Is your mom resisting help?

Your parents are still living together in the home they raised you in, years ago.  They are adamant that they’ll continue to live there, despite your mother’s progressing dementia.

 

Your father is the primary caregiver for your mother, and you’re increasingly worried about how they’re both doing. For quite a while, your mother has required a lot of cueing throughout the day; she will ask repetitive questions and has a very short-term memory. You know it’s exhausting to maintain the level of patience she deserves with each response, and your father is doing his best. But since your mother started getting up and rummaging through the drawers at night, your father hasn’t been getting much sleep.  His fatigue is quite evident.

 

 

When you initially suggested some outside assistance, both of your parents refused. Now, your father is open to the idea because he realizes he can’t be awake 24/7. He needs at least a few nights of decent sleep each week.  To help meet his need, you suggest an overnight caregiver four nights a week so your father can sleep well on those nights, knowing that the caregiver will attend to your mother when she awakes.

 

No sooner do you have the care arranged and the first night shift occurs and your parents want to cancel everything!  Your mother insists that she’s fine and doesn’t need help. Your father is going along with what your mother says, and he figures that if she doesn’t want the help then he has to cancel it….he always tended to bow to her wishes.

 

Now you’re frustrated because you’re trying to get them the extra help that they need, but your mother is preventing your father from accepting that help! Respecting your mother’s wishes is important, including giving her agency and decision-making opportunities where possible.  However, allowing her to make decisions when she cannot comprehend all the factors involved is not fair to her, and can have unintended consequences.

 

Your mother is not equipped to decide whether she requires a caregiver. She is not able to accurately self-assess her abilities or the progression of her dementia. Dementia interferes with someone’s ability to accurately assess their own situation—people do not know what they don’t know.  Even more critical, your mother is no longer able to gauge what your father needs. She can’t recognize that he is burned out and exhausted to the point that his own physical health is at risk.  She cannot calculate the risk of failing to act; she cannot foresee consequences and make a truly informed decision.

 

Since your mother cannot make a truly informed decision, she cannot be the primary decision-maker on implementing supportive care.  Her wishes can be respected as far as maintaining her routine, and keeping her home in the state she’s always liked, and matching personality preferences for caregivers that she can connect with. But expecting her to determine whether or not caregiving support should be put in place is not a fair expectation when her brain cannot allow her to weigh all the available information.

 

What would your mother have wanted 20 years ago? How would she have made her decisions 20 years ago?  If her husband’s health was at risk due to exhaustion, what type of decision would she have made?  If you look back at your mother’s life and consider how she made decisions regarding her husband, her children, or even her own parents, you will likely find a guiding theme to help make a decision on her behalf that is in keeping with her ethics and preferences.

 

Together with your father, you will need to guide your mother toward positive decisions that are in keeping with how she would have made decisions when her brain allowed her to weigh all the information she had available.  You will have to help your father realize that conceding to whatever your mother thinks she wants at the moment can be challenging, because someone with dementia may not remember what they said they wanted only minutes later. It is up to the loving adults around them to help guide them toward decisions that are in their best interest, the types of decisions they would have made for themselves and for their families.

 

You are not disregarding your mother’s wishes. In fact, you may be supporting her greatest wish. If her greatest wish is to remain living at home with her husband, you are granting that wish by supplying caregiving support.  Her immediate preference to not have a caregiver pales in comparison to her very strong desire to not be separated from her husband or be removed from her home.

 

What your mother cannot calculate, is that if her husband’s health declines from stress and exhaustion and he can no longer care for her, she will not be able to remain at home. She does not believe she needs to be cared for and she cannot see the stress and exhaustion in her husband, so she does not realize how real the risk is that she could lose her biggest wish—to remain at home with her husband. 

 

When you explain this to your father, you can be the loving team that wraps care around your mother to ensure that her over-arching desire is met. Sure she may have moments of resisting her new routine or insisting she doesn’t need or want a caregiver present, but overall, you are mitigating the risk that she doesn’t even see to help grant her biggest wish.

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