PART III – REHAB?!
November 19. They move mom to rehab facility…i.e. nursing home with 24 hour care. Rehab? Is she strong enough to fight back? Do they think she has another chapter in her life?! Okay.
She wants to go to the facility closest to home, and right next-door to her best friend, Sandy. But there are no beds. They stick her in this shit hole, where she is crammed into a room with a curtain stuck between her and her new roommate. The place smells of sickness. I run home and get some paintings, pick some flowers, and print a photo of the family, framed it, and brought it to warm the place up.
The idea of “rehab” is for her to be able to dress herself, and use the toilet. And perhaps shower.
She can no longer recline completely flat, because she can’t breath. So she has to sleep sitting up.
They pump her with painkillers until she is loopy. I watch in fear and disgust. I want to break her out of there.
We are with her fifteen hours a day. She is not eating. Only ice cream. Let her enjoy it.
We call at 3am to check on her. The second night we are informed that mom was found ON THE FLOOR!
The next morning we run in. She is there, slumped over in her wheelchair, head on the tray. It was so discouraging to see my Mom like that. How can anyone be comfortable like that?! My heart is breaking, because I know she is not going into her bed, because she fears if she lies down on the bed, she won’t be able to breathe, and will die. I cry every time I think about her fight and struggle.
She wakes up. She says her hip hurts. There was a small bruise. She had somehow slid off of her chair onto the floor. It was not a fall, at least. But it took them 25 minutes to discover her there…or more…who knows? She is high, but lucid enough.
I want to get her out of there!
She tells me that her roommate has a son-in-law who visits at night, brings in alcohol, and watches soccer in Russian. She also said she put herself in the wheelchair, from the bed, after having to go to the bathroom, after paging an aid, unanswered, and rolled herself into the hallway to ask for help. She said they were doing paperwork, and finally assisted her.
I didn’t know what to believe. I haven’t seen her wheel herself in the chair. Too weak.
I asked suspiciously, “Mom, can you use the wheelchair?”
She answers with pride, and justified defensiveness, “Of course I can.”
And then she shows me. And she shows me!
Fuck. She can. Fuck. She is not hallucinating! Fuck. I have to get her out of that fucking place!
Later in the day, she even reiterates her Russian story, and it is 100% consistent. I believe her.
Dad has pulled his back out. He must remain in bed.
Friday, November 21. Her best friend, Sandy and her husband, call the home near them, where they have a relationship. 2 beds opened up! In private rooms!! Lets move her NOW!
Oh…but there is paperwork. And we need doctors orders and administration bullshit. This needs to be signed and faxed. That needs to be signed and faxed. We clear the paintings, vase, and photo.
My sister spoke with the social worker and nurse to start the process. Deborah said, and I quote… “I am the most patient of my family, so if things don’t get moving, you will be receiving a phone call.”
I very assertively bug the shit out of them to make sure all T’s are crossed, and all I’s dotted. It’s too late to move her tonight. She will go first thing tomorrow. What time? By noon. I call the other facility to make sure they saw the order. I catch the administrator before she leaves. She hasn’t seen it. I make her walk to the fax machine. She finds it. But the date is missing! It just says “a.m.” I call the other facility in a tizzy and demand the paperwork be resent immediately. I HOLD ON THE PHONE until it is done. I call the other facility to make sure it is in hand. Mission accomplished.
Brother and sister fly back to their homes. Mom seems to be on the mend for now. Dianne and grand daughter arrive. We hope to get her strong enough to get on that plane and go on that cruise. It means the world to her….and us.
Saturday, November 22. I call first thing to make sure the van is picking up mom on schedule. But there is a bike race. “Tour De Tucson”. She may be a little late. I run around and get the room she will be checking into, homey. I put up the paintings, flowers, and photograph of family back. I am spazzing to make everything perfect…well, as perfect as it can be, for my beautiful mom.
As they wheel her in, I notice that her socks are filthy. And it looks like they have three layers of them on her. I ask the nurse to change them. An hour later, I ask again. I finally took them off, only to discover there was only one layer, and her feet were swollen. They were huge! I freaked out. I want to see a doctor NOW!
The doctor only comes in on Fridays.
Once a week?! My mother will not be seeing a doctor for a week? That is not acceptable.
Well, the nurse practitioner can see her.
Get her in now!
We have to page her.
In the meantime, 3 different nurses look at her. One says edema. One says gout. One says cellulitis. I’m afraid of gangrene! There is now way they are going to amputate!!
3 hours later, Nurse practitioner shows up. She is very thorough. She orders a bunch of medication. She orders x-rays. She orders special stockings to put on her legs. Mom has edema. She needs to keep her legs elevated. (I picture her slumped over in other facility. Legs down, Head on tray.) I am angry and frantic. Where are the stockings?! They will be put on the next morning. Allegedly better to put on in the morning, after she has her bath. Difficult to put on and off.
Mom says it doesn’t hurt. So that is a consolation. There is no lounge chair, or “Archie Bunker Chair” in her room. I ask them to bring one. It’s the only thing mom can sleep in semi-comfortably. They find a chair from the seventies, at best, with a manual adjuster. How much does this place cost a night? Is this the best you can do with prehistoric furniture?! Yup.
Then I have to fill out the paperwork. This includes checking off whether we want a feeding tube, if necessary. No. If she has a heart attack, do we use that hoosamajiggy that I have seen in movies, where they yell, “CLEAR!”. Ummm, well, yes.
I wake up in the wee hours, as usual, and call to check in. She is sleeping, and ok.
Sunday, November 23. I check in on Dad, and then straight to Mom, first thing to see how her legs are…the swelling has reached her knee on her left leg! Her big toe is bright red. I freak again. Get. me. the. Doctor!
I call Dad. “We have to get mom to her doctor! I don’t trust these people, and their doctor won’t be in til Friday! And she seems to be just slowly shutting down. Her breathing is tough. I’m not sure I did the right thing signing that paper, Dad! I heard from a nurse here that when they do that thing to the chest, that it’s not like on tv. It can break ribs. And Mom is already a mess. Should we change it? He says, yes.
She gets a bath. They put on the stockings. I insist that they find a better chair. They manage to find a leather Archie Bunker Chair that is way more cushy. She is comfortable. hallelujah.
Sunday evening, Dad got out of bed, and came over to the home to change the orders. D.N.R. Do. Not. Resuscitate. He signed it. I had no idea that was the thing I had signed yes to. But I felt torn and guilty. But it’s the right thing. She is dying. Why prolong the agony? It is merciful.
Monday, November 24. I go to shift Mom’s legs. She insists on putting them down, because her back hurts when she is stuck in the reclined position too long. The stockings are off. They are not to be worn at night. My hands are wet. What is this? Is the chair damp from a towel or something? Then I realize the moisture is coming from her legs. Like at the airport, I am now on orange alert. I look closer, and now I see her legs have little blisters on them! Water blisters! I guess it’s water. I call the nurse in a panic. Her legs are leaking! I. WANT. TO. SEE. A. DOCTOR! They make an appointment with Mom’s Pulmonologist for tomorrow.
It is explained to me that her heart is no longer strong enough to pump the blood to her feet. And now her kidneys are shutting down, so the fluid in her has no place to go, so it leaks out of my mommy!! What the fuck?! We are watching her die from the feet up!
Tuesday, November 25. Mom’s swelling on her left leg has now reached her thigh. Mom has to be brought with the home’s van with a lift for her wheelchair. She is too weak to use a walker…to even take 2 steps. Dad goes with her. Dianne and I drive separately.
3 pm. Nurse practitioner sees her first. She looks at her legs. She looks concerned. Then the doctor arrives.
He says to us gently, we have seen the X-rays. The cancer has spread to your lungs. There are multiple tumors. Its time to make you comfortable. We suggest “Palliative Care“.
What the fuck is that? Is that a gentler way of saying Hospice? Can’t put Humpty Dumpty back together again?
We are actually a bit shocked. The cancer has spread that rapidly to the lungs? When did this happen?
He wanted to do one more x-ray and send us a block away to the lab. We didn’t have time to call the official van. As Dad and Dianne wheeled her to the next building, I stayed behind to speak with the Doctor.
“Should I call the family now? How much time does she have?”
They should come right away. There are no guarantees that your mother will make it through the night.
I call Deborah and Howard, then try to find Mom, Dianne, and Dad. I walk around this complex and can’t find them. Doors are locked to entrance of x-ray facility. I run around, and finally find them, frantic. All doors are locked. Mom in the wheelchair. I sprint back to Pulmonologist hoping they haven’t locked the doors. I get in, panting, I say, “The building is locked!”
They look at the clock. “Oh, they close at 4. You can rush over across the street to Outpatient next to ER and get the X-ray.” I run back to Dad, Di, and Mom. It is a glorious, sunny afternoon, with a slight cool breeze. We wheel mom about a quarter of a mile, down hills, up hills, to the hospital. There was a moment where we felt FREE! Mom was like in the scene of The Titanic, standing bravely at the front of the ship. It was a moment I will never forget. An actual happy moment.
We get in for the x-ray. I actually don’t even know why they are doing one. But, whatever. The van picks up Mom and Dad, and she goes back to the home. We make an appointment for Hospice for the next morning. Dad sleeps over at the home, to be with his wife, and make sure she is attended to properly.
We. Want. Mom. Home.