw Maria Bishop in the afternoon and we talked about everything. She is having a very hard time just sitting up in the chair for any length of time and will inevitably spend more and more time in bed as time goes on. Mom got a referral for hospice at the appointment and they will probably come to her at Handmaker. She does not seem to qualify for inpatient hospice. No pain, no nausea or vomiting, shortness of breath or difficulty swallowing. That means she will be charged for hospice on top of the $274 per day, but who cares. It’s only money and you really can’t take it with you. The astounding thing to me today was that at the bank they told me if she has to use money from her C.D.’s we have to make a case for releasing the money. Nice. It’s hers. That is what it is there for. Fucking bankers.

I was in and out of her room from 10 in the morning to 6:30 in the evening, mainly in. Tyler and I got home, had one drink, one cigarette and were called back to Handmaker again because she wanted oatmeal. Somebody shoot me. You would think they could do oatmeal at any time, but apparently not. So, no dinner at home, again.

I woke up at 5:00, and we all know how I feel about getting up that early. But, may as well, I have to be back at Handmaker by 9, and would love to throw something in the crockpot before I go. I will eat at home today if it kills me. We are spending a small fortune on restaurant meals and instead of losing weight before the wedding, I am gaining it. Great.

I wish I had more positive stuff to say today but between mom’s condition and my exhaustion, I’m not seeing a lot of positive. Every time her doctor, social worker or case manager ask me how I’m doing, I smile and say I’m fine. I am not fine. Why can’t I just say that to someone when they ask? Probably because if I say it out loud, I can’t go back and pretend I AM fine. Sweet Jesus, this sucks.