My parents and in particular my Mom often shared that QUALITY of life was her goal, not QUANTITY. After a diagnosis of dementia which can result in death, I had an ongoing struggle with what was important to do to honor my mother’s wishes.
The lines between “palliative care” and “hospice care” are confusing but they both focus on providing comfort. Palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness. These lines are kinda blurry with dementia since there really is no “treatment” or “cure” (YET).
I wanted to manage and strive for quality of life, keep Mom comfortable, but be mindful that we were not providing things that could extend her life.
When Mom started to refuse to take the anti-anxiety medication the care community was delivering, I realized that it was being delivered with a host of vitamins. Was it important to give my 80-year-old mother a multi-vitamin?
My Mom didn’t really like taking pills, so delivering 4, of which one was really important to minimize her stress became the only one I asked them to deliver. I followed up with the doctor who agreed that the other pills were not really necessary and her medication regimen was updated.
When Ensure was recommended as an addition to her meals, I asked more questions to make sure it wasn’t been forced or delivered as a meal replacement over providing her with food options she would still eat.
Apparently dementia and age can impact your taste and there seemed to be a strong preference for salty and sweet foods. She was never much of a salad or veggie person and it seemed odd to start worrying about nutrition when she often couldn’t remember names or faces. I didn’t want her to be hungry, but I also wanted to let her have some control even through her diagnosis over day-to-day choices.
My toughest challenge was when her hip broke and the doctor insisted we lift the DNR (Do Not Resuscitate) order for her so they could repair her broken joint. At 83 and very frail, there was no way she would have survived the surgery and they agreed to move her into Hospice Care. Over the previous year, she had been in and out of Hospice Care as she continued to weaken. However, with the addition of the broken hip, we now had the option to keep her comfortable with morphine that would eventually end her life.
These were difficult and guilt-inducing decisions, but I always worked to meet what I believed to be my mother’s wishes. Knowing these options may not just better serve the comfort, but also allow you to focus more on enjoying time with your loved one than managing medical matters.
Would the vitamins and Ensure prevented the eventual hip break? I will never really know but after caring for two parents now realize how important it is to let the will of the individual influence their daily choices, even after a diagnosis of dementia.
You will have a lot of options and choices to make over the course of your journey. Just know you will make the best decision you can with the information you have at the time you need to make choices for your loved one. Hospice can be a valuable option during your care journey. Reminded.