The New Normal
Life with mom on hospice is interesting to say the least. Mom spends most of her time in bed and sleeping. My sisters, our husbands, and our kids spend almost every waking moment at her house waiting to tend to her every need. Our Aunt Kathy has spent many nights at the house, which makes Billie much more relaxed. Our main goal right now is to make our mom comfortable. Her pain is well-managed and we love her doctor, Rene Beckham, and her nurses. She is in great hands. The hardest part of where we are is managing people’s expectations of how this process should be. Some people are upset our mom is having too many visitors, while others are upset she isn’t seeing enough people. Some people feel our mom is over-medicated, while other people worry her pain-levels are too high. My sisters and I had a hard time with these differing expectations at first, but ultimately had to conclude that as long as we are acting in our mom’s best interest and in accordance with her wishes, then we shouldn’t worry too much. It’s still hard not to worry though. We feel we are doing the best we can at any given moment, while understanding the situation is extremely fluid and fragile. In the end, we all want the same thing, which is what is best for our mom. We are all acting out of love. The visitors, cards, meals and flowers have been overwhelming. We are so thankful. I have never known a woman who has touched so many lives. She is a model human for us all. Our mom taught us that to have a good friend, you must be one. She did that gracefully and without reservation and its being repaid tenfold.
Since coming home from the hospital almost 12 days ago, mom has had good days and bad. I am happy to report that the last couple days have been fairly good. When I say “good,” its relative. Yesterday morning, we had a hard time waking our mom up and she was making a “gurgling” sound as she slept. Michelle, myself, and our Uncle Jeff panicked a bit and tried to wake her up. When I put my hand on her hand, she immediately opened her eyes in a “what the ‘f’ are you doing!” kind of way. What a relief!! The day got progressively better and ended with her being wheeled to the living room to enjoy a bit of the Super Bowl, along with dinner and a beer! We felt like our mom is back!! While those moments are short-lived (maybe 10-20 minutes), they are everything!! Today, mom looked great and sat at the kitchen table this evening to pay bills and eat some dinner. I always hate when these moments end.
My sisters and I are trying to come to terms with the idea that mom is not only on hospice care, but is actually dying. Its honestly still impossible to believe. Is this a mean joke? She looks as beautiful as ever. She is totally alert and is still laughing and cracking jokes. How can she be dying? She just drank a beer? In order to help accept our reality, us girls and our husbands have been doing weekly counseling with a chaplain from Banner Hospice. It has been beyond helpful. She gives us confidence that we can’t make a mistake at this point and that all journeys are different. I think the hardest thing about where we are right now is already missing our mom. Its difficult to see her in bed and sleeping all the time. Its also difficult to know that we won’t get to do a lot of the things we talked about doing – seeing Zero Dark Thirty, having dinner at Binkley’s, or taking Chloe to the Nutcracker. We are already mourning these missed moments and opportunities. Its not just the girls and I who are in pain, but our husbands too. I know Billy (and the other boys too) adores my mom as one of his closest friends and confidants. The love and respect they have for each other has been one of the greatest blessings in my life. I will always consider the way my mom has loved him unconditionally to be one of the greatest gifts she ever gave me. I am thankful my husband has returned that love without reservation.
At the end of the day, when people ask how my sisters and I are, I think our response is the same – “Today is a good day because our mom is still here. We will worry about the rest later.” We are taking life each moment at a time and making the most of our time. I still have baby thank you cards to write, groceries to pick up and laundry to do. Those will remain on the back burner because I won’t dare miss out on seeing my mom at the dinner table…even if its for a minute.
The moral of this story is – hold your loved ones tightly, cherish each moment and say I love you.
Thanks for letting me ramble. I feel better.
Good night,
Nicole