When You Are Going Through Hell…

When You Are Going Through Hell…

I have always loved the Winston Churchill quote, “When you are going through Hell, keep going”. I thought of it last night when Dan told me that I was going through Hell to get my mom to Heaven. And he is right- It truly does feel hellish lately- today was pretty epic on the hell-o-meter, in fact. No matter what, though, it is all worthwhile if it will help Mom to make her transition in peace and with dignity.

Today brought many challenges and opportunities our way. In all honesty, there were mostly challenges, but I truly feel that challenges are opportunities in disguise. I received a call this morning right before leaving the house for the hospital from St. Martin’s; they were bringing Mom back to St. Martin’s today, they had the BiPap machine, and all was ready for her. They had even moved all of her things to a room right by the nurses’ station. I was thrilled and knew Mom would be, too.

When I got to the hospital, I ran into Dr. Hayes, Mom’s pulmonary physician. He told me that his main goal for Mom was comfort at this point. They were going to begin to administer a sublingual low-dose morphine to ease her anxiety about the shortness of breath that is increasing. They also will give her a medication that is a combination anti-depressant and sleep aid at night, as Mom is having nightmares and is not sleeping well. I appreciate Dr. Hayes- he is honest with me about the realities of Mom’s situation, and is working to ease her body and her mind. The palliative care staff has been outstanding all around at St. Vincent’s.

Mom seemed calmer than yesterday, more centered. She told me many times, “Neese, this is is no life. I don’t want to watch Pickers (American Pickers/History Channel) the rest of my life, lying in bed connected to machines. This is no way to live. I have prayed to God to take me.” I told her that I understood, that I would do everything I could to help her do what she wanted to do. We talked about Heaven again. I stroked her hair and asked her to make me a promise, “Momma, when you get to Heaven, will you be my angel?” She very weakly and sweetly smiled and said okay.

Mom and my brother, Mark.
Mom and my brother, Mark.

mom, mark, denise better

I met Dan in the cafeteria for a quick lunch, and then he came up with me to see Mom. We were surprised when we walked into Mom’s room to find my brother and sister-in-law from Georgia there. They helped me pack up Mom’s things for her return to St. Martin’s. As we were visiting, the resource people came in, looking glum, and called me out into the hallway. They told me that they were sorry, but they had a bomb to drop on me. St. Martin’s was not comfortable with how much Mom had to wear the BiPap mask and would no longer take her. At that moment, the representative from St. Martin’s came up to us and took my hand. She asked if I was okay, and I said no, the tears streaming down my face. Will I ever stop crying? I hardly ever cry, but now it seems to be the norm.

The representative explained that they did not want Mom to come to them when they didn’t feel prepared to deal with all of the monitoring that had to be done with the BiPap. They had only had their training the day before, and thought she only needed the BiPap at night, but Mom had progressed to needing it more throughout the day. I told her I understood, but that I worried about what we would do now. Bob and Glenda, the hospital resource people, were wonderful, telling me not to worry, that they would find another placement for Mom. I needed to focus on Mom and not worry- they would help us. Glenda went to explain the situation to Mom and my family.

I went back into Mom’s room, trying to straighten up, look positive and happy, but I didn’t do very well. Mom asked why I was crying, and I told her that I was just tired. I put my hand in her soft, wrinkled cheek and told her there was nothing to worry about. I would make sure that she was okay, I would take care of everything. My brother and his wife left to head home. Soon afterwards, a representative from Hannover Home came in to talk with me about a placement for Mom. It seems that they could possibly take Mom, but only as a Hospice patient, and only if it worked out with her insurance. If this happens, it would be my dream for Mom come true- a placement in Hospice care in a top-rated facility, ten minutes from my home. Please, please, let this work.

I left the hospital to go pick up Mom’s things at St. Martin’s- such a different way than I had planned to spend this day. On the way, Oasis Hospice called me. They told me that they worked in conjunction with Hanover Home, and wanted to ask questions about Mom’s special supplemental plan that gives her a year in a nursing home. I got a great feeling from Lisa. I told her that I would call her back when I got to a place I could pull over. How thankful I was that I brought ‘The Mom Bag’ with me, that houses all of the important papers and insurance cards I need to help Mom- I had almost left it at the hospital.

I pulled into the Publix parking lot and called Lisa. I gave her the information she needed, and we had a great discussion about hospice care. She couldn’t make me any promises, but said that we should know something in a day. So many emotions are flying through me right now…I am afraid to hope too much that this will happen, because I need it to happen for Mom so desperately.

Publix gave me the opportunity to buy a bunch of cookies and some banana bread to take to the nurses and staff that have been so kind to my mom at St. Martin’s. When I walked into the facility, I ran into the admissions director, and she seemed very uncomfortable, apologizing, but quickly wanting to get away. I am a big believer in the ‘kill ’em with kindness’ philosophy, so I thanked her and told her I brought cookies for their break room. There was no need for anger or recriminations- everything happens for a reason. If they didn’t feel comfortable with the BiPap and didn’t monitor it correctly, Mom would be right back in the hospital, something I hope she never has to go through again.

I was so glad to run into Lynn, my favorite and most compassionate care giver at St. Martin’s. She hugged me tightly, going with me to Mom’s room to pack up her things, even helping me load them into the car. Each of the caregivers, the nurses, the cleaning staff, all asked about Mom, surprised to hear that she wouldn’t be coming back, offering words of comfort. I saw the administrator who had called me that morning to say all was fine for Mom to return…he looked uncomfortable, hesitated, and then went down another hallway. This was the same person who had Mom’s things moved to another room without telling me. Hopefully they will learn some things from this experience, just as I did.

I went back to the hospital to feed Mom her dinner. She has only had soup, jello, and Ensure for about a week, not wanting anything else, not having much of an appetite. Feeding her is such an emotional thing for me, so beautiful. So many childhood memories come to me as I spoon the soup into her mouth. She is so trusting, so helpless now- and helpless is a word I never thought I would use for my mother. As she takes eat spoonful, she looks into my eyes, smiling. “Thank you for feeding me, Neese. I really appreciate it.” It is so nice to have these moments without the mask coming between us, making it so difficult for me to understand her.

I left Mom’s room and headed through the maze of hallways to the parking deck, feeling like I could walk the path blindfolded. Each time I get in the elevator, I exchange a few words with other weary caregivers, offering words of encouragement. I can tell them from a mile away- they have the same look of worry and exhaustion that I now have. We are fellow travelers in this journey. The drive home is always a blur- I just somehow seem to end up in my garage, thankful to be home.

Coops by firelight.
Coops by firelight.

Dan got home from the theater shortly after I did. I had put a couple of chicken pot pies in the oven, the height of my culinary skills right now. We sat on the sun porch, listening to the cicadas, each recounting our day. We are both under so much stress right now, just holding tight to each other and our loving home to make it through. Following our comfort food pot pie extravaganza, we enjoyed some amazing gourmet chocolate covered strawberries that my Creative Group for Bedlam Farm friend, Deborah Rahalski, sent to us today. Another act of kindness, coming when we needed it most. Chocolate is always medicinal.

Chocolaty, magical strawberries!
Chocolaty, magical strawberries!

In all of the difficult things that happened today, I choose to see the opportunities- the hope that I may have Mom into a Hospice program. I choose to remember the kindness of the nurses and staff and not the more distant administrators. Most importantly, I choose to focus on the painfully beautiful moments I am having with Mom when it is just the two of us, holding hands. I look into her still beautiful blue eyes, loving when I see them crinkle into a smile for me. I hear her words of love and gratitude, and everything else melts away. There is only love, pure and simple.

The peace of home...
The peace of home…

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