Sunny Days

After a big breakfast (two eggs and a slice of toast) mom wanted to get dressed. Not switching from one pair of pajamas to the next; she wanted to wear jeans.

"I want you to help me go through my makeup drawer," she said. "I know there's a lot of stuff in there that needs to be thrown away. It's been awhile since I've worn any of it and I should start putting makeup on again."

We spent the rest of the morning choosing something for her to wear and cleaning out her drawer. Whenever there was a pause, she talked about food, talked about the next meal.

At lunch, she ate a thick meatloaf sandwich, chips and fruit. Dad wanted her to drink a glass of tomato juice, but she insisted on a can of orange soda.

After lunch today, mom wanted to sit out the patio. One of the Red Bud trees is getting pink, a contrast to the other trees that aren't budding yet.

"It can't be any colder out there than my feet," she said.

"Mom, give me a minute and I'll join you," I said.

"Nope, she replied. "I'm not going to wait."

She walked to the door, slid it open and started to take a step outside. Then she retreated.

"Too cold?"

"Yep."

She came around to sit down again.

"Are you going to write anything about your sick old mother?" she asked.

"What would you want me to write?"

"That I'm sick. And old."

"You forgot the part about being a mother," I offered.

She sits in her chair with a blanket over her lap, sipping her coffee and staring out the window. Her bare feet are too swollen for socks, and they peek out from under the blanket, toes wiggling.

The cat jumps into her lap and gets comfortable, then jumps down to see what dad is doing in the other room.

I have to leave to drive home soon. My mom, dad and aunt are talking about playing games: Florence wants to play Scrabble, dad says he doesn't like Scrabble. They talk about whether there's a Cribbage game online. They're restless I guess.

I help mom arrange her makeup drawer before I leave, grabbing a cookie and a drink as I go.

Waking Up

Over the weekend, my mom slowly started emerging from her month-long fog. When I called on Sunday, after a few minutes of chatting with dad and hearing that she ate well all weekend, he asked if I wanted to talk with mom. Surprised, I said, "Sure!"

Mom got on the phone and her voice had energy that I hadn't heard in a month. She sounded like herself and she actually carried on a conversation that made sense for for than a minute. She said she felt great, which was really encouraging.

After several minutes, dad took back the phone. "Mom sounded great," I said.

"Dont kid yourself," he said. "That took all her energy."

I felt a little struck down by his pessimism. After all, no matter what the situation is, when you have a good day, you have a good day. I was thinking to myself that it would be nice if he could just say, "Yes, she had a good day, and I'm glad."

When I called on Monday, he gave me the run down of what she'd eaten,how much time she'd spent up and about and I said, cautiously, "It sounds like she's moving around and eating incrementally more every day now."

He didn't say much in response, but I noted that at least it wasn't a negative comment. As my sister said, "From dad, that's as good as a positive response."

Mom doesn't remember much from the past couple of months. She doesn't remember my visits, and she didn't even remember her trip to Colorado over the holidays until my sister reminded her of some of the things they did.

This morning, she said she was tired from her "big day" yesterday, but I can hear in her voice that she's really trying to pull herself out, which is great, because I was feeling like dad had lost his enthusiasm for encouraging her.

No matter the outcome, I want him to be able to think back and know that he did everything he could for her. I don't want his memories of this time in her life to be full of lost hope, shortened patience and frustration. I don't know how to explain that to him, though.

Over the Weekend

I think having dad's sister visiting has helped his mindset a little, or maybe knowing someone else is there with him not only provides the companionship and stimulation he needs, it's pushing him to take somje extra steps with mom.

It's not that he's not doing enough, but sometimes he doesn't know what to do, or he's exhausted from the constant effort. I get it.

I spent an hour on the phone with mom's Hospice case manager and then the Hospice social worker, who visited mom and dad the next morning. Of course, about 30 minutes into the conversation, dad decided he was through talking with her and had an appointment he needed to get to. He really did have the appointment, but when he's done talking, he's done, and that's pretty much it.

So, I asked him how the conversation with the social worker went, and he said, "Oh, we didn't really talk about anything."

I'm thinking: "I talked to this woman for an hour, and you didn't talk about anything?"

So I asked him, "Did she mention getting some extra halp for you and mom?"

"Yeah, she did bring that up," dad said.

"I think it's a good idea. What are your thoughts?"

"Oh, I told her I would have to think about that. Maybe next week I'll give it some thought," he replied. "There are a lot of caregivers in this directory, and they all charge for this and that..."

Again, I'm thinking that not even 24 hours before, he was telling me he doesn't think mom will make it through another week, so the stall doesn't make any sense to me.

He was short with me on the phone as well. He really doesn't like talking any more than he has to, so he shooed me off.

Critical Mass

Of course, as soon as I get back to San Antonio, all hell breaks loose.

My dad has hit a wall as constant caregiver. He's overwhelmed and frustrated, isolated and impatient. Having nurses and aides come for an hour or two each day still leaves him the rest of the day and night to care for her. He's trying to let logic override emotion, but without realizing it, his emotions are overriding logic. It's too hard for him to think about her being gone, so he thinks about it all the time. He's lost sight of why it's important to keep trying with her, to talk with her, to get her out of bed, to help her eat and drink, to take her to doctor's appointments. He doesn't see the point in any of it and he gets upset with me for questioning him.

Today, he had two things on his calendar: Take mom to the oncologist in the morning and meet my aunt Florence at the airport in the late afternoon. Having the Hospice aide call to schedule a visit in between those two events was too much on his plate, so this morning, he decided not to take mom to her appointment - thought it was a waste of time, told the Hospice aide not to come today - not convenient, and said that he was considering not driving to the airport to pick up his sister.

When I told him there was a point in taking her to the doctor - they were very clear in saying that they wanted to see her today - and that the aide comes to help both of them, he got defensive and told me I was suggesting he wasn't doing a good job with mom.

"Dad, you're doing a great job, and this is unbelievably hard. It's what you've been doing day and night for a month now and that's a lot to ask of anybody. All I'm saying, is that there's a disconnect. I'm hearing you say it's time to just let her slip away, but I have not heard that the doctors have said that it's time to discontinue treatment. Her doctor saw her Monday and wanted to see her again today, dad. There was a reason the doctor wanted to see her again in two days."

"The doctor wasn't going to be able to tell us anything," he protested. "It's just more of the same. The tumors are getting larger and there's nothing we can do about it, and you have to accept that."

"Dad," I said slowly. "How do we know what kind of tumor growth is there? You canceled her CT and PET scans last week. Her oncologist says her blood markers are improving."

"The blood markers go up and down all the time," he snapped. "It doesn't mean anything."

"Yes it does mean something," I said. "If it didn't mean anything, the oncology nurse wouldn't have mentioned it to me on the phone yesterday. She said it's the second time in recent weeks that it's gone down. It's one of the reasons they were very eager to see her today. You can't just not take her to these appointments."

"Fine. You take her to the doctor and to get her scans," he said. "I'm hanging up the phone now. Call me later and tell me what you decide to do."

What I decide to do. He's done and he's giving it over to me. For the first time, I have no idea what to do or say. I'm frustrated from the confrontation and I feel like I need to drive back up there again.

I spent the rest of the afternoon on the phone with the Hospice case manager and the social worker. I made my case for an intervention and the social worker is making a home visit tomorrow. She's going to suggest to my dad that in addition to Hospice, that he bring in another caregiver who can spend more time there during the day.

One Month

I looked out to the street earlier this morning, and watched as clusters of women walked out their doors, meeting other women already walking down the street. It was the monthly women's coffee for their neighborhood, and the women were all walking together to one house.

Dad said, "That's the neighborhood coffee that your mother went to one month ago. Then she came home, went to bed and that was the last day."

Meaning, the last day that mom woke up feeling good. the last day she ate and drank well, the last day she got up and did anything other than move to the chair, the last day she made sense.

Sitting in the Sun

Mom took a few of her pills this morning. As she cups several in her hand, she lifts her hand to her mouth, but falls short, and as she tilts her hand, the pills tumble.

I pick them up to try again. I put them in her hand, but she looks at her hand, unsure of what she is supposed to do.

"That's OK," I tell her. "Let's just skip the hand. I'll put them in your mouth for you."

She has trouble swallowing them now; it's hard for her to suck water from the straw, like she forgets how straws work.

She remembers for a moment and takes a long draw, then breathes out into the straw, and tiny particles of the pills that had been disintegrating in her mouth cloud the clear water in the glass. 20 minutes and a spilled glass of water later, she took fewer than half of her morning pills and was ready for a break.

I said, "That's fine, mom, but it's going to cost you a hug."

She smiled, and slowly wrapped one arm around my shoulder, then the other, giving me a strong squeeze.

"I can always do that," she said. 

She walked to the chair, a bright, warm spot next to the windows. Owen came in and sat with me on the ottoman next to mom. He watched her quietly for a moment, them climbed over me and hid behind the chair, one eye peeking out.

He's not bothered to be near her, but is hesitant to touch the splotched, sagging skin on her forearm. He climbs around and moves to the other side of mom's chair. She opens her eyes to watch him for a moment. She smiles and closes her eyes again, saying something about his energy.

Owen left with dad to run some errands, and while they were gone, Lori, the Hospice nurse arrives. Mom hasn't met her yet, so I take her in and introduce her and leave them to talk for a few minutes. Dad and Owen return, and dad goes in to talk mom and the nurse.

Owen's curious and wants to meet the nurse, so we go and sit on the far side of the bed for a moment, then he's back to playing Legos with his brother.

Hospice in the House

We've now arranged for Hospice care for mom. When Hospice care begins, much of the other care falls away. So, instead of the daily home health care visits, she and dad will now be visited by the Hospice team. They pretty much take care of things here at home. I'm still trying to figure out how it all connects.

Mom hasn't had anything to eat or drink today. I don't know how much the Hospice team will be able to help us with this. I don't think they will force her to eat. Dad has pretty much decided it doesn't matter any more. I think it's been so hard for him these past weeks trying to get her to eat and drink when she hasn't wanted to that he's just giving in to her wishes.

Owen wants to see mom. I tell him she's sleeping, but let's be real quiet and go in to check on her. He giggles at the plan. She's sleeping on her side, back to the edge of the bed. The bedsheets envelop her completely -- only a bony arm and her tufted head peek out. Otherwise, it's like there is nothing there. We turn and leave her sleeping.

Oncologist - Neutral Territory

Dad says mom's visit with the oncologist was good, but even the doctor is scratching his head about what triggered mom's reaction and downhill slide over the past several weeks.

The doctor didn't want to prescribe anything for pain, because he's worried that it will only increase her confusion. I'm thinking that if she's in pain, it doesn't really matter whether she's confused or not. She still knows when she's in pain.

On the optimism scale the doctor was neutral. My dad took that as a sign that her condition will not improve from here on out. I didn't know what to tell him.

The Start of a New Week

Monday. Mom got up well ahead of her usual 9 a.m. routine - a good sign. Groggy and not necessarily any more aware, she had a little breakfast this morning. The swelling in her abdomen has gone down, not completely, but an improvement from the weekend.

Mom is seeing her oncologist this afternoon. Except for the worst days, I've noticed that she perks up just a little for the doctor visits. Getting out is good for her and she needs the stimulation of movement, the weather and interacting with other people.

She ate a little at lunchtime as well, and she's been taking in some fluids. I reminded dad to tell the oncologist to prescribe something for her pain.

I'm hoping that this is a nasty chapter for her, and nothing else. Chemo takes people to the edge and brings them back all the time. I don't know what toll the weeks of malnutrition and dehydration have done to her.

Dad is guarded. I don't think he wants to allow for optimism at this point. It's hard to be swinging on that pendulum, knowing that eventually, disappointment and more rough times can be just a mere shift in the wind.

Still at the Hospital

Not a great way to spend a Sunday. They did a contrast CT on mom's abdomen this afternoon, which meant that she had to drink the nasty contrast stuff. I'm thinking "We haven't been able to get her to drink water for days. How the hell is she going to drink all of that?"

She wouldn't do it for dad...she finally agreed to drink it for the nurse.

As I suspected, there is a large obstruction high up in her bowel. There is no fun way to remove that. But leave it alone and it will rupture, she will become septic, and that's a completely different way to go. I suppose if she wants to cheat the cancer...but I doubt she's got the presence of mind to be thinking about it that way right now.

She's laying on the stretcher/bed in the ER exam room. Eyes closed, hands over her belly. Suddenly, she turns her head to one side and starts kissing the air. I wonder who she imagines she's kissing at that moment. She smiles and turns her head back to center.

I stand close and tell her that I'm leaving for a little while to go pick up the boys, but that we'll be back soon. Right now, she has no concept of "soon," so that could be five minutes, five hours or five days. She opens her dry, encrusted eyes to look at me, smiles, and politely says, "No thank you. I just had some. I don't need any of that right now."

Back at the Hospital

Mom is back at the hospital this morning. Finally got dad to agree that EMS was the best way to get her there.

As I made the call, dad wanted to make sure that they didn't come into the neighborhood with sirens blaring. As usual, he doesn't want to call attention to the situation or create unnecessary drama.

I explained to mom that I was making the call, and that dad and I thought she needed to go the the hospital and not to be alarmed by EMS, but that we thought it was the easiest way to get her there. She understood what I was telling her and agreed.

Dad followed in his car, but asked me to stay back and take care of a few things at the house before I head over there to join him. I'm taking a few minutes to make a few phone calls and post some online updates.

Coordinating Life Stuff

Best laid plans...

Friend and neighbor Cyndi, who is also spending a lot of time caring for an aging parent right now, has given me a lot of perspective on caring for family and preparing for loss, as well as some good medical advice.

Cyndi doesn't mind the ping of my text messages at 3 a.m. and she knows when to push me to talk and when to stay back and let me keep to myself. I return the favor by bringing her Starbucks or pasting Aretha's inauguration hat on her head shot.

Cyndi is leaving tonight to spend the week in Houston with her dad before he travels to Georgia to stay with one of Cyndi's siblings for several months. When Cyndi goes to Houston during the week, I get Kim to and from school every day.

If I decide to stay here with the boys for a day or two during the week, of course, I will have to help Cyndi carve out a quick Plan B for Kim. I know she won't mind and that we'll come up with a solution, but still, I hate having to change plans on friends like this. I know she'll tell me I'm ridiculous for even worrying about it.

Bringing the Kids?

Since mom's health has declined so fast, I haven't really had a chance to explain anything to Isak and Owen. They were here with me two weeks ago, and it was pretty clear to them that she was ill, but I don't think they thought about it a whole lot.

Of course, in the days since, the kids overhear the conversations, the multiple, daily phone calls with my dad, Sarah and the people in my life. That gives them a gradual awareness, but it's time to have a more in-depth conversation with them about it.

My friend and neighbor Nicole, who lost her mom to cancer two years ago, reminded me of the importance of letting the kids spend time with mom and to absorb what's happening in their own way. Being here to see it and connect with their grandmother makes it easier for them to say goodbye when it's time to do that, and takes away the mystery of death.

Alternate weekends with their dad make it tough for me to bring the boys here every weekend. At this point, I'm considering bringing them up here for a day or two this week. Nicole reminded me that it's OK if they miss a day or two of school right now.

It's impossible to say whether mom is in her last days with us. Even so, I don't want to wait until it's too late to have the experiences with her, or to encourage the people in her life to be here with her if they want to. I don't want to call it saying goodbye, but I think we will all be grateful for just being able to spend a little more time with her right now.

Sunday Morning Decisions

Mom was up at 5 a.m. vomiting. Since she hasn't been eating or drinking, "vomiting" is relative, of course.

This morning, she refused meds again, and refused to get out of bed. Of course, she hasn't eaten or had anything to drink. I was surprised to learn that she's not taking anything for the pain in her abdomen, which is now a constant.

Mom's stomach and back are so distended. I think her bowel is obstructed and I want to get that looked at before rupture/perforation.

I had to talk my dad into getting EMS to take mom to the hospital. He agreed that we should go ahead and take her to the hospital today but thought that we should drive her ourselves. I had to explain that EMS would be easier -- one move onto the gurney and that's it, as opposed to us moving her from the bed to the wheelchair, the wheelchair to the car, back to the wheelchair, etc.

I think dad was worried that if we take her to the hospital, she won't be coming back home. On the other hand, my dad has moments where logic tells his that if she's in such pain, he's ready to let her go. He lets logic override emotion more often than not, but I know that emotionally, it's taking a lot to get him to where he is now.

And Then There's My Way

I don't mind talking about what's going on with my mom -- feel free to ask in fact! But sometimes, when there's not time for long conversations, or those times when something happens "in the moment," it's easier for me to write about it.

I write things so I don't forget about them. If you know me, that makes sense.

Some of what I write here is sad, some of it is frustrating, some of it is funny. A lot of it may seem irreverent, but it's what's happening. 

So, consider this fair warning: I will tell stories about how my mom and I had dinner with my dead grandmother and Mary (as in Mother of Jesus). You'll hear about the sometimes amusing ways she rebels against me and my dad. If you know Betty Ann, you understand that rebellion is a new color for her.

Connections and Updates

Being here on the weekends gives my dad a break from being mom's primary caretaker. As she sleeps in the living room recliner, he sits at his computer in the waning daylight, reading and responding to e-mail.

My dad has a lot of friends and acquaintances, so it's no surprise that his inbox is full of sincere inquiries about my mom's health and messages offering caring and support.

In the upscale, "active adult" community where my parents live, aging, illness and death are not sugarcoated. It's part of everyday life here, so the notes from friends and neighbors here are gentle, but candid, because most of them have been through the experience and understand. 

My dad responds to each one, with the latest updates and information about my mom. His words are more realistic than hopeful. Some people might cut and paste to avoid having to relay the same information over and over again, but for him, I think composing each e-mail individually is part of what he needs to do right now. He's preparing himself for what he sees as the logical conclusion to this episode and if he talks about it and writes about it enough, maybe he thinks he'll be better prepared.

As caregiver, he hasn't been getting out of the house for his normal activities and routines, so e-mail is his outside connection right now. But because most of the e-mail he's receiving/responding to is about my mom, I wonder if the constant reading and responding to the same questions and concerns is taking him far enough away from this for the break he needs? 

Three Weeks

"I won't beat around the bush. It's the colon cancer that's causing these stomach pains and contributing to what's happening with you right now."

That's Sarah, the Home Health Nurse who has come by to check on my mom this afternoon, and "what's happening" is that my mom has not been eating or drinking more than a nibble and a sip here and there for the past three weeks. She's dehydrated and malnourished, bruised and terribly small. In fact, her smallness seems strange to me. My mom has always been that sort of average height/weight and right now, she's a shriveled version of herself.

She started taking Xeloda, a potent chemo drug in pill form, last December. When the oncologist recommended the switch from infusion chemotherapy, mom was excited about the convenience of taking a pill, instead of being attached to the pack that was plugged into her port for each treatment. She was happy; she felt energetic and she was looking forward to spending New Year's in Denver with my sister and her family. She never mentioned that Xeloda is prescribed when infusion chemo isn't doing the job. I wonder if she understood that when the doctor made the change.

After only a couple of week-long treatment rounds, Xeloda made good on every published side effect: By mid-January, she was plagued by mouth sores, fatigue, weakness, stomach irritation, diarrhea, bruising. The dehydration and malnutrition is doing its job on her brain. She's confused, random, she sees people and things that aren't there. She wants to sleep all the time.

The nurse tells mom she needs to drink a lot more water. Mom says to her, "I can't. They told me not to do that." The nurse says, "Who told you not to drink water?" Mom replies, voice slightly slurred from her massive drymouth, yet resolute, completely convinced that she is making sense. "They told me it is very dangerous to mix anything with my medications. That's why I can't drink water."

Later, I sit on the edge of her bed.

"Mom...it's me. I'm just checking on you."

"I can't....I..." She runs her tongue around her parched lips, more orange than pink. She turns her tongue in toward her cheek.

"What is it, mom?"

"It's my left cheek."

"What about your left cheek, mom?"

"I'm taking a class. What time does it start?"

"Don't worry about that right now, mom."

"Who is here in the bed with me?"

"Mom, nobody else is here. It's you, me and the cat."