Telling LO about diagnosis/issues?

Anonymousjpl123

My Mom moved to my city this week and is doing great, all things considered. I’m giving her time to adjust to her new place (assisted living/memory care), which is super close to me so she’s sleeping here while we get her place set up. She’s so alert sometimes but definitely in the right place. We have to schedule a follow up with the neurologist to review mri results, and she will probably get more tests. Sometimes she is so, so lucid. Other times she is not. What is the benefit of someone knowing they have memory issues?

M1

Welcome to the forum, and it's good that things are going well so far.  But short answer to your question:  rarely is there any benefit; she won't remember that she has memory issues!  I started off right where you are, thinking that if I told my partner was losing her memory--and had our doctor confirm to her that this was the case--that then she would realize what was happening to her and know to defer to me for decision making, etc.  Our doctor literally laughed at me when I discussed this with him.  that's just not how it works.  Most here on the forum would tell you NOT to discuss her dementia with her, in most is just provokes anxiety and defensiveness.  If you look on the Spouse and Caregivers Forum for Ed's thread "for newcomers," it lists a lot of helpful educational resources.  One of the most common is a short online publication, understanding the dementia experience (I think there's a live link on Ed's thread).  It will help give you an idea of what it's thought to be like.

ninalu

Hi Ajp123,
It's great that things are going well. 

When my mom and I were early in the process, and I was helping out by going to the doctor with her and discussing treatment options, planning, I had a hard time understanding what the world looked like to her because she seemed so much the SAME as she had always been.

I love M1's suggestion to start learning about your mom's experience now. 

One thing that I learned later was that during the time around my mom's diagnosis, she was having feelings that she wasn't sharing with me. She knew that something wasn't right and kept her sadness, fear, and anger to herself. She didn't have an easy way to talk about it with me, or with anyone.

What worked best for us, eventually, was letting her come talk to me about her feelings and experience when she was ready. The only time we discussed her diagnosis was at the doctor, and we kept it present-focused. I found it very helpful to meet with mom's doctor separately - without her there - to talk about future things, like what was going to happen and how to figure out managing the transitions and changes. I never told my mom that I was meeting with her doctor separately. She was a very private person and it would have felt disrespectful to her, I'm quite sure. 

mommyandme (m&m)

My mom was an RN and actually got herself diagnosed, so obviously for a time she knew. Then there came a time that she questioned what was wrong with her… I asked her if she knew what Alzheimer’s was, she said no, that was the end of any discussion about her diagnosis.  It went to telling her it was ok, everyone has these issues one time or another and I was there for her.  No longer a need to discuss it, just need to keep her mind at ease as much as we can.

Anonymousjpl123

This is exactly why I love this forum. My sense has been that my mom is anxious, not just about moving to a new city but to a place that does have a lot of on site support. We have been so busy with the move, while she has expressed her fears/concerns/bitterness (this was not her choice, she would rather have stayed in her home independently) we have never directly talked about the “memory issues.” Tonight for the first time she talked with me and her granddaughter about the shame she feels moving into a place like this, and it was so refreshing to really talk and be able to reassure her.

I like the idea of focusing on her experience now. 

I love the idea of letting her discuss when/if she wants to.

I see her judging others, occasionally realizing her behavior was off balance, and feeling humiliated. This can be helped and addressed. I strongly sense that her discussing the actual “disease” will not be beneficial, at least not now. For some maybe but not her, not now. 

Thank you all for your thoughtful advice. So so so helpful.

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