Yesterday my niece and nephew surprised me with a visit. They have been absolutely wonderful during this difficult time. They lost their dad in 2011 and their mom in 2016 and they keep telling me that I was there for them during those times so they are making sure they are there for me during this sorrowful time. The three of us have always been close ever since my sister and her husband adopted them from Russia. They are also close to my mom and losing her is hurting them deeply. To see them doing their best to set that aside to be there for me has moved me beyond words. I just feel so lucky and grateful to have them in my life. They are definitely one of the things that are bringing light to my life right now and pushing the encroaching darkness away.
Today I stayed home. Yesterday the nurse was talking about how my mom’s breathing would become more of a rattle when the end is near. When she said that I felt my heart twist and, at that moment, I knew I just don’t want to be there when mom passes. I think it will just destroy me. My mom and I have discussed it before and I told her that I wasn’t sure I wanted to be there and she said that that was ok. So I feel at peace with my decision. Yesterday, I had a few minutes alone with her so I sat down and spoke to her from my heart. I told her what a good mom she had been and how much I will miss her. I also told her that I am going to be ok and for her not to worry. She was unconscious when I said all this but the doctor keeps telling us that she can hear us. I feel like she heard me, I swear she squeezed my hand three times when I was finished. That has been the family “thing” three squeezes means “I Love You.”
A couple of hours later when it came time for me to leave, the levee broke. I started crying so hard I couldn’t breathe. Just short hiccupping gasps every 20 seconds or so when I started feeling oxygen deprived. I leaned over her and kissed her forehead several times and choked out how much I love her. Walking out of that building and away from her knowing I’d never see her again was the hardest thing I’ve ever done. After I got home though, something surprising happened. I felt lighter then I have in weeks. It’s like a weight on my soul had been lifted.
Flash forward to today and I heard from my sister and nephew that she’s sitting up and talking and eating and drinking again. My nephew said that she was talking to him about robbing a bank (she’s mostly delusional these days) so my nephew told her the bank was closed. Ms. Sassy’s response? “That will only make it more fun.” That is how she has been since early last week. This sense of humor we never knew she had is coming out more and more. Friday night she had us all laughing over her antics. That’s what I want to remember. That’s the final image of her that I want in my head. Sitting up in her hospital bed, holding court over her family and making us all laugh.
Today I was alone in my mom’s hospital room holding her hand and watching her sleep. I noticed movement behind her eyelids and realized that she was dreaming and I started contemplating what she might be dreaming about. And this poem came into my head and there I was holding my mom’s hand in one of my hands while writing this poem on my phone with the other one.
What do the dying dream of?
Is it the lives they’ve lived and
Are leaving behind?
Or are they going to an orientation
In the life after this one?
Is that why they start speaking again of
Loved ones long gone?
Do they begin drawing near
In the land of dreams
And then break through to
The land of life
As the departure draws closer?
What is it like for them to step back
Through the veil
Only for a brief time?
To see the changes in loved ones
Still journeying among the living.
Or have they watched through
The curtain dividing the two worlds
And have seen everything?
Maybe that’s what the dying dream of
Do they cross over and peer back
Whispering to others about
What is to come?
Today my sisters and I met with mom’s doctors and realized that we are not talking about sending her to rehab. The brutal truth, that we finally faced today is that she is ready for hospice care. She is just so weak and in pain so much of the time that’s it’s not fair for her. I mean, we’re going to include her in discussions about what she wants but now it’s a matter of us telling her that it is okay to go and that we will be fine moving forward. The spiritual aspect of this experience is sweeping away the physical. The past couple of days she has been seeing her mom, brother, and childhood friends who have all passed away. Knowing they are here and waiting to help her crossover is very comforting for us. We know she won’t make the journey to the next world alone. She’s going to leave a world where she is loved and enter different kind of world where she will have open arms and eternal love waiting for her. I’m gutted by this turn of events but I’m really trying to focus on the reunion that she is so close to having with those she has lost. I’m glad she is going to see them all again, it’s just hard knowing that in order for that to happen her family is going to have to say good-bye.
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.