Surprise Visit

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.

Saying Goodbye

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.

Dreams of the Dying

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

At us

Whispering to others about

What is to come?

They’re Waiting for Her

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.

Finite Tomorrows

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.

Please! Help Me!

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.

Sassy

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.

Lean Mean Eating Machine

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.

Hitting the Proverbial Wall

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.