Friday - February 12, 2010
Mom is doing really well, but I am exhausted. A Hospice nurse, Trisha calls and informs me that mother’s paperwork was not properly filled out and she would like to swing by the house and take care of the matter.
When she arrived I expressed my disappointment that I am not getting any help with my mom. I was told they were a large organization with a lot of resources and I would get plenty of support. I was told on Wednesday a volunteer was finally scheduled to arrive on Saturday, so I could get out and get some grocery shopping done.
Trisha expressed her concern and called the office to verify the volunteer would indeed arrive tomorrow. She was informed the volunteer could not make it. This angered me. When were they going to tell me? Hospice sucks!
What gets me the most angry is that I have resources to help. Mom's long time nurse is waiting to return to work. Mom has used private care giving services in the past. They aren't cheap, but they are available with one phone call. We haven't called in the troops because of all the promises of all the help and support we would be given by hospice.
I've explained countless times...I'm sick myself. I don't know anyone here and the family is non existent at the moment. I'm doing this alone, at great risk to my health, and I need help!
I'm learning a very good lesson: Always cover your ass and if the promises come through, you're just further ahead. Hum... That's one of the first rules of business...I've already learned this lesson many years ago. I can see I'm not thinking clearly enough right now or maybe I've just heard so many great things about hospice, I really believed in them.
When my aunt died in my arms of cancer many years ago, hospice ruled. They were well organized, plentiful, and in her home 24 hours a day. They were so helpful, I almost felt useless. I guess that's why I thought this would be no different. I was wrong. I should have called in my own staff from day one!
Mom has been reading her mail and awake most of the day today. She's been more talkative than usual and has even taken the time to talk to several family members on the phone, giving all her latest news. Trisha asks mom what her pain level is on a scale of one to ten, a question repeatedly asked. Mom answers swiftly, “Five.”
“Oh that’s not good.” Trish replies. I try to explain, “Mom’s five is your two, her eight is your five and if she says ten, she is really in pain…AND if she knows the "candy man" is coming, the number will rise.” Mom is an addict with good reason, but an addict nonetheless. She has been on such heavy doses of pain medication for so many years, she calls Tylenol, M&M's.
I have been cautious to find the right balance that keeps her pain to a minimum, but not over medicating her.
Trish asked mom if she wanted to go to the Hospice House for 2 or 3 days to get her pain medicine regulated and then she could return home. This would allow me a few days recovery, the ability to get some shopping done, and give some time to myself.
|Mom's Medication Shrine|
It sounded like a good idea, mom agreed. Trish ordered transportation and then completed the paperwork. I had arranged for a much needed massage at 6 PM and was promised that mom would be at the Hospice House by 5 PM so there should be no problem keeping the massage appointment. I packed up an overnight bag for mom complete with directions, all her medications, a spreadsheet of how they are administered, and a four day supply of colostomy bags.
Well you guessed it…the massage therapist arrived to set up and mom is still here pouring over a Pottery Barn catalog, looking for bedroom furniture. I’m not really sure what she must have been thinking. The phrase, "You can't take it with you" comes to mind.
Transportation arrives…who wants a massage anyway?? Dammit nothing goes to plan. They had three hours to get here! They prepare to move her from her bed to the transportation gurney.
One of the people was a young woman small in stature. Mom begins to get testy. “You can’t handle me. You’re just a little girl! You're not strong enough! I don’t want you to drop me! Brian, help them or get someone else.” Mom complains. The young girl responds with a smile, “Don’t worry ma'am, I can handle you.”
I explain to mom that the young lady is a professional and she and her male partner know exactly what they are doing. Mom has her doubts.
With one quick swoop mom is shifted effortlessly onto the gurney and mom exclaims pointing to the young lady, “You’re hired!” Mom was pleasantly surprised and we all laughed.
As mom is rolled out of the family room, she hands me the Pottery Barn catalog and points to a dresser, directing me to order it for her. In disbelief I choked out, "I will, when you come back home momma.”
I’m on the massage table pretending the last 10 days never happened. It was heaven and so very needed.
The phone rings as I’m still on cloud-9 from my deep tissue workout. It’s mom! “Brian, you have to see this place. It’s beautiful. There are heartfelt sayings on the walls. It’s so tranquil here. My room is huge, with a dining table, a wall unit with TV, a large couch, a comfortable recliner, and a beautiful bed!” She made it sound like a suite at the Ritz.
“Mom,” I responded, “You make it sound like a resort. People go there to die!” She continued with, “Do you want my phone number?” She was really enjoying this. I had to chuckle as I said. “No ma, I know where you are. I will call you tomorrow.”
Saturday - February 13, 2010
This day never existed to me. I slept through the entire day, right through the next morning. I didn’t eat and don’t even remember getting up to go to the bathroom! My body finally gave into the much needed, uninterrupted sleep.
Sunday - February 14, 2010
I awoke to the disbelief that I slept through all of Saturday! Since it was Valentine's Day, I had to get a BIG traditional heart shaped box of candy and a card for mom. I arrived to the Hospice House bearing gifts. Mom was right, the establishment was peaceful and well appointed. Her room was located at the end of the hall and was even larger than she described. Each room was given a theme and mom's was "Listen." Scrolled above her bed was the phrase, "Listen with your heart and you will understand."
|This was written above Mom's hospice bed|
The hospice nurse explained that mom just had a bath and her hair was still damp. With her hair trimmed and freshly painted nails I did for her on Wednesday, she looked good, but something just wastn't right.
The temperature of the room felt cold to me. Mom was sitting up in her beautiful bed. On the tray table before her was the most expertly prepared meal. It was presented and appeared as appetizing as anything you’d find in a five star restaurant. I was VERY impressed.
Mom spotted me and said, “I like your sweater.” “Thanks mom, you’ve seen this before,” I responded with a puzzled look. There was a very strange look on mom's face. I was facing her, but it was if she looked right through me. It was a glassy, expressionless stare without blinking.
The nurse began to cut her meat and I said, “You better not expect me to cut your meat when you get home. Don’t get used to this.” Normally I would get a smartass response, but my comment was met with that cold stare.
I sat at the dining table watching her begin to eat her meal. She stabbed a piece of meat…and pressed…and pressed…and pressed. She pressed so hard, she bent the talons of the fork!
“Mom, you’re stoned!” I laughed
She looked up at me, fork swinging in the air as if she had Parkinson's and proudly announced with a big smile, “I’m on dope!”
“You sure are.” I chuckled, a bit concerned.
The fork waved in front of her face. She was shaking. I asked if she was cold. I got a very quick whisper, “Yeah.”
I draped her blanket firmly around her neck as she began to chew…and chew…and chew. I stared in amazement. She chewed that one piece of meat for ten minutes, maybe longer. “Are you going to swallow?” I asked with concern. No response. “Mom, you are absolutely stoned!” I said and again no response.
I went down to the nurse’s station to complain about the cold room and insisted on seeing mom’s med list. I was told by an aid they were unable to adjust the room temperature and because it was a Sunday, maintenance could not fix the problem until tomorrow.
I demand to see the med list and I was handed a copy of the same list I sent with mom. “No, I want to see what she is currently on.” I aggressively demand. I’m told that IS what she is on.
“NO, this is her regular list. She came here to “regulate” her pain medication. I want to know what changes you have made. That’s not my mother in that room. She’s stoned off her ass. I can’t even communicate with her. Get me someone in charge of this facility, NOW!”
Nervously the aid went into an office and spent five minutes talking with a nurse about my issues. The flustered nurse appears, nervously explaining that indeed mom’s Fentynol has been increased and morphine has been administered to relieve her pain.
I had a very uncomfortable feeling, like they were trying to hide something. I know my nerves are riding high, so I'm sure it's just me. I get a response from the nurse that I have repeatedly been given for weeks, in a very Stepford Wives tone..."This is the process." Well I got news for ya Joanna... I don't like "the process!"
I asked to speak with a doctor and once again I'm given a line that nothing can be done until tomorrow. “Tell the doctor I want to speak with him first thing in the morning. I understand my mother needs pain relief, but I want to be able to communicate with her!”
When I got back to mom’s room her meal was removed and a huge piece of chocolate cake rested before her untouched. She is still sitting upright, but her eyes are closed. “Mom, Mom…do you want me to feed you?” I quietly asked. All I got was a soft, quick, breathy, “No.”
I show her the heart shaped box of candy. “Look mama, I brought you something.” I say as I place an envelop with her Valentine's Day card in her hand. With a smile she says, “Goodies!” She held the card out as far as her arm would extend. Her arm slowly dropped to her side with the envelop standing up as she fell asleep.
Throughout our visit, mom kept repeating a single word that sounded like, "Wood." I couldn't understand what she meant.
I took this time to step out of the room and call the family to give them an update. After about 45 minutes I went back in the room and mom was still sitting up, card in hand, candy at her side, sleeping.
I reclined her bed to allow her to sleep more comfortably and lowered her lights. The movement of the bed woke her up and I began to massage the crown of her head and tell her how much I loved her. Her eyes rolled to the back of her head as she smiled. I said, “Your expression reminds me of how happy the dog was when I rubbed her belly!” Mom drifted off to sleep with a smile on her face.
I left the candy by her side and card still in her hand hoping that when she woke up she would read it. I turned, preparing to leave as she loving said, “Don’t leave me.” These words will resonate within me forever.
I spent another 45 minutes on the couch watching her rest, reviewing our last 3 years in my head, thinking how hard this all must be for her; The never ending hospital visits, years of rehab, nurses, doctors, and medications, the isolation and worry as her son maneuvered his way through cancer losing his tongue. It was all too overwhelming to recall.
I waited until I knew she was soundly sleeping before I crept away. On my way out I again announce to the nurse, “I will be back in the morning to discuss the regulation of mother’s pain medication!”
More to come...
Wow! I'm so sorry all of this has happened. We had Hospice for 6 months, and they were a God Send to us! You are right to stay on top of things. I think the more the family stays involved, the better the care the patient gets.
I KNOW it's a hard road to walk, and I sure don't envy you....but I'd give anything to be able to have even one of those days back!
Hang in there!
Brian my friend,
Your mom is surely one lucky lady to have a son like you..A son like you is in in every mom's wish list. Nothing else really matters especially at a time like this.I sure hope all my sons will grow up to be caring and loving adults like you. I've been telling my eldest (he's 17) about you and he was really impressed. Good job, brother!
I honestly believe these folks keep patients doped up in order to avoid spending time listening to their needs or taking care of those needs. I am so glad she has you there to keep them on the up and up. Too many folks have no one to advocate for them. All our love and prayers are with you both. I am glad you got some rest even if it was only for one day
DR SWILL, I'M SITTING HERE IN MY LAZY BOY CHAIR.3 O CLOK [AFTERNOON] AND JUST GOT DRESS.OUR MOVE WILL BE ON THE 30TH. SO MUCH WORK TO BE DONE AND NO ENERGY. I'VE HAD YOU ON MY MIND FOR A COUPLE OF DAYS BECAUSE A COUPLE OF THE GALS ON ROSS'S BLOG HAVE BEEN ASKING ABOUT YOU. I'VE TOLD THEM TO GO TO YOUR BLOG. WHEN I REREAD PART4 AND PART 3 AGAIN I THOUGHT BACK ABOUT HOW I WENT THROUGH ALMOST THE SAME THINGS AS YOU BEING THE CARE TAKER AND NOONE THERE TO HELP BUT THEY ALWAYS HAVE PLENTY TO SAY WHEN OUR LOVE ONES PASS. I WONDER SOMETIME IF YOUR FEELING ANY BETTER AS THE DAYS PASS. JUST HOPING YOU ARE MORE RELAXED. I HOPE YOU GOT AWAY FOR A FEW DAYS AND DO NOTHING.MY IDEA OF DOING NOTHING IS SITTING NEAR WATER AND JUST LISTENING TO [QUIET]. YOUR NEVER REALLY ALONE.
O CLOCK NOT OLOK I NEED TO GET THESE FINGERNAILS CUT AGAIN. TG
Although what you have been doing is extremely draining, you will one day have no regrets for always going the extra mile, asking the questions, trying to be sure everything has the opportunity to be addressed. No one can advocate for us better than ourselves or our loved ones. You are an angel on earth, Brian. (((Hugs))) to you during this difficult time;-)
Something so does not leave
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