NEED HELP

leslierouth

So........ I am concerned about the way my patient is being treated/punished/redirected (what ever you want to call it). She is 93 years old and has been diagnosed with Alzheimers approx. 4 years ago.
I will jump right to the concerns I am having.......
She is sometimes a bit bossy, rude, ungrateful....etc. So when she is like that the family wants to immediately take her little dog away from her and keep it for usually 24-48 hours until she "learns" her lesson. The fact is ....she cant even tell you her own name let alone why her dog is being taken away. And when she is asked if she has learned her lesson she is honest and answers "NO" then it becomes a whole other ordeal.
ANY advise on how I can explain to the family that she isn't able to understand why she is being held accountable for things she can't control.... My heart breaks for her...... PLEASE HELP... :'(

SusanB-dil

Oh my word! That isn't fair to her nor the dog. She probably has no idea what she's done. That's really cold of them!

I'm not sure trying to reason with them would do much good? You've probably already told them that she can't help it. It doesn't seem like they want to understand.

Does she get agitated that a medication might calm her down a bit, perhaps?

I'm so sorry, they are being bullies.

Quilting brings calm

it sounds like they need some education on what dementia is. You might get a copy of the book The 36 Hour Day for them. Or direct then to this website along with alz.org and dementiacarecentral.com

If you go to groups on this website, there are resources listed for our new members. You might find info there that would help your relatives understand her better.

Iris L.

Are you employed by an agency? Have you discussed this with your supervisor? Are there other signs, such as withholding food or physical assaults? You can call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant for further advice.

Iris

michiganpat

That poor woman! And bless you for caring and asking for help. Iris has offered some very sound advice. This makes my heart hurt!

harshedbuzz

Bless you for being willing to advocate for this woman.

This sounds like emotional abuse but that it might be difficult to prove if reported. Do you feel like this is a garden-variety expression of treatable ignorance on their parts? Could it be they don't have the cognitive or intellectual bandwidth or curiosity to understand how dementia is about more than memory? Or is there a darker dynamic in which perhaps one or more members resent the disruption of dementia in their marriage/family and are taking it out on your patient?

The book Quilting suggested is excellent, but it's a book and not a quick read. IME, there are 2 distinct reactions a LO being diagnosed— those who read all they can on the subject and those who don't attempt to understand it at all for whatever reason. I feel like the sort of people who would use consequences to "discipline" a PWD aren't the sort who made the effort to learn about the condition and probably wouldn't embrace a book if suggested. That said, the "Understanding the Dementia Experience" is a free and quick read that covers how the disease impacts thinking and behavior.

While you could escalate this situation to the agency owner, if there is one, I doubt they'd be willing to risk losing a client family and doing so poses the very real risk of the PWD left with no eyes on her to watch for escalating abuse.

HB

Iris L.

I had a situation like this in my own family. One of my relatives was upset with her MIL's behaviors, such a wandering around the house at night, entering her bedroom without knocking, not bring hygienic in the bathroom, not washing her hands, etc. She would complain to me and declare she was not going to help her MIL out. I kept reminding her that her 100 yo MIL had dementia, and those disturbing behaviors were "normal" for dementia. I told her the only choices were to help her, or to discuss with the son to arrange for placement. They finally realized that the dementia was not just poor manners, and the lady was placed onto a nice memory care facility. It's not that my relatives didn't know about dementia, because we have had PWDs in our family. I recall the old people called it "old-timers disease". I think they just didn't want to accept that it was happening.

Iris

Lucy C

This is not a fun situation.

Usually families that function on this level are simplistic in their thinking, and not very well educated. They will parent their children in exactly the same way. If the child or teenager expresses rudeness or ingratitude, the parent will threaten to withhold a gift or remove a privilege as a this-for-that reprisal. This is not for the child's benefit or moral discipline, but for the benefit of the parent who feels injured. The only "lesson" is "treat me the way I want you to, or I won't give you what you want."

I've actually listened to these conversations between parents and children in grocery stores and other places. (Very disturbing.) It's possible that your patient brought her children up to think this was appropriate, and they are mirroring what they learned from mom. The whole family dynamic is based on a bargain economy: if any family member feels that he or she is being "cheated" of what is due and right, s/he will withhold something else in return. Unselfishness, compassion, empathy and forgiveness do not play large roles. Further, it can be very difficult to get these family members to imagine themselves in the other person's position. They have, in many cases, spent their whole lives viewing the world through the lens of how any given transaction affects them, singly and personally.

They also depend on appearances. If mom seems to know what she is saying, or expresses a certain emotion, then they are convinced that this is her real and intended speech and emotion. It's hard for them to process any idea of appearances not being correct. You can verbally tell them, but it's not likely to get past the wall.

In this case, I think I would look for some good, clear simple videos on the subject, and hopefully our members here will have some to link for you. Many times, families who function (or don't function) with these types of issues tend to give stronger credibility to "what they saw on TV." YouTube can be one of their best learning tools.

If it's possible to contact your patient's doctor or PCP, you may also want to report what you are seeing, and ask them to consider talking it over with the family next time the patient has an appointment. You may also want to call your local Area Agency on Aging and ask to be connected with a social worker who can give you the benefit of their experience and perspective.

I'm sorry this situation is so difficult, and I hope you'll be able to find some useful resources. Unfortunately, I'm too new to this to have very many; but I know other members may be able to help more.