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.

They found blood clots in both lungs, so they decided to keep mom in another night at the very least. Shit shit shit! I actually cleaned that up for the faint of heart. We are awaiting the results of the ct scan of the brain. It has been decided that she will be moved to the intensive observation unit so that if she has any problems she will have a quicker response. The new room number is 851.

Needless to say she did not make it to Sushi Garden today. But yes, I brought her the shrimp and spicy cocktail sauce and a boiled egg (no idea why she needed an egg with the shrimp, but whatever). The nurse begged me to this so that she would quit talking about it already. More later-

I’m using dates exclusively for the post titles now for two reasons. To keep track of what the damn date IS, and because the fun of coming up with a creative title went out the window….

I got 8 hours of uninterrupted sleep last night and it was glorious. I don’t feel any more rested though. Maybe after a second night I will….. Hard to believe that’s a possibility! Okay, I probably shouldn’t admit this, but I tried one of mom’s sleeping pills. Purely for scientific purposes. Yeah, right! I didn’t trust myself to turn my mind off and actually sleep. Honestly as I was drifting off, all I could think of was, wow, I hate the way this pill makes me feel. It made my whole body feel numb, but not in a good way. I swear I will never do that again!

As I sit here on my beautiful patio drinking coffee and looking out at the desert and my swimming pool, I realize how much I don’t ever want to live in the city again. It’s hotter down there. You don’t get the breezes you get up here. Or the peace and quiet…. I always thought when we get old and all the freaking stairs in our house get to be too much, we’d just move in to mom’s house. That’s definitely not gonna happen! Just cooking in her kitchen is tough-not enough counter space-too closed off! I am suddenly appreciating everything and everyone in my life. God, that sounds sappy-I almost hate to even write it. I usually roll my eyes when I hear someone say that kind of thing….but maybe it was just time for me to get it.

I got to mom’s after stopping at Avella to pick up the rest of the chemo drugs. She was visiting with her former neighbor and friend, Steve. We talked about what Iris had to say last night and she, too, was relieved. After Steve left we got her ready for her big day. As I was getting her ready, I told her that her feet and legs looked puffy. It was the first time I noticed it. Anyway she had a 10:00a.m. occupational therapy appointment, followed by lunch, radiation and a Dr Schroeder appointment. He said she still couldn’t wash her hair. Oh well…. the radiation tech also noticed her puffiness and got her right in to the nurse practitioner to check it out. The worry is a blood clot, or dvt. So after the 2:30 spot with Schroeder we had a 2:50 ultrasound appointment across town. Unless we are beamed, that’s unlikely. But off we went. It took almost two hours for the whole ultrasound, which drove mom crazy, but we had to wait until the results were transmitted to CNS, and then they let us go.

Cool. We went home and I told mom to get in bed for her nap while I started dinner. She’s been excited all day about the bratwurst, sauerkraut and mashed potato dinner I had planned for her. Hell, she deserved it. Last night was cashew tofu and edamame fried rice. Not her favorite. But, hey you can’t eat that unhealthy stuff every day. While she was napping, I got a call from Dr. Sanan from CNS. They found a blood clot in her calf. He would do a direct admit, which means he sets everything up, TMC calls with a room number, we walk in and hit the call button. Bam, she’s in. And that’s how it worked. Seamlessly. But, she is in the hospital. Again. However, she is supposed to just be there overnight. Which we hope really happens, She immediately told the nurse to get started with whatever they need to do, because she was planning on being at Sushi Garden to meet her friends at noon tomorrow. She has a craving for shrimp. I’ll let you know how that goes.

The sleeping pills added an interesting twist…..She had one a little before 11 and slept soundly until a little after 2, at which time she rang the bell (thank god!). She said it was the best sleep ever and she felt great but needed to go to the restroom. Only her body was a 143 lb gumby. It did not want to cooperate at all. She tried and tried to prop herself up and get out of bed and we both started laughing so hard that it took even longer…It took us forever to get her there. When she realized it was still the middle of the night she said she wanted the second one that the doctor okayed. After taking it, she started to lie back down and then threw up. Well that was fun….She told me she thought she threw it up, but I said are you sure? What if you didn’t? I don’t want to OD you on this first night out. Seriously, bad idea. Just go back to bed. Which she did until 5:15. Another brief night, but a little better so I’m not complaining. Every night I get another half hour or so. It could be worse.

She really didn’t seem okay today. Weak, tired, other issues that no one, not even me, wants to hear about. But despite all that, we had some good conversations and nice moments, and we both felt a little better. Her mood swings are disconcerting. One moment happy and in the moment and the next sad, and living in the worst parts of the past. I feel her pain.

Her friend Gina came and spent a couple of hours with her and I ran to Target to pick up a few necessities and non-necessities. It’s Target, for god’s sake, you have to do both! Anyway, Gina also saw the changes in mom, and it made her as sad and upset as it made me. I cleaned out mom’s freezer, because, well, I’m German, and that’s the kind of crap we do when faced with adversity. I wiped down her washer and dryer because, um, see above. I made a vegetarian Chinese dinner and mom’s friend Bob joined us and then the new and exciting happened.

Connie came to spend the first night with mom. A break. Overnight! I got to spend the night in my own bed! Woohoo! There are few people I would trust more than Connie to take care of mom. She is experienced in this sort of thing and she worked for us at Dental Design for SO many years. She is probably the most loyal and trusted employee ever. And she is staying with mom!!! But, (you knew there would be a but), as I drove away, my elation at the freedom for the night was intermingled with pure guilt. Damn that emotion. As I sit here writing, I am wondering, is she okay? Will she try to get out of her bed on her own? Will she call my name or ring the bell and wonder who the hell is helping her and where the hell I am? I am having to physically refrain myself from calling or texting Connie to check up on things, because I am supposed to be catching up on my sleep once and for all.

On my drive home, I called my friend and favorite oncology nurse, Iris, and asked her about what was going on with mom. She assured me that between radiation and chemo, this is all to be expected and will indeed improve. Whew! As I told Rick about the call, he convinced me to call Gina to reassure her. I’m so glad I did. I think she needed to hear it as much as I did. And now, hopefully, some uninterrupted sleep…….

I’m a planner. An organizer. I guess that’s the biggest part of all this that is so tough to handle. How do you plan this kind of shit? Or organize it? There are so many wild cards. This biggest wild card is mom herself. Is she purposely not listening and doing the opposite of what is being asked of her? Or can she not remember it? She says more and more things that sound like Mickey, which is terrifying. What’s wrong with me? What’s happening? And more like that…..

The sleeping pills of course, were not ready yesterday. So we kept her up as late as possible. We talked about using the bell, or just calling out my name when she needs help during the night. She did not do either, on any of the three occasions in which she got up. The first time she got up, she fell. I heard it and found her on the floor of her bedroom trying to get to the rest room. She got up from the foot of her bed instead of where the walker is next to her bed. Imagine me at 1:15 a.m. trying to pick up an uncooperative person who can’t control one side of her body. So after the fall we talked about what would happen if she fell and hit her head or broke a hip. It would be straight to an assisted care facility. One would think that would be enough to make her not do it again, yet she did. Twice. WTF am I supposed to do with this?

In the morning, mom’s next door neighbor, Patricia, came over to help her shower and wash her hair. Between that and helping figure out the meds, she has been a great help! It had to feel amazing after 4 weeks of not washing her hair! After that another neighbor, Jolene, brought her some flowers and a beautiful new top. Her friend, Helga brought her lunch today and stayed for four hours, which allowed me to go home for a few hours and run some errands. I have not been home since Thursday morning and miss it more than you can imagine. Thank god for the break! Rick and Idgie came and spent the first two nights with me and Tyler came over after work to hang out with us…..I don’t know that I could have hung in there on such little sleep without those two (or three). I finally got her sleeping pills in the evening and am keeping my fingers crossed for a good night’s sleep-for both of our sakes.

Mom went to bed a little after 9 last night. Around 11:15 I heard her talking about flooding on the Amazon river over the monitor. When I went in to see what was going on, she told me about what a great sleep she’d had. I pointed out that only two hours had passed. She wasn’t done yet. I helped her to the restroom and back to bed. I then tossed and turned for a couple of hours worrying about whether I would wake up if she called or rang. At 2:40 I woke up to the sound of the ringing bell. Well, that’s cleared up-yes I will wake up. Good to know. Mom decided that she would like me to find her a warm robe so she could sit in a chair and read. She asked me if I had a good night’s sleep. Uh-no. What I had was a nap. Thanks for asking. I suggested that it really wasn’t a good idea to sit up and read in the middle of the night, that sleeping would be better for everyone concerned. No, she decided, the chair was where she would go. I asked what would happen if she wanted to go back to bed. No problem, I’ve got the bell. Lovely.

Of course, after that interruption I was up tossing and turning until nearly 5. Then another little nap until Rick woke me to ask if I heard something. Nope. I was asleep. If it wasn’t a bell or a loud thump, I’m not getting up again. Period. So, in short, I got a whopping 3 1/2 hours of sleep. When I got up she was sitting at the kitchen table and I finally told her I can’t make her do what she knows she is supposed to do. If she falls and gets hurt, it’s because she is doing something she should not. I can’t watch her 24 hours a day. Once we got to the radiation appointment, she fell asleep in her wheelchair. I wanted to cry. I sent her PCP a text asking about a prescription for a sleeping pill for her, at the suggestion of the radiation tech.

It doesn’t take a rocket scientist to figure out that nothing about this situation will work out if the first night is any indication. And I’m back to wondering what the future is going to be like. So far pretty bleak, I’d say.

D-day. This is it. I had to be there by 9:30 to start packing things up and getting mom ready to leave at the appointed time of 11:00 a.m. I needed one last training in helping her shower. I packed my bag last night since I will be there the next three nights and four days before a break where I can leave for any length of time. I am nauseous.

At 3:54 a.m. I got a phone call from HealthSouth. Mom had fallen trying to get up and use the restroom. She wasn’t hurt, but the nurse wanted to give me a heads up that she gets confused during the night and forgets that she can’t just  move around at will. Great. So then, of course, I was up worrying about mom falling during the night.

She was discharged at noon, following a few physical and occupational therapy evaluations. We went to her house and picked up her walker and took all of her belongings there. We then headed to radiation and lunch at PF Changs with Rick and Tyler and then back to the house for an appointment with the in-home nurse that will come once or twice a week. Mom still isn’t listening too well about not getting up and moving on her own, but all we can do is keep telling her and hope for the best. We can’t be attached at the hip 24/7. We set up the monitors, gave her a bell and the phone and have to hope that she will do what she needs to do to summon me for help during the night. I hope this works. It is heartbreaking.

Here goes! Another big day-mom’s last full day at HealthSouth. It started with family training day at 8:15. Four back to back therapy sessions: occupational, speech, physical and an extra occupational  and getting in and out of the car safely training. Then on to radiation! Nothing but fun over here.

Occupational therapy was a revelation. Mom does not follow basic instructions nor does she listen if she doesn’t want to do what is asked or cannot for some reason, process it. Uh-oh. It’s starting to hit me that there is a lot more going on here than I had anticipated.

Speech therapy further proved that point. First, when given a worksheet, she started in the middle, and jumped around wherever she wanted trying to skip anything too challenging. It was difficult to watch. Her mind is simply not working the way it once did. Temporary or permanent? It’s anybody’s guess. The second occupational therapy didn’t go much better, nor did physical therapy.

On my last afternoon of freedom, Rick and I went to the casino, because it just seemed like something different. Something I won’t be able to do for a while. Then we came home and had a nice quiet dinner, just the two of us, because that is unlikely to happen for quite some time either. I feel bad because mom is so looking forward to going home and that is the end of my life as I know it. I will miss it. A lot. I already have the last month…this will just kick it up a notch.

I also found out today that the second lady I had hoped to have help out at home is no longer available. I have one kind soul to take mom four nights a week. That leaves me with 3 nights, and 7 days per week until I can find someone else. If anyone knows of someone reliable please let me know, because this schedule cannot work for long. While an hour here and there might be helpful, something scheduled and consistent is what we need. Desperately.

After writing my post this morning, I got a phone call from mom’s old friend Helga Hassey. I think we talked for about a half hour. I love that woman. At the end of the call, she said, can I call you just to talk sometimes? Yes you can! Rick went off to one of his four days of work per month and left me alone in the house for a few hours. Heaven! And probably the last time I will have that for a very long time……..

We saw Dr. Miller, mom’s inpatient physician, before heading to CNS. She asked about the plan once home and how we would handle her care. I mentioned that we would hire overnight caregivers and I would do it during the day as long as she needed it. She pointed out that she would need 24/7 care indefinitely. Yikes.

I called one of the services that provides in-home care, and honestly, it is staggering. If we can do the private route, it would obviously be more affordable. Assisted living is a bargain compared to in-home care. I think we will try to do this for the first few months and see how it goes. If it does look like a permanent 24/7 situation, we will have to seriously think about how this will work long term. We may have to go in a completely different direction. In the long run it may be cheaper to put a guest house in at our house than to have care-givers help out overnight for years, and it has been pointed out, I should have at least a one day break. Mom is unhappy about losing her independence and I’m not thrilled about losing mine either. Hanging in there, but barely, and it hasn’t even really begun. It is daunting. 

Mom’s first appointment yesterday was with Dr. Schroeder, of arrogant fame…..He first told her that she could still not wash her hair or get her incision wet which did not go over well. Between the steroids she gets for the swelling in the brain and the radiation, apparently the incision will not heal as quickly as it would otherwise. She then asked him when she could drive again, to which he replied, “Oh, you are not going to drive again.” “Ever?” she asked. “No” he replied. I thought she was going to totally lose it at that. She looked so sad, so defeated. He explained to her why that is. Things change in the brain, after trauma, including surgery and radiation. Thought processes are different, you may not react the same way to data your brain is processing, which makes driving dangerous to yourself and those sharing the road with you. She totally understood, but what she basically heard is, your independence just left the building. He also showed us the MRI they did last Monday. He showed us the outline of the tumor he gutted. It was impressive. He also discussed the growth of the inoperable tumor. I asked, (stupidly, apparently) “was it significant growth?” “if it shows up, it’s significant.” Thanks for clearing that up asshole.

Her second appointment was her radiation appointment, and she announced “I got some bad news today.” Her radiation techs, Tiffany and Jeff, dealing with cancer patients all day, every day, were horrified. When she explained she couldn’t drive again, they both breathed a sigh of relief. They told her she could be like Jessica Tandy in Driving Miss Daisy, I said wait, that makes me Morgan Freeman….

Her third appointment was with Dr. Badruddojah, (I still feel like I spell his name differently every time). When she talked to Dr. B about the driving thing, he told her it was way too soon to make that kind of determination. We should wait until two weeks after the radiation and chemo treatments are over and see where we are. Rick thinks that they play good cop bad cop on purpose. I don’t really care, but the bottom line is that Dr. B gives her hope, and that’s okay by me.

We talked at length about the possibility of not driving, and what that will mean. I told her I am happy to drive her where she wants to go, and when (if?) she gets to the place where she is living alone, if she wants to go someplace there is always a taxi or uber. I love uber. It just means no more car insurance, car maintenance, looking for a parking place. Lots of people live happy lives without driving. Later on Rick and I discussed it further, and decided the best thing for her will be to make this next part of her life as similar to the pre-cancer phase as possible. I will take her to the base for water aerobics on Monday, Wednesday and Friday. I will take her to her art class on Thursdays. We can do this.

I went to her house to wash the floors after I left HealthSouth, and to try to get her pain-in-the-butt cat, Brandy to come back in. I was there for over 2 hours. The cats are officially in the house with no outside privileges, until mom gets home on Thursday. Enough already! Upon returning to HealthSouth, (and hand delivering the evening cocktail)  I met with her case manager and we scheduled a family training day for tomorrow. I will go through all of her therapies with her, they will teach me what to do and will show me how to safely get her into and out of my car.

I apologize for not writing yesterday, but aside from being super busy, my internet was not working and I did not have the time to do anything about it. I got it going again this morning and we are back online. Halleluljah!

It’s crunch time!