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Rainey69 Asked June 2016

How to deal with Mom who lives with me in the inlaw unit who won't call me if she is sick because she thinks she is disturbing me?

A little about Mom. She just turned 80, has mild/mid dementia, she is capable of dressing herself, feeding herself, going to the bathroom, etc. She cannot drive and gets forgetful about things. She has lymphedema in one leg from past cervical cancer surgery which I take care of everyday but still is always at risk of going septic which is life threatening. I have told her many times that if she is not feeling well, she needs to let me know immediately because if it is sepsis, I need to get her to the ER immediately. She has many times even when I am with her, not told me she wasn't feeling well before it got more serious. She is stoic and feels that it is not critical to tell me and somehow feels she would be somehow inconvieniencing me if she let me know. I have no idea why she constantly does this, I have in no way given her any reason not to alert me, as a matter of fact, stressed how important it is for her to tell me right away if she doesn't feel well, even if it's 3:00 am! She say's she will but then if she gets sick and it's 12:30 am, she does not call with the same excuse that she did not want to disturb me. It's making me nuts, she even did this when she was in the same house as I in the middle of the afternoon. Wasn't feeling well, did not tell me, crawled under a heating blanket and put it on high and damn near killed herself if I had not have walked by the room and found her. I am by profession a caregiver and only work part time so I can keep my eye on her but I cannot (and it is not neccessary) to watch her 24/7. This is a very tricky situation because she is still capable of doing many things on her own, when to know when to step in and when to give her independence. She does forget stuff and it seems somedays she is worse and sometimes better but I am always worried I will wake up someday to find her dead because she did not want to disturb me even though I have told her that is why we live together, so I am here if she needs me for anything, especially is she is not feeling well. Anyone else experience this stoic silliness? Is this common with dementia?


KelleyT Jun 2016
Don't just ask "are you ok?" Ask, "how is your leg today, can I see?" How is your eye?" "Are your glasses good?" "How are your toenails?, Let me look at them." Be specific about what you are asking her about.

Rainey69 Jun 2016
Windytown, Mom was depressed ever since my oldest brother died of a drug overdose over 15 years ago. She was never the same after that. I did get her to go to counseling after that and then went to a support group with her for over a year. I often wonder if that tragic event brought the dementia on. However, the upside is the dementia seems to have helped her to forget a lot of unpleasant things and she isn't living in the world of tragedy anymore that she surrounded herself in for years after his death. I try to do things that I know she loves like created a lovely garden for her that attracts birds and butterflies and she LOVES it! I get her to laugh everyday and we have fun so I do not see the depression anymore. As a matter of fact, I recently discovered melanoma on her arm and caught it early enough to get it all removed and save her from cancer again. She thanked me profusely for saving her life. That does not seem like something she would say if she had no desire to live. I honestly think her common sense has kinda gone out the window.
I am so sorry to hear about your Mom, that has gotta crush you to hear her say things like that. I remember thinking after my brother died and Mom was so consumed with grief, I wanted to yell, "Your other children still exist!" But I did not.
I take it she won't take any meds either? Yes I totally agree with you about coming to terms with dementia, that can't be easy and certainly wouldn't give anyone a great outlook but I just show my Mom I get forgetful about things too and she seems to get relieved seeing she is not the only one! Humor helps a lot.

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windytown Jun 2016
Forgot to mention, just from my observations, my mom has mild to moderate dementia. When they recognize what is happening that is depressing in itself. Wishing you the best in your situation.

windytown Jun 2016
Rainey, Is your mom depressed at all or giving up on life? Maybe she's not telling you about her feelings either. My mom tells me she prays that she dies in her sleep every night. She's pushing 80 and in assisted living and misses my dad so much. I do all I can to keep her involved in life but she has no interest. She won't go to a doctor for depression or her many possible medical problems. My hands are tied by her wishes. Is your mom perhaps in the same boat?

Rainey69 Jun 2016
I had just gone to check on her and say "goodnight" around 10 pm. She was fine and gave me a big hug. She stated that the sick feeling started about 12:15 am and I was still awake, she even commented on seeing my lights still on so she knew I was up. The odd part is about a week ago, she called me a little after midnight because she was feeling sick so she KNOWS that I will be there in a flash. However, more often she won't tell me even if she is sitting right next to me until she starts physically showing symptoms that I notice. She thinks, it will pass, and instead it gets worse. I have become an expert on symptoms of sepsis now since I have been down that road a few times so I know that one very well. She was an RN all her life and doctors and nurses are notorious for not taking their health problems seriously, they are some of the worst. The baby monitor is not a bad idea, however, if I die in the middle of the night, my older brother is next in line for POA so I do have a plan, and if he dies too, then my other older brother gets POA. I am aware none of us are immortal. To give more understanding of her, I have an emergency lifeline next to her bed, to wear around her and one in the kitchen, she won't wear it or use it so even if I were an only child or if I died in the middle of the night, she does have devices she could just push a button and the paramedics would be here in less than 5. I guess I was just wondering if anyone else had the same experience and if they had found ways to resolve it.

blannie Jun 2016
If you ask her flat out "Do you feel OK" will she tell you? My mom doesn't have the issues that yours does, and I don't live with my mom, but I call her at 8 AM and 6 PM every day, just to keep a close eye on her too. I can listen for changes in her speech, answers, etc. I always ask her how she's feeling. One time she had a cough that was constant. She didn't think it was an issue. Hello, you can't talk for 10 seconds without coughing! So we went to the ER immediately.

Since you live in the same home, I'd start a regular program of asking her how she feels. "Mom, do you feel OK right now?" If there's a specific symptom that would alert you to possible sepsis, I'd ask her specifically about that. "Is your stomach upset?" Ask her that multiple times a day and right before bed. Short of implanting some kind of medical alert in her, I don't know what else you could do. I know sepsis can develop quickly, but you can't watch her 24/7. And with dementia, it will only get worse. You can only do what you can do, so cut yourself some slack.

pamstegma Jun 2016
How about a baby monitor in her room at night, with the receiver in your room? And what if she wakes up and you die at night? It can happen. Have a Plan.

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