To drug or not to drug

tboard

I have always been a minimalist when it comes to medications. As my husband's mixed dementia got worse and his behavior became more aggressive I consented when his doctor suggested more drugs. The drugs helped in that we were able to care for him without getting punched or kicked.

The drugs likely shortened his life, but Alzheimer's and vascular dementia are both fatal and there is no upside to living longer in stages 6 and 7 and dying slower. He didn't appear to be happy and seemed to be suffering greatly.

I recently got beat up pretty badly on a forum on Facebook for suggesting that a medication adjustment might help with a loved ones behavior problems . The group is for people who have loved ones with dementia. The comments I received were pretty mean suggesting that "drugging" him was wrong.

It is true drugs can be "chemical restraints", but it is also true that we need to keep people with dementia safe, clean and fed. Sometimes none of those things are possible without medications.

I'll never comment on that forum again. Don't judge me. Walk a mile in my shoes before you tell me what to do. I did the very best that I could when it came to caring for my DH.

harshedbuzz

I am so very sorry you were judged in a place where you should have been supported. No one deserves that.

It's always struck me how very differently this disease can impact behavior. My friend's mom and my aunt remained kind and gentle; their anxiety was managed with low dose SSRIs and cookies. Dad and my other aunt were overwhelmed by agitation and anxiety that required stronger options in order for them to be relieved of emotions they couldn't process. This allowed them to submit to better hygiene and care while protecting the caregivers from violence.

IMO, the best thing we can do for PWD is to protect their caregivers.

HB

jgreen

https://alzconnected.org/discussion/comment/284791#Comment_284791

the best thing we can do for PWD is to protect their caregivers. No truer words, @harshedbuzz

dcare45

@tboard sorry you got beat up for having an opinion. I agree with you in that the proper use of medications is not chemical restraint. I also believe that leaving a person in a constant state of anxiety, anger, fear and frustration when there are medications to help is cruel.

jgreen

https://alzconnected.org/discussion/77414/to-drug-or-not-to-drug

So very sorry to read about your experience, @tboard You deserve much better than that.

I learned early on that my primary job in this journey was to keep my LO safe, not happy. As his disease progressed and DH became more and more anxious, agitated and in motion most of the day and into the wee hours of the morning, I had to turn to medications. It was an adjustment to find the right dosages, but he does seem more content and both of us are safer.

Stick with us - we care!

Ed's mom

Facebook is harsh. I posted a video of my 2 Great Danes playing and was reported for dog fighting and abuse.

I have found people don't understand that don't live it, and I don't try to explain anymore. You know your life and what you need. My LO is very agitated and angry, a med adjustment helped but we're going for "almost nice" or at least not nasty so another adjustment. This is my limit, I will not be abused when she knows what she is saying. Can't control it? At this time, I don't believe it always, she goes in and out.

Arrowhead

I also believe in avoiding drugs if at all possible. In the case of dementia, they are sometimes necessary to keep either the person safe and happy or to make others safe to be around them. My wife doesn't need any medication except for occasional anger meds on an as needed basis. However, if she had special needs for which drugs are encouraged, I would not hesitate to have the given to her.

CindyBum

Chemical restraints? What ridiculous gobblygook masquerading as thoughtful insight.

I wouldn't give a second of thought to anyone who said such nonsense about desperately trying to help a loved one as they suffer from this awful disease. I actually believe it's cruel to deny drugs to someone who is suffering when you and the drugs could potentially help them.

My friends and family know I'm not a big meds person. But, after my experience with my poor DW suffering from agitation and wandering, and knowing she hated it, I've now told my family and friends if I ever get dementia, to give me all the damn drugs and to never hesitate in giving me what they needed to keep themselves safe and sane and to try and keep me safe. I'm in the process of writing up a document as well. I don't want my future caregivers to wonder or worry like this about the difficult decisions we must all make on this painful journey.

​fesk

I try other solutions before using medicine but use it if it becomes necessary. I think what all these responses show is that everyone's situation and approaches are different. What works for one person, won't for another. I dislike when I see people speaking in absolutes. Life - and certainly this disease - don't work that way. Most people are doing their best with the information they have and trying to make the best decisions they can.

beachwalker5

I totally identify with your IP tboard. I'm in the same situation (I posted yesterday - "Meds for Anxiety/ Agitation "). Multiple people & references (included the much lauded "36 hr Day") discourage use of meds to control behavior problems, I get it, but sometimes the best caregiver behavioral techniques and environmental adjustments just aren't enough to prevent unsustainable crazytown. Let us do what we gotta do and work with a qualified MD to keep your LO (and ourselves!) safe and comfortable and ignore the outside judges who aren't in our shoes. Hope they never have to be…

Emily 123

Bah. Facebook.

A small daily dose of Lexapro created a huge difference in releasing my mom from what must have been a tremendous amount of anxiety. My only regret is that I didn't push for it more strongly and sooner. Meds are a reasonable part of the toolbox since a broken brain can't regulate itself very well.

tboard

judging from the responses caregivers get it. Thanks

Maru

I agree with the idea of the fewer drugs the better, however, if DH becomes anxiety ridden or physically aggressive I would have no problem "drugging" him. The proper dose of the right med would not only make him calmer but also enable me to keep him home and hopefully out of MC. 100% support you.

H1235

I think doctors in general these days tend to over medicate. I hate taking medication and believe it’s important to change your lifestyle or eating habits whenever possible before resorting to medication. But even then, a person with dementia who is struggling with depression, anxiety or hallucinations deserves relief. I doubt lifestyle changes or changes in a caregivers approach will really make any significant difference. I’m sure the long term (maybe even short term) affects of theses medications are not good, but living longer in misery and suffering is not a choice I would make for my loved one. Dementia is terminal. We should make them comfortable as much as we possibly can.

​fesk

https://alzconnected.org/discussion/comment/284894#Comment_284894

Changes in approach can make a significant difference. The wrong approach can easily escalate situations while the right approach can avoid many issues. However, there may come a time when the behaviors can no longer be managed and medication is needed. I wouldn't discount lifestyle and approach - they can make a big difference.

Quilting brings calm

I was on a FB dementia support group for a hot minute. This judging is what went on there too. Medications, facilities, and on and on. I don’t recommend FB any more. The people on this forum are caring, Thoughtful, helpful, and honest without judging.

White Crane

When my husband was first diagnosed with Alzheimer’s, I promised myself that I would never drug him. And I felt very certain about that decision. After a while, however, it became clear that he needed something to help him, and me, deal with behaviors that were challenging and could be unsafe. Medication made it easier for both of us.

Vitruvius

My DW was not mean or aggressive, but she became increasingly confused, agitated and anxious, along with delusions and hallucinations. I agreed with her neurologist that some medications that would calm her would essentially improve the quality of her life for the time she had left, even if this meant she might be mildly “chemically restrained“. Why would we want our LO’s to suffer?

In other cases, I declined drugs that might treat other issues she was having when those drugs made her miserable. In late Stage 6 she began to have silent seizures and was prescribed Keppra. This drug made her very morose (a known side effect) and in discussions with her neurologist I thought it would be kinder to discontinue the drug and give her a more pleasant life despite the possible affects of the silent seizures, which in the end, didn’t seem to be of any consequence. She passed away in very late Stage 7f and I have no regrets about the medications she took or those that were withheld.

notequipped

@tboard For what it’s worth, I couldn’t agree with you more. I’ll choose quality over quantity every single time both for myself and my loved ones if I am in a position to make those decisions for them. I’m sorry that dementia put you in that position.

@CindyBum - great idea to put it in writing.