Finally, A Phone Call

LilMagill

Finally, A Phone Call

LilMagill
phone-2127_640After weeks of phone tag, I was finally able to talk to the nurse of the neuropsychologist who will be administering the testing Jan. 16. She told me that after the testing, we would not get results for a couple of weeks. And she told me that the results would be given in a follow-up visit. I asked if I could come to the follow up visit by myself, and she said that yes, that would be an option. So what should I do. . .

I'm prepared for a diagnosis of either Alzheimer's or vascular dementia, or both. Is it better for her to hear the diagnosis and face the knowledge of what her future will be like? Give her the chance to express opinions about what kind of care she wants? Or is it kinder to spare her that knowledge and tell her only, "the doctor wants you to take this medicine to see if it helps your memory"?

Today she's been having diarrhea and an upset stomach, so it's been a bad day for her. My son was so worried about her this morning. Sometimes he is a more caring caregiver than I am. He was reading the label or her on her OTC medicine and when he went to a friend's house for awhile, he asked me to check on her and make sure she didn't forget and take too many of the pills. He understands that she is likely to forget things. He's just 11!

 

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LilMagill

Thanks, <a href='http://www.caregiving.com/members/denise/' rel=\"nofollow\">@denise</a>. I'm am still thinking about that. I mean, she will know about the follow up and the fact that there will be some results from the testing. . . I'm hoping to offer to deal with the follow-up myself. Like, \"If it's okay with you, I can just see the doctor on my own and get whatever prescription or advice she has for you, then you wouldn't have to deal with another appointment.\" And she may say, \"No, I feel like I should go to that. I want to know the results.\" In the worst case scenario, she learns that she has a progressive dementia and becomes very worried, anxious or depressed - to the extent that it makes her cognition worse and decreases her overall quality of life. I could even say, \"I think you might be happier not knowing the diagnosis. Then you won't have to worry about it.\" I don't know!!

Denise

Hi LM--Your son just sounds so awesome. What a wonderful young man. :) He's just what our world needs.\r\n\r\nI wonder if after the testing, you could ask your mom if she wants to attend the follow-up appointment. Now, you may have to check with her a few times, including the day before and the day off. I guess I think it's helpful to know what your mom would like to do. \r\n\r\nHappy New Year!! Thanks so much for keeping us posted.

LilMagill

Thanks so much <a href='http://www.caregiving.com/members/jmkeslin/' rel=\"nofollow\">@jmkeslin</a> - those stories are really helpful. Yes, my mom is aware of her memory problems and frequently says things like, \"My memory is not what it used to be\" or \"My memory doesn't work very well at all these days.\" But she also says, \"I know this is common for people my age.\" When we talked about why she was referred to the neurologist, she said, \"But do you think my memory is that bad that there's something serious wrong?\" (I think I said something like, \"Well, your doctor referred you so they can try to figure out what's causing it and maybe give you some medicine that would help.\") So anyway, the answer is both yes and no. She's definitely not as aware as I am of forgetting things, but aware enough - yet not worrying about dementia.\r\n\r\nIt's really hard to cope with the changing roles; I also don't like the feeling of lying to her, though I think it's probably the kinder choice.

Jean

Hi <a href='http://www.caregiving.com/members/lilmagill/' rel=\"nofollow\">@lilmagill</a>: That is such a hard question. I would vote for going alone to the doctor so you will have time to digest the information yourself and then proceed. Even if you expect the worse, it can still be really hard to hear the definitive results and if you are worrying about how your mother is reacting you may not be able to ask everything you want.\r\n\r\nI was wondering though if your mom frets about her memory now? Or does she not notice she is forgetting things? In early stages my mom was really concerned about her memory and very frustrated that everyone dismissed her concern. I know she sensed what was happening to her. I don't know or remember if they ever told her she had Alzheimer's... I lived far away. \r\n\r\nI like Jan's answer... giving info as needed .... the sex ed analogy is perfect.\r\n\r\nWe had a tough situation with my mother-in-law who had vascular dementia. Her only sibling / younger sister died of Alzheimer's just when my mother-in-law had made some improvement. We talked to the psychiatrist and asked her opinion. Although she said it ultimately was up to us, she though giving her bad news could put my mother-in-law into a downward spiral. We never did tell her and once we got over feeling like we lied to her, I think we made the right decision.

LilMagill

Thank you so much for the kind words, <a href='http://www.caregiving.com/members/worriedwife/' rel=\"nofollow\">@worriedwife</a>. Thank you <a href='http://www.caregiving.com/members/lillie/' rel=\"nofollow\">@lillie</a> and <a href='http://www.caregiving.com/members/denise/' rel=\"nofollow\">@denise</a> for the poem - soooo sad!! You have a couple of amazing kids who were willing to do so much for your grandfather without even having the reward of his knowing who they were. Wow. And that is very special for you that you were the one person he never forgot. I'm getting a little teary-eyed!

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