No real news today. Everything is as stable as it can be with my mom right now. She’s had an increase in her pain medications so she is sleeping more and when she is awake she’s pretty loopy and incoherent. I was sitting there watching her today thinking if I will ever have a regular conversation with her again. Then I started thinking about everything I meant to say to her but kept putting it off until tomorrow. I wish I hadn’t waited because, as I should have learned with my dad but obviously didn’t, as our parents grow older we only have so many tomorrows before they are gone. That may seem obvious to some but I think many of us put thoughts of losing them off to some vague future time in the distance. A future that we can almost see like a mirage and think, in some way, it’s never going to come. It’s just a shimmering image on the horizon. Until that shimmer becomes a wall of cold hard reality that you run into and bump your nose on. I don’t think I’ve bumped my nose yet but I can sense its cold stone surface looming up over me. That might be the most difficult thing with this whole experience, not knowing what is going to happen next. Or when it will happen. She might have months left and she may have days left, we simply don’t know. When I let my thoughts stray to the idea of losing her, I think about how her passing will be the hardest on me because I will, in a sense, be losing two lives. My mother’s and the life as a caregiver that I’ve known for the past 20 years. When my thoughts start going there I kick it down the road, towards that vague shimmering day. I keep telling myself you can deal with it then. There will be plenty of time for tears and grief later.
Today’s visit with mom started out overwhelmingly rough. She hadn’t had enough pain medication and was in excruciating pain. When my sister and I got there she was screaming “Please! Help me!” over and over and over again. My other sister and brother were already there and they had called the nurse but she was busy. I felt so helpless watching my mom in so much pain and being unable to do anything. My mom has always had a very high threshold for pain so I could only imagine the level of agony she was experiencing. At one point she was calling for my sister and her lifelong best friend, who are both dead. There were several moments where I wondered if the pain was going to kill her while we stood helplessly by unable to do anything to help her. It was so difficult to keep it together but my crying would have served no purpose at that moment. Thankfully the nurse finally came and gave mom the pain medications she so desperately needed. After a little while, my mom fell into a deep sleep, exhausted after the morning’s ordeal. My sisters, brother, and I left while she was sleeping just to give her the quiet she needed. I hope the doctors can figure out what her pain needs are because I don’t think she can survive another episode like that one.
You’re never too old to earn a nickname. Today my 87-year-old mom earned “Sassy.” When she is awake and a little more energized, she has been doing a wee bit of talking back to the nurses. This morning the nurse was feeding her pancakes and she declared them to be “terrible” and had them taken away. And then when the nurse was drawing blood she informed mom that she would be careful and my mom responded with “You better.” She meant it as a funny but I can see a less patient nurse taking that the wrong way. So, my sisters and I were trying to explain that to the nurses today. They seemed to be understanding, which made us feel more comfortable thinking that my mom’s comments would not be taken the wrong way. Mom is still getting tired very easily, especially after eating. The good news today was that she was only on a nasal cannula today and not on BiPAP or the face mask.
We were surprised when the social worker came in this morning to talk to us about rehab. We feel like mom is still pretty far away from being ready for that and I guess that’s how the doctor feels too. It was more of a preliminary talk, nothing set in stone yet. My mom took her usual stance of saying that she just wanted to go home. So my sisters and I talked to her about how she wouldn’t be ready to go home and after some effort, she seemed to agree with us. Let’s hope that mentality remains because she definitely needs some rehab to regain some of her strength and agility. She’s been in bed for over 4 weeks now and has lost a lot of muscle mass and strength during that time. Never a dull moment in this journey. I’ll post tomorrow’s adventure, well tomorrow.
The word of the day is, you guessed it, compartmentalizing. Before going to see my mom today, I was having one long meltdown. I had no idea how I was going to keep my emotions in check during my visit when all I could think about was how this, in all reality, was probably my last Mother’s Day with my mom. I didn’t think I could do it and found myself making that my mantra while getting ready. Not to mention the fact that I’m childless not by choice so Mother’s Day is an emotional day for me anyway. Needless to say, my emotions were at an all-time high. Driving to the hospital I had a heart-to-heart talk with myself. I told myself that my main goal was not to cry in front of my mom and upset her. I also told myself that my emotions could not control me today, that I had to control them. Enter the idea of compartmentalizing. Mentally I created a room in my brain that had concrete walls three feet thick and encased in titanium and stuffed all the emotions I had been feeling this morning and slammed the door and locked the twenty padlocks on it and headed into my mom’s room. She had been put back on BiPAP this morning because her oxygen levels dropped again. The first half hour or so my mom just kept asking me to take her home. I could feel those concrete walls cracking in my brain and I just forced myself not to think about it. I had to tell her several times that the doctors feel that she just wasn’t ready yet. And she seemed to accept my reasons only to ask me seconds later when she could go home. At one point I mentally added another foot of concrete to that room. All in all, though, I got through it without breaking and, as I walked out, I felt pretty proud of myself that I was able to control my emotions and didn’t let them control me. I did what I thought was impossible.
I went and saw my mom today in her new room at the hospital. She was sitting up in bed with only the oxygen mask on and the BiPAP was sitting off to one side. She looked much better and her voice was stronger than it had been on Wednesday. A few minutes after I arrived, the nurse came in with her breakfast. There was a plate of pancakes that had been cut up into tiny pieces and looked like it had two cups of syrup mixed in. It looked so overly sweet, but my mom didn’t seem to mind it. There was also some yogurt and a cup of thickened cranberry juice. Over the next 45 minutes, she ate more than I thought she was. My sister has been comparing her to a baby bird when eating and she definitely fit the description today. There were points when I couldn’t get the next bite to her fast enough, although she was very careful when chewing and swallowing. It was so good to see her eat again.
After she finished, we were chatting and she kept showing signs of mental confusion that threw me off balance in terms of how to respond to her. She kept asking me how “mama” was and if she was worried about my mom. Her mother died in the late 1980s, so I really wasn’t sure how to answer her. Do I tell her that her mom was dead? Do I play along with her and respond as if she was still alive. I wrestled with that dilemma for a few seconds when I decided that the best option was to play along. So I simply told her that “mama” was worried about her and hoped that she was getting better. She looked at me for a moment in a very confused way and I had to wonder if she thought I was the one who was having a mental lapse. Finally, she just nodded and moved onto the next subject. I had never dealt with mental lapses in my mom before and it was very surreal. I just hope I made the right choice to play along with her at that moment. A very short time later she began to doze off so I decided to leave. She asked me if I was coming back tonight and I told her I would see her tomorrow and she asked if she was going with me and I had to explain to her that she needed to stay in the hospital. She asked me why and I told her that the doctors were still very concerned about her breathing and swallowing and if something went wrong that she was in the best place to get a quick response. She weighed that response for a minute and then nodded and we said goodbye to each other. I’ll update again tomorrow and relay what new adventures awaited me on this journey.
I took a personal day today and didn’t go to the hospital to see my mom. I guess when my sisters and brother got there she had been moved and was very disoriented and confused and calling me. The nurse told them that she had been doing that for a while. When my sister told me that I felt so horrible and guilty. I felt like I should have been there and felt so selfish for wanting a day of normality. And yet, I needed it. Yesterday afternoon it was like I ran into a solid brick wall emotionally and physically. I was doing ok until mid-afternoon when my brain just kind of said it was done. I couldn’t think straight at all and at first, it worried me. Then I realized that all the stress of my mom’s illness had finally caught up with me and I needed to take time away from it all. I’m going back to see her tomorrow and I’ll share more of an update with you all then.
Mom continues to make steady progress although she did have an episode where her oxygen levels plummeted and she had to go back on BiPAP for a while. They are no longer talking about a feeding tube, for now, and she is enjoying some real food again. This afternoon she had pureed macaroni and cheese and a thickened orange drink that was fortified with protein powder and nutrients, which she said was very good. We can see her getting stronger now that she is eating food again. However, whenever the topic of her recovery comes up her forehead crinkles up and she gets an overwhelmed look on her face. She knows how long it is going to take and is very frustrated by how hard everything is for her. The most important of those things being her breathing. The consensus among my siblings and me, for the moment, is that we will fight for her recovery as long as she wants to. It just feels like we are walking down this road that runs along a cliff and that at any moment the life that we all know will just fall away from us into some abyss.
The other day when I was visiting my mom in the hospital, she had BiPAP on so it was very hard to understand what she was saying. That came back to haunt me today. During my visit today, she started talking about that and how I couldn’t figure out the word “eat” after figuring out the letters “e” and “a.” She went through the whole scenario and then declared me to be a “dumbass.” I knew I heard her correctly but it took me a second to fully process it.
“Did you just call me a dumbass?” I asked her.
She responded by emphatically nodding in the affirmative and then gave me the biggest grin I’ve seen on her face in weeks. It just made me laugh out loud. Then she called my older sister over to her bedside and told her she was in “deep shit” and once again grinned. She was totally playing with us and it was glorious to see that side of her personality again. Even in her weakened state, struggling to breathe, she still has her sense of humor. That is what I admire most about her, her ability to laugh even in the darkest times of her life. It has gotten her through so much pain and heartache and I am hoping it gets her through this as well. But from now on, I am officially a “dumbass.”
Today was another roller coaster of a day. When I walked into my mom’s room she was pretty much awake and breathing on her own. As I walked across her room to put my stuff down I watched her eyes track me across the entire room and then when I squeezed her hand and she squeezed it back I almost burst into tears of relief. She was responsive to questions and doing much better. She was able to breathe on her own for over 5 hours today before she got too tired and they turned the ventilator back up and bumped up the sedation. My sisters and I were all feeling so much more hopeful. Then we learned that they had discovered signs that she was bleeding internally so they are doing a GI scope as we speak to try to find out where it’s coming from. Hopefully she will not need surgery for it. So up and down we go but hopefully we will start having more days of upward recovery in the near future.
I just wanted to offer a brief update on my mom. She is still in the hospital after 9 days. She’s gotten better but also had her setbacks which have delayed her coming home. One delay was the fault of the hospital. One of the first antibiotics they gave her for her pneumonia negatively interacted with her blood thinner and she ended up having a blood vessel leak blood and fluid into her right knee which caused tremendous pain and swelling. So, it’s taken a few days for her to be able to walk on that leg again. Today she began having trouble breathing again so the increased her oxygen to 25 liters, at home she has been on 2 liters. So now they have to wait for her to be able to breathe on a lower amount again. I don’t know if I’m explaining this correctly or not. I really don’t understand the whole liters of oxygen thing. Everyone at the hospital wants her to go to rehab and then go home but she is determined to come home. She feels like she will recover faster here and she can have nurses and physical therapists come to the house. But I don’t want to get too ahead of the situation, I don’t even know when they are going to release her with the setback in her breathing today. Please, keep the good thoughts and prayers coming.