Mom died peacefully at 12:30 in the morning. Tyler and I were with her, talking to her and holding her hand. It was a long day. We had been there just under 12 hours, with a short lunch break. We decided to go home and call it a day, thinking if she wanted us there when she decided to go, she had ample opportunity. Maybe she was one of the people who wanted to go alone…we’ve done some reading on the topic. We went home and had a drink, and a couple of cigarettes, and a quick bite to eat. Tyler and I got to talking about the fact that it was the 28th, and we both had a feeling about the symmetry or poetry of the date being exactly one month before her 82nd birthday. A little after 11 we decided to go back and sit with her until midnight just in case she changed her mind and wanted us there. We started noticing a change in her breathing and started to talk to her more and more and as her breathing changed she opened her eyes wide and looked at us, which she had not done all day. We continued to tell her how much we love her and what a good mom and Oma she has been and how she could go peacefully and know we would all be okay but we would miss her. I’ve never seen anyone die before and I will never forget the look in her eyes, but I am so glad we were there for her so she did not have to be alone.

We stayed with her for a little while longer, and picked up her things and went home before the hospice nurse and the mortuary people came. Neither one of us could watch her being taken away on a gurney for her last ride. We came back to our house and talked a while longer and Tyler spent the night. I can’t believe it’s over. I know what her life had become was not what she wanted. I thought there would be a greater feeling of relief than there is. There is a certain degree of relief, but much more of sadness and a kind of sick empty feeling. There wasn’t a lot of my mom left, but it was something. I can’t believe that 4 months ago she was in Europe on vacation and now she is gone…..

Thank you to all the wonderful friends who have made this journey a little less lonely for us and for showing my mom the love you felt for her. We appreciate it more than you will ever know.

Today’s post is probably next to the worst one I will have to write. I met with hospice this morning at 8:30. We discussed her current ups and downs before entering her room, where she was sleeping soundly, albeit noisily. Carrie, the hospice nurse was able to change her bandage and she never woke up. This is very unusual.

Upon close observation, we found that the skin on her legs and feet had become mottled. This had not been the case yesterday. Her breathing has become labored, congested and extremely loud.

Tyler met us here before his 10 a.m. appointment. It was very difficult for him to leave but he was able to cancel his work related trip to Phoenix and come back to Handmaker. Sara, the social worker from hospice told us that our natural inclination is to try to stay here and be with her as she passes, but that her instinct is to protect us from that. So, I am trying to talk myself into walking out the door. But I can’t seem to…..

Monday was odd after the last three days….when I got there Nellie and Helga were both there. Mom was very quiet but woke up more as time went on. After Nelli and Helga left we had some one on one time before Gina came. Mom was even more awake by then. It was the most lively day since Thursday. After awhile I left Gina and mom alone to go to her house and try to figure out what was going on with her microwave, which mysteriously stopped working along with some of the outlets in the kitchen. Crap! I don’t have the time or energy for this kind of stuff right now! We are counting on Tyler to come by at lunch to check on the cats-if he can’t heat his lunch, it’s a problem! Rick is planning to check it out tomorrow and see if it’s something simple or if we need an electrician.

I have no idea what made me think I could go over and figure it out…… When I got back, mom was moaning but awake- so different again from earlier in the day. This up and down stuff is taking me to my knees. I can only imagine what it is like for my mom.

Tuesday morning found her very quiet again. Bob came and we visited for a while. It’s so much easier to be there with someone else than alone. It just isn’t that much fun watching someone sleep or trying to carry on a conversation when all you get is a basic yes or no or sometimes much less. I did finally get her to eat some pasta fagioli soup that I made yesterday and put in a food processor to make it smoother and easier for her to eat. I stayed until around 3 then came back after 5, which gave me enough time to go home and get dinner together so that we could eat when we got back. She was talking a little again and eating very little. We were home again a little before 7. I have my alarm set to get up early to meet the hospice nurse and social worker again. They want to meet again to discuss her condition, which is what exactly?

I heard from the newlyweds late Friday night. They had a wonderful honeymoon and sounded very happy, despite the fact that they were delayed by 4 hours, flew through storms and got stuck in Dallas overnight because of the bad weather. All hotels around the airport were sold out….so they got to spend the night in the airport and fly to San Antonio through more storms, first thing in the morning to get their truck.

I saw mom in the early afternoon (after doing yard work at my house), and again later, leaving around 6:45. She hadn’t eaten much earlier, but I brought her some spinach empanadas and lentil soup from Patricia and she ate quite a bit and seemed to enjoy it. Food isn’t quite as big in her life as it once was. I’d be happy to go and get her anything at this point but I would say the days of cravings are long gone.

When I got to Handmaker on Sunday, Eduardo told me she’s not having a good day.  It was obvious, and as much as we would all like to believe things are fine, they’re just not, and saying they are, or pretending that’s the case, just won’t make it so. Sorry for being the voice of reason. I brought mom another empanada and some more soup, and she looked pained as she ate it, and then she started choking. I mean really choking where I had to yank her up and pound on her back as she was turning purple. It was terrifying. I finally got her to cough up some, but, yikes. I will never feed her again without another person in the room. Ever. I was shaking for about a half hour…..And yes I hit the call button, they’re just not that fast. I should have run into the hall and called for someone but it never crossed my mind.

A few of her friends came by to visit and Stan did manage to get some potato salad in her. But the swallowing thing isn’t working as well as it once did. She is still grimacing quite a bit and it does look like pain but who the hell knows. I left after she dozed off and came by a little later. She was in a different position with a different gown, but asleep. There was no waking her and she was making all kinds of noises both in breathing, mumbling  and moaning.

Her disease really has progressed quickly but it sure doesn’t feel like time has passed as quickly. It feels like the longest three months of my life. One of her friends mentioned yesterday that she will never live in a nursing home while she was visiting my mom in a…wait for it…nursing home. Really? I suggest you choose your illness very carefully, because sometimes there is no better alternative. I would love for mom to be in the guest room in my house, and if it weren’t for all the freaking stairs, she would be.

Have you ever felt that you were just kind of sleep-walking through your life? Haha me neither…..but these last few months, absolutely. I don’t feel like myself, I’m over-reacting when I shouldn’t be. I’m no fun anymore.

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.