This subject rears its head sporadically, usually when my mother has a health matter that crops up. The most recent health matter is two-fold: First, I learned that she has a severely narrowed aortic valve, which results in shortness of breath, dizziness (which in turn may make her experience nausea), swelling in her legs and other uncomfortable symptoms. Second, as her dementia has progressed she has disengaged from society, spending all her time in her apartment except when a caregiver arrives in the morning to urge her to go out for a walk or shopping.
I ask myself "What sort of quality of life does my mother have now?" Or, more specifically, "How do I evaluate what my mother's quality of life is?" And "What does quality of life mean in this situation?"
I am choosing my words carefully here. The key in this situation is not to judge whether your parent's QofL is good from YOUR perspective, but to put yourself in theer shoes. Here's how I go about it. In my mother's case, I would say that her QofL is not great, but OK. On a scale of 1-10, with 10 being best, I would say she's a 5. I'm going to list how I've done my evaluation, since what works for me may work for you as well:
Question A. Is she comfortable? My answer is yes.
- Her various sources of pain, which she experienced as a terrible hammer hanging over her head during her pre-dementia days, are now controlled by a targeted array of medications that handle both the physical and the psychological components of the pain experience.
- She has a spacious, yet manageable, apartment with lots of light, which means a lot to her.
- Her environment in Assisted Living is safe and routinized, both of which lead to a sense of security and thereby a lessening of anxiety in dementia sufferers.
- Music, art, bridge, gardening, having a few close friends. These were my mother's passions. She can't do any of these things anymore, so initially I would say that has severely diminished her QofA. But her definition of herself has changed, too. At the start of her dementia memory loss, my mother remembered her bridge games and sorely missed them. She doesn't remember them now in that very tactile way of knowing that something meaningful is absent from her life. Same with music, which now confuses her instead of bringing joy.
- My sister and I are the most meaningful things in her life, seconded by her companion caregivers. However, since her memory of the passage of days is severely limited now, she no longer misses us as she used to. A major component of missing anyone is the perception that a long time has passed since one last saw that person. Since my mother has no sense of the passage of hours or weeks or months, she doesn't experience the pain of lacking us in her life. She goes minute by minute, or sometimes day by day, and that's all she knows.
- Before moving to Assisted Living and getting the pain meds right, my mother was nearly addicted to Vicodin and Percocet, and had debilitating bouts of anxiety-induced nausea. She hasn't needed even a Tylenol for pain and has not mentioned nausea in over 6 months. This is great.
- My mother's therapist and her psychiatrist both report statements from her that she wants to die. She has little energy left and spends most of her day lying down, dozing. They say she seems more resolutely down in the dumps than she was before (and this is a woman who's been on anti-depressants for 15 years). Given her situation, this seems like a perfectly lucid reaction on her part. She's losing her mind, her body is slowly failing her, she can't make friends because she can't remember anything. What's not to be depressed about?!
I hope you've gleaned some helpful tips from this. If you go through your own process of questioning what it is that defines YOUR parents' Quality of Life, you may find that, in their terms, much of their life is OK. And you also may identify some parts where you can make a noticeable difference, again on THEIR terms, in how they experience their end of days.