Life Support Issues/My Mom vs. Hospice Nurse
My 89.5-year-old mom, who resides in her home where she wants to pass, has been under Hospice care for three full weeks. She's been receiving caregiving for several years, and the number of "shifts" has increased over the past three months, as she suddenly in early May started declining rapidly. She could still walk, or shuffle, using only a cane at the start of May but a week later, had lost the strength to do that. For the past four weeks, she has been bed-bound, exhibiting strong evidence of "failure to thrive" (mainly because about 4 or 5 weeks ago she stopped eating solid food, and now subsists only on Ensure, thicker juices, water, and good old Pepsi. Her weight has dropped from 120 pounds to likely the low 90s to upper 80s (she is too weak to be weighed ó her knees wonít lock). Last Wednesday, her newly assigned Hospice nurse declared her mentally unfit to make crucial decisions. The nurse cited three answers to a series of questions that gave her the basis for that diagnosis. Fortunately, a long-time caregiver was present, and she gave me crucial context that paints a radically different picture of what the nurse did. She definitely omitted critical information regarding my mom's answers, which in my opinion demonstrates that she, in general, is mentally sound. Suffice it that when I heard more from the caregiver, I grew suspicious and angry the nurse has an agenda that's not in my mom's best interest; Iíll refrain from getting overly conspiratorial as to what the womanís real agenda is, despite my hunch that somewhere in it money plays a prominent, influencing role. The nurse in a phone call with me insisted rather dictatorially that my mom immediately be placed in a facility where she will receive 24/7 care or increase her caregiving to the same level. Over the past weekend, I've spoken with my mom about all this. She says the nurse "is crazy," which I thought was humorous, and that she adamantly does not want either to be relocated to a facility or increase her care to a full-time amount. She values her privacy tremendously, having lived alone the past 16 years since my dad passed. My younger daughter, not a caregiver, lives in my momís home and reports that caregivers now mostly sit and read, doing very little "care." My mom is open to increasing the care to reduce the interval of time between changing her adult protective wear (she is entirely incontinent now). She does not have any open pressure sores, though a dime-sized red spot on her tail bone is being monitored and treated daily with appropriate creams. She is in a hospital bed with an automatically adjusting air mattress, designed to reduce the formation of pressure sores. In my view, her core personality and cogency are intact. She is simply very tired, preoccupied with her physical decline and the process of slowing dying, and not wanting to be bothered by what she called pointless questions from the nurse. In other words, she was impatient and cranky when the nurse besieged her with that series of questions, which my mom couldn't have cared less about. Sure, her short-term memory has seen better days, but if I were feeling perpetually ill and exhausted, I probably would care less and less about things of this life, which ďhealthyĒ people deem normal. She speaks often now of my older brother, my older sister, and my dad, all deceased. My older sister lived only one week, and was my parents firstborn. Never has my mom spoken of her unless specifically asked. And she refers to her by her full name, as well, something she has never done before (without being asked first). My mom does not seem fearful of whatís happening to her body, but will on occasion become agitated when caregivers want to change her, barking at them to leave her alone. Apparently, she feels pain when lifted and/or rolled, essential parts of the changing procedure. An Rx of Haldol is available from Hospice to help calm her at these times, but has so far not been regularly given before initiating a clothing and/or bedding change. At times, she just doesn't want to be "pestered" by anyone. So, with this loquacious background Iíve provided, I'm seeking your opinion on the nurseís stern directions, to which I'm certain she expects full compliance from me. By the way, my mom also said she never wants that woman (i.e., the nurse) to step foot in her house, again (which I chuckled at upon hearing ó yep, my strong-willed mom is still there, all right). Iím meeting with my mom's Hospice chaplain this evening to discuss all of this. She used to be a caregiver herself, so has much experience with the physical needs of those who are dying. My plan at the moment is that I will request Hospice to assign a different nurse. I'm also working with the caregiving agency to increase the level of care for my mom, but still leaving intervals when my mom is alone, though my daughter is downstairs and my mom is also equipped with a Philips LifeLine pendant. As youíve no doubt gathered, I'm trying to achieve the best balance of accommodating my mom's wishes and giving her reasonably and practically the care she needs primarily now due to her incontinence. That is, for now, I'm not ordering 24/7 care, but more like 4 to 5 shifts, 2 to 3 hours each, distributed fairly equally throughout each day. Thank you muchly for your response.
I am so sorry that you are having that experience with hospice care.
First, in hospice, patients get to choose. It is not up to the hospice staff to decide if the choice was correct or not. Hospice patients can be left alone, if the patient and family choose that. Hospice cannot abandon the patient or family if they think the choice puts the patient at risk. So in short, the nurses job is to tell you that there is some risk involved in her being alone. I would ask the nurse exactly what she sees aside from your mother's fluctuating mental status that is of such great concern. Since she has lifeline, I think it fine to try and see how she does with 4-5 shifts. The truth is I have worked with patients who had 24 hour care yet they fell down the stairs or off a chair with caregivers present. When patients are finally bed bound, they are somewhat safer.
It is also fine for your mother to refuse to allow that nurse to return. If the hospice cannot accommodate your request for a different nurse, you can transfer directly to a different hospice with no penalty or loss of hospice days under the Medicare Benefit.
It is really important that your mother continue to feel she is in control. You are doing the right thing in honoring that. Maybe when your "new" hospice team is in place, you can have a meeting will the nurse, social worker and chaplain so that your mother and you can communicate your views and needs clearly.
I am a little concern that your mother may have some uncontrolled discomfort. I wonder if her agitation is a sign of discomfort. Haldol does not work for pain. Becoming agitated during caregiving-changing of incontinent pads etc. is a clear sign of discomfort. People in her age group often deny having pain but if you ask them if they "hurt" they will admit to that. When you get your new nurse, I would ask that they carefully evaluate her for discomfort. Sometimes they will start with a trial of Tylenol to see if it decreases the episodes of irritability.
Speaking about those loved ones who have died is part of the process for many people.
It sounds like you are doing a great job as her advocate. Caring for elderly parents at home is never perfect. The adult children struggle to walk that fine line between providing the care their parent wants yet assuring safety. Some nurses are unfortunately autocratic in their dealings with patients. It never works, especially if the patient is strong willed and in control. Yes, change the nurse and communicate to the new team what your needs are.