Have you stopped having people come into your home because you don’t want them to see your dad/husband or wife “that way?” Are you hiding how awful it really is?

Alzheimer’s, Lewy Body, dementia and other neurological based diseases affect the brain in different ways. Some individuals become docile, too docile. They stop talking, and pretty much stop moving. For others, Alzheimer’s turns them into a fidget machine. They pace incessantly, talk, babble, rant, need next to no sleep, and when forced to sit, their knee jiggles non-stop. Others are paranoid and will lash out at anyone who tries to touch them–it’s as if their brain–and body–is on fire.

And for some, Alzheimer’s makes them anxious, mean, and violent. There’s no other way to  put it.

According to a recent study conducted by the Journal of the American Medical Associations of resident-to-resident violence in Massachusetts nursing homes and dementia special-care units, researchers found that about 25 percent of the dementia population in a care facility had violent tendencies.

More and more law suits are cropping up because staff and patients are being attacked, and resulting in physical injuries such as fractures, dislocations, and lacerations.

They curse when before the disease they were  practically saints. They use vile language that would shock and embarrass a sailor, and their eyes look as if they could kill you in your sleep. For many, their violence is more of a protective mechanism.  They may thrash, hit, try to bite if they feel cornered, yell, cry. It’s more exhausting and embarrassing than harmful. They act like really big two year olds.

In all of these cases, Alzheimer’s affects each brain differently. You  have to think of it as a chemical reaction, not a personal decision.

And then, there are the truly violent. Their rage is unpredictable and unprovoked. They slap, bite, kick, pinch, and for a few, and surprisingly, they possess the power to break bones, knock someone down, and are truly dangerous. Many are placed in care facilities because their families can’t handle it. Their families don’t visit as often because they’re scared. They feel as if their loved one is dead to them, and yet they struggle with guilt every single day. It’s an awful existence for everyone involved.

It’s that interim time that I’m addressing–when you’re starting to notice some anger–gritting teeth, cursing, grabbing your wrist really hard, throwing you against the wall–and you don’t know how far this will go. You make excuses. You provoked it. You shouldn’t have confronted them. They’re not taking their meds. It only happened once…these are just a few excuses we create to “protect” our loved one.

I urge you to speak to your doctor now.

For some, an added medication that stabilizes their mood (and yes, it may make them lethargic) can curtail their violence. It doesn’t work with everyone, but if you catch it early, it just might work.

For many, particularly spouses, you hide these changes in behavior from your children, your neighbors, your friends.

• You stop having people over. You wear long sleeves to cover bruises.
• You’re afraid all the time. More afraid they’ll take your husband or wife away than that you’ll be hurt.
• You can handle it–is your rationalization–but the guilt, the shame, the thought of being separated is what keeps you silent.
• You grieve the death of your marriage, of the life you had–and yet, you can tell no one what you’re going through.
• You don’t want anyone to “see” your husband, your wife this way. You want to preserve their dignity.

I understand. I did this with (or for)  my mom. I shielded her from the world. I didn’t let people know how chaotic, out of control, scary and heartbreaking it really was. I let her dig her fingernails into my arm and scream at me, her eyes so wild I didn’t even recognize my mother any more. If I would do this for my mother, I can truly understand how a husband or wife would be wiling to do even more.

But here’s what I came to realize:

This is a disease. No one will judge you or your spouse–and if they do, they just don’t  understand what’s happening.

Your loved one can not  help this. This isn’t their “inner self” or what they’ve been thinking all along. You didn’t contribute to this either. It just is.

It really is nobody’s business and you don’t have to share it with everyone, but having at least one confidence, one dear friend or your clergy can help lighten your heart.

You know those statistics about caregiver stress and how many caregivers die before their loved one? They’re talking about you!

You fall into that category big time. All this stress could lead to depression, heart disease, obesity, and strokes–and you know your loved one wouldn’t want this for you.

You are not alone.

Sometimes, you just can’t do it anymore. You feel that you’re in a living hell.

This is a truly dangerous state and you have to ask for help.

With guidance, you can find a good care facility that has a low patient to care staff ratio and administers the proper medications needed to lessen the violent outbursts. I know you don’t want to “dope” your loved one. But you can’t continue to be hurt, or risk that for others.

This disease can get really ugly, and if you’re in this situation, I am so, so sorry–but please, don’t suffer alone.

That’s not love, and your loved one wouldn’t want this for you.

Screw what your family would think, what they neighbors will think. Protect yourself and know that asking for help is the right thing to do.

I can’t promise you that you and your spouse can stay together–in the house. I can’t promise you that this is going to all magically get better.

Sometimes we really do have to grieve and let go–knowing that you’ll never get back what you had.

But I promise that while it’s going to be hard–and lonely—and you’ll probably feel guilty–after a time, things will get better.

Your loved one’s care might be better managed with help. And although your life won’t be the same, it can be good. A new good. A different good.

If you’re experiencing Alzheimer’s, Lewy Body or dementia related behavioral changes (violence or otherwise), please consider calling the Alzheimer’s Association National Hot line. It’s confidential and you can speak to someone who really cares. The number is: tel: 1.800.272.3900

~Carol O’Dell, author of Mothering Mother

Tags: grief, hope