dementia, general anaesthetic, cancer - please help me think this through

[chocolate-chip chooky]

3 hours ago, PeterPan said:

Are you a religious person? I read a book last year by Joni Erickson Tada on euthanasia and life/death matters. I just had time on my hands and downloaded a slew of her little books to read, one each day. And I think it kind of applies because we have that struggle with how we handle dementia compassionately and what it means to *value life*. If we DON'T do things, does that mean we don't value her life? Does that mean she doesn't have value because she has dementia? 

JET talks about (and the specific term slips my mind right now) the idea of *extraordinary* measures. And she talks about each person with disabilities who faces that wall needing to say for themselves what to them is extraordinary. And I think about people in other times and what would have happened to my people had the same situation occurred in another time? 

I think in general, if someone has made peace with life/death, then taking *extraordinary* measures isn't always what that person wants. 

I don't know where that's going, because I don't think it's extraordinary or out of range to want to know if your mom could still have good days. I just think, for me as a religious person, I keep it very simple--when I'm dying, let me die. That's it. 

You can call your local hospice and talk it through with them. Are you in the US? Where I live, hospice is paid for by medicare/medicaid and you can choose your provider. They will talk to you at ANY TIME on the phone. You could call them right now!!! I HIGHLY encourage you to call and talk with them. 

When you make the call, hospice in our area typically comes within 2-4 hours to do an intake and the nurse does intake, learning the whole situation, taking vitals, gathering all info. They then talk with their doctor to determine whether the patient qualifies for hospice and arrange all the paperwork. 

Hospice in our area gets you a weekly nurse visit (case manager), monthly chaplain and social worker visits (not forced), and access to medications, supplies, case management, etc. All of this can be accessed 24/7, which might give you peace of mind with your mother's complexity. 

AHD is currently considered as qualifying for palliative, so you're going to do one or the other no matter what. If they do comfort care with the cancer treatment, I *think* you can do that *and* be on hospice. It's a common misconception that hospice means terminating care. Talk with the doctor, but I think you can do comfort care for the cancer, including those IVs if they find a way, AND receive hospice.

 

We're in Australia, so the whole health system is quite different, I assume. The GP was talking about palliative care that happens in the home.

Thank you for all of your input.

[Melissa in Australia]

Huge hugs

You and your family are in my thoughts 

 

[chocolate-chip chooky]

2 hours ago, kbutton said:

Is there a reason they can’t plan for the biopsy to turn into removal surgery all in one encounter? It would be fewer times being put under.

I think that would make a difference in how I sorted it out depending on how the actual recovery from the surgery would go (pain levels, ability to leave the wound alone, etc.). 

 

These are good points that I need to discuss with the specialist.

Post-care following a biopsy/surgery really need to be considered. 

[PeterPan]

1 hour ago, klmama said:

If hospice is what is recommended, ask anyone you know in the medical field or at care homes who they would want providing hospice to their family members.  The quality of care and follow through can vary considerably.  

Interestingly, you can also *change* hospice providers. At one point I thought I was going to have to do this, sigh, and then we got it worked out. So even if you don't have recommendations and just start with the provider you find, you're not absolutely locked in.

[PeterPan]

59 minutes ago, chocolate-chip chooky said:

One of our big concerns is GA and dementia. There are so many stories about GA causing dementia to worsen, speed up etc, on top of the initial delirium concerns (which we've been told could last a month). 

This article is kind of interesting. https://utswmed.org/medblog/postoperative-delirium-seniors-recognizing-symptoms-reducing-risks/  They're suggesting prevention/treatment methods for post-operative delirium in seniors and have a whole list of ideas. It doesn't sound like some of the things that would work for your loved one, but it's still an interesting thing to ask what the treatment options are if the delirium occurs.

Well keep us posted with what the doctor says. I hope s/he is able to give you answers that give you *peace* with the option you choose.  

[Carol in Cal.]

I found with my parents that I could engage them in a conversation about their care decisions, even after they were in medium to severe dementia, and although they would not remember the conversation later, I could get a very clear sense of what they would want ‘in the moment’ which was extremely helpful in making these decisions.  I had to think about how to summarize the situation simply and clearly without slanting toward any outcome, and I had to be ready to say what I thought myself, which sometimes was, I don’t have a strong opinion.  But I felt so much better getting at least this much input from them.

My experience with hospice is that for two of my relatives who had absolutely decided to forego treatments for advancing cancer, it was extremely helpful, but for another one who did not have that kind of diagnostic situation it was mostly counterproductive.  YMMV but my experience is quite recent and current.

Also, if someone goes on hospice, Medicare usually won’t pay for SNF care costs—just for the hospice services and comfort medication.  

I don’t see why they couldn’t give your mom anxiety meds or sedation for the infusions if you went forward with treatment, and also why they would not remove as much as possible in the first procedure to minimize the disruption for her.  And also, I know two people right now with chronic cancer that has been held off from advancing although not cured by infusions for several years, and the infusions are not physically drastic like chemo.  So I do think that treatment in this case is worth considering.  One of the reasons I feel that way is that right on your nose seems like it would be very difficult place to have cancer advancing from, uncomfortable, accessible, miserable.  

[crazyforlatin]

8 hours ago, Drama Llama said:

I am so sorry you are facing this. I think you should ask what treatment would be like if they found cancer.  Is it something you would put her through?  Chemo can be brutal.  

My fil had chemo at 82 and it was very difficult on his body. He went through several rounds. He made the decision to stop 2 years ago. He could have lived longer if he had continued but he reached a point he felt he was ready to die. It must have been difficult for my mil, but he wanted to spend more quality time with her than being constantly sick.

[Pawz4me]

2 hours ago, crazyforlatin said:

My fil had chemo at 82 and it was very difficult on his body. He went through several rounds. He made the decision to stop 2 years ago. He could have lived longer if he had continued but he reached a point he felt he was ready to die. It must have been difficult for my mil, but he wanted to spend more quality time with her than being constantly sick.

Just using this as jumping off-- The OP mentioned immunotherapy, which I believe has become standard of care/first line treatment for melanoma. It's generally much (much much much) easier to tolerate than traditional cytotoxic chemotherapy. When DH was on immunotherapy other than the tiniest bit of extra fatigue he had no noticeable side effects at all. The downside of immunotherapy is that it can trigger all sorts of AI diseases, and unfortunately once triggered they sometimes don't go away, even if the immunotherapy treatment is stopped. I don't know off the top of my head what the actual risk of that is, though. My impression is that it's fairly low. But all that is moot if the OP doesn't think her mother would be able to tolerate sitting an hour or two every few weeks for an infusion.

[Carrie12345]

Without reading ahead…

My mom and aunts had to make this (anesthesia) decision for my grandmother. In her case, it was for an eye surgery. She had had an accident long before that took the sight from her other eye, so the decision was to go ahead for her quality of life.

From what I remember, the appointments were incredibly stressful for her, which was a big drawback, obviously. But we would all say worth it.  
I can’t say whether or not it worsened her mental status compared to not doing it, because she continued to progress for the next many years before she passed, which would be expected anyway. But when a second eye surgery was recommended several years later and she had progressed further, the decision was that it would not be beneficial to the extent it was the first time.

There is no easy or right answer, so please don’t pressure yourself to find it. Whatever your family decides in love will be the best for the one you love. 

[Navymom]

I lost my84 yo mom on Saturday. This is all very fresh for me

My mom also had dementia. She had, what was supposed to be a very simple procedure (ERCP) to remove gall stones the beginning of May.

The dr. ended up having to do it 3 times to stop internal bleeding, so 3 days in a row she was under GA. First time to remove stones, 2nd time to stop bleeding and insert stent, 3rd time to readjust the stent as it had moved and stop bleeding. She ended up needing 2 units of blood.  We refused a thoracentesis at the hospital, but she was supposed to return to have the stent removed and her gall bladder at a later date.

After all of this she was incredibly weak, unable to walk and very confused.

Previous to this hospital stay the dementia was defiantly getting worse but she was enjoying meals, visits, activities, etc. and walked around the facility easily with her walker.

When she returned to the nursing home she was very confused and disoriented. She did not understand that she was not able to walk on her own and didn't remember how to use the call button for help.

The next day she fell getting out of bed on her own and broke her hip. At this point we decided on Hospice care.

I don't really know what we would/should have done differently. There is no way to predict how an individual will come through even the simplest of procedures. What should have been simple turned into a nightmare month and ultimately her death. 

Prayers and peace to you as you navigate this. It is incredibly hard.

 

 

 

 

 

 

[barnwife]

@Navymom I'm sorry for your loss. 

[Tenaj]

We just went through this decision for my Aunt regarding hip replacement surgery.  The situation is ongoing as she had surgery on May 29th.  She was in the hospital for five days post surgery and did remarkably well mentally.  She is in rehab now and I really don't think her mental capacities are much different than before at this point.  She is confused often but she was before surgery, too.  One problem is that she has a catheter and that has been an issue because she forgets that it's there and tugs and pulls on the line.  Yesterday she pulled it completely out!  They are going to leave it out to see if the urine retention issue has resolved.

The main problem we are having is that she is very weak and because of dementia is not really willing to do much rehab.  She was walking before the surgery but now is in a wheelchair most of the time.  I'm hoping that changes with time but we don't know. 

One good thing is that she will be remaining in a dementia/assisted living situation fulltime.  The surgery has made this transition much easier for her to accept.

[Carol in Cal.]

NavyMom, I’m very sorry for your loss.  If it’s any consolation, gall bladder attacks are extremely painful, and pain meds don’t mitigate that all that much, speaking from personal experience.  I doubt that your mom could have been kept comfortable with the surgery.

[EKS]

14 hours ago, chocolate-chip chooky said:

The only treatment option would be immunotherapy via monthly infusions. This also would be very difficult/traumatic for our mother (and everyone involved).

When it works, immunotherapy for SCC can be curative, FWIW.

[chocolate-chip chooky]

10 hours ago, Pawz4me said:

Just using this as jumping off-- The OP mentioned immunotherapy, which I believe has become standard of care/first line treatment for melanoma. It's generally much (much much much) easier to tolerate than traditional cytotoxic chemotherapy. When DH was on immunotherapy other than the tiniest bit of extra fatigue he had no noticeable side effects at all. The downside of immunotherapy is that it can trigger all sorts of AI diseases, and unfortunately once triggered they sometimes don't go away, even if the immunotherapy treatment is stopped. I don't know off the top of my head what the actual risk of that is, though. My impression is that it's fairly low. But all that is moot if the OP doesn't think her mother would be able to tolerate sitting an hour or two every few weeks for an infusion.

Yes, this is correct.

Chemo is not even an option on the table at all.

Immunotherapy via infusion is an option (if it's melanoma), but would be very very difficult - getting in and out of cars, being in public places, being in busy places, being in loud places, having to follow instructions, having to sit still etc.  My mum can be noncompliant for simple things in her familiar settings, so this just seems unfeasible. 

[chocolate-chip chooky]

9 hours ago, Navymom said:

I lost my84 yo mom on Saturday. This is all very fresh for me

My mom also had dementia. She had, what was supposed to be a very simple procedure (ERCP) to remove gall stones the beginning of May.

The dr. ended up having to do it 3 times to stop internal bleeding, so 3 days in a row she was under GA. First time to remove stones, 2nd time to stop bleeding and insert stent, 3rd time to readjust the stent as it had moved and stop bleeding. She ended up needing 2 units of blood.  We refused a thoracentesis at the hospital, but she was supposed to return to have the stent removed and her gall bladder at a later date.

After all of this she was incredibly weak, unable to walk and very confused.

Previous to this hospital stay the dementia was defiantly getting worse but she was enjoying meals, visits, activities, etc. and walked around the facility easily with her walker.

When she returned to the nursing home she was very confused and disoriented. She did not understand that she was not able to walk on her own and didn't remember how to use the call button for help.

The next day she fell getting out of bed on her own and broke her hip. At this point we decided on Hospice care.

I don't really know what we would/should have done differently. There is no way to predict how an individual will come through even the simplest of procedures. What should have been simple turned into a nightmare month and ultimately her death. 

Prayers and peace to you as you navigate this. It is incredibly hard.

 

 

 

 

 

 

I'm so sorry. Thank you for sharing this. Thinking of you.

[chocolate-chip chooky]

6 hours ago, EKS said:

When it works, immunotherapy for SCC can be curative, FWIW.

Interestingly, immunotherapy was only mentioned for melanoma. 

If it's SCC, the only possible treatment is to cut it out and then wait, as far as I know. 

I have another appointment with the specialist today, so I'll be clarifying a few things.

[EKS]

10 minutes ago, chocolate-chip chooky said:

If it's SCC, the only possible treatment is to cut it out and then wait, as far as I know. 

SCC can definitely be treated with immunotherapy.

In the case I was involved with the person was in a clinical trial for cemiplimab (Libtayo).  This was for stage 3 disease.

Edited July 1 by EKS

[bookbard]

Good luck today. Hopefully they make things clearer for you. It really is hard - this whole period of life. 

[wathe]

On 6/30/2024 at 11:12 PM, chocolate-chip chooky said:

Thank you very much for joining the conversation.

One of our big concerns is GA and dementia. There are so many stories about GA causing dementia to worsen, speed up etc, on top of the initial delirium concerns (which we've been told could last a month). 

 

It's a tough choice.  It's true that post-anesthetic delirium is a serious, potentially life-threatening, problem, and that dementia increases that risk.  It's also true that some people with dementia never return to their pre-anesthetic baseline. It's also true that foregoing a biopsy will eliminate active treatment options, and may even limit palliation (harder to anticipate the course of illness without a specific diagnosis).  It's a matter of which alternative is the most acceptable (or least objectionable).  These decisions are really difficult.

Would your mother feel that diagnostic clarity, prognosis leading to potential active treatment options are worth the delirium risk?  Then do the biopsy

Would your mother feel that diagnostic clarity, prognosis leading to potential active treatment options are not worth the risk? Would acceleration of dementia be absolutely unacceptable?  Would she decline active treatment no matter what?  Be comfortable with diagnositc uncertainty? Then decline the biopsy.

We live in a culture that has normalized medical intervention.  There is pressure to do all the things.  It really is OK to embrace a palliative approach and forego the biopsy if that's what's most in line with your mother's values and goals. 

[chocolate-chip chooky]

Thank you so very much to everyone who has replied.

I really appreciate all of the input and advice and the sharing of experiences.

I had a long chat with the ENT surgeon yesterday, which I prefaced with 'we want to make the wisest and kindest decisions, and we want these decisions to honour our mum's AHD as best as possible'.

We have another appointment with the GP later this week, so we'll clarify a few things then, but the ENT recommends no biopsy at this stage, for a number of reasons. 

The ENT gave me so much time and was so attentive and kind and really frank, all of which I really needed and appreciated.

 

I really appreciate this community here. Thank you for your kindness.

[Ottakee]

1 hour ago, chocolate-chip chooky said:

Thank you so very much to everyone who has replied.

I really appreciate all of the input and advice and the sharing of experiences.

I had a long chat with the ENT surgeon yesterday, which I prefaced with 'we want to make the wisest and kindest decisions, and we want these decisions to honour our mum's AHD as best as possible'.

We have another appointment with the GP later this week, so we'll clarify a few things then, but the ENT recommends no biopsy at this stage, for a number of reasons. 

The ENT gave me so much time and was so attentive and kind and really frank, all of which I really needed and appreciated.

 

I really appreciate this community here. Thank you for your kindness.

Sounds like a good appointment.  I am sure the ENT was very glad you were ready to have frank conversations about this.

A friend of mine is a hospitalize in ICU and said she often has to talk to families who want everything possible to be done, even when it might not honor the patients wishes and/or it would only prolong death, not help them have a longer, better life.

[Drama Llama]

4 hours ago, chocolate-chip chooky said:

Thank you so very much to everyone who has replied.

I really appreciate all of the input and advice and the sharing of experiences.

I had a long chat with the ENT surgeon yesterday, which I prefaced with 'we want to make the wisest and kindest decisions, and we want these decisions to honour our mum's AHD as best as possible'.

We have another appointment with the GP later this week, so we'll clarify a few things then, but the ENT recommends no biopsy at this stage, for a number of reasons. 

The ENT gave me so much time and was so attentive and kind and really frank, all of which I really needed and appreciated.

 

I really appreciate this community here. Thank you for your kindness.

I'm glad you got the time you needed.  But I'm sure that's hard to hear even if you suspected it.  I am so sorry you are facing this situation.  

[livetoread]

FWIW, my MIL was in her upper 90s with dementia when she had a pacemaker installed. She also had a hernia repair a few years before that. Both times she came out of GA with no discernible acceleration in her dementia. She was probably more the exception, and it sounds like you are developing a course of action that wouldn't involve GA, but just wanted to put that out there anyway.