Three weeks ago I wrote about visiting the oncologist with my Mom and learning that she only had a few months left to live. It was an emotional trip and for the first time since she was diagnosed we were faced with the fact that she was really and truly going to be leaving us soon. When I got home, I planned a trip to visit with my husband and the kids during spring break at the end of March, but things took a turn for the worse and my Mom ended up in the palliative unit of the hospital on March 2nd. We got word from the doctors that we should come visit right away. What a day that was. After we rearranged our travel plans I therapeutically sorted my kid's entire box of Lego into separate color bins just to cope. Gray. Black. Blue. Red. You know which box was the fullest? Gray. And there were barely any purple legos. That needs to change.
The last week and a half has been so hard and amazing at the same time. Last week all kinds of family and friends were dropping in to see my Mom. I’m pretty sure almost everyone who loves her was here and there have been so many wonderful visits with lots of hugs and laughter. We’ve got an amazing family and they all care about my Mom so much. It’s especially sweet to see her with my kids. I really wanted her to have some good quality time with them and even though they are a bundle of energy and flitting about, I think she had some good moments with them.
Last Saturday she was moved from Palliative Care at the hospital to the Hospice facility and I can’t tell you enough how amazing it is here. It’s newly renovated with an amazing staff of nurses who are taking such good care of her. Her pain is a growing beast and they have been doing what they can to stay on top of it. Her fentanyl has been increased to 100 mgs and she was taken off the Oxycodone pills and is now getting a 4 mg shot of Dilaudid every few hours. On Monday she will be put on a pain medication pump that automatically delivers a shot every few hours and she can press a button to get an extra shot when she needs it. They will monitor the usage and increase it as necessary.
Dilaudid is amazing. She is feeling way more relaxed and today has been her best day yet. Tuesday night, the phone rang at my Dad’s house at 12:30 am, just two hours after I had gone to bed and I woke up in a panic, my heart pounding and ran down to where my Dad was on the phone. She was calling to tell us she had just gotten another shot of Dilaudid and she was feeling pretty good. Oh my goodness! It was a midnight call to tell us she was feeling fine. I guess I'd rather get that over the alternative, but I really hope it doesn't happen again. My system can’t handle the shock of waking up to the phone ringing in the middle of the night too many times.
Chris and the kids went home on Monday and I stayed behind to take care of things and make sure my Mom is comfortable. I miss my family, but they understand that this is where I need to be right now. I told Milo, my oldest son, that I needed to stay here with Grandma, he said, "Mom, if you were sick like that, I'd stay too." He is such a great kid, to understand so well what I am going through. My husband is nothing less than a super star for carrying the weight of our family while I do this.
Before her pain medication was changed, the greatest challenge for me was dealing with any disorientation and confusion that she had. It's disconcerting to see her searching for something that isn't there, or arranging and rearranging her bed sheets over and over again. She has experienced some paranoia and hallucinations and dealing with her irrational thoughts has been difficult, but it hasn't seemed to last for very long and I think the new pain medication is totally helping with that. Today she’s been busy, chatty and very happy, asking for her jewelry and dropping in to visit my Dad at home after an appointment at the hospital. I am so grateful for her pain being under control and for the lucidity that she is having today.
Taking care of myself has been important too. I got my bangs trimmed yesterday and I found a wonderful cafe just down the street with the best panini sandwiches. Perhaps it tasted better in contrast to the reality I am facing, but whatever the reason, I really enjoyed that quiet hour alone. I also saw a friend yesterday and kissed her beautiful kids and I am making sure I am getting enough sleep and down time.
The very hardest part of all of this is, of course, the goodbyes. Each person who has visited has done it just a little differently and the best way they know how. For some, my Mom has been comforting and reassuring. For others, like my husband, he couldn't say goodbye and instead said, "Arrivederci” which is Italian for "Until we meet again." It's almost unbearable to think that you will not see or speak to someone again, and so sometimes, you just don't. My kids said goodbye just the same way they did every other day and I didn’t emphasize to them that it was the last one. I know the significance though, and my heart breaks at the thought that they won't get to spend time with her again. I was happy that just before we left, the kids sat quietly in chairs next to her bed and talked with her more calmly than they had all week. Maybe they did know, in their own way, after all. In the car, after we left, Chris said, “So, is that it?” and for him, it was.
As for me, I've been saying goodbye to her twice every day for ten days now, so there have been at least twenty goodbyes from me. Thirty by the time I am supposed to return home. As the days go on I am aware that each goodbye may be the last but I'm just trying to stay in the moment and enjoy this time with her. I am asking her questions about her life, making sure I know what her favorite things are and indulging her requests to brush and braid my hair. I am so happy to listen to her memories and stories and to hear about her life. Things have come up that I have never heard before, like her Granny Boksan’s cow named Bossy. There is also emotional work to do when you are faced with this kind of time and I am so grateful to be a part of her journey. She has been focusing on forgiveness and letting go of emotions that weigh her down. I know her so much better because of these special conversations.
No one can tell us what the next few weeks hold. I know that she is getting the care she needs in Hospice and that she is feeling as good as she can under the circumstances. If she has more days like today, she may still be with us for a while. She seems to have a lot of fight left in her yet and the comfort that the pain medication is finally giving her is so welcome. Whatever is in store for us, we are enjoying these days together, and that is what counts.