My friend Vivian, put it best. I feel conflicted. I want my mom to get better and be able to go home. It’s what she wants so bad. But, when she’s in the hospital, I can breathe. Someone else is taking care of her and can help her if something goes wrong. I can visit her and make sure everything is going well, but I have some sort of life. How do I reconcile those feelings? I have absolutely no idea.

I will do things a little differently today, since her condition and situation is evolving constantly. As I receive new information, I will add it to the post rather than wait to write everything at the end of the day. Before heading down to the hospital, I decided to call her nurse and check her condition before speaking to her. The nurse told me that her left arm is still not functional, that they were waiting on cultures taken from the surgical site and that Dr Norton’s order was to continue the same. So she is not being discharged any time soon, it would seem. They also found MRSA in her nasal swab. I don’t even know what this means in the big picture. This poor woman cannot catch a freaking break.

I got a phone call from the case manager right before I left for the hospital. She talked about the MRSA, her current state of mind, what we may have to deal with in the near future. They are doing a contrast MRI to determine what is going on with the tumor and whether we should suspend radiation until the incision heals or if we should plow through. They will also be able to tell if there is a bleed in the brain that might be affecting the left hand. All in all nothing good today.

When you visit her in the hospital you have to wear gloves and a gown to protect yourself against contracting MRSA. So no hugs or kisses. I sat and talked to her and held her hand -my heart breaks for her.

There have been a lot of times that were hard to write about and this is one of those times. Mom’s surgeon warned us about two general anesthesias in such a short time and told us she would take a little longer to bounce back this time. But, wow. I was not ready for this. She doesn’t seem to know that she is in the hospital much of the time, and when she does, she wants out. First thing this morning I called her to tell her I was on my way, she told me they were letting her out today. Just as I said, “no, they’re not.” the nurse in the background said, “you are not going home today.” She was disappointed. She was groggy, confused and announced that there were several things advertised on television, that she really must buy. Several of. I told her I was glad she didn’t have her credit card with her….and that I don’t need a hot plate, or a new curling iron, and neither does Jenna, but, thank you.

I thought maybe if she got a little more sleep, she would snap out of it and be back to normal. So Rick and I went to Home Goods to pick up a few comforter sets  for her to choose from, for the new bed. Then we went to her house to do a few little chores and visit the cats. Next stop, Casino del Sol, because we always gamble right around our anniversary since we went to Monte Carlo on our honeymoon (and gambled-and just like Monte Carlo, we didn’t win). For 30 years it’s been a tradition, and we don’t want to mess with tradition. It’s worked for us this long, so why tempt fate? We also have no idea what our schedule will be like in the upcoming days, or weeks, or months, for that matter… Anyhoo, we went back to the hospital on our way home. Tyler was already there. And he looked worried. He motioned to me that I should check her left arm. It did nothing. Couldn’t grip a hand. Couldn’t feel if you touched her. What???? I held her hand and asked her if she could squeeze it. She said, “of course, give it to me.” It was already there. I cannot emphasize enough how this is not okay. I would love to believe that this is from the anesthesia, but I get the feeling it is not. Gina called to tell mom she was bringing her some good homemade German soup for dinner, which made her happy, because she is still all about the food. She told Gina that I was making steak tartar tonight and that she could have some when she came. She did not know she was in the hospital. We had another couple of instances when she wanted me to get something from another room, like we were at her house.

I hope like hell, that I will get there tomorrow morning and everything will be back to normal. But, I don’t believe it will go quite like that. I want to know what caused this to begin with and why there is such a huge change in her. This has to get better.

Well this day certainly didn’t go the way I thought it would. We went out with friends last night and stayed up way too late, so I was still pretty tired when I got to mom’s. Connie texted and asked me to call before I headed over. She told me mom didn’t sleep well again and that she was very weak and tired, and that her incision seemed to be bleeding. When I got there, Bob was with her and warned me that he was concerned that I wouldn’t be able to move her without help. She seemed groggy and extremely weak and even a little confused. I did not like the way this was going. I could barely get her to the bathroom and back to her bedroom alone. I texted Iris and asked her opinion. I looked at her incision and thought, oh my god, what the hell? It looked like it was very puffy and like it was starting to open. I have a low gag threshold and this was taking me to the edge. I texted Patricia-who has saved my butt multiple times these last few weeks. She came over and didn’t like what she saw either and thought it was time to call the neurosurgeon. Dr Norton was on call, which made me very happy because he did Rick’s brain surgery 25 years ago. Yeah, he’s old, but he’s still got it. He told me to take her to the TMC ER. They got her right in and when they moved her in to the bed, blood just splashed out of the opening. Gag. They did some blood work, ran a culture of the opening and did yet another CT scan. How is it that mom doesn’t glow in the dark with all these x-rays? Dr Norton asked the ER doc to see if she could look in to the incision to see if she could see the craniotomy. She could. He came right over. He said he would have to take her to surgery and clean out the wound, getting rid of the necrotic tissue and removing the catheter that Schroeder left in for drainage. He said her body didn’t like having that plastic in there and it needed to go. Then he would re-suture it. Within a few hours, she was re-admitted and headed to surgery with general anesthesia again.

The surgery went fairly fast and he felt good about it. He was glad he didn’t have to remove the bone flap again, but said this would be kind of hard on her-that she had been through a lot these past weeks. She would go to recovery and then back to the Intensive Observation Unit (Room 858) and would probably have to stay in until Monday or Tuesday, depending on how things went in the next few days. We ran out for a quick bite, because we were all starving, and then went back to the hospital with the chemo drugs. She really didn’t look very good, and she asked if we were there to take her home. Umm, no. She didn’t like hearing she would be in for a few more days. I want her to stay until she is steady enough to get to the bathroom without too much trouble. I know how she was this morning and it’s way more than I can handle. We’re not doing that BS again.

So here we are yet again. I don’t know why this all happened but I do wonder if it’s because she kept touching it. I kept telling her not to, but she couldn’t keep her hands away. Or was it something else? I just don’t know.

Before I sign off, because I am wiped out, I would like to say a big Thank you to Rosa and Mert! They brought mom dinner last night and offered to do it again on Monday. Mary also offered to come on Sunday and Bob on Monday. You guys are great! This is exactly what we need-and when she is back I will definitely take you up on your offers to help! I appreciate it so much! And need it!

Sometimes tough times tears families apart. Sometimes it brings them closer together. I am so lucky to have my family. They listen. They advise. They help me in so many ways. Tyler came over after work yesterday to just hang out for a couple of hours. The diversion was what both mom and I needed. Rick and I started texting  2 hours and 22 minutes before I left. I got a text that said 1 hour and 17 minutes and it’s beautiful here. God, that man is amazing! This morning he let me sleep in and went to mom’s to take the first shift. I get to have coffee in a leisurely manner without just putting it in a mug and running out the door. I get to shower in my own beautiful bathroom and get ready and stop along the way if I need something. It is freaking priceless.

Today marks 1 full week since mom got out of TMC (for the third time). And the first full week she has been home. The idea that we will continue this kind of schedule for any great length of time is daunting. Or impossible. You pick the term. Because I sure as hell don’t know….

Unfortunately, the first night with Lunesta was not all that I had hoped it would be. I hope that after a few days with it, it will improve. Actually, hope is not strong enough of a word. It has to improve. Some days you get up and see all the good stuff, all the possibilities, and some days (today), you have despair. Those days can take you to your knees.

All the while you are listening to the same stories and are being bossed around constantly and you fantasize about running down the street screaming. Mom is starting to remind me of Mickey with all the let’s go here and there to eat. It’s bad enough that I have NO time to go to the gym these days, lets not eat a bunch of fattening food in restaurants every day too….Today we are getting on each others last nerves. It’s bound to happen occasionally. We are just not used to being around each other this much and we clearly need a break.

Mom had an early appointment with her primary care physician. He took a look at all of her meds, and decided that since she has been having really low blood pressure, we’d get rid of both her blood pressure medication and her cholesterol medication (since her cholesterol is no longer high) . He feels that the low blood pressure could be contributing to her dizziness and unsteadiness. Sure hope it helps. When the doctor heard how the in home care was happening, he just looked at me and said this can’t go on for long. No shit, Sherlock!

Yesterday we met with a case manager/social worker, she said that I need to tell people how they can help when they want to come for a visit. It needs to be scheduled so that it is actually helpful. That if I could have mom’s friends come at times that would allow me to come late on my sleep away days or leave early on the nights I get to go home it would be far better than the middle of the day times. Although my Tuesday to Thursday runs are 60 straight hours with NO break, and so far not great sleep either (except for the one night). Unless you count sitting on the patio for 7 minutes having a cigarette, a break. Can’t say that I do. The more breaks I can get, the longer I can hang in there and keep this thing going…….That being said, if anyone would like to help out by taking an 8 a.m. to 10 or 11a.m. shift this Saturday or Monday morning or a 5 or 6 p.m. to 8 p.m. slot this Sunday, it would be great and much appreciated! Just in case I am not being clear, this is freaking hard! I miss my life.

HOLY SHIT! She slept through the night! You can’t see me, but I am doing a happy dance! Today is the first day since I started staying with mom that we slept through the night and I actually feel like a human being the next morning!  As soon as I got her some coffee, and breakfast and she was happily talking on FaceTime, I was able to go out and sweep the patio. Every time she goes in or out she complains about the leaves and crap everywhere. There are storms EVERY afternoon, it’s what happens in Tucson this time of year. Alright, already, I’ll sweep. At home, I use a leaf blower-it’s so much easier!

We were in and out of the car so many times today, my back is killing me! I’m ready to throw the wheelchair in the road and run over it. Repeatedly. It’s light, yes, but it is so hard to get her in and out of it because it’s so damn narrow and the footrests don’t get out of the way easily. I’m thinking of trying to drive her car, because it’s lower. I have been told, by close family members that I’m kind of a car snob….I will try to get past it….

All things considered, it was a good day, but mom is still quite weak, and I think she will continue that way through the end of radiation. She seems to do the best on weekends when there is no radiation or appointments, so that is encouraging.

Well, we did it. The fancy new adjustable Tempur Pedic bed is being delivered on Saturday afternoon. Mom was really trying to buy me a couple of new leather zero gravity chairs. Don’t really need them, not sure where I’d put them, but a nice thought. The Relax the Back store was followed by a brief stop at her favorite clothing store, Draper & Damon’s. She was having a crazy amount of fun spending money. Thank god we were in a hurry at this point or she would undoubtedly have gotten me some cute outfit that would have put another 10 or 20 years on me, lol!

We met with a reiki master/caregiver from Germany, to give me a little break on Fridays and Saturdays during the day. I was hoping for this week, but she is not available until next week. This could be wonderful! But I so wanted it this weekend! Monday is our 30th anniversary……We had planned to take a trip to Europe and were going to spend our anniversary on the little island in the Adriatic where we got married but decided to put it off when Jenna and Tyler decided to get married this fall. Then we thought we’d just take a little road trip to Sonoma and Napa, with maybe a stop in Tahoe, then cancer happened. Now, going out to dinner is starting to sound like the best possible option. With some luck and a lot of planning and the kindness of some of mom’s friends, hopefully…..

Mom’s friend Marty came from Florida to see her this afternoon. Marty’s dad and Mickey flew together in the 306th during the war. Marty and Mickey formed a bond as soon as they met years ago at a reunion of the battalion in Washington D.C. He found out about what was going on with mom last week and before you know it, he flew out for a visit when he had a few days off. It was very sweet. Marty took us out for a big crab feast for dinner (it was mom’s latest craving) and we had a nice visit. We don’t have a lot in common, he is far more conservative and religious than I, but he is a very nice person. The other stuff doesn’t really matter and it made my mom so happy.

It was a good day.

Well, the stupid cat finally came back in the morning and actually stuck pretty close to home today….thank god! I got to mom’s house around 9, and Steve was sitting with her having coffee. I needed that extra hour to go get the chemo drugs, and if not this morning or tomorrow morning, not real sure when I would have been able to get there. Mom tried to play some canasta with Mary and Rosemarie last night and really struggled with the rules. She seemed very frustrated with that. Poor thing….

We had a big day today, seeing the neurosurgeon, neuro oncologist, then radiation and the in-home RN. Her feet were really swollen today again and I was worried, but apparently it is par for the course. Dr. B prescribed lunesta so that she can sleep through the night with some regularity. Of course, stupid CVS didn’t get it ready before closing. God, they suck! Last night she took a Xanax and actually slept for 6 hours-but that kind of sleep has never happened when I was there….Tomorrow the bed alarm should arrive. That’s because she still sneaks out of bed without letting me or Connie know. She said she hates those things because they are so loud. Hello, THAT’S THE POINT!!!

While we were in the radiation waiting room, we talked to the wife of one of the patients we see everyday-you really start to bond with these people…..Anyway, mom was talking about getting get well cards from people and how cancer patients have a good chance of not getting well. Or as she put it, it’s not the effing flu. It’s cancer. Well, is not likely. Comfortable, maybe. Prolonging a good quality of life, possibly. Happy times, ok….but she has a bone to pick with the getting well, or speedy recovery cards and it is starting to flat-out piss her off. I explained people just want you to feel better, and ummm, there aren’t cancer cards readily available. I see her point, and maybe that’s what I’ll focus on soon. A good line of cancer cards-lol! With a healthy dose of humor-because one thing I’ve noticed is these folks have a good sense of humor and not a lot of patience for bullshit, and religious references brings a string of expletives as well (at least from MY mom). She has always been pretty anti-religious. Or as she puts it, if you are running from bombs and machine gun fire as a child, and you haven’t done anything wrong, how can you believe that there is a higher being that would let this shit happen. Good point.

Tomorrow we are going to order a tempur-pedic adjustable base bed, and she couldn’t be any more excited about it. It’s also the day I will cancel my gym membership, because I don’t see how I will ever get there again any time soon. I can see my muscle tone going to shit by the day, but hey with the amount I am smoking these days, what the hell. That, and the lack of decent sleep lately and I am now a good example of a completely unhealthy state of being.

Seriously, wtf? Mom went to bed around 10:15 and at 12:15 she was awake. I pointed out that if she just stayed in bed she might just fall asleep again. I showed her how to get to the kindle app I installed on her iPad. Just read! In bed! And please let me go back to sleep. At 4:15 she wanted to get out of bed. She didn’t want an easy cup of coffee (ie-Keurig!). She wanted a decaf,  Melitta drip POT of coffee. Alrighty then. Guess I’m up too. This woman is gonna kill me.

With the lack of sleep that occurs when I spend the night with mom, I seriously can’t listen to her stories over and over without wanting to run screaming. So, I practice active avoidance (and I smoke too much). When she starts to tell someone something I’ve heard over and over and over again, whether on the phone or in person, I just sort of drift out of the room and go do something, anything, else. Honestly, when all this started, I seriously questioned my ability to spend this much time with my mom and if I could do all that would be required of me. A friend of mine, who was in this situation with her parents, told me it’s natural to question this, but that I would surprise myself and it would all work out. She was right. You just do it. And you try to to find the fun and the humor, wherever the hell you can, because otherwise, it’s just too overwhelming and sad.

After a late lunch, Bob relieved me at 3:30 and Mary and Rosemarie came at 5 with pizza, followed by Connie at 8. A big fat THANK YOU to all four of you! I came home, and fell sound asleep for over two hours. I woke up and started to feel like myself again. I have a new person I am interviewing on Tuesday for some respite time during a couple of days a week. She is German. This could be the answer to my prayers (if I actually prayed)! She was found by some of the neighbor ladies. I have to admit I like the privacy we have on our 2 acres in the foothills, but damn, the sense of community in the Sam Hughes Neighborhood is freaking impressive! Yeah…..we don’t have that in our area.

Mom’s cat, Brandy, went out around 6 this morning. She never came back to eat her (disgusting) canned food and I could not find her before I left. Am I worried? Yes, I am. On the one hand, both of the cats are total pains, but I really like this little bitch. I say bitch with total affection. She will actively avoid you when you look for her (and I like to think she is kitty-laughing at us when we do). Mom says it’s happened before and she has just locked her out overnight, but I’m not so sure……

After a lovely evening and night at home, I got up wishing I could stay in bed another couple of hours, but rushed over to mom’s instead, to relieve Connie. Mom did not sleep a lot for Connie. Poor thing. I know that drill. The good thing is Connie gets to go home and take a nap. When you are here around the clock, you rarely get a nap of your own. For one thing, mom usually expects some food to be ready when she wakes up. We have visitors scheduled throughout the day, and hope it is exhausting enough that she might sleep well tonight.

Rick brought up a good point yesterday. He said there are 168 hours in a week. If I have Connie here watching mom for 48 hours, that still leaves me with 120, which is still 3 times as much as a full-time job. No wonder I am exhausted and have very little time to myself. We obviously will need to continue to make adjustments as the situation evolves. Building a guest house at our house is starting to seem very likely….I found the perfect spot where she would have a great view of the pool and spa. I can see it in my head. She could have a private entrance with a gentle ramp from the driveway so her friends could easily come visit her. We’ll see…..

Rick and Idgie came to spend the night and Rick and I ran to Rincon Market to get some fish from the fish Nazi-it was the first time we had been there since it was rebuilt. Ho-hum, it looks the same. Anyway, we had a nice evening and binge watched Grace and Frankie on Netflix. So glad Tyler hooked the Roku up on mom’s TV. It’s been a hit. Mom seemed much steadier on her feet and walked around quite a bit. Since she hates the Thera-putty or plast, whatever the heck it’s called, I got her to sort a pile of coins with her left hand, and that seemed to be far more interesting to her, so we’ll see how long she can stand to do it. I figure anything we can do to work on the fine motor skills will be a help, even if she does call me bossy. I’ve been called worse ; )