Stress, guilt, confusion

jtgh · June 17

My oldest sister told me she was diagnosed with Alzheimer's a month ago. I know she's had mild memory loss for years, but she hid it well. It still seems mild to me, but I've never known anyone with this disease. She calls me to tell me that I never call her, although we speak frequently. When the conversation starts, she quizzes me to make sure I'm not lying about talking to her recently. She becomes somewhat rude & harsh (very unlike her) But then, it's like she remembers everything else. She knows who everyone is, knows our family members that are gone, etc. she forgets words for things sometimes, but usually complex medical terms. I really feel like everything she's doing is manipulative. Is it possible to be manipulative with this disease? She's been this way in the past, but she hurts my feelings constantly. I suffer from PTSD and other things that make travel impossible for me right now. The point of my post is that I began (after today's call) to wish she'd just completely forget about me. It's made me extremely sad to wish such a thing. She was always a good big sister to me, but she wasted a decade (about 2 years before her diagnosis) with a terrible man and she and I barely spoke. In fact, had he not broken up with her, we probably wouldn't have been in touch. Once again, I'm having my heart broken by her, but in a different way. I don't know how this disease progresses but I do know myself. I don't think I can do this. I wish she'd forget me and I feel terrible. She's living in her own house with her eldest son & daughter in law and has another son nearby. She even has a "boyfriend". I guess I just need to vent to ppl who understand. She's taken care of physically, but her demands for more calls and to see me (4 states away) become really uncomfortable and I don't know if I'm supposed to keep reminding her about my situation (which is painful for me to discuss every single time) or just keep saying we've talked or say I'm not coming to see her, etc. I don't know what's best. She remembers enough to grill me, but repeats herself often each call so I know something is wrong. Who would lie about having this? Anyways, thanks for listening. I feel like I'm going crazy sometimes.

caregiving daughter · June 18

I don't think your sis was hiding memory loss as she likely doesn't even realize that she has it. She is likely very afraid and is just trying to keep up appearances. I don't believe it's possible for those with dementia to manipulate. It's not her fault that she got this illness and you really have no idea when it originated. With cognitive decline, there is a loss in judgement so it could have played a part in being in a relationship that wasn't healthy. It's good to hear she has loved ones close by that will care for her.

Having said all this, it is real that interacting may cause hurt for yourself. You do need to take care of yourself, especially with ptsd. To the extent you expressed she was a good big sister, perhaps you can support her by learning more about the illness. Review some posts on the discussion board, read a book on dementia, or go to a support group. The steps may change your perspective a bit and the steps can be done in a safe way for you.

If you do happen to have a phone discussion with your sister, you can acknowledge her comments. You can express interest in what she wants to talk about. You can let her comments about you needing to call more often slide. Try to not correct or defend yourself. You know in your heart that you are doing your absolute best. There is no need to explain this to her. There is no need to feel badly that you cannot travel. You came to this board because you care about your sister and she is very fortunate to have you.

H1235 · June 18

What you are describing seems normal for dementia. I don’t believe she is trying to manipulate you and probably doesn’t have the ability. Many with dementia have anosognosia. This is an inability to recognize their symptoms or limitations. She believes it couldn’t possibly be her that has forgotten about a previous call. We often say here you can’t reason with a person with dementia. If you continue to try to explain and reason with her she is probably going to become upset and angry with you. Honestly she probably thinks you are the one playing games with her. Remind yourself that her brain is broken. To keep the peace, she is always right. Apologize for not calling sooner (even if you just talked with her). If she wants you to come visit, fib. Apologize again and tell her you are sick with a cold or need to save some money for the trip (kick the can down the road). Whatever works. There is no need to continually explain your ptsd or other uncomfortable to discuss health issues. I hope this helps. I will add a couple of resources.

Anosognosia and Dementia - AgingCare.com.pdf

https://iona.org/therapeutic-fibs-ok/

jtgh · June 18

Thank you all so much for your help and kindness. I adore my sister and am so very lost. I appreciate the advice and I will be researching more so I don't do the wrong things. It's like I've lost my best friend. She is my only surviving sister, as we lost our middle sister at age 40 to a sudden illness. Our brother is kind of checked out on the situation, and I am seeing signs of memory loss in him that I hope isn't going to be the same as my sister. Our parents died at young ages, so we have no way of knowing what conditions are prevalent in our family. Again, thank you all for being here. Thank you for responding. I don't feel as alone as I did yesterday.

jtgh · June 18

Thank you so very much. I will definitely be researching and I really appreciate you taking the time to respond to me. You've helped more than I can express.

jtgh · June 18

Thank you so much.

terei · June 20

Do a lot of research about behaviors associated with ALZ . It all sounds pretty typical. As i told someone else today, she is not going to change her behaviors, it will be up to you to manage your interactions. Firstly, I would limit contact with her. That means either blocking or not picking up on her calls. YOU manage contact by calling HER on a schedule that you can manage with the least distress to you (once a month, whatever)

keep reminding yourself, you are not dealing with your sister anymore, you are dealing with a new personality caused by ALZ

Iffy49 · July 27

I like the idea of a call schedule. I don’t know if you could handle it if you have your own appointments to go to. But you might try certain days at certain times if possible.And when you call just remind her of the schedule. You could also write letters, short and sweet.

There are several apps like Google Meets and Whatapp where you can make free video calls. If she has someone with her who can set it up, that might be a friendlier way to make contact.

Stress, guilt, confusion

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