Is my mom experiencing "Terminal" delirium?

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 Answer

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.