NYT article about talking to people with dementia

[Anonymous]

I thought I'd use one of my gifts to share this with the people here because so many of us are in this situation.

https://www.nytimes.com/2023/06/23/well/family/alzheimers-talk-caregivers.html?unlocked_article_code=vfjJ3gDbT09ef4kn0boTE2m-fXbTN1iuQFIWP_RAqVv_TexASpPeLxdTRz7II-HXoXy7iSto83ZSneAjGTnB_6evEyX3XPNZ2_o74vSDDUf4FYyyXZ2yVnnuIw5Tol45Qufols_tTHL4863A-Dw4tHdOfZTffXprP697lEsHFAuxesBiQ0Qqh-Zr8KqKrMIm2LisKYNjTYE_yr5hYvjJGZZzr5WKzIk5VCAiF8jSKM8JsU8LbgIlb4lA1fDWYmikiLBQ8ZQlXovKrDs36VArTpM-qn89n2r3nHUoFW2_O1q_Fc3Yqy7jAa_eHg2zaSFqJuVT2JUOHL_-3zmTvkxhk76b4h1maQId&smid=url-share

Any other articles you've found useful, or things in this one that did/didn't work for you?

[Anonymous]

There are good tips in here.

I would add that when you start to do this with a loved one (deflecting, avoiding topics, acting happy and calm when you’re not), you’ve entered an important new stage of the person not “really being there.” It feels terrible to be inauthentic with a person you love and respect and it is a real loss. So sometimes I think people resist these strategies in order to avoid that feeling. There’s a lot of slow motion grieving in these situations that can be hard for people to honor/deal with because the other person is “still there.”

[Anonymous]

I did all these things with dad. These tips are all over the internet. I think it may be part of the DAWN method. I watched videos with tips, read articles. It is useful....with some types of dementia.

Mom has angry, hostile, paranoid, save my wrath for one child and act out against others when she distances herself...dementia. I think we need to see more articles about abusive/hostile dementia. Good luck using all these tips when you are the target. Also, researchers are finding a decent percentage of these tyrants always were difficult, so don't it doesn't work to tell us family members it's not the same person at all. In mom's case she is saying all the things she may have said before and then apologized. There is no remorse anymore, no filter and nobody to commiserate with because I am the target and when she lashes out at anyone else it's my fault because I backed away and hired a team to manage her care.

[Anonymous]

Thank you for gifting us the article OP!

[Anonymous]

Anonymous wrote:I did all these things with dad. These tips are all over the internet. I think it may be part of the DAWN method. I watched videos with tips, read articles. It is useful....with some types of dementia.

Mom has angry, hostile, paranoid, save my wrath for one child and act out against others when she distances herself...dementia. I think we need to see more articles about abusive/hostile dementia. Good luck using all these tips when you are the target. Also, researchers are finding a decent percentage of these tyrants always were difficult, so don't it doesn't work to tell us family members it's not the same person at all. In mom's case she is saying all the things she may have said before and then apologized. There is no remorse anymore, no filter and nobody to commiserate with because I am the target and when she lashes out at anyone else it's my fault because I backed away and hired a team to manage her care.

Yes, I agree. The article may be helpful to people who have a loved one with early stage dementia or whose dementia is primarily manifesting in confusion and memory loss. But what about the many dementia patients who are violent, aggressive, abusive? What about the refusing to eat or drink or take meds or go to the Dr? What about the anger and depression that many dementia patients have? These are not uncommon aspects of dementia yet no one talks about how to deal w them. Most people think dementia=asking same questions/telling same stories over and over and being forgetful about where you place things. It’s so much more than that in our experience with my MIL.

[Anonymous]

The PPs are making great points. Many (most?) dementia patients can’t be managed safely at home by a single person. At best, you might find the right combo of meds to keep them manageable.

Memory care wards with teams of caregivers and doctors who can dispense sedatives are a necessity in many cases.

[Anonymous]

Anonymous wrote:There are good tips in here.

I would add that when you start to do this with a loved one (deflecting, avoiding topics, acting happy and calm when you’re not), you’ve entered an important new stage of the person not “really being there.” It feels terrible to be inauthentic with a person you love and respect and it is a real loss. So sometimes I think people resist these strategies in order to avoid that feeling. There’s a lot of slow motion grieving in these situations that can be hard for people to honor/deal with because the other person is “still there.”

This is a really beautiful way of putting it. There is a self-protective boundary being set when you realize the person is not really there anymore. Your interaction becomes about keeping them calm and at peace. The expectation that you will get anything authentic back goes away.

[Anonymous]

My mom died of Alzheimer's earlier this year and we were fortunate that she didn't become hostile or mean. She was very, very anxious sometimes and wanted things that were no longer possible - to go to her childhood home, to see her parents. I do remember how hard it was to tell her what felt like fibs to help her feel better - but do think it was the right thing to do.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I did all these things with dad. These tips are all over the internet. I think it may be part of the DAWN method. I watched videos with tips, read articles. It is useful....with some types of dementia.

Mom has angry, hostile, paranoid, save my wrath for one child and act out against others when she distances herself...dementia. I think we need to see more articles about abusive/hostile dementia. Good luck using all these tips when you are the target. Also, researchers are finding a decent percentage of these tyrants always were difficult, so don't it doesn't work to tell us family members it's not the same person at all. In mom's case she is saying all the things she may have said before and then apologized. There is no remorse anymore, no filter and nobody to commiserate with because I am the target and when she lashes out at anyone else it's my fault because I backed away and hired a team to manage her care.

Yes, I agree. The article may be helpful to people who have a loved one with early stage dementia or whose dementia is primarily manifesting in confusion and memory loss. But what about the many dementia patients who are violent, aggressive, abusive? What about the refusing to eat or drink or take meds or go to the Dr? What about the anger and depression that many dementia patients have? These are not uncommon aspects of dementia yet no one talks about how to deal w them. Most people think dementia=asking same questions/telling same stories over and over and being forgetful about where you place things. It’s so much more than that in our experience with my MIL.

+1. Also, loss of ability to communicate. My loved one w dementia cannot speak in an intelligible way anymore so we have no idea what she’s saying/trying to say and she gets incredibly (understandably) frustrated w us for not understanding her.

[Anonymous]

Anonymous wrote:There are good tips in here.

I would add that when you start to do this with a loved one (deflecting, avoiding topics, acting happy and calm when you’re not), you’ve entered an important new stage of the person not “really being there.” It feels terrible to be inauthentic with a person you love and respect and it is a real loss. So sometimes I think people resist these strategies in order to avoid that feeling. There’s a lot of slow motion grieving in these situations that can be hard for people to honor/deal with because the other person is “still there.”

Thanks for sharing this insight. Frankly, I've gotten silently frustrated with DH, his siblings, etc, for carping/complaining about their dialogue with FIL. To me, it seems straightforward to adjust the conversation to match the loved ones' new mindset, even if it may mean repeating some discussion points again and again. It's the new new.

PP, you've helped me see what may be going on with DH and now be more empathetic with him as well as his relatives. Thanks again.

[Anonymous]

Hope there are some gerontologists and others who routinely read this forum as some PPs here are making some critical observations about the lack of laypersons' literature, etc on how to relate to loved ones, relatives who are aggressive and hostile, especially ones who may have been that way over the arc of their lives. It's really hard.

In my family's case, our dad was the kindest guy, gracious to all. He did, however, not like pain. Alas, he broke his hip and never recovered to walk again. He would growl and snap at the nurses and aides when they need to adjust him in bed, move him for his shower, etc. I spent a fair amount of time sharing this with the staff on his floor, "You know, if my dad were cognizant, he would be mortified to know that he just snapped at you. He always had a kind word for anyone and inspired his children to be the same." This usually opened up to conversations about their own relatives, etc. I hoped it helped both them and for his care.

Our mom, OTOH, had a short fuse and probably a BPD as per my shrink in my younger years. This really only lessened, though didn't cease, when she entered memory care. Yes, she could still be ferocious, but the staff were great at keeping her isolated from any residents who were triggers and vice versa. This did help us as those last years were more pleasant with her.

All that said, books, lectures, podcasts, etc on how to manage aggressive dementia patients would be wildly appreciated.

[Anonymous]

Alzheimer’s sucks for everyone. Helping my dad right now. Answering questions over and over is one thing, but watching the anxiety and frustration is another. I’d like to see more on caregiving for a parent who caused you trauma. It’s hard and is bringing up so much. But, there’s also a weird healing in it too, maybe because I’m no longer fighting reality and I’ve finally managed to only do what I want to do and/or have the energy to do.

[Anonymous]

Anonymous wrote:Hope there are some gerontologists and others who routinely read this forum as some PPs here are making some critical observations about the lack of laypersons' literature, etc on how to relate to loved ones, relatives who are aggressive and hostile, especially ones who may have been that way over the arc of their lives. It's really hard.

In my family's case, our dad was the kindest guy, gracious to all. He did, however, not like pain. Alas, he broke his hip and never recovered to walk again. He would growl and snap at the nurses and aides when they need to adjust him in bed, move him for his shower, etc. I spent a fair amount of time sharing this with the staff on his floor, "You know, if my dad were cognizant, he would be mortified to know that he just snapped at you. He always had a kind word for anyone and inspired his children to be the same." This usually opened up to conversations about their own relatives, etc. I hoped it helped both them and for his care.

Our mom, OTOH, had a short fuse and probably a BPD as per my shrink in my younger years. This really only lessened, though didn't cease, when she entered memory care. Yes, she could still be ferocious, but the staff were great at keeping her isolated from any residents who were triggers and vice versa. This did help us as those last years were more pleasant with her.

All that said, books, lectures, podcasts, etc on how to manage aggressive dementia patients would be wildly appreciated.

+1,000,000 I posted already, but wanted to chime in again. My dad was a walk in the park as compared to my combative mother. Yes, all the tips were great and worked. I found them all with some quick googling back when he was alive.The advice online from "experts" about dealing with hostile, abusive dementia is just awful until you got to idea #10...if you can't take it anymore and cannot recover from the burnout find a care facility. I think that medication and a care facility need to be #1. The amount of abuse I endured trying every recommended by experts was harmful to my health and my family. Up to a certain point they have a right to keep going off medication and my mom off medication, let alone not on the right dose is not something any human should have to endure.

And along those lines, for those of us determined not to torture and abuse our own family members, we need to be talking more about the option of death with dignity for the dementias in this country. I want the right to determine now that once i reach a certain point, I can part ways in a deep slumber and never verbally or physically harm a loved one or stranger. All that money could go toward making sure my own children always have money for medical bills, and college for the grandchildren and can go to charities that help those less fortunate. Why would I want all my hard earned money to go toward keeping me alive alienating and traumatizing all around me and then whatever is left my kids will need to spend on therapy.

[Anonymous]

Thanks for the article, OP, and hugs to everyone in the thread. I am just now entering this stage of life with my father.

[Anonymous]

It's tough. Both my in-laws have dementia, and my DH hasn't fully come to terms with it. Thanks for sharing the article, OP.