My aunt is in denial about my uncle's Alzheimer's. How can we best help her?

6 answers | Last updated: Oct 16, 2016
A fellow caregiver asked...

My uncle is in the advanced stages of Alzheimer's and is also a severe diabetic. He presently lives at home with my Aunt. My Aunt has continued to be in denial and refuses to discuss options regarding care and living arrangements. She feels she can take care of him, even though he has begun being aggressive with her and very angry. As extended family members, is there anything we can do to get some one to recommend assistance to her? Is it legal to call social services or another organization about this situation? We are worried about her own health and safety, and she is dealing with her own breast cancer issues. She repeatedly down plays the severity of his Alzheimer's whenever we try to talk with her about it. She tells the doctor that there is no change. What can we do to help?

Expert Answers

Maria Basso Lipani writes a popular website on geriatric care topics, where she puts her expertise as a Licensed Clinical Social Worker to good use answering care planning questions. Maria is a graduate of Columbia University School of Social Work and is licensed in California and New York.

It is absolutely legal to call social services in any situation in which you are concerned about the health and/or well-being of another person. It is especially important to do so when the adult in question has dementia or another illness that impairs judgment.

The first thing you would need to do is find the number for Adult Protective Services (APS) or the equivalent in your aunt and uncle's state. Then contact them and make a report. This report can (and probably should be) done anonymously.

If the report is accepted (and given the circumstances you've shared here it should be), a worker will be dispatched to your aunt and uncle's home to talk with them.

This is where it gets tricky.

If the worker is good and is able to engage your aunt and begin developing rapport then the situation has a chance of improving because persumably the worker could make suggestions to your aunt that she would be at least willing to listen to and perhaps even entertain. However, if the worker is not very good and/or your aunt dismisses him or her outright, the case may be closed. The exception to this would be if there were a concern for physical harm or financial neglect of your uncle. Otherwise, APS is generally a voluntary service meaning that your aunt has the right to refuse it without repurcussions.

The other angle here may be to speak with your uncle's physician if you know who that is. Sending a letter or even a fax to the office explaining your concerns for your uncle, the steps you've taken (i.e. APS) and the outcome may motivate the doctor to take additional steps with your aunt at your uncle's next visit.

Also, should you decide to reach out to the doctor, it would help to give him/her an accurate description of your uncle's behaviors. Understating your uncle's decline is not helpful at all and it seems as though your description would stand in stark contrast to your aunt's description of how things are going which would in turn underscore the reason for your concern.

Community Answers

Frena answered...

i suspect your aunt is ashamed of your uncle's dementia. she may be of the mindset that regards him as mentally ill. or she just thinks it's only her business and no-one else's. either way, you'd be absolutely right on to call in adult protective services. keep your name out of it and just phone in the facts. i'm sure that would start a new circle of care for them. thank-you for taking the time to have concern for them!

The caregiver's voice answered...

When I read the query above the three thoughts that come immediately to mind are:

Overcome fear
Gain more knowledge
Take the time

Without having more information about your aunt and uncle's relationship before Alzheimer's, she may be FEARful of losing her husband and is in denial as she tries to overcome his disease.

With more KNOWLEDGE of the disease and the behaviors that often result from Alzheimer's, she may be in a better position to cope. If she's a reader, sharing a family caregiver's memoir would be another person's perspective on a similar journey that she is taking. You can check out "Where's my shoes?" My Father's Walk through Alzheimer's (my story) or any others that have been written by caregivers.

Finally, if you are able to, spend TIME with her and help explain this to her. Show her the website and if you have subscribed to Steps and Stages, this will also prove helpful to opening her eyes.

Texlas answered...

I am dealing with this same situation with my mother and father. APS helped me get my mom placed in longterm care, against my fathers wishes. My mom had already been agressive enough, to put Dad in the hospital. Now all dad talks about is getting her out of assisted living and back home with him. He is 84, and he doesn't understand the disease. He still thinks that if he just is nice enough to her she won't get angry and hit him again. The doctor, various social workers, and a psychologist, have all talked to him. We have given him reading material etc. He still wants her home and is very angry with all of us. I am trying my best every day to just keep explaining and explaining and love him. But he may never forgive me, for getting mom help.

A fellow caregiver answered...

The Caregiver's Voice has basically put it in a nutshell. My mom cares for my dad who is in the middle stages of alzheimer's. I have read, researched, gone on line to try to help her and dad. Mom is just like the aunt in question: she minimizes the symptoms, day to day difficulties with inappropriate behaviours, and absolutely, possitively refuses to get any support whatsoever...whether it be from our local church, senior community center, on-line, or even read what I have sent her from or from the Alzheimer's website. I used to get frustrated with her at her seeming inability to see reality (and the future), but I have come to realize these past couple of months that my mother is terrified: terrified of watching the man she has lived with for 60 years (she's 80 and dad's 89)slowly, and at times painfully, disappear. The shell is the same, but the man isn't. I can not begin to imagine her fear, desperation, feelings of helplessness, and loss. I have decided that instead of me preaching at her (kids always seem to think they know more than their parents), I will do what she needs me to do...listen, handle practicalities when needed, take care of some things my dad used to, and sometimes, instead of going on a vacation to recharge my batteries, I go home to recharge hers. I know that this probably does not relate much to your aunt's case where there is actual physical abuse, but I do think that a little kindness and patience coupled with knowledge can go a long way to helping your aunt deal with her emotional loss and fears.

Ca-claire answered...

I can understand each of the situations listed here. One thing we all need to remember, is that there was a time that 'dementia' or 'senility' were conditions that were dreaded and hidden from others. Anyone that is over about 70 years of age is from this era of hiding these conditions, Alzheimer's is a form of dementia.

Both of my parents had dementia of one sort or another. Mom had the typical dementia - repetitive questioning, forgetting things - even that she was in pain. They lived in an Assisted Living facility, and would point out a person in a quiet voice that they had AD, then would say "We're so happy we don't have that problem". Not realizing that they did. Trying to help a relative that is not your parent adds a degree of difficulty that I cannot imagine.

Hopefully each of you may find a way to help, without alienating the relatives. I wish you all the best!