Mom is home now. She was so very happy to be home; happy to be somewhere she knew, somewhere quiet, and most of all that first week, somewhere she could take a nap in a dark room by herself and not be woken up every few hours to tell someone else what her name is, where she is, what day it is, and try to squeeze their fingers. She slept on a bed in her own room and said it was the best sleep she'd had in years. When my parents asked the hospice nurse about what my mom should and shouldn't eat and how much and when, the answer was, "Oh honey, you eat whatever you want. It's up to you." In fact the only downside was having hospice nurses at all- the word "Hospice" is unpleasant in sound and denotation, and so we were all forbidden to use it. The two nurses who come to care for my mom are her "Graduation Prep Team" and we're all on board.
Everything about coming home was better for my mom. The only problems were that she needs someone with her all the time, since she can't move anywhere under her own power. We needed someone with her at all times to cover all the extra fluff stuff beyond breathing and sleeping; you know, things like food, water, warmth, etc. And my dad works full time and needs to keep his job, although they had been nothing but kind and supportive of everything my parents have needed. The solution came from a comment the hospital social worker made to my dad. "People keep asking how they can help, right?" He nodded. "Use Excel to make a volunteer schedule."
My dad took that idea and ran with it, and gave it over to one of my mom's best friends and my favorite people from her ward and from their street. She took the Excel spreadsheet and made sure not only someone was always with my mom, but it was someone my mom already knew and loved. It was amazing. It continues to be amazing, because it's been over a month and there's never been a time when we had to scramble to find someone to cover. Instead it's been more of a fight of limitations, "No, only two hours." "No, we already have someone today." "She had family fly in from out of town, so we won't need you tomorrow. No, you can't come anyway. Yes, you'll get another turn." The outpouring of love and support wasn't like a cup running over so much as a barrel under Niagara Falls. We didn't have room for all of it.
And through it all my mom remained kind, patient, and loving. Not always peaceful, calm, and grateful, though- this was all taking it's toll on her, straining her emotional reserves and pushing a feedback loop of grief. We could talk about it, abstractly, what it might be like on the other side and the people waiting there, or theorize about what new tasks and teaching she might be given. She'd been told that this was a sanctifying experience for her, and we were all trying to be properly humble and faithful about it.
But it was hard. It still is hard. There is an incalculable difference between knowing something and believing something. Thinking in my brain, "This is the right thing, my mom dying is the right thing, it's what Heavenly Father wants," is a far cry from my heart being fine with my mom being taken away. She was struggling with this too. How could this possibly be okay, let alone right?
Mom had a visit from a good friend with high connections and they had an important, and very personal, long talk. After that she had some direct answers to private prayers, and both of those have given her a lot of peace. For her having peace I am profoundly grateful. She believes this is right; not just thinks it, she feels this is the right thing at the right time, and I'm going to have to lean on her belief until I can find some of my own.
Everyone asks me how she's doing or how I'm doing or if I'm okay. I'm not okay. It's going to be a long time before I am okay again. That's how these things work, the way it's supposed to be. I have hope. I have faith. But I found a better answer for how my mom is, and for the underlying question, the question everyone actually wants to have answered but doesn't want to ask. How long.
The following list I've taken from a website called www.brainhospice.com. It's a site designed for those who work in hospice who are given care of patients with illnesses and diseases specific to the brain, and who may not be as familiar with the care and prognosis of that type of patient. The site is written by a hospice worker with a brain cancer care specialty.
She begins with this caveat:
"This list is a very, very loose guideline based on what has happened to other people, but it may be helpful in beginning important discussions with the patient's doctor and family. In order to serve as a helpful guide, most of what's listed under each time heading would need to be occurring. Remember, though, that everyone is different. Too, patients in their 20s and 30s as well as those whose brain tumor journeys have already been quite long tend to spend longer in each of these stages."
Before going into the symptom list.
3-6 Weeks Prior to Death
Increasing weakness on the affected side
Falling due to resistance to accept help
Need for more assistance with walking, transfers
Urinary/bowel incontinence may begin
Confusion and memory loss
Harder to sustain a conversation
May say some odd things that make you think "Where did that come from?"
May ask less about the next treatments or appointments
May ask clear, rational questions about death, arrangements, etc.
Increasingly tired, more easily "wiped out" after simple activities or outings
Headaches may indicate increased swelling
More likely to nap or to phase in and out of sleep
2-3 Weeks Prior to Death
May begin to see weakness starting on the non-affected side
Affected hand may curl in or be kept close to the center of the body
Legs begin to buckle, eventually leading to dead weight when attempting to stand
If still walking, may wander around the house a little, as if restless
May find it difficult to hold the head up straight or may slump over
Urine becomes dark (often described as "tea-colored")
Less warning before urination (more urgency)
Less interest in matters of the home and family, hobbies, or world at large
Detached, without curiosity
Harder to have an effective adult-peer conversation
Word-finding difficulties (conversation may be very slow)
Confusion over what time of day it is (sundowner's syndrome)
Speech may be slurring or trailing off, unfinished
May begin saying things that sound like awareness that time is growing short
May begin to seem more "childlike"
Confused by choices; yes/no questions seem to work best
Losing interest in transferring or leaving the house
Seems to feel safest on one particular piece of furniture
Begins to have problems swallowing, if not already
Appetite may become sporadic
May be sleeping 20+ hours a day, with short alert times between sleep
May doze back off after eating
May describe vision changes such as double vision, loss of peripheral vision, or black spots
No longer interested in activities that require close vision, such as reading
1-2 Weeks Prior to Death
Often, completely bedridden
Younger patients may still be stubborn about getting up, though requiring assistance
May hold on to the bedrail or to a caregiver's hand, hair, or clothing very tightly
Usually incontinent by now
May continue to express urinary urgency, without producing anything
May find loud or multiple sounds irritating
After waking, seems confused for several minutes
Staring across the room, up toward the ceiling, or "through" you
May look at TV but seem not to be watching it
May make mention of "getting ready" or "having to go," without knowing where
May refer to travel, packing, or gathering clothes
May talk about tying up loose ends (specific to the individual)
May mention seeing visions in the room (I've heard everything from horses to angels to deceased mothers-in-law)
Communication seems to take more effort and makes the patient winded or tired
Doesn't initiate conversation as much, though still giving brief responses to questions
Agitation may build
Likes to keep the primary caregiver in sight and may panic when he or she is not in the room
May seem especially irritable with large groups of visitors or young children (probably because understanding conversations requires more work)
Sleeping "almost all the time"
Can sleep even in a room full of activity and noise
Harder to rouse from sleep
Brief, scattered periods of alertness
Increased difficulty swallowing pills or liquids
Vision deficits increase
Eyes may look glassy, milky, cloudy, like "elderly eyes" or "fish eyes"
May reach toward the head during sleep (may indicate headache pain)
May have a distended abdomen
Vital signs are likely to still be good
May begin to have need for pain management
5-7 Days Prior to Death
May restlessly move the legs, as though uncomfortable
Most patients would no longer be leaving the bed by this stage
May reach up or out with the arms
May pick at the bed linens as if covered with small objects
As liquid intake decreases, output also decreases
The bowel becomes quite sluggish and there may be few/no bowel movements
Minimally responding to caregiver's questions
May begin sentences but not be able to finish them
May say things that are impossible to make out or things that don't make sense
May chant something ("Ohboyohboyohboy..." or "Ohmyohmyohmy...")
May continue to seem restless and fidgety, as if late for something
May be irritated by strong sounds or odors
May be taking only minimal amounts of food (a spoonful or two, here and there); some, however, continue to eat well until about 48 hours before death
Decreasing intake of fluids
Administration of meds becomes harder or impossible
Dosing of meds becoming sporadic due to sleep schedule
May find it hard to clear the throat as mucus increases
The voice may lower and deepen
May have a wet cough
Vital signs often still good
Nearly always sleeping or resting
May be uncomfortable being moved during clothing or linen changes
Dramatic withering of the legs due to inactivity (skin 'n' bones)
May have a low-grade fever
2-5 Days Prior to Death
Motor movements (eg, waving or hugging) are likely to appear weak
Unable to help the caregiver by leaning or moving during linen changes
Bowel activity likely will have stopped
Urine output will lessen considerably
Urine color usually lightens
Very little interaction, often no initiation
Speech may be quite slurred and hard to understand
May sit in the room with others and say nothing for hours
Could be described as "neither here nor there"
Restlessness and agitation give way to calm
Hands and feet may become cool
Forehead and cheeks may be warm or hot
Thighs and abdomen may be warm or hot
Hard to keep the eyelids open, even when awake
May spend a couple of days with the eyes closed, even though still slightly responsive
Minimal interest in food
May turn or clench lips to indicate refusal of food or pills
May seem unaware of how to use a straw
May have had last decent fluid intake
May bring mucus up into the mouth with a productive cough
Last Decadron dose may be administered (either intentionally or due to difficulty of administration)
Some drugs may be given only by suppository or dropper now
Vital signs often still normal, but some report cardiac changes (eg, racing heart)
Final 8-48 Hours
Very difficult to rouse from sleep or elicit a response from
May have no response or only nonverbal communication (eg, winks, waves, or nods)
May seem relaxed and comfortable
Usually very minimal or no urine output
Reaches a point of unresponsive sleep (coma), which can last from 1 hour to most of the day
No longer any involuntary movement during sleep (no fidgets or eye movements)
Mouth may slacken and eyes may remain partially open during sleep, as voluntary muscle control is lost
Vital signs may be OK until just hours before death
Blood pressure may drop significantly
Heart rate may be twice-normal (120-180 beats per minute)
She continues through the final hours and even after, but essentially the patient falls asleep and won't wake up, then fades away. No pain, no mess, no fear.
That is what we're looking at now, what we're waiting for. Most of her symptoms and reactions put us somewhere in the 1-2 weeks range. It isn't an exact science, and even now I still can't decide if sharing this is a good idea or not. I feel all out of good ideas and all I have left differ only in the level of damage they might do. I haven't lost faith; she's going to be okay, and I will see her again. My mom is the most amazing example of charity through action and neither I nor anyone who knows her is concerned about where she's going after this.
It's hard because I don't know how to do this life thing without her. Two months ago we were sitting next to each other on her bed eating lunch and talking about how my sons would come to her house for food when they came to BYU for college, and how I was going to rely on her to spy on my sons' girlfriends for me. We talked about how much fun it would be to have a family reunion at Disneyland. Or anywhere at all.
Case in point- I took a break at the end of that last paragraph because mom woke up. I went in to see her and talk to her and she held out her arm for a hug. While she held me, without having any knowledge of what I was writing about or even doing before, she said, "Ang, I'm sorry this is hard." Then she told me she loved me and she's grateful to be my mom.
I told her not to apologize, that I loved her, and I was so grateful she's my mom and I was proud of her. Still, immediately, when I'm hurting, my mom is there. I can't believe how blessed I have been my whole life to have her on my side, at my back, leading me forward. Most of today I spent with her lying in bed and me slouched down in a comfy chair next to her, holding hands and napping.
Oh, mom, I love you so much.