Mom is 79, has mild Alzheimer’s, and suffers from arthritic pain. She made me promise to never put her in a nursing home. I now help her with bathing and sometimes toileting. My own health is poor but I feel naturally obligated to her. My family is worried about me but what else can I do?
Although there are several issues here, perhaps the biggest one for you is, how to deal with the guilt imposed by a parent’s unrealistic expectation?
Caregivers must look after themselves because studies show they develop more health problems due to the stress related to care-giving. Parents can impose an unbearable burden by insisting on a promise which may not only be unrealistic, but may lead to significant problems for them both.
You need to have a ‘heart-to-heart’ with her (if she is still able ) and ask her [and yourself] these four questions [from Dr. Gwande’s book, “Being Mortal”]:
- What is her understanding of her current condition? [does she realize she has a terminal disease – Alzheimer’s]
- What are her goals when her health gets worse? [it will worsen – so is the goal be ‘comfortable’ or ‘suffer more’]
- What frightens her most about her health situation? [is it loss of memory, not being able to look after herself, uncontrolled pain, or what?]
- What is she willing to trade-off, to give up, just to stay alive? [would she want you to get sick trying to care for her?].
These are not easy discussions but are necessary [and are applicable in any serious illness!]. When her dementia starts to require 24-hour care, you will need assistance. Whether or not she gives you permission, in the end, placing her in a nursing home may be in everyone’s best interests.