Is my mom experiencing "Terminal" delirium?

21 answers | Last updated: Sep 18, 2016
All4mom2 asked...

It's a long story, but my 93-year-old mother, who has multiple comorbidities, ended up in the hospital with "the perfect storm" of pneumonia, heart failure, renal impairment, and dementia. She was quite functional before this (ambulatory on a walker, toileting herself, eating pretty well, enjoying her sleep, etc.), but has now been in a series of hospitals with complications, relapses, and an UNENDING agitation for which nothing seems to work. It didn't help that a nephology consultant took her OFF the Remeron which was keeping her on an even keeL re: mood/behavior (because it was "nephrotoxic"; specialists care only about their specialty). Bottom line: she in now in an ICU and refusing all treatment because of a delirium brought on by strange surroundings, strange sounds (she's legally blind, besides), and being awakened every two hours every night for a month for a pill, a neb treatment, a vitals check, etc., etc., etc. She's at the point of just cursing at or hitting anyone who comes near her and thus CANNOT be treated in order to get well enough to be discharged to home, which is the ONLY place the delirium has a chance of naturally ending. And NO, we do not want her on hospice (despite the hospital pushing us that way); her conditions are not "terminal"; it isn't cancer or COPD; they've been cured before. However, the agitation MAY be terminal if nothing they try (Resperdone, Zyprexa) works. She had this when hospitalized two years ago, but coming home cured it. Any advice? No nursing home will take her (she's had to be put in restraints), and they won't release her! It's torture to see her suffering this way, but ending her life is not an option for us morally.

Expert Answers

Ron Kauffman is a certified senior advisor (CSA), senior lifestyle radio host, syndicated newspaper columnist, and the author of Caring for a Loved One With Alzheimer's Disease. In addition, Kauffman is also the primary caregiver for his mother, who has Alzheimer's.

Dear All4Mom2:

What a sad heart goes out to you.

I'm afraid you're not going to like my response to your question.

My experience in these situations is that your 93-year old mother is making herself as clear as she possibly can under these difficult circumstances. She seems to have a level of awareness regarding her multiple conditions; she knows that her age and her rapidly declining condition are contributing to an almost non-existent quality of life and she's clearly signaling what she doesn't want.

Your mother, in my opinion is asking to be allowed to have the control and dignity to live out her days as she chooses - with no further treatment or intervention for a "cure."

You, on the other hand, are responding exactly as a loving daughter might normally do in a situation where letting go is more painful than asking that your mother to endure even more treatment.

I don't see where your approach for continued treatment is going to lead to a better quality of life. It seems that based on your love for her, your going to do whatever it takes to keep her heart beating. I'm sorry but that's not living, that's being kept alive. It certainly is not a quality of life that I believe many people, perhaps even you, would choose for yourself.

Your question didn't indicate if your mother had ever completed a Living Will. If she did so, did she request to be kept alive "at all costs," no matter what her quality of life? If she didn't ask for heroics, why are you seeking heroic measures when there are other very good options?

I gather from your refusal to consider Hospice that you may believe that by involving Hospice you are pushing your mother toward a faster death. Nothing could be further from the truth.

I've not assessed your mother, but I'd be willing to bet that her physician would find her suitable for referral to Hospice under the condition known as "failure to thrive" or one of the many other illnesses from which your mother currently suffers.

The role of Hospice is not to hasten your mother's death, but to provide palliative care - pain management - to keep her pain free and comfortable. These services can be provided in her own home, in a Hospice bed at the hospital, or at the Hospice facility itself if they have beds available.

Another role of Hospice is one of support for the family during times as trying and stressful as these. Your mother is extremely ill, very elderly, and seems to be sending "Do Not Treat Me" signals based on the behaviors you've reported, regardless of why you believe she is so resistant to the treatments being attempted.

I strongly suggest you do yourself a very big favor and at least talk with Hospice. They don't step into cases only at the "last minute." They also help patients and families prepare for the final journey of a loved one, sometimes months before a death is imminent.

In my own family, my mother's husband was on Hospice for many, many months before he passed away. Hospice helped him with his pain, and brought a great deal of support and comfort to my mom and our family by being with us for the entire journey.

Knowing and fully understanding the role that Hospice can play in your mother's life as well as in support of your personal pain, is a wonderful first step. I also believe that doing so will help relieve you of a lot of the stress and anguish I hear and feel in your words.

There are many more reasons to talk with Hospice - from financial, to planning, to just getting an objective opinion - but space limitations don't allow me to go into all of them in my response.

Think about your mother's wishes, and ask yourself if it were you lying in that hospital bed, with everything going on that you have described, what do you honestly believe you would want if you as the patient could have this conversation with your daughter as the caregiver?

Would you really choose to continue a life with pain and minimal quality, or would you ask your daughter to keep you pain-free and comfortable? Would you want to be given the option to spend your remaining days at home surrounded by family and the support team from Hospice so that you might spend your final days with dignity?

The way I see it, from everything you wrote, I'd choose Hospice. But truthfully, the choice is yours. I hope you make the right one for your mother and for you.

Best of luck and may God Bless you.

Community Answers

All4mom2 answered...

I would not necessarily be opposed to hospice if no further quality of life were possible, but we are not clear on that; furthermore, our family values are very much "pro-life"; we are adamently against any form of euthanasia or assisted suicide or hastening of death (even withholding of treatment, nutrition, fluid, etc.) to the point where my mother did NOT want a "living will" or "DNR." I DO want her at home and pain-free, but the hospital refuses to release her until she is "better." How is she going to get "better" if she's dying and, if she's not, how is she going to get better being tortured in an ICU? I honestly believe they are pushing us to enroll her in their own in-house hospice unit, which we DON'T want; if she's dying or even just wants to be left alone, we ALL wish for her to be home. I can well understand her being sick of being messed with after a MONTH; I'm not convinced that means she wants to die or wouldn't want to get well or at least better if that were possible. Old age is not as clear-cut a situation as a terminal cancer, emphysema, etc. All I really hope for her is to come home to her own beloved surroundings, sleep again in her own comfortable bed through a whole night without being disturbed or stabbed with something, be with her family 24/7 instead of during "visiting hours" in the ICU. We want the same thing: for her pain and torment to end. But how to achieve that is the question if they WON'T release her to home! As for hospice, ours (we have only one in this area) was recently fined for something or other and is famous (infamous) for "taking people out" in a week or two with morphine ODs; there is no flourishing for many months. Even so, I am fully prepared to pursue that if it's the best course for my mother, but we DO want to be together; at present, we are in a Catch-22.

Ron kauffman answered...

You're missing the point about Hospice - THEY DO NOT HASTEN DEATH. They provide great pain management, wonderful family and patient support, and stop all the unnecessary treatments.

Here's what you can cause to occur by telling mom's physician that you want to put mom on Hospice at home:

  1. You mother will immediately be discharged and sent to your home.
  2. Hospice will step in and take ALL NECESSARY STEPS to stop the delirium with medications.
  3. They will treat mom's pain with as much as is required to make her comfortable.
  4. They will, if they offer these additional services, provide music therapy to help with her agitation.
  5. Provide spiritual support if you don't have a clergyman of your faith familiar with the difficult issues of dying.
  6. Help you and your family deal with the inevitability of your mother's passing, whether it be a few weeks, months or even years, as long as she remains qualified for Hospice services.

Since mom cannot communicate clearly or rationally, no one knows if she wishes to die, but she certainly doesn't want to suffer either, and right now, she and you are suffering.

This isn't just about old age, because your mother's symptoms are not at all typical of most very elderly people.

Remember, Hospice is not just for those who are imminent. The hospital and I'm certain your mom's doctor would have no problem in recommending her for Hospice services under "failure to thrive" and Hospice can get involved and deal with the issues that have you most concerned - foremost among them, bringing mom home.

I strongly believe that you will be quite pleased with the approach Hospice can and will take regarding your mother's care. Best of all, it will be back at home, which is what she and you really want so your mom will never face the possibility of dying alone.

Illawarrian answered...

I don't know why you say they won't release her. She hasn't been ordered to stay there by a judge or a court, so why don't you just take her home. They cannot detain someone without a court order.

Ron kauffman answered...

Please remember, you're dealing with a very ill 93-year old, and sometimes you have to give up your wishes and do what's best for the patient. The facility, especially if hospice gets involved, is possibly better able to provide the 24/7 care needed for your mom.

Just pulling her out of the facility because you can may not be the best course of action.

All4mom2 answered...

They won't release her means pulling her out would've been "AMA" or against medical advice, in which case Medicare won't pay the bill -- YOU will (if you have the money, which my mother does)... Obviously, that would wipe her out financially, and that money is intended to pay for HER CARE after she's out of the hospital...

I finally managed to get her transferred (after not one, not two, but THREE heated meetings with the head administrator) to the nearby higher-level hospital, a university medical center, where they fixed her right up. We won't give up on her life prematurely unlike some here, many elsewhere, and society today in general. Thanks, all!

Illawarrian answered...

I'm glad we don't have your health system here in Australia. The idea that they threaten you with not paying the bill if you go against doctors' advice and leave is just terrible, and almost an abuse of human and civil rights. It's forced hospitalization. Anyhow, I'm glad she's been transferred and fixed up.

All4mom2 answered...

I totally agree with you; in fact, I told them: you're holding my mother HOSTAGE! To which they would reply that we're free to leave at any time... It's just that... You know! The bill thing.

We're not totally out of the woods yet (she's currently in a SNF, and I'm not entirely happy with THAT, either), but Zymbalta seems to have the agitation under control at last -- thank goodness -- and her other medical conditions are stable, so we're hoping for home...

Here in America, anyway, it's truly all about "the bottom dollar"...

Daisylady answered...

The concern about taking your mother home without some help is that it could put your mother in an even worse state than she is now. At home without an attending physician at hand to give orders and nurses available 24/7, you will have tons of trouble if your mother ends up needing something and you don't want her to suffer unnecessarily. Will you reasonably be able to take her to all the appointments she might require (including appointments just to adjust her medications), lab draws needed for medical decisions, and any medical procedures and x-rays she may need? What about picking up medications as they might change from week to week? What about using oxygen at home? What if she needs to be suctioned to breathe at home? What if she can't urinate and needs a catheter to drain her bladder?. That is why above they are trying to get her home with help from Hospice. Hospice nurses have a lot of those resources in place to assist. Maybe you would be willing to just meet with a Hospice nurse? I would bet that a Hospice facility that has just been accused of ODing patients would actually be the safest place to trust with a loved one because they would have all kinds of government agencies breathing down their backs with a reputation to regain. I have had experience with Hospice. The first time, my dad actually got off of Hospice when he no longer needed their care because he improved so much. Hospice doesn't mean NO care. Later, Hospice allowed my father to stay home up until just before he died. I had just had surgery myself and I could not have done it without help. You need a backup plan if, God forbid, something happens to you emergently. I used to be an ICU nurse (before kids) and found that even I and my dh (who is also an ICU nurse) could not do it without help. It wasn't that we weren't capable, it was that anytime my dad needed something we needed a resource backing us up with great support and the materials we required. We don't have the equipment that might be needed like a nursing home or hospital does... Hospice was there to catch us when we fell, so to speak. God bless you and your mom. Sometimes the best choices for our parents aren't the ones that are best for us.

*I am not a doctor and am not giving medical advice. Just my own experiences and opinions.

All4mom2 answered...

I suppose it's time for an update! After these horrible hospitalizations and then six AWFUL weeks in a "rehab," I took my mother home -- on a JPEG tube -- against my brother's wishes (he wanted her to remain in long-term care there; didn't think it was possible to care for her at home). That was ten weeks ago... ; /

I'm happy to report that Mom is doing FINE, she's much happier and calmer at home, and so am I! I'm back to working nearly full-time (just using one hour a day in the mornings to get her up and going), I have two CNAs working for us part-time: one during my working hours M-F and a second on weekends so I can run errands and now even get out with friends for some recreation). Otherwise, I care for mom; brother has withdrawn his help, but still visits her once a day, which they both very much enjoy. Mom has savings enough to last a number of years hiring help, hooray.

For medical care, there IS an alternative to hospice, believe it or not (as much as hospice may not want people to know this)... These are in-home medical care companies (different from the "home health" you get after a hospitalization); the patient must be certified homebound and get a referral (ours was actually from home health when that coverage ran out, as did her coverage for "rehab days" in the SNF). There is no "expiration" with this; Medicare covers it as long as needed. It's essentially the same care you'd get from your own doc (in fact, you can keep and visit your own doc 2x/year), except that THEY come to YOU, reducing wear and tear and minimizing the chance of catching bugs, etc.

A nurse-practioner visits under the oversight of a licensed physician; lab tests, even x-rays can be done in the home. They visit routinely every 2-3 months unless called in sooner, in which case someone responds within hours. This provides a great alternative to institutionalization, costly and traumatic ER visits, or the "final passage" which is too often hospice care. I have learned to do both bolus and pump feedings, and she's done very well on this for nearly four months now. Her mental status is IMPROVED.

I'm glad for the chance to catch you all up, and spread the word!!!

No, it's not easy... But it CAN be done. We are "happy at home."

All4mom2 answered...

Incidentally, after the hospitalization in which my mother was essentially being "held captive" in the ICU with the in-house hospice unit (where they very much wanted and pressured me to transfer her since she was "actively dying"; uh, this was now SIX months ago, and she's still alive and doing fine, thank you), we found in the next hospital -- the university hospital -- that my mother was wearing a "pain patch"; apparently someone was dosing her with morphine or an equivalent without my knowledge/permission.

Gee; no wonder she was so out of it (or "obtunded," as they put it)!

Sorry; I think hospice is BIG BUSINESS in this country and getting away with... Well, let's just say with... A lot! Thanks, everyone...

Illawarrian answered...

Thank you for giving us an update. My mother is having 2 weeks respite in a nursing home so I am having a holiday. I think you do need to have a healthy suspicion of hospitals, hospice, medications. pharmaceutical companies and so on. Some people just accept what they are told without question because doctors are gods, apparently.

Daisylady answered...

I, also, do have a healthy suspicion and have quite often advocated strongly in behalf of my parents and past patients. It's good to be questioning, but its also true that many healthcare workers are genuinely trying to do their best job possible, as I believe was Mr. Kauffman's intent above from his experiences (which are not uncommon scenarios). Many do truly care and are not out to hurt your loved one. Corporations are another animal entirely.

All4mom2 answered...

Are you suggesting that Hospice is a "charity"? Not at all... In addition to 100% full reimbursement by Medicare AND Medicaid/private insurances and the many fundraisers they hold (for what, if they're fully reimbursed?), a suspicious -- to me, anyway -- number of patients end up requesting donations on their behalf. Who's pocketing all THAT money? I remain dubious.

But mostly very thankful that my mother is NOT dying but LIVING, thanks not to the Modern Medical Machine, but to God and ME...

Thanks again, too, for all your thoughtful replies. I appreciate it.

Daisylady answered...

I'm not sure who you were asking about Hospice being a charity, but if it was me you were asking, I know that is not the case at all. Hospice gets reimbursed just like any place would.

As for people asking for donations and what they do with the money, I cannot speak for them, nor Hospice fundraisers. It is always wise to consider to whom and for what you are donating.

I was just trying to help you with what I know from my own excruciating experiences. I am sorry that you have had bad experiences with health care providers, et. al., and wish that you did not have to suffer through all you have been through. I didn't mean to upset you, cross you, or anger you in ANY way whatsoever. I am honestly glad to hear that your mother is home and thriving.

All4mom2 answered...

I wasn't asking anyone in particular; just asking in general... :) No worries! I am not upset; I am just (I think appropriately, for a thinking person) skeptical of "easy fixes," especially where precious human life is concerned. So many just want to be done with it. And I'm not speaking of the ill/old person, necessarily, either... : (

Thank you all! I hope my story inspires some to KEEP TRYING...

Daisylady answered...

OK, thanks. We turned ourselves inside out to help my parents in every way possible sometimes even to the detriment of our own family. I lost my daddy two years ago when his poor body couldn't go on any longer. We had to decide over and over what was worth treating for his real benefit and what would make him suffer unnecessarily by doing things that wouldn't make a real difference/improvement for him (although some things were offered to legally cover the hospitals, they weren't necessarily of any benefit, and they had the potential to make him significantly worse). We had been fighting for him to be as well as possible and at home for 15 years.

My mom, age 75, is declining quickly even with the best of care that we stay on top of constantly (sadly, and just currently, by phone). I can't even visit right now because she has started freaking out when she sees me and is destructive and violent after I do visit. I must remind her of "home" when she sees me. She wants me to take her out of there, and she is furious that I don't, although she can't even remember my name (all this is new just this month). She can't live on her own and she ended up inconsolably paranoid living with us when we tried that for six months. She needed a much simpler (she obsessed and panic-d over minutia) and quiet environment than we could provide with our home and lively children (and all her animals we had to take in). We are just doing the best we can day by day and want the very best for her, but her disease is chipping away at her. We want to make sure we are treating whatever we successfully can, but without putting her through unnecessary pain with treatments that won't make any significant difference and may actually harm her. It's all a very tough situation for me to wrap my mind around. Letting go even a little and trusting she is in good hands is almost killing me without being able to see her for myself. In time, maybe I will be able to visit without her getting so upset and out of control.

You sound like a very caring and concerned daughter and it is obvious how much you love your mother. She is blessed to have you.

A grieving caregiver answered...

I am very sad to read these negative remarks about Hospice. They have been invaluable both with my father who died in 1985 and now my husband. Since I became a caregiver several years ago when my husband was diagnosed with dementia, along with multiple heart and other problems, I have read a great deal about people who put their own wishes ahead of the welfare of their loved ones. It can be a huge ego trip or imposition of the caregiver's values above every other consideration, including the best interests of the person they are "caring" for. An example: continuing to feed a person either with a feeding tube or much coaxing, long after the patient stops wanting to eat. The patient often complies just to please the caregiver! It is hard to see a loved one nearing death but it is not the occasion for indulging one's own desires at the expense of the dying person. The smugness of many of the comments is disturbing.

Daisylady answered...

I am so sorry to hear that you have lost your mother!!! I am glad that you got to spend a longer period of time with her and were able to have her at home with you. Thank-you for letting us know and sharing your updates. May God give you all the strength you need to carry on. My mother, too, passed earlier this year and I miss her so much as my best friend. My uncle passed last week unexpectedly and we attended the memorial. It's a heavy heart I'm dragging around these days, but we are not as those without hope that we will see them again.

All4mom2 answered...

I'm so sorry to hear, daisylady! There's no loss like the loss of our mother, and especially when -- through caring for them -- they've become our whole world (as in my case). Life certainly seems empty and meaningless now (from 100 miles an hour day and night to zero), but I share your faith that we'll meet again and know she's in a better place; she gave us many indications that her friends and family were waiting to help her over to the other side, and I know she was finally ready. I do regret that she died in the ICU and not at home but, again, it was the ethical dilemma between not doing enough and doing too much (as well as not knowing what you're into until it's too late to reverse). We pushed the envelope as far as we could, always her expressed wish, and maybe a littler farther than we should have, but it drove home the point that it was truly "time."

I then (having read the book "Caring for the Dead," by Lisa Carlson) took her home, cleaned and dressed her, put her in her own bed that she'd missed for so long (having had to be in a hospital bed for the past 18 months so I could more easily turn/change her), and had a "wake" with the few friends who remained steadfast through this entire process. That did NOT include my brother's wife and kids, by the way, who never even bothered to pick up the phone, much less visit or offer any assistance. Then cremated and back to her home. We'll hold a memorial service next summer with the extended family that lives there in her home state, where her own mother now rests.

Hard to go on, but that's our duty. It was the most fulfilling, rewarding, intense experience of my life, and I know she appreciated it. We must think of THEIR gain rather than OUR loss now.

And a nod to Hospice... They didn't push us into using narcotics (although they kept asking about "pain," which she didn't have) and, renewing her admission status TWICE over that year, enabled us to remain at home with good care once she was no longer eligible for home health... I take back all the nasty things I said about them, although I do still believe they "overdo" and hasten death at times.

Good luck through the first holidays without your dear mother, Daisy, and wish me the same! It'll be hard.

Doing it now answered...

hospice is reimbursed $500 a month by medicare. do you really think that even begins to pay for drugs, supplies, dme equipment rental, and nursing care costs? not hardly. that is why they seek donations.

and, op, your mother might be at home, but it sounds like you are hiring nursing staff and running up medicare bills, as well as spending your moms $ on necessities while you work. not exactly taking care of your mom by yourself.