She is mostly confused, extremely agitated, very negative, angry about aging and "being sick", confrontational and though every single person in the family has explained what is happening to her and we are all working hard to make her comfortable, she insists that she is that way because the doctors and her three kids have conspired to put her in a nursing home. We've set up the hospice at her doctors recommendations, we are paying a private duty person to come to her home when hospice is not there, my brother purchased a house with amenities suited to caring for her. They are arranging to move her and her care team to his house. We all work, my sister's home is not user friendly for care and I live 3000 miles away. They take her on outing when she's up to it. I fly in and spend 5-7 days a month with her 24/7. Often just sitting and listening and talking getting minimal sleep because she is so demanding. We've assured her that for as long as it is medically possible we will care for her at home. But none of this sticks in her mind. It's like she is stuck on this loop of negativity and anger. Then at some point at least 5 or 6 times a day she'll say, well (string of cuss words) it's not like I'm dying cause I'm not going anywhere, you all still need my guidance. Or she'll ask who called hospice (I don't think she understands what they are) and when we say her doctor recommended them because the cancer has spread, she'll accuse us of a plot to keep her sick and put her in a home. She is told every day, all day that she is going to her son's house. She rarely sleeps for more than an hour. The rest of the time she is laying in bed going over the same things over and over. Usually starts with she doesn't understand and thus starts the cycle. I'm assuming as the brain cancer spreads her personality will get worse. This last trip she accused me of saying I hated her and didn't care cause I had to fly home to go back to work and be with my daughter and grandchild. I'm just not sure how to address her attitude. It's like she is going to bully death away. Should I agree with her or what? I usually say nothing or try to assure her that we kids will be okay. That just makes her angry and she accuses us of wanting her to die. I realize everyone finds their own path to death as their body changes and declines but I'm a realist. I try to suggest pleasant calming things. Help her to accept equipment that will help but it just sits there while she rages. I'm at a loss for what to say and I find after the 4 th or 5 th round of this I start losing my patience and I'm sure you can hear the irritation in my voice. How do you deal with and what do you say to someone who refuses to go gently into thy goodnight?
There will likely come a point that she will realize that death is near. I don't know when that time will be, but you will see the changes when it happens. Some people get more peaceful and accepting. I don't know if everyone does. Maybe others know more about this.
I don't know if there is anything we can do about elder rage other than try to let it go. The thing I found that works best is reassurance that they are cared for. This is easier to say than it is to do. Sometimes we have to walk away for a while to keep our own anger in check.
It sounds like you and your siblings are doing a wonderful job caring for your mother. That is all that you can do. I'm glad you are there for each other.
As miserable and frustrating as it is for your family to have your mom behave in the way that she's behaving I'm sure it doesn't feel good to her either. Hospice can help with her anxiety and extreme agitation. Medication will calm your mom down and allow her to get some much-needed sleep. Sleeping an hour at a time sounds awful. And I would imagine that when mom's up, everyone's up.
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