CNN reported this week on people with Alzheimer’s who develop violent tendencies. This is the silent story that many families don’t want to talk about. Family members (aka caregivers) don’t want to expose their loved ones. These respected family members were once doctors, lawyers or indian chiefs, as the saying goes–Alzheimer’s is the great equalizer and doesn’t care who you are, and pays no attention to your socio-economic status.
We don’t talk about it. We deny and cover up, and stop inviting friends and extended family over. Spouses lie, make up excuses about the bruises. We’re afraid. We don’t know what comes next–where will they go, what care will they receive, can we even afford this care–and what if they get so bad that even the care facilities don’t want to deal with them?
How long can–or should a family, a spouse, an adult child manage the care of a person with Alzheimer’s, and particularly one who is dangerous?
As I read the article (link below) I saw correlations to my mother.
I remember the day she dug her nails into my arms and screamed for a good five minutes her nose practically mine. She knocked me out of the way to go and catch her imaginary taxi. Her eyes were wild. I knew we were in deep trouble. I knew that as a mother to teenagers who lived in the same house that I could not subject them to this. We had hit our wall.
My mother had Parkinson’s for years. The Alzheimer’s bloomed after she moved in with my family and me. Or perhaps it was there and she hid it–and I played along. I had noticed “signs” of paranoia and anger early on, but I chalked this up to her rather expressive personality.
As the disease took hold, she lost the ability to reason. I couldn’t convince her that my children weren’t stealing the crocheted doll that covered the toilet paper roll on the back of her toilet. I couldn’t convince her those were only squirrels running on her roof, not thieves breaking in night after night. I couldn’t reason with her that no, she couldn’t just wander off and catch a taxi to “go home” in our Florida suburban neighborhood. It always baffled me that long after our names and other useful information left her mind that the word, “taxi” stayed. Mother grew up in Georgia, not New York. I think she maybe rode a taxi twice in her entire life.
I stopped talking about it. People would say, “Just put her in a home.”
Like it’s just that easy. Money concerns–memory disorder units and other types of Alzheimer’s facilities that take this kind of patient cost upwards of $5,000 a month and are not fully covered by Medicare or insurance. Not to mention the emotional hurdles of all the times she begged me to never put her in a home, the worry of who would care for her, see past this, and how in the world do I even find a place and people I can trust?
So I stopped inviting people into our home. I stopped taking her places where she tended to act out. It was random enough that i wasn’t dealing with on a daily basis, but the inability to sit still, to pace, to worry, to fixate on me or on something bizarre–all that was there pretty much of the time. She trashed her room with the veracity of whole fraternity who had chugged a couple of keggers. I felt as if I were living in a lockdown facility and I was the unarmed warden.
My concern was that I’d lose it–my cool, my temper, my ability to control the situation. I could forgive her. She had a disease, that’s all. I had to rise above it. I was the one responsible for my actions. I didn’t want to do something I’d regret. I didn’t want to mis-handle my mother or this situation–or cause harm to my children, my marriage, my life. That tightrope was beyond exhausting.
My mother’s violent stage didn’t last too long. She was spiraling fast. Soon, within a few months, she went from violent to forgetting how to swallow. At that point I chose not to use a feeding tube. I had gone from one impossible decision to even a worse one. The thing about having your loved one at home and not in a care home is that you are 100% responsible for these decisions–and you have to follow them through. You witness the consequences of your decisions. You stand there every day and question yourself a million times. You don’t get to get in your car and leave. You stay.
How bad can it get?
Well, I’m here to tell you that Alzheimer’s can give them super strength and amazing endurance.
What’s the percentage of people with Alzheimer’s who are violent? The stats say 5-10% (National Health Monitor).
It’s a lot like schizophrenia in that most people who suffer with this terrible mental illness are not violent, but those that are get a lot of press, and can indeed, hurt people. It may be small percentage, but it still raises alarms.
Some Behaviors That Accompany Alzheimer’s Are:
- Repeated mumbling words or repeated sounds
- Ticks, cursing, “ugly” (berated, accusatory, or sexual) talk
- Delusions (visual or auditory hallucinations)
- Pounding on a table or hitting their head, hand or object repeatedly
- Fixation on some thing or someone (paranoia, anxiety)
- Biting, pinching, hitting, kicking
- Crying, moodiness, and other outbursts
1. Back down.
Most of the time, the incident escalates when the patient does not want to do tasks such as undress, brush teeth or bathe. Don’t physically force the person to do anything, she warned. This could worsen the situation and possibly injure all parties involved.
2. When the patient is upset, apologize — even when it’s not your fault.
Using this strategy will buy you time and good will. Don’t argue with an Alzheimer’s patient, because you can’t win.
3. When the patient becomes agitated, change the topic. (Redirect)
Change the subject. Move to another location. Distract them by something fresh–the birds outside, pretend a friend has called (make the phone ring) play a song they like. “If you can stay calm, you can mirror that calmness back to them,” Kallmyer of the Alzheimer’s Association advised.
4. Keep in mind that the world is distorted for an Alzheimer’s patient.
Know your loved one. Do noises startle them? Are they more upset around a certain person or time of day? Do you know what calms them? Do you have them on a schedule that works well for both of you? Are they sensitive to sugar, caffeine, or even experiencing pain (toothaches, broken ribs, urinary tract infections, and other chronic pains oftentimes goes undiagnosed and can add to their agitation).
5. Call for help.
When in doubt, ask for help. Call the Alzheimer’s Association Helpline. 24/7 for confidential help.
No one is going to blame you or take them from you–if you ask for help before something horrible happens. No one can judge what you’re going through, and no one can understand what you’re going through. Be confident and don’t be shamed by this. Get the help you need. Call 911. Don’t wait for a tragedy. Get the guns out of the house–now. Hide the knives. You can live with a butter knife until you figure this out. You’re more than just a caregiver. You’re family. As much as you want to give up–you can’t. But don’t go it alone. Don’t isolate yourself. Reach out–get help–share your story. We’ve all been shamed for far too long.
CNN article link:
Great resource: Elder Rage, by Jaquelline Marcell
Carol O’Dell’s book, Mothering Mother is now available for your e-reader! Kindle version availble here.