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communicating with spouse
Iris L.
Posted: Thursday, March 19, 2015 1:03 AM
Joined: 12/15/2011
Posts: 16705


Someone asked a question about communicating with the spouse but apparently deleted it, because I was in the midst of responding and it disappeared.

This is very important, because the manner of communication will have to be different. We have the rare opportunity of being able to communicate while we still have our faculties and can have some back and forth. This is because we are AWARE of what is going on with us.

Most patients with more advanced dementia have anosognosia. This is an odd characteristic of brain disorders that makes the patient unaware of having a brain disorder. The patient truly believes she is fine, and sees no need for doctors, medications, or household changes.

This can be troubling for family members, because it appears that the patient is in denial. But this is not denial.

We who post here do not have anosognosia, because we are aware of what is happening. We just are caught in a warp because everything is new to us and we have no one reliable to guide and advise us.

I really do not have anything to tell you from my own experience about good communication with family members. My own marriage broke up partly over this. I was aware that I had memory problems, but I was not aware that my husband felt so traumatized, because we did not discuss memory loss at all. He thought I was playing games with him when I forgot, when I was simply forgetting.

My close friends also could not handle my memory loss, and abandoned me. So again, there was no communication, just abandonment.

I am alone, and I function well, considering, because I do not have anyone hassling me. I do not disclose my diagnosis--it is a secret. No one knows. Thus, the remaining people in my life treat me with respect.

Alz+ has posted often about communicating with her dh (dear husband). You might search for her posts, scattered around this board. There are several good ones. She encourages the spouse to SMILE.

In general, it might be a good idea to discuss as much as possible about having cognitive impairment and early dementia, which is now called major neurocognitive disorder, because the term dementia can be stigmatizing.

Perhaps the patient and spouse can read the patient boards together and discuss what other members are dealing with. This is just a suggestion. I do not have experience that this will work.

Patients with dementia can still do a lot. We have to actively search for our strengths and use them. Mimi taught us this.

Whoever posted about difficulties with the communication, please continue to post. This is OUR board for us to discuss what is bothering US patients, and to find solutions if possible and all the time, to find support.

We can discuss anything concerning dementia. There is nowhere else in the world for us to discuss what having dementia means to us.

Iris L.