I am hoping that this is the Middle. The middle would mean that I’m half way through something and that seems very appealing right now. Half way through a week from hell, check. Half way through too many decisions, check. Half way through the difficult stuff and ready for some relief, double check. If you read the last post, you know I’m talking about my mother again. Sorry, I guess that’s where I live right now. I’ll try and be a bit more positive here though.
Yesterday we met with a palliative care doctor, Dr. J, to discuss my mom’s future. I went to the meeting (as I told her later) feeling cynical and fairly frustrated, having done this kind of thing several times before and figuring that I knew all she could/would/might say. Wrong! Wrong! This woman is a kick ass, straight to the point, no sugar coating or soft sell professional who knows her subject. She recently left her post as Chief of Geriatric Care at UCSF (Univ. Calif. at San Francisco), one of the premier programs in the nation. She fell in love with this beautiful place where we live (I’d move here,—> if I didn’t live her already!) and decided to finish out her prestigious career here. Lucky us. Lucky mom. Her suggestions were different than everything we’ve heard until now. Up until this point, the goal has been keeping mom ambulatory and independent, often at the expense of good pain management, because the pain meds caused more falls and difficulty with walking, etc. Dr. J explained to us that another option for us all is that mom might not be ambulatory anymore, but her pain could be managed. (ok, I’m getting to the positive, promise.)
This new approach would mean that mom is not up and moving around. However, since she broke her arm, she can’t use her walker and a wheel chair was going to be very hard. We all dreaded the likelihood of more falls and more uncertainty. Instead, they are ordering a “cardiac chair” for her to sit in. It reclines to a position that she actually likes. It relieves the stress on her back and bottom. However, she can’t get out of it. That means she can’t just stand up spontaneously and then fall. We have ordered one with wheels, so that mom can be brought down to the front desk, as she likes, when she wants. She will not be treated any further, medically. No antibiotics, no IV fluids, nothing medical. She will however, have complete management of the pain that she feels constantly, from falls too numerous to keep track of anymore. She will be able to relax and not feel pressure to “participate” or do things that she doesn’t really like to do, honestly. We’ve all just been pushing her to be involved and (pretend to) be happy. The new approach involves allowing her to just rest, just be.
So the shocking (and I don’t use that word lightly) outcome of her care this week, a “side effect” of the pain medication, has been that meds bring my mom back from her silent, locked up world. The meds seem to help a “system in the brain” to work properly again, and she can speak and cognitively process things around her. Mom has been totally lucid for 36 hours now. She talks in absolutely clear sentences of substance and length. She says things like : “why the hell are you doing that?” or “I refuse to attend this meeting (palliative care), I’d like you all to leave my room now.” or “You don’t have to come to visit so much honey; you look tired.” Or, in the grand-daddy of all lucid comments (in response to my “this must be very frustrating Mom,” as I fed her) my mother said to me: “I hardly think that the word frustrating is the appropriate term for how I feel about my condition.” Knock me to the floor! Seriously.
(<—Mom in a pig pile with my sister and 4 of her grandchildren)
Today she had a 10+ minute phone conversation with Middle Man about college, his exams and school life. All of her comments and responses were appropriate and clear. It was surreal. My eyes kept tearing up, just listening to an every day conversation that was once normal, but is now extraordinary. A lot of what has been locked up in there has made her angry, left her feeling helpless, and she can tell us now. It was hard to hear her tell us: “Dawn, I need my glasses (that had been missing for weeks)! I was in that strange place (hospital) for three days, alone, and unable to see anything! All those forms they asked me to look at, I couldn’t see a thing.” Ouch. While I wanted to argue, that she wasn’t alone all the time, I was there a LOT… That wasn’t the point. We all knew it was inconvenient that her glasses were missing, but it was down further on my list of things to worry about. Mom told me where it should be on the list, that was the point.
She was also able to clearly and strongly express her feeling about Hospice Care and what her next few days, weeks or months might look like. Having spent the last day and a half dealing with these decisions on my own, it was such a relief to have Mom tell me what she wants or doesn’t want. Having all those options laid out for me along with my mom’s independent and invested perspective, I left her today feeling such relief. Listening to her share her thoughts and have a normal conversation were amazing gifts, in this otherwise awful five days. She was so clear, so herself, that at one point I looked at her and said: “Hell mom, you’re so verbal and with it, I’m waiting to have an argument with you.” “Ok,” she said and then grinned from ear to ear.
I am leaving for a 3 day writer’s conference tomorrow. I’ll stay with my aunt, who gives unconditional love and takes care of me like I’m a baby. Favorite foods, comfort items in a house where I am the most happy. Writing for three days and getting spoiled= just what the doctor ordered. I do have some regrets about leaving Mom now however. Before, it seemed like a respite from all of this. Now that mom is here, for however long that will last, I hate to miss one minute of hearing what she has to say. I have so many questions I want to ask her. So many things I thought of when it was too late, that I can now bring to her and discuss. I don’t want to miss this amazing time that we’ve been handed because who knows how long it will last. And she and I are long overdue for a good argument. I’m going to let her win this one.
It is great to hear you have your mother back for now. Our thoughts are with you.
Thanks Steven. I appreciate you reading and taking the time to respond.
Indeed. I do, I will.
Went through this with my mom two years ago. The key thing is to spend every moment you have with her like it’s the last, because we just don’t know. It’s important not to have any regrets when she passes. God bless.
Thanks Renee. Yes, time is important… or quality of time. I’m sorry for you loss and hope that it was as peaceful as it can be. I appreciate your feedback and your taking the time to read my post.