What can you do when your help is not wanted?

In the course of a few days, I talked with two different adult children who are trying to help loved ones but being told their help is not needed. This stage is the worst in my opinion for many reasons. The first is that it is the time when changes can be made to extend the life the individual or couple wants. Cognitive issues don’t go away by ignoring them, and early action offers the most opportunities to make choices and find good solutions for continuing to enjoy life. Unfortunately, you may have to wait until there is a critical failure before you can step into help.

In both cases, the husband is caring for a wife that clearly has some form of dementia. To the husband, I believe they are trying to maintain the life they have been leading and not recognizing how much the quality of life for the spouse, or for them, has changed. First, see if you can step into the spouse’s shoes. What is it that they are afraid will change if they try to get the care their spouse will need? This is the time when they fight hardest to maintain their lives.

Please recognize that the individual with cognitive issues often don’t recognize they have a problem. It’s a medical condition called Anosognosia and what you might not be privy too is how much the husband tried to point out these issues only to create a fight with his wife. He might feel like he is keeping the peace and protecting his spouse.

If there are other adult children, can you get all them together to present a united front? Do the have good friends who might join you or neighbors they trust that have reached out with concerns? My siblings and I did this twice. Our parent’s politely declined our suggestions both times. My siblings all followed up these visits (they flew in from different parts of the country) with letters. Both my parents had cognitive issues and no short term memory, so they truly believed we were making up the issues we cited.

If you have siblings that won’t help, or encouraging your parent to ignore the feedback from the other kids, you most likely have to wait for the critical failure.

I realized that my frequent visits to stop-gap the issues my parents were having (turning back on the water, showing up to get dad off the floor on a regular basis, meeting the police when they broke into their home and called them to report a burglary) was enabling them to continue leading their lives. The decision to not show up one night and my suggestion that my mom call “911” resulted in my dad ending up in the hospital and helped us implement some better solutions for their health and safety for the time being.

If you feel they are neglecting their loved one, you might consider calling in Adult Protective Services. I would at least call them to see if they have some suggestions. Typically they are unable to help unless there is imminent danger.

The reality is most likely that the spouse feels terribly alone and has no one to talk to. They want to protect their privacy and often won’t bring this to the attention of their physicians. Most doctor’s don’t have the time to even help someone navigate a what it means to have mild cognitive impairment or dementia.

So what can you do?

1. Listen, suggest, offer. But back off if you get no.
2. Wait for the failure, and be ready to help when you are invited in.

I wish I had more suggestions, but sometimes you can make someone else do what you believe is right, they have to be ready. Witnessed. 

For some other articles related to this topic:

Sometimes you just have to be sneaky: After meeting with my parents, this is what the retirement community psychologist suggested when my parents refused to accept the help they obviously needed.

Someone broke into your house? What happened the night my parent’s call the police to report a break-in.