Back With an Update

By Karen

Never-ending lockdown has made time meaningless to me (whatever happened to 2021?). I realized my dates were off in the previous post about my mother. She actually went into the hospital on Tuesday, January 25, and had surgery on Wednesday, January 26.

Since then, it feels like it’s been six long, stressful months, not one.

The surgery removed part of her colon around a large tumor. Because it had spread to only four lymph nodes, the surgeon held out the possibility that she “may” have gotten it all, although it was labeled stage 3.

Two days post-op in the hospital, my mother couldn’t/wouldn’t do what was expected; namely, walk, use the toilet, take a shower or eat. After several more days, she did sit in a chair and brush her teeth into a cup.

On Friday, February 4, my father went to visit and found the nurses kicking her out without notifying us she was being discharged. I think they’d had enough of her (and Medicare reimbursement was probably exhausted). I dashed over to help and we got her home.

Our biggest family challenge now is my mother’s no-can-do attitude. Before this, she was playing tennis, driving, shopping and generally doing her thing, although eating suspiciously little and losing a lot of weight.

She hates doctors, has never been seriously ill before (I know, amazing at 84, right?), nor ever had surgery that wasn’t elective. If she ever suspected her plumbing was wonky, she wasn’t talking.

Nearly four weeks post-op, she still eats only a few hundred calories a day, if that. She’s afraid she’ll vomit, but she doesn’t. An appetite prescription isn’t helping much.

She’s too weak and unsteady to get around without a walker. She reacts to touches like she’s been hit with a baseball bat. She should be well on the mend, but says she feels worse every day and we just “don’t understand.”

She’s probably a candidate for chemo (maybe even in convenient pill form), but not as long as she’s so weak from starvation.

My father, sister and I are doing all we can, but the best intentions are useless without cooperation.

On a lighter note, things around Cats Working are fine (although the kitchen faucet is dripping and driving me crazy). Tony says, “Hi!” from his favorite perch…

Max was grouchy because I woke him for a photo op from his mid-morning siesta…

And Roc is his usual crazy self…

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24 Responses to Back With an Update

  1. Donna says:

    God Almighty I am so sorry Karen! I’m praying your mom will feel better (and begin to cooperate)
    The kitties look so handsome!

  2. catsworking says:

    Thanks, Donna. This is all very frustrating because there’s no apparent medical reason for it.

    The cat frat is always the bright spot of my day, even when they go nuts.

    Last week, Roc knocked over — AGAIN — a CD bookcase that stood next to the TV and tore a another big gash in the drywall behind the TV. It’s in the same spot where I had paid $$ to repair the first huge hole he made the same way. The CD case is now by the fireplace where it can’t hit any walls.

  3. Lorraine says:

    Sorry to hear about your mom. Is she getting enough pain medication, it does not sound like it. Hugs.

  4. takouris says:

    I’m going through the same or similar with my 89-year old mother. Diagnosed with end stage renal failure in December and abruptly discharged from the rehab facility she was living at earlier this month. She’s verbally abusive to my husband and I and last week I really wanted to hurt myself. Caregivers don’t get enough support. We need to lean on each other.

  5. catsworking says:

    Lorraine, she had pain meds right after surgery, and then got some pills after she went home, but said they did nothing. Nothing does anything. She complains of pain, but when asked where it is, can’t say. She makes faces and acts like she hurts from head to toe, which isn’t medically feasible.

  6. catsworking says:

    takouris, I am so sorry for what you’re going through. My mother has always saved her abuse for the family (as opposed to asserting herself with the clients who really pissed her off in the first place), but it’s gotten worse over the past few years. Say the least little thing she doesn’t like and she immediately shifts into hostility and sarcasm.

    I’ve taken up meditating every morning with an app called “Calm” and it really seems to help me not lose my shit over what’s happening. I remind myself to breathe and it has nothing to to with any of us. If we were different people, she’d behave exactly the same way.

    Interestingly, she’s very docile and cooperative with outsiders like the occupational therapist and the doctors. They say, “You need to eat.” She responds, “I’ll try.”

    Then we say, “You need to eat. You said you’ll try.” She yells, “I CAN’T eat! You don’t understand!”

    We’ve been going in circles with this. Every time I go over there, I expect her to look a little better and be doing a bit more for herself, but four weeks later, she still looks and acts like she just rolled out of the OR.

  7. Leah says:

    I’m so sorry Karen. Many hopes your Mom will get better soon.

  8. Lorraine says:

    She sounds depressed with good cause.

  9. catsworking says:

    Thanks, Leah and Lorraine. Agree she’s probably depressed, although as cancer diagnoses go, hers was relatively positive. The surgeon also said it was slow-growing. I think there are other neurological issues at play here as well. It’s said that older people sometimes have very bad reactions to being under anesthesia for long, and her surgery took about three hours.

  10. Corinna says:

    Hope all goes well in time with your mother . Hang in there

  11. Mary Hunter says:

    Karen,
    I’ am so very sorry for your mom, you and your family. It sounds really difficult. My own mother can really be a bit of a pill, but nothing like that. The meditation sounds like a great idea. I’ll say a prayer that her health returns and she’s back to her active life. Take care and thanks for the fun pics of the cats.

  12. catsworking says:

    Corinna and Mary, thank you for the well wishes.

    I also use the Calm app to fall asleep. It has “bedtime stories” read by people with soothing voices. I’m usually fast asleep before the story ends. I also like to fall asleep to the sound of waves, which it also has, as well as many other white noises.

  13. MorganLf says:

    Oh Karen I’ve been MIA for months and just checked in,what a nightmare. I truly emphasize. I watched mom die of cancer at only 66 and dad also 10 years later… all of it unspeakable, awful. My folks were not difficult…let’s just say I didn’t cope well and was to my everlasting guilt, probably no help.
    My understanding is if you can get your mom released directly to a rehab facility from the hospital Medicare covers it. Takes a lot of doing tho as friends have told me.
    I’m beyond sad for you, but as you’ve depicted your mom over the years, her personality has remained intact. The calm app is good, even better with Xanax.
    Take care and write me if you need a shoulder…

  14. catsworking says:

    Morgan, thank you for your empathy. So sorry to learn about your parents.

    The hospital wouldn’t release her to a rehab facility because, according to her condition going in and the outcome, she should have been able to walk unassisted and eat without any dietary restrictions. Lying in bed moaning has been her choice because there’s no medical reason for it.

    I’ve got to go over and see her in a few minutes to help with a video appointment with the surgeon. I haven’t done anything this week for her. I made her some tiny pasta with butter last time I was there, thinking it was the blandest and easiest thing she could eat, but she refused to touch it. I made her hard-boiled eggs, she says she only likes them fried sunnyside up.

    My sister has gone to some expense and done things (like install a bidet to help with hygiene) that both parents have rebuffed as absurd and unnecessary.

    You’re right. Her personality is remaining consistent.

  15. Margeaux says:

    Karen,
    I’m just reading your post about your mother
    and I’m so, so sorry to hear about this. My father suffered from this condition. So my heart really goes out to you, as I know how it affects the entire family, especially the caregivers.
    I will keep you and your family in my meditations.
    Big Hugs,
    Margeaux

  16. catsworking says:

    Margeaux, thank you so much for your hugs. 🙂

    I saw my mother yesterday and we spoke to her surgeon. My mother has lost 10 lbs. since coming home from the hospital on Feb. 4 (she’s down to 88), so the surgeon wants to hook her up with a palliative care person rather than the oncologist, because cancer treatment is the least of our worries right now.

    The pain she complains of sounds like acid reflux, so I ran out and bought her some Pepcid AC, which works immediately for me and I have severe GERD. I gave her one and asked a while later if her throat felt any better. “No.”

    She was walking around the house slamming the walker across every threshold and her gait was steady, but she says she’s too weak to do anything, has lately begun fixating on how many weeks she’s gone without eating like she’s in a contest, but dismisses every plea to eat something, saying she “can’t.”

  17. Anita says:

    Karen, I feel so badly for you. My sister was diagnosed with Stage II colon cancer in July and really dodged a huge bullet. It had not metastasized and she didn’t need chemo. She has a very difficult personality and I actually had not spoken to her in 4 years and my nephew called to tell me she was in the hospital. These family situations can be so fraught with drama and emotion.

    My mother-in-law went through a couple year battle with cancer that had spread to her stomach and started throwing up and couldn’t eat. They did surgery, chemo, etc and she went into remission then it came back. She decided she was done and starved herself to death.

    She was already extremely thin but it still took 6 weeks for her to pass. I hope your Mom doesn’t go that route. I had nightmares about that and still do.

    You are in for such a rocky ride the next few weeks/months. Please know we all adore you and thinking of you and hope the kitties give you lots of comfort.

  18. Margeaux says:

    Gosh Karen,
    That’s really rough! When my dad was going through this, he wasn’t eating as much as he once did. I used to tell my mom to give him something, but not to overwhelm him like with a full plate. But it really seems as if your mom’s appetite has shut down. I’m sure there’s an inability to digest many foods for people with colon cancer. Do you think she’d drink, something such as Ensure?

  19. catsworking says:

    Anita, the reason I decided to share this story on the blog was that I was hoping for exactly the feedback I’m getting in stories and advice (the well wishes are most welcome as well). Your sister’s story just hit me between the eyes. I have not heard the word “metastasized” and now I’m wondering what stage 3 really means. Could the cancer be in her stomach and the surgeon didn’t see it?

    My mother still seems to be in denial that she even has cancer and keeps saying they don’t really know yet, although she’s been told repeatedly. She always said the same thing about her brother, who absolutely died of cancer, esophageal or throat, I believe.

    Because of the good physical shape she was in before the surgery, and the prognosis that the cancer was slow-growing, probably hadn’t spread, and was not a death sentence, 31 days after surgery she should be well on the mend, but she’s not because she refuses to be helped by anything or anybody.

    My sister was more upset initially than I was, because she sat with my mother for a good 7 hours in the ER before they admitted her, and they talked about a lot of stuff. But in the aftermath, she’s coming around to my way of thinking that so much of this is unnecessary suffering and my mother is, on some sick level, enjoying her last turn as the center of attention.

    During this time, I have noticed that Roc has been particularly fixated on me and meows his head off if he realizes I’ve left the room and he doesn’t know where I am. And Tony lately has been spending most of the night on my bed, sleeping between my legs, which is a first. AND Max has been hanging out on the couch evenings right beside me to watch TV, which he has NEVER done. Maybe they sense something’s up.

  20. catsworking says:

    Margeaux, my mother hasn’t been eating for such a long time, her stomach is probably the size of a walnut, so she’s incapable of eating a big meal. They were bringing her ridiculous full plates of awful cold meals in the hospital that she never touched. She’d maybe eat the fruit cup.

    Once home, the doctor said to eat small meals throughout the day. My mother responded with, “I eat TWICE a day!” (breakfast and lunch; she had stopped cooking or eating dinner a while back, which is why I feel sure she knew something was wrong and was trying to hide it)

    The doctor last week told her to drink 2-3 Ensures or Pedia drinks a day. She’s drinking about 1/2 of one a day, but, she says, “I drink a lot of water,” as if it’s the same thing. She has an anorexic mindset.

    And it’s like she’s in automatic defiance mode and will do the opposite of what anybody tells her, although to outsiders’ faces she’ll be sweet and say she’ll try. If the family tries to get her to eat or do anything, she gets snarky and yells, “You don’t UNDERSTAND!”

    I think she’s heading for organ failure. At that point, we’ll have to turn her over to professionals and it will be out of our hands. She doesn’t want a feeding tube or anything drastic done. In fact, she’s always said, “If anything goes wrong with me, just shoot me.” (None of us owns a gun.)

    With her, it’s always been her way or the highway, so she’s being consistent, even if it means throwing away whatever good years she may have had left and putting the family through hell.

  21. Anita says:

    Karen, when my mother-in-law decided starvation instead of dealing with more cancer treatments she consulted her priest and others. She was never overweight but loved to eat and drink. A nightly cocktail included. She felt those two things had been taken away from her and she didn’t want to be a burden on her family. Her husband had passed a few years before and she felt like she had a good life, so bye bye world.

    She was a control freak too. I did feel that the cancer and surgery did something to her brain though. She confronted me about not being a Catholic after 20 years of being married to her son, and she would have never done that before. I always thought she was ok with it. Guess not!

    Even thought it was her decision and we all agreed, it was still awful. She went through the delirious stage for weeks until she finally dropped into a coma and died a week later. Like I said I had nightmares. If I have a disease I will move to a state that has the kill pill. I will not do what she did.

    But, I have to agree with you. I looked up Stage 3 colon cancer and it doesn’t appear to have metastasized. It has moved to the lymph nodes like you said and not beyond. Like you said, this is probably more mental than physical.

    This really has just been a crappy couple of years hasn’t it?

  22. catsworking says:

    Anita, you said a mouthful. Trump, COVID, GOP going full treason, my mother, and now Ukraine. I may have left a few disasters out. Who can keep track of them all?

    Thanks for doing the research on the cancer. I haven’t really done any because this hasn’t been a matter of trying to find out what can be done, clinical trials, etc. It’s all felt pretty straightforward, and her noncooperation has eliminated virtually all of her options.

    She was showing signs of dementia before, but the surgery definitely brought it out completely. More so being under deep anesthesia for hours, rather than the procedure itself, is how I understand it. It can really do a number on older people.

    As for starving, she’s much further down that path than your MIL was, it sounds. She’s got no body fat left and is always freezing. And your MIL seems to have gone about it in a considered way. My mother reminds me of the many cats I’ve had in the final stages of kidney failure. Nothing tastes right to them and they stop eating, usually reluctantly. They don’t know what’s happening, they can’t tell you how they feel. But somehow they let you know when they’ve reached the end and want to go.

    My mother can talk and knows what’s going on (although she rejects most of it), and she could eat, even if it doesn’t taste great. She just won’t.

    Yesterday my father sent us an email saying she did “a little better” with eating, whatever the fuck that means. Unless we’re right there and see what’s going on, the information is sketchy.

    If she woke up today and decided she wanted to get better, she certainly could, I believe. But it would be a miracle.

  23. bassgirl23 says:

    Karen, so sorry you’re going through all this. I deal with families going through this fairly often through my work, and it does sound like what’s happening with your mom is a combination of mental and physical issues, but her attitude may be contributing more to her decline than the actual cancer.

    She may be very frightened about loss of control / agency / independence given what’s happened to her. I wonder if her not eating, however misguided, is her way of regaining that control because she’s feeling helpless right now? She probably knew (on some level) it’s not helping her recovery, but it was all she could do in order to cope. At this point lack of nutrition / starvation may be affecting her ability to backtrack this (even if she wanted to).

    Does the hospital offer any kind of social worker or patient advocate / neutral third party who could meet with her (alone, without family) and see if they can get to the root of what’s going on? Sometimes patients will open up to and listen to someone who is on the level of a nurse or doctor (in their eyes) as long as they don’t feel like they’re being pressured.

    Many times I’ve seen family members struggling with dealing with an elderly parent who seems to be avoiding all the doctor’s recommendations and it turns out they’re just terrified because they don’t want certain situations to happen, or don’t understand the full picture, but don’t know how to articulate that (or who to tell it to even if they do). For some reason it’s really difficult for many elderly people to tell this to a family member.

    Not sure how it works in the USA but in Canada the patient advocates are usually private nurses with special training. They’re amazing at communicating among the doctors, the patient and the family and how to coordinate treatment and be an effective voice for the patient.

    I’m glad you have the fur kids to help you through some of this – they’re great distractions, aren’t they? Take care and hope things get easier for you and your family.

  24. catsworking says:

    bassgirl, thanks so much for all the advice. It’s been about 6 weeks since the surgery and this week she’s behaving a lot stronger and eating marginally more. Yesterday we saw a palliative care nurse and while waiting, my mother told me she thought she could walk without a walker, but was afraid to.

    The previous day, my sister got her to take the walker into the shower so she could stand up and mostly bathe herself (my sister washed her hair), which was a first.

    I think it was the surgeon who said during the week after surgery and my mother was in the hospital that it can take 6 weeks to feel better, and I suspect she latched onto that number. She’s always talking about what day it is, or what the date is, so she’s obsessing about time. And now 6 weeks later, she’s doing better.

    She’s always been negative and bitchy, and the anorexia began before the pandemic. She lost her sense of smell (a sign of dementia) several years ago, and I’m sure it affected her appetite, although she says she can still taste.

    In the U.S., the kind of third party you’re talking about is usually called a patient navigator and it depends on the hospital whether they have them or not. Our system is so fragmented and the quality of care so vastly different from place to place, it’s a real crapshoot to get the care you need. The nearest hospital to my parents is a shitty one, yet part of the vastly most expensive hospital system in Richmond. Go figure.

    Different facilities don’t share medical records. Yesterday I learned the cancer center where she’s going now has no access to the medical records and history of her general doctor, whose office is RIGHT ACROSS THE PARKING LOT.

    She’s started swelling in her feet, and the nurse told her she needs to get up and walk more. It’s up to her to do the work. She needs to eat more than twice a day. Maybe as she feels better she’ll be more motivated.

    She did put her real estate license on inactive status and said she’s done with it, which would be great, since it was her biggest source of bitching.

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