Comfort Care

We had my Moms appointment yesterday and here are the results compared with her numbers from 3 weeks ago:

Forced Vital Capacity: 40% three weeks ago, down to 25%
Negative Inspiratory Force: 28% three weeks ago, down to 12%
Sniff: 32% three weeks ago, down to 22%

They were right about where we expected them to be after seeing the changes in her over the weekend. Everything we talked about with the nurse was for comfort care. I like that term. It brings to mind peace and compassion. The head nurse at the clinic told us she will never forget her first appointment with my parents. She had never sat in an initial visit with a new patient and spouse where they seemed so accepting of the diagnosis.

It is true, my Mom is not afraid to die. That does not mean she is not afraid. She is terrified of the process to die. And honestly, who wouldn't be? I cannot imagine how heavy the burden would be to know when and how one would die. When I really take the time to think about how difficult that would be my respect grows even more for the way my Mom has handled this.

Nothing in our life changes except perhaps how we will be defining our days. Good days will be days where my Mom is comfortable. She use to love getting out and doing things but it is just getting to hard. Her body is trying to conserve its limited energy for the essentials - like breathing. She enjoys sitting and listening to music and relaxing with one of us by her side. She and I had the best night simply sitting and hanging out.

Everyone tries to ask in a roundabout way what is coming, but the fear of the unknown is usually worse than the actual knowledge. As her ability to breathe decreases she will wear her BiPAP and Sip and puff machines more often because they will give her relief from feeling depleted of oxygen and will temporarily relieve her of the exertion that it takes to breathe. These are not life sustaining devices, despite what we had previously been told about the sip and puff. There will come a point where the machines will no longer be effective enough on their own to keep her from feeling air hunger. That does not mean she will feel it or ever be aware it is happening - we will not let that happen. We have in place the medications needed to relax her body and mind to eliminate any awareness of those sensations. She simply sleeps through it. As her carbon dioxide levels continue to climb her body will continue to be more sleepy and relaxed. She will slip deeper into her own deep sleep and it will be incredibly peaceful for her.

Don't get me wrong, we are by no means there! Right now she is happy and alert. We still laugh and enjoy her companionship during the day. While before it was her family restricting visitors to preserve her energy, she has now requested to not have visitors. Our lives are a fluid routine that provide her with a feeling of peace and stability. While visitors are sincerely enjoyable it is the difficulty of falling back into her familiar routine that is the problem. When the balance is interrupted it can cause us all anxiety. Even the anticipation of un-routine things, like her Drs Appointment this week, made it so she could not sleep the entire night before. We appreciate your understanding and help in maintaining her feelings of security that the consistency of her routine provides.

We also recognize it can be hard to feel cut off, even for her family when we are away. A good friend from our Ward, Amelia has been a heaven sent resource for our family. Her Dad passed away from ALS and they used an instant message system that allowed friends and loved ones to send messages that would pop up on the screen and could be read throughout the day. My Mom said she would love something like that and so we have enlisted Brian and Mark's techy talents to figure that out. When they have it all set up we will get instructions out on how to send her messages. You can still send them to my e-mail and we will read them to her. If you really want to make her day - comment on her blog. No really, she loves to see that people stopped to check on her. Even if it is just says hi. If you don’t have a Google account and it is making you choose anonymous, just sign your name.

We have a lot of things to catch up on, some events are still from Christmas. Stay tuned I have posts set to go up automatically since I am writing this post from my red rock home here in UT where I plan on playing nonstop with my boys. My Aunt, Mark, and Brian will all be with my Mom over the weekend and I will be back next Monday evening. She is in good hands...but I still wanted to wish her goodnight!

Dear Momma,

I miss you already but it feels good to be home. I forgot I still have my Christmas decorations to take down :) Oh well, they may be up until this summer because tomorrow we are chillin' in our jammies and letting the house be a wreck, even Caleb is playing hookie. Our drive was good but I didn't want to stop and by the time we hit the gorge the kids were done and really wanted to get their point across!

I brought your Phantom of the Opera CD and just before I hit insanely crazy I put it on and turned it up loud. I mean L-O-U-D. As in drowning out any possible noise that could escape the back seat. Don't worry only the front speakers were on. I sang on the top of my lungs. I looked in the review mirror after a few minutes expecting to see crying tear streaked faces, and instead I saw three wide eyed, open mouthed, quite boys. I can’t decide if their shock was from the knowledge that there is something in this world louder than them or from my awful singing! Caleb loved the main title so much and he was pretending to play an imaginary guitar and yelled I love ROCK! Don't worry we will be working on their cultural sophistication and won’t let you down.

Do you remember when we went to the Phantom? We went twice but I especially remember the time you let me wear your black dress with teal sequence. I felt so grown up. Thanks for making sure we had all sorts of experiences growing up. As Caleb would say - you ROCK!
Night Night! Love you!