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 ; )

My first night back, I remembered two things. It is next to impossible to get a good nights sleep here and mom’s cat, Schnapps is a major pain in the butt. First off, the beast looks like a damn panther, weighing in at just about 20lbs. My dog is terrified of him-probably wondering why there is a wild animal inside the house that could potentially kill and eat her. If he pushes his way in to the bedroom you are trying to sleep in, he. will. not. leave. you. alone. My mom lives in a neat old house built in the 30’s and the one door that won’t close all the way, is of course, my old bedroom, which just also happens to be my new (part-time) bedroom. When he did bully his way in, he left a nice big tar stain on the sheet which I immediately cleaned up. When I picked him up to remove him, he proceeded to do the same thing on my arm-I threw up a little in my mouth. Then the beast was outside my door trying noisily to get back in after I barricaded the door. Shoot me.

I decided not to give mom a sleeping pill last night. It doesn’t make her sleep any more soundly and when she does get up (just as often as without the pill), she is downright dangerous. Her body is too limp and uncontrollable, I’d rather have her have her wits about her and be a little steadier on her feet. If it won’t knock her out for the night, what is the point? Patricia agreed with my theory and I feel better about it.

We got so much accomplished today, and had a good time doing so. We picked up a Keurig coffeemaker because we both have different opinions regarding a good cup of coffee. As far as I’m concerned, no caffeine, and it’s not really coffee. It’s just hot brown water. I rest my case. I can’t argue mom’s case, because she is obviously wrong-lol! She seems happy and healthy…..I now have my own pass to the base and can take care of all kinds of things without my mom being present, however, I have no idea how that will happen….If I’m awake, we’re together……..at least 90% of the time. I am SO not complaining! We have spent more time together in the last month than we have in the last year……. So glad we have this time! Rick and I got to go out for a really nice dinner at Caffe Torino, after a nice swim at home. Thank you Bob for the break before Connie came for the night!  I so appreciate our alone time….I miss my husband! Tomorrow, several people want to visit mom, and Rick is staying over for movie night and a nice dinner. Which means we will like it, and mom will most likely think something is missing…..lol. But that’s okay.

She’s home! Mom called this morning to tell me she would have to spend another night in the hospital, so I mentally planned my day. They felt the anticoagulant level in her blood was not quite high enough. I went to her house to pick up some fresh pajamas and the new transport wheelchair we ordered from Amazon. She called me again just before I left her house to tell me they changed her mind and she was going home right after her radiation appointment.

She was very happy to head home. She learned how to give herself injections in the stomach and she was ready. We had fallen in to a good routine that worked well before her return to the hospital and we needed to get our stride back. Rick had planned to have houseguests on both Tuesday and Wednesday since I would have been at mom’s and it’s just too quiet in the house. So, the two nights I was there we had company. Good to see the guys, but I have to admit, I needed a little more down time than I got. Oh well. I’d say next time, but that would mean she is back in the hospital, and I definitely don’t want that, so never mind…..

So now we hope the anticoagulants do their magic, and the bloodclots melt away, and we can get back to just worrying about the cancer instead of all the other crap we have had to worry about lately. She has to take a staggering amount of medication and now the shots too. Her discharging nurse impressed upon her the need to follow the rules and not take any nocturnal journeys to the bathroom on her own. The anticoagulants would mean a lot of blood for a little cut…….Hopefully she will listen this time.

I seriously need someone to help me out on Fridays from 8 a.m. to 8 p.m., if anyone knows of a trustworthy caregiver, please let me know! That little break will make all the difference in the world for my sanity, I am sure. If you know of someone, please message me here or email me.

Not a whole lot of news today. Mom is still in the hospital, dealing with the same stuff she was dealing with yesterday. Hopefully she will be out tomorrow, but a heads up is not what this hospital is known for.

She went to her radiation appointment in an ambulance today with two attendants, a nurse, and me. It would have been more fun with sirens wailing, screaming through intersections, but it was just a quiet ride. Ho-hum.

I brought her her first Sonoran hotdog for lunch today and she loved it. Who wouldn’t? If you don’t know what it is, google it, read it and weep. They are only served here, as far as I know, and they are spectacular. If you live in Tucson and haven’t tried one, you have no excuse-just do it! More tomorrow…..

Well, this has been a pretty shitty day. It feels like whatever can go wrong, does go wrong. Mom is in room 851, the Intensive Observation Unit with deep vein thrombosis and pulmonary embolisms. The only good thing is that she is as upbeat as ever. Which is no surprise whatsoever. Of course, those of us who know and love her are at wit’s end with worry. I find it is much easier to be upbeat when I am with her than when I am not. On the other hand, I slept like shit last night and feel like the walking dead again.

Mom was telling me how everything went last night after I left her. It was pretty hilarious. I left her around 10, I think. By midnight nothing had been done so she asked that the doctor be sent to her room. She asked if they were planning on giving her the anticoagulants any time soon or if they were just waiting for her to throw a clot and drop dead. Ten minutes later she had an IV of Heparin. Well played, mom. Well played. We talked about how Monday was a long day, but that we had a lot of fun together and laughed a lot. She enjoyed her shrimp lunch. This woman is an inspiration!

Apparently the anticoagulants caused a very small bleed in her brain, so they shut off the IV for an hour before resuming it. Sure as hell hope these folks know what they are doing……. My confidence in this place is not so great at this point.

As I was sitting in my bedroom with my laptop, writing, I realized my phone battery was way low, so I plugged it in. Shortly after that the doorbell rang and a friend of ours, who was spending the night arrived. I ran down to answer it and walked out to the patio with him to where Rick was. I sat with them for about an hour and went upstairs to go to sleep. I checked my phone and the little icon showed the number 10. That means 5 calls, 5 messages. All, I could think was that something horrible had happened. I listened to the oldest first and worked my way to the newest. Four of the five calls were from my mom. Each one angrier than the last. It turns out that not only did TMC not know she was on chemotherapy, none of her doctors, the neurosurgeon (or neuro-nazi as many refer to him), nor her neuro-oncologist noticed that the Temodar was not on the medication list. I remember mom and I talking about the drug to the nurse at check-in. Mom was totally pissed at me for not answering my phone. It felt like  all the time I had spent with her and everything I had done, meant nothing. I let her down, by not answering my phone for 36 damn minutes.

I called the nurse before I called mom, because frankly I was scared to talk to her. I wanted to hear the bottom line. She explained what happened, and when I asked her about mom going home tomorrow, she said she didn’t see that happening with everything that was going on, and that she was not stable enough to leave the hospital as far as she could tell. It feels like I have used those exact words before…..It turns out Patricia let Bob in and gave him the drugs and he ran them over. The nurse put me through to mom who explained that she got her drugs and then proceeded to tell me how upset she was with me for not answering the phone. Like I didn’t hear it the previous four times on voicemail. Ouch.

So now we wait. And hope.