Rick and I decided to get up and take the dog for a walk on the river trail before going to visit mom in the morning. It was far too beautiful this morning not to get out…..Idgie got to come along and cuddle with mom a little. I hate to admit this but her cat was calmer than my dog when visiting. Idgie clearly wanted more attention than mom had to give, but sat tight until we were kicked out so the bedding could be changed. We then headed over to mom’s house to do a little yard work. It’s good exercise and I have to admit I feel like an idiot hiring someone to do what we are perfectly capable of doing. There’s something kind of relaxing in doing yard work anyway…..

Mom was quieter than last night and she didn’t eat much today, but at this point, we’ve learned not to be too alarmed with little changes since we know they happen every day. My friend, Vivian, said she was going to visit her this afternoon. She went there several times while we were gone, but I never thought she would go once we were back….she’s pretty amazing!

We planned to meet some friends for a fish fry and some good music this evening, but stopped by to visit with mom before we headed out. She was still not talking much or very interested in eating or drinking. She never has the TV on and I asked her what she thinks about when she is just lying there when she doesn’t have company. She said, not a hell of a lot. I bet…..She was very sweet though, and Rick and I were both in tears when we walked out.

I don’t know how everyone who spent a lot of time at Handmaker, while I was gone, felt. But, it is seriously painful to sit there with mom for any length of time these days, with the limited speech and  watching her sleep or stare off into space. Yet, when I’m not there, I feel guilty. It takes so much energy to just get there a few times every day.

Wednesday was harder than usual. It was a beautiful cool day (by Arizona standards), I just wanted to go home after my morning visit and macchiato delivery. I finally did my trip laundry and made a crockpot of soup. My cousin Steffie, let me know that my mom’s younger sister died overnight. She was 77 and as far as I know, healthy, other than just getting over the flu. She wasn’t terribly close to her, but I still worried it might upset her, so I dragged my feet as long as I could. She was surprised, but not terribly upset, which makes sense these days. She may not even be able to process the information. I just couldn’t tell.

Thursday morning was pretty quiet, some dozing, not any talking. Bob was there when I got there and he stayed for my meeting with the hospice fill-in crew, both social worker and nurse. Since mom never complains of pain, but her facial expressions often indicate there might be some, we will start on a low dose of morphine starting tomorrow and see how she does with that. It can be adjusted up or down on dosage and frequency.

In the afternoon when I got there, mom was lying flat on her back (which is rare) and when I walked in and asked her what was going on, she answered, “I just need some peace and quiet.” I said I could leave if she needed some rest, and she said clear as a bell, “no, stay.” I figured Rosa was probably there and she told me Gina was too. That’s pretty good! Tyler joined us at 5:30, and Patricia a little while later. I fed her, but she only ate about 3 spoonfuls and said she was full. She still likes the idea of food, but her appetite is way down. Today she was able to chew again. So, you still never know what to expect, but every now and then, you get a little bit of time where she kind of seems like mom again. I’ll take that. It’s just been a strange time. I’ve gotten used to not being able to talk to my mom on the phone everyday, like we used to, but this week I can’t talk to Jenna either since she is on her honeymoon. I miss my girls.

Well, that really happened. My daughter married the man of her dreams on Friday evening in a beautiful ceremony in Texas Hill Country. Jenna was a beautiful bride, and her husband, was a handsome groom. They will undoubtedly create some beautiful children. It was a stressful couple of days leading up to the ceremony, but it was a great night with incredible friends and family. They were surrounded by people who love them, and the reception was perfect! All the planning and work was worth it…..I can’t think of a thing that we missed.

Mom was well attended to by a great group of friends while we were gone. And we thank you all from the bottom of our hearts! And a huge shout out to Penny Leinfest who orchestrated the week. My cousin, Steffie flew to Tucson to spend a couple of days with mom after the wedding. She said she couldn’t come this far and not come see her. Mom was able to see a lot of photos and the video of the ceremony.

When I got there on Monday morning, she was more alert and talkative than she was when we left but her vocabulary seemed more limited. She is eating and drinking quite a bit less these days though, which doesn’t seem to be a good thing. I’m worried about how the skin on the underside of her arm looks…. I don’t think she is being turned as often as she should be and I wonder why I have to keep bringing it up. It’s not their first rodeo. They should know the drill. Mom seemed to spend a lot of time trying to clear her throat and received atropine drops for it after I mentioned it to the nurse.

It felt so strange to be gone for a whole week and not be consumed by mom and her condition nearly every waking moment. But I can’t lie, it was a wonderful break. I spoke to the hospice nurse today, who said mom’s blood pressure is lower and her heart rate is higher. Today she was even less talkative and ate and drank less.

I apologize that I haven’t written in a week, but with the wedding and then coming home and finding out my website had hacking attempts made on it, and was disabled, I just couldn’t. That, and I’m not feeling like writing as much right now.

I was just sitting here in Abilene, having my coffee and scrolling through my pictures on my phone and came across these two photos that my cousin Steffie sent shortly before mom came back from Germany. Mom had just gotten this great new haircut and she looked so happy. That’s how I want to think of mom these next few days.

As we were driving to Texas yesterday, I received a call from the hospice social worker who told me that she, the nurse, and doctor were concerned that they could not wake her. I told her that it happens several times daily and if they try again in an hour it would most likely be totally different. As usual, the folks at Handmaker had not bathed mom in 5 days. Seriously, they charge $274 per day and don’t just do that without being told??? Great.

I saw this on Pinterest today (thanks Germaine). This pretty much sums up the last few months for me and my blog. It has been cathartic. I won’t write much in the next week because I plan to limit the bleeding as much as humanly possible during the celebration of Jenna’s wedding and the days leading up to it.

Mary came to visit mom this morning and reported that she ate and was quite communicative. Helga came a little later and could not wake her. When we came she was awake again and very sweet. It truly is a crapshoot timing wise. Here is my prediction-I think mom will continue like this for a time, with the wakeful times steadily decreasing in length until she slips in to a coma. It may be another few weeks…..

I want to thank you in advance for keeping my mom company in our absence. I hope with every ounce of my being that she is still in room 124B in the Bregman neighborhood when we return next Sunday night.

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.