Many people have heard of hospice care but they mistakenly think that it’s just a way to help cancer patients be more comfortable at the end of their lives. Fewer people have heard of palliative care, and they may have no idea what it is. The truth is that hospice and palliative care are related but used for different reasons at different times, and everyone should be well-versed in what they offer. Here, we’ll clarify some points of confusion.
It’s far too easy for onlookers to view someone with dementia as unable to feel pain. Since the disease eventually renders most people helpless and cognitively inexpressive, they can't articulate what hurts or why they are upset. Caring researchers have now brought new insight to this issue. In an article on altered pain processing in patients with cognitive impairment, Medical News Today states that new research shows how wrong previous ideas about what people with cognitive disorders could feel have been.
An amazing book of stories that will touch your heart and encourage you, especially if you are a caregiver. Carol Bradley Bursack also has an excellent web site devoted to the elderly and their caregivers. - Carol Heilman
Dear Carol: My dad had been fighting cancer for years. Eventually, there was no more hope for a cure, so we agreed to ask for hospice care to keep Dad comfortable during his last weeks of life. He surprised us by doing well under hospice care, living beyond the doctor’s expectation, but, of course, he eventually died. What bothers me is that I wasn’t with him at the moment he passed. He was in a nursing home at the time and the staff was wonderful. They called the family together when it was determined that Dad was close to the end. My siblings and I sat with Dad for two days around the clock. We brought in food at first but as the wait stretched out we took turns going to my nearby home to shower and nap. Dad died during my nap. I still feel devastated and guilty that I wasn’t there when he passed. I go to hospice grief counseling and that is helping, but I’m wondering if you have any words of comfort to offer? Rhonda
Hospice care is palliative care, but palliative care is not hospice. The difference between these two types of care is something that I have found difficult to clarify myself let alone explain to others. However, this care is a fundamental part of treating any chronic or terminal illness.
Dear Carol: My mom is 94 years old and frail. She has a weak heart and bad lungs, yet she hangs on. I’m a 73-year-old widow. I took care of Mom at home for over five years, but two years ago I placed her in a nursing home. I felt terrible guilt about doing that because I’d promised her that I wouldn’t, but my own health was deteriorating and I couldn’t physically transfer her anymore. There was no other choice. Apparently, we both had outdated ideas about nursing homes or we would have done this sooner since we are both pleased. But Mom is now bedridden and can barely murmur a few words. There is no quality in her life that I can see and I find myself wishing that she could just let go. Then I feel ashamed. She’s very religious and isn’t afraid of death, and neither am I, but I'm still confused about my feelings. Guilt and shame nag at me even though I know that her current situation is miserable. How do I deal with this feeling of disloyalty about wanting her life to end? SL
Our culture is steeped in language that makes accepting the terminal diagnosis of ourselves or a loved one more difficult to accept than it needs to be. Doctors say, “I’m sorry, there’s nothing more we can do. You might want to look into hospice care.” Patients tell their doctors that they want “aggressive treatment,” until there is nothing else that can be done, then they will go on hospice care.The crux of these conversations is that medicine will do everything possible and then when you give up you will go on hospice care.
My dad went into surgery with a smile and hope. He came out with severe dementia. Something unexplainable at the time had happened and Dad became a statistic – one of those “poor outcomes” we hear about. My head knew this tragedy was permanent, but my heart wanted my “real” dad back. The kind, loving, intelligent man whose love for me was steadfast. I wanted him back. Unfortunately, my family and I had to learn to accept the fact that Dad would never be the same.
End-of-life discussions may not seem to fit with the commonly cheerful image of the holiday season. After all, who likes to talk about potential death? Yet, too many people die in a manner they would not choose. When we consider that the true reason for this spiritual season is to celebrate our faith, what could be more fitting than incorporating the message that we want the best for our loved ones for their entire life - and that their life will include the death process?
Dear Carol: My mother was diagnosed with mixed dementia (vascular dementia along with Alzheimer’s) at age 67. She’s now 75 and the doctor says she’s in Alzheimer's stage seven. She’s had two strokes and takes medication for high blood pressure. Mom doesn’t know anyone and simply sits and stares into space without reacting very much. All of her doctors are vague about her life expectancy. I don’t expect the doctor to know exactly how long she will continue this way but I’d like some idea. Are they uncomfortable with my question? PT
Whether or not November was chosen as National Hospice and Palliative Care Month because of the sad reminders of holiday deaths that Thanksgiving and Christmas bring around each year, I don’t know. But to me, the timing is perfect. All deaths leave behind days on the calendar that are particularly painful for loved ones. Birthdays, wedding anniversaries, the births of children and grandchildren. All magnify the lack of presence of the deceased person. However, Thanksgiving, Christmas - and even the New Year - come around at the same time for all.