family and friends too afraid of anger to help- what to do?

chrisjoy

Hi,

My stepmom has recently been diagnosed with "moderate dementia likely due to Alzheimer's". We had been seeing changes in her memory for a couple of years and it took some real "gymnastics", including a friend of hers who is a nurse literally making the appointment with the neuropsychologist for her and practically bribing her to attend the appointment with another friend, to even get this diagnosis or feedback.

The problem is that she is angry about the diagnosis, absolutely does not believe it, convincingly tells everyone that she only slept for two hours the night before the test so it's a sham, the doctor was awful, her primary care provider went over the results with her and agreed with her that it was BS, etc. etc. She gets so worked up and angry when talking about it that everyone just backs off and believes her.

I'm not sure what we can do next? She won't allow anyone to go to appointments with her, won't sign releases of information so we can't talk with care providers, and is convinced my dad and I are conspiring against her. It's a complex situation since she and dad are divorced but continued living together after the divorce- he is not her husband so has not legal right to get involved in her care. She is convinced she is his caretaker but in reality he does the cooking, the cleaning, making sure she takes her meds (she's sometimes non-compliant), etc.

Her family is not warm, close, or supportive. We are all she has, but she thinks we're out to get her. Some of the things she's paranoid about don't even make sense. How can we get an "outside force" to help?

Jeanne C.

Hi and welcome. I'm sorry your family is dealing with this.

First thing to understand is that she isn't in denial. Many people with dementia suffer from anosognosia - she literally cannot see her impairment and arguing with her will just make her more agitated. The paranoia is also a common issue. You can't truly reason with her. Instead you'll need to learn to redirect and work around her symptoms. It's difficult. If you and your father are going to be involved in her caregiving, you should learn what you can about dementia. The 36 hour day is an incredibly helpful book.

Also you need to figure out how you want to proceed. I recall from an earlier post that her son has POA. You're going to need to work with him on this situation if you want to be involved. I'm going to bluntly ask you, is that what you want? Your father has his own health issues. Do you also want to have to take care of your ex stepmother? Perhaps it's best to separate yourself and your dad from this situation and let her family manage it. Just something to consider.

Finally, you'll get better response if you post on the general caregiver board. This group isn't trafficked frequently. It's really set up for us to save information for future reference. I only saw the post because I'm the person who set it up. I don't always see notifications and now that my husband has progressed into hospice care, I don't come to the forum as often.

All the best to you.

chrisjoy

Thanks so much for your thoughtful response and tips. It's a complex situation and I'm not sure I will get my dad to be willing to separate from her. He's very loyal and unwilling to leave someone just because things get very hard. Her son isn't dependable and I'm not sure he will step up to the plate- and this might sound like me being dramatic, but her entire family of origin is very dysfunctional. (We are talking a handful have been in and out of jail or have done prison time for drug involvement, illegal firearms, child abuse, spousal abuse, etc.) That's why it's not only complex but a little scary for me. Some will see her as a sitting duck they can take advantage of once they realize how easily trickable she now is. And zero of them would want me messing around with any of it. But I do care about her and want to see things go as well as they can for her- I recognize her difficult behaviors are the disease and not her.

I'm so sorry your husband is in hospice. Thanks for taking the time to tend to this conversation- I hope you're able to take time for you too.