Toddler comparison

Karen-luvsumer

This is a rant. I’ve been caring for my DH who has been diagnosed with Alzheimer’s nearly 3 years ago which was at least 2 years after I had been begging for a diagnosis. When someone compares caring for a spouse with Alzheimer’s is like caring for a toddler I want to scream. It is such a dismissive comment for the person with Alzheimer’s and a condescending comment for the care taker. It’s dismissive for the person with Alzheimer’s because it doesn’t acknowledge the person they currently are or the one they once were. It’s dismissive and condescending for the caregiver because it implies that they lack the where with all to deal with a toddler or that it’s that simple. Most caregivers have dealt with toddlers somewhere in their past and have developed some skills for managing situations. Believe me, if those skills would work they would use them. I have worked with toddlers in my paid career and I would take 5 toddlers on their worse day rather than someone with Alzheimer’s. A person with Alzheimer’s is more physically capable, stronger, has delusions, hallucinations, can be more creative and destructive. So please, don’t try to placate me with that comment. What you could say which would be more appreciated would be, What can I do to help? , I’m here for you. What do you need? Anything but, it’s like caring for a toddler!

hiya

I’ve always taken the toddler comment to mean their current abilities ie you have to watch them closely, they are unable to bath by themselves, can’t tell you when they need the bathroom etc. Maybe the delivery of the comment makes a difference. It’s a hard road and we are all doing the best we can. Take care of yourself too.

Karen-luvsumer

Thank you. I realize the toddler comment is a trigger for me. Unfortunately, I’ve heard this comment from medical professionals like drs, and nurses. They are trying to be sympathetic but I don’t find it helpful. It’s a language thing for me. I was taught that when communicating about people with disabilities you state the person first and then the disability. For example, you should say a child with autism rather than an autistic child. I thought hospital workers have been taught to refer to the patient in room 10 with a broken arm rather than saying the broken arm in room 10. As a spouse I find it offensive. I didn’t marry a toddler. I married someone who developed Alz. Yes, this disease has similar characteristics as a toddler but both my husband and this disease are so much more.

Russinator

((HUGS)) My heart goes out to you and all us caretakers

harshedbuzz

I also bristle at the infantilization those who don't have the capacity to function as is typical of their age.
That said, age comparisons and equivalencies (as listed in the 7-Stage Model of progression) can be a useful framework for decisions regarding autonomy and safety.

HB

Carl46

You are correct. Caring for a PWD is like caring for a toddler, except much more difficult. No one knows what it's like unless they have done it themselves, so I don't really blame them for not understanding. "Forgive them, for they know not what they do."

Arrowhead

I have compared the regression of the disease to being the reverse of a child. While a child learns to do more and more, a dementia patient learns to do less and less. It's like mentally ageing in the opposite direction.

Karen-luvsumer

Thank you for your insight. I have to admit that this time I heard the comment I was particularly sensitive. It had been a very difficult week and it came from a medical professional. The lesson this disease is repeatedly teaching me is to expect nothing so that you’re pleasantly surprised when something or someone actually delivers. In this case expecting a medical professional to have a better understanding of the disease was too much to ask.

Iris L.

I agree with the desire not to infantilize a PWD and about using person centered language. Nevertheless, using child comparisons is a shorthand way of addressing care needs. Many time new members wonder what to do about certain behaviors, when in fact, if they were presented with the same behavior in a child or toddler, they would automatically know what to do. For example, when should a PWD not be left alone? Would one leave a toddler alone? Of course not. Would one leave dangerous chemicals and other inedibles out? PWDs are prone to put things into their mouths, like a toddler.

Yes, the progression of dementia causes a reversal of independence and judgement. Keeping the PWD safe is a primary goal of caregivers, but many family members seem to be oblivious or seem to feel guilty about taking necessary safety measures. The home needs to be dementia-proofed, the same way that a home is child-proofed.

Iris

GothicGremlin

@Karen-luvsumer - I'm with you on this. It may be a rant, but I think it resonates with a lot of us.

I agree with others that charts that sometimes describe the abilities of those with Alzheimer's to those of children, can be useful, but reading about age comparisons is not the same thing as having someone in conversation refer to the person with Alzheimer's as being like a toddler. Medical professionals should know better! It's dismissive and disrespectful.

I hated it when people would discuss my sister in that manner - and I heard it often enough. She was a fully formed person, just like the rest of us. She just had the bad luck to get Alzheimer's.

Karen-luvsumer

Thank you to all who have responded to my initial post. I’m praying for all of you and your LO on this difficult journey daily. I posted this comment for a variety of reasons. I was very frustrated, felt unheard and wanted to educate others that when speaking to a stressed caregiver and when they compare caring for SWD to caring for a toddler it can be interrupted as dismissive and condescending. Yes there are similarities but there are significant differences, which this comment doesn’t acknowledge. The biggest one is that with a toddler you can celebrate their many firsts, word, step, skill but with SWD you mourn the last time they said your name or took a bath. I don’t mean to judge or disrespect anyone who makes this comparison. I just wanted to educate.

HollyBerry

Thanks for bringing this up, because it's been on my mind lately, too. I was thinking about how with kids, or with kids or adults with disabilities, there's growth or gains, or hope for growth or gains. They learn. We see losses. We live with people in adult bodies who act very much like a "threenager" and a hormonal 12-year-old girl at the same time — yet we aren't parents of that person and the power differential is so very different. Some days it feels like she is reliving her adolescence without any limits or controls on her behavior. When she screams "I can do what I want!" I realize my control over the situation is limited - what am I going to do about it? I have power she doesn't realize and the only way I can use it is behind her back - if you yell at me in the store, that's the last time I'll ever bring you to the store - but I can't use that power to change her behavior because memory is required for learning and her brain can't do that any more.

So yes, @Karen-luvsumer , I think I"d take a classroom of toddlers over a person with Alzheimers, too. Hugs to you!

Karen-luvsumer

Thank you HollyBerry. You’re so right! The range of abilities a toddler exhibits and a person with Alzheimer’s or dementia exhibits is completely different. It’s always a guessing game. A toddler’s range of behaviors is limited, and typically matures over time, whereas a person with ALZ’s behavioral range can cover a lifetime. They might act appropriately in one moment and in the next scream, whine, cry, hallucinate, fabricate stories or do something violent. As a caregiver you’re always on edge. They are no longer learning while you’re constantly learning new ways to cope and adapt. Thank you so much for your comment and may God bless you!

H1235

Dementia is complicated! On this site I have seen on several occasions where caregivers (usually the children) describe a lo in stage 5 or even 6 that is still living alone, driving or managing their own finances. Kids don’t want to take their parents independence away. They hold tight to their role as the child. I think for these people pointing out that their parent is acting at the equivalent age of a toddler is helpful. I think this comparison helps them to realize that the roles are now reversed ( it has for me). That they need to take control and be the responsible adult, because their lo is no longer able. I know it is not as simple as an age comparison, but it’s a start for someone just starting this ugly journey. Not everyone is to a point that they can truly understand how much worse than that it really is. Just a different perspective.

TLN2025

I am exactly in those shoes of just starting this journey with my mother who officially was diagnosed yesterday with moderate-severe dementia. In my journey, I'm trying to educate myself (and my siblings) on the ALZ disease (reading books, finding resources, websites, etc…) and I thankfully came across this site (and support chat). My mom has been living with my husband and I for just over a year because we saw signs of memory/cognitive issues a few years ago. It was a bit challenging to transition her from living "independently" (it wasn't independently because I would go over multiple times a week to cook, clean, fill medications, check-in, attend dr. appts, etc…) but as we saw things decline and safety became an issue, we knew it was time to have some difficult discussions (while she could still understand and feel a part of the decisions). I'm glad we did because if we had waited (until now), her cognitive decline wouldn't allow her to feel a part of the decisions and it would have only been more confusing and difficult for her. I will admit that in the last couple months I've also caught myself describing caring for my mom as "like having a toddler". I have used the term from the perspective of seeing and hearing her amazement or wonderment. Being in the car and seeing things through her eyes. Things she sees and says "wow, I don't think I've ever seen that before…. (even though we know she has), or did you see that…..(we are always so pre-occupied with doing things, going places, etc…) that we miss or overlook things. Those little glimpses of wonderment that she sees are times that make me smile. But having read some of the comments on how difficult times are for some care givers I can completely understand the negative connection the term "toddler". I appreciate everyone's comments regarding the original post (and it's okay to rant - it's part of having a support group) as it will definitely make me pause and think about other people's perspective of the phrase.

housefinch

This conversation really resonated with me, too. I think the toddler comparison also omits the grief triggered by seeing your PWD behave in ways that show their deterioration. Most parents of toddlers aren’t simultaneously feeling grief and sadness every time their toddler does X or Y behavior. Sending you hugs.

Bridge4

Housefinch, I was thinking the same thing. With toddlers you might get frustrated at times, but then they just melt your heart by doing the most loving things imaginable. Oh, and that look of excitement and pure joy when you come in the room and they are just so glad to see you. You’d have to look long and hard to get any sort of satisfaction like that from a LOWD.

ARIL

I have to laugh at myself. I have avoided clicking on this thread because I was afraid I would read: “My LO is acting like a toddler, and…” But no! Instead I got validation for my own annoyance when someone compares my PWD to a child. I hear this as denying respect and dignity, and it makes me furious, although I typically say nothing. It also leaves me feeling isolated, as though no one understands me either. So rant on!

But the thread also taught me that there are circumstances in which the comparison might be useful (for adult children in denial) and that the form matters (a written chart that you choose to read rather than an oral statement that comes at you all of a sudden). OK. I can see that.

I think that medical practitioners are taught to use analogies to explain complex concepts to the general public (“an aneurysm is like the bulge in a garden hose”), but the problem with analogies is also their power: by definition they compare things that are not the same. Whether they are functional in communication depends on the dynamics of the situation. I hope health-care professionals read this thread: they will see that they need to be more careful with this one.

I am glad I clicked. :)

Karen-luvsumer

https://alzconnected.org/discussion/comment/243717#Comment_243717

Karen-luvsumer

Aril, I too am hoping medical professionals see this thread. I understand how analogies may be helpful but in my mind this is not a good one. I have found the descriptions of behaviors in charts more helpful. A PWD is demonstrating a regression of skills which is the opposite of a toddler who is gaining skills. May God and his angels be with you.