People with dementia, especially advanced dementia, often have a difficult time articulating pain. Sometimes they may not be cognitively aware that pain is the source of their distress. Therefore, it’s our responsibility, as those who provide for their care, to watch for signs of distress that may arise from pain.
...They may have pain issues that keep them from enjoying food, or dentures that make chewing uncomfortable. Depression can be a factor for some people, as can medication side effects. Loneliness, especially for people who have lost a spouse to a nursing home or death, can make eating seem unimportant or unattractive.
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.
...Most of us move and sit automatically without thinking of how it affects our bodies. With age, however, our habitual movements can translate into poor posture and sore or damaged joints. Mary Derbyshire has some words of wisdom to help us age with less pain, and the approach to movement that she teaches is, well, painless. Derbyshire has taught fitness and movement for over 35 years.
The stories in this fine book showed us how others have gone through similar things with their families and that is somehow reassuring. There are some helpful suggestions but mostly there is the recognition that others went through the same thing. All we can do is our best. That is greatly reassuring during these difficult emotional times. If you are a caregiver, this is a must read. - Delores Edwards
Many adults sit by the side of their dying loved ones, sometimes for days, working on accepting the loss of their physical presence and what this loss means in their lives. Then, a spouse, parent, child or friend suddenly rallies, becomes more stable and in some cases wants to talk. We grasp at what seems to be a turnaround and sigh with relief. They are going to hang on for a while; or are they?
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.
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