This title may seem harsh to some of you, but to those of you who are experiencing or have experienced the last stages of the disease with your loved one, you understand. Alzheimer’s disease and other dementias are grueling and bleak in the later stages. My feelings toward the end of this journey came from a loving place—the desire for Harvey not to suffer anymore.
In my memoir, I use this chapter to detail Harvey’s last two months. Today, I’d like to explore hospice care for those living with dementia. My feelings of guilt over not handling the hospice question appropriately with my husband are propelling me to help equip others in this often confusing issue.
You should not view hospice care as “giving up” on your loved one living with dementia. In fact, studies have shown that people have the same life expectancy once enrolled, but often have a better quality of life in their last days to months.
To qualify for hospice care, a physician must verify that a patient likely has less than six months to live. There are relatively straight-forward timelines for illnesses such as congestive heart failure (CHF), chronic kidney disease (CKD), chronic obstructive pulmonary disease (COPD), and cancer. It’s much harder to nail down that time frame with a diagnosis like dementia, however.
Most guidelines for qualification for hospice care for someone living with any type of dementia rely on the FAST scale. It’s a very detailed staging system designed for clinical settings, and provides a common language to describe where a patient is in their progression of the disease. Your loved one probably qualifies for hospice if they are at stage 7. This means they are dependent on caregivers for eating, dressing, toileting, and mobility, and have less than six meaningful words. Additionally, patients should have at least one other qualifying medical condition, usually: CHF, COPD, CKD, diabetes, or a 10% weight loss.
Even if you’re not sure that your loved one will qualify, there’s nothing to lose by asking for an evaluation by hospice. Once enrolled, if he or she lives past the six months, they will be re-evaluated and likely re-enrolled.
There are several advantages to having hospice on board as soon as your loved one is eligible.
You and your loved one will receive support from the hospice staff, which include a physician, nurses, medical assistants, a social worker, and a chaplain. If your loved one is in a care facility, this assistance is in addition to the support from the facility’s staff. Hospice is completely covered by Medicare, so this support is without co-pays or deductibles. It also covers the cost of all prescriptions and supplies related to the diagnosis. Some hospice companies offer a one week respite, in-hospital care for the loved one, so that the primary caregiver can step away from care for a short period of time. They also offer grief support to the family, even months after the loved one has died.
I knew Harvey would qualify for hospice when he lost the ability to walk. He had no spoken words, required complete assistance, and was losing weight. His seizures were coming more frequently and lasting longer. I put in a request to the head nurse of his floor for hospice. We had a long discussion where she expressed doubts that the timing was right. She thought that Harvey, in some part of his psyche, would think we were giving up on him if he heard the word “hospice.” He was new to this floor, and I didn’t know this nurse yet, but mostly, I was just too tired to fight.
Unfortunately, two months later, Harvey contracted aspiration pneumonia, and his nurse practitioner hinted it might be time for hospice by asking, “Do you want us to treat, or do you want comfort measures only?” Knowing that treating this pneumonia would only prolong the inevitable, I opted for hospice. Harvey passed away five days later. Exactly how I DID NOT want to utilize hospice. I had seen this scenario in my practice too often—calling in hospice in the very last days of a person’s life. Hospice has so much more to offer to terminally ill patients and their families than this.
Your loved one deserves the best care in all stages of the disease, even when approaching death.