"I didn't think how saying yes to him would mean saying no to all the other things I wanted," Jennifer Donnelly.
I have heard spiritual teachers remind us that sometimes we make our choices and our decisions by default, by not thinking about what we really want and choosing that. In mental health many agree that within any situation we have the power of choice: how we respond to that situation. It is sometimes easy to base our decisions on what others want, rather than what we want. For instance, in a recent dental visit the dental hygienist wanted Dwane to use a particular mouthwash for a certain number of days, alternating with a special toothpaste -- but only a pea-sized amount. Good grief! I am worried about how to cope with getting us to all the appointments needed, doing all the business aspects of our lives, cooking, cleaning, yardwork, laundry. And, to add this dental regimen on top of that -- which I would have to supervise because it is far too complicated for Dwane to handle?
I recommend that we choose gently among the parameters of our situations, and not allow the expectations of others to dictate what we might choose. "Some people with DLB (Dementia with Lewy Bodies) die within 2-3 years after diagnosis, while others may do well for 5-10 years." (Mayo Clinic literature) Is this regimented dental hygiene really worth the time and effort? Let us make our own decisions based on our finite human strength and the well being of the care receiver and our own needs as dementia caregivers.
In our situation too, I have gently suggested to the health care professionals that, although I appreciate their expert advice it is in our (Hubby's) best interest to do things a different way. After hearing me out they are happy to agree that some things do not follow text book.
ReplyDeleteThere is a trade off I know, such as, Hubby's pain has increased. I have asked for a renewal of pain meds we originally stopped as it increased his confusion and risk of falls. The Dr was reluctant to prescribe knowing those two obstacles we had discussed but I assured him that I would take the confusion and unsteadiness if it kept Hubby fairly pain free. In the end, his Lewy Body Dementia will win over in the confusion and he will more than likely forget how to walk.
I wrestle with the emotions of, Am I keeping him less confused yet hurting for me, or for him?
I chose his comfort.
In my opinion, caregivers need to simplify as we can, when we can.
Kathy, I am so appreciative of your thoughtful comments -- they help me feel less alone. Yes, it is certainly a tradeoff. I find that we cannot always go for optimal, but for what is manageable --- always with an eye to his health and wellbeing, as well as my own. Thank you for your comments.
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