My mother, who has advanced Alzheimer’s disease, had a grand mal seizure last Thursday that left her unconscious and earned her a trip to the hospital. She’s back home and appears to be recovered, but she’s declining rapidly and we’ve been advised to contact hospice.
It’s been suggested that my mom has less than 6 months to live. While I’m not in denial and wouldn’t be against a quick and merciful end to this madness, how do we know when a person with dementia is ready for hospice? How do we know my mom is nearing the end of her life?
Experts say the average duration of the disease from diagnosis to death is 8 – 10 years. But people can succumb to the disease in 6 years and I’ve heard some hang on for 20 years, which makes predicting the end for someone with dementia an educated guess at best. Mom is about 8 years in.
In “Mom Update: February 2013,” I shared about mom’s decline and how her caregiver thought she had about a year left. Now I’m hearing she won’t be here beyond the summer, which is a pretty bold statement, but one I take notice of since mom’s caregiver has twenty plus years of experience watching people like my mom come and go.
When I say mom is declining rapidly, it’s difficult to describe since she’s not the typical Alzheimer’s sufferer. (See “If It’s Not Alzheimer’s, What Is It” for more on this.) Mom walks and “talks” and is still able to feed herself, she laughs and jokes and holds the cat . . . and yet, there’s an emptiness to her eyes and an absence from the here and now that permeates all that she does. She’s in the room, but she’s not. It’s as if mom is a warm vessel going through the motions of daily living and carrying out lifelong mannerisms — but the captain is gone and mom is on auto-pilot.
I’m quite often asked if my mom still knows who I am, and for the first time I can say that I don’t think she does. And yet . . . even as I say this, I’d like to believe there will always be something that recognizes daughter . . son . . husband. Something that just knows this is family. . . this is love.
This is the standard hospice admission criteria from ALZonline. Mom meets 4 of the 6.
Hospice’s admission guidelines for persons with dementia of either Alzheimer’s or multi-infarct type (irreversible) are as follows:
- Person has to be in the end-stages of the disease,(stage 7 or beyond).
- Person cannot walk, dress, or bathe properly without assistance.
- Person is incontinent.
- Person has little or no meaningful verbal communication.
- Presence of medical complications that require hospitalization. Must have had one of the following in the past 12-months: aspiration pneumonia, kidney infection, septicemia, multiple ulcers, and recurrent fevers after antibiotics.
- Deteriorating nutritional status as evidenced by difficulty swallowing or refusal to eat and progressive weight loss, etc.
- The person exhibits severe cognitive impairment as evidenced by progressive confusion, anger, frustration or withdrawal, inability to recognize family or friends, loss of ability to follow directions, loss of immediate and recent memory with progressive loss of remote memory.
- The patient/family desires no further medical intervention and/or aggressive medical intervention is considered futile.
- There are other existing medical problems accelerating terminal disease such as CHD, COPD, Renal disease, Liver disease, etc.
We are meeting with hospice on Saturday to determine if mom qualifies for services. If she does, hospice support will be provided in her home and will augment the care she’s already receiving. If she doesn’t, we’ve had a trial run and know what to expect when the time comes.
I think it can go either way, and I’m not attached to either outcome.