Where do you find support?

Lisablock02

I am caring for my mom who is only 74. She had an episode that resulted with her moving in with us while we get her into someplace more appropriate for her needs. Since coming to our home she has improved in many ways. Through this experience, I find that I am struggling to understand her diagnosis. The way that her memory, personality changes, and behaviors are presenting are so very confusing to me. I find myself second guessing the measures I have been taking to provide for her because she masks and presents as "normal" and then she has days or moments on end where her lapse in judgment and memory are so significant that it is obvious that she needs support. I think she only has a basic awareness of how impaired she is at times because she can float through life with minimal confrontation with her impairment (she is a lifelong loner and people avoider). I however see it in small ways multiple times daily. It makes me feel like I am losing my mind at times. Where did anyone find people who were able to reinforce and or normalize your experience? I just want someone to tell me that this is "normal" and help me understand what is going on before my eyes.

terei

Your mother needs to be assessed on her WORST day, not her best. Her abilities may come a go for a long time as her brain is being damaged. Dont try to ‘figure it out’ because that is using logic to try to understand a broken brain which is not going to help you. All the you describe is ‘normal’ for dementia

H1235

Welcome. You are definitely not alone. There are many times that at a short visit mom will seem completely normal. I think a lot depends on the topic of conversation. She has anosognosia bad. She has plans to do so many projects (she is a crafter) that she will never be able to do, doesn’t understand why she can’t live in her house, thinks she needs to go through everything in her house and decide what to do with it, tells me she enjoyed the cookies I brought her but won’t eat the triple zero healthy yogurt because she thinks it has too many calories, doesn’t understand why she can’t pick out a new bra herself(she wants a style popular 30 years ago, I could only find it on Amazon)I could go on and on, thinks she is perfectly capable of mowing her lawn (ridiculous to hire someone). I know she is not safe to live alone, but those nice/normal visits mess with my head. It would be mentally easier if it was in your face obvious (not remembering my name, totally confused) , but obviously I don’t want that either. I think part of why mom is doing so well is because she is in a safe environment with a regular routine. Without this she would be much more confused and upset. Hang in there.

harshedbuzz

@Lisablock02

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

There are a couple things that could be in play here—

Many times when a PWD has been living alone they may not be taking appropriate care of themselves in terms of nutrition, sleep, routine which lead to a triggering event and being forced into care (aides at home, living with a child, MCF). Once they're consistently getting their medications, meals, rest and some social interaction they have a bump in their ability to function. I saw this with my widowed aunt who'd been very isolated— she blossomed in a well-run MCF.

Many/most PWD will have some degree of anosognosia. Even if the admit to a worsening memory, they don't recognize the apathy, inertia and executive functions that come with the diagnosis. I noticed my dad abandoned activities that would have demonstrated his change in cognition fairly early in the middle stages.

As a caregiver, you are scaffolding your mom in ways you probably don't realize. If you weren't there to prompt, she'd not be functioning as well as she is.

Another concept is showtiming. This is when a PWD is able to hold it together temporarily and appear less impaired than they actually are. This often happens with medical appointments and visitors, but sometimes with closer family when the living situation is still novel.

There's an analogy another poster once made about a diseased brain being like an old string of Christmas lights. Sometimes, none of the lights come on, sometimes a few may be lit, sometimes there's a flicker and then nothing. But sometimes, if you manipulate the cord "just so" the entire string will light if only for a few seconds. Sometimes the wires line up for some reason. Enjoy this but don't let it lull you into second-guessing decisions you make around her safety and well-being.

HB

Lisablock02

https://alzconnected.org/discussion/comment/242511#Comment_242511

This is helpful. Very helpful. I am a mental health professional and as a result was very very lucky to get my mom a neuro-psych assessment very quickly. This assessment did provide a prelim diagnosis of Alzheimer's…but we are waiting on a neurology appointment (because getting into specialists is a very special experience). Because of what I do for a living I am craving knowledge beyond what I can google or glean from my training. I don't know what is "typical" or what to expect. It's like throwing darts on a moving dart-board while also turning out the lights. I have no idea if my actions/decisions will "hit the mark" so to speak. Am I even playing the right game? No idea. I have to wait for someone else to shed light on the situation and help me see what is actually going on with my mom's brain. It's very confusing and I am very very exhausted as I am the sole POA/Medical advocate which leaves me in the position of having been minimally involved in my mother's life to practically running the entire thing (while working to present the situation as if she is in control of it all).

Many of these changes appear to be subtle and are small parts to a bigger picture. I am also starting to understand how long these changes have been coming on and the different ways her personality has been slowly shifting and changing over the past 6 or 7 years or so. She has functionally made improvements since coming to our house and I had wondered if the regular meals, social interaction, and even lower stress due to her care being coordinated for her (fewer surprises like dealing with medical appointments and issues or confrontations due to confusion or forgetting information) was the cause. We are looking at her being able to have a few years in a facility that I think she will like and will provide a sense of independence that is appropriate for her current stage and I am also looking forward to objective eyes on her and providing additional perspective - not to mention some help in coordinating her care (I'm still in the middle of my career and parenting three kids aged 6-17!).

Thank you for the reframing. That's a golden nugget to hang on to.

H1235

You may find this helpful.

https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun

SDianeL

most of us had the same questions after our LO’s diagnosis. The problem with dementia is that there is no “one size fits all” progression. Each person progresses differently due to many factors, one of which is what area of their brain is affected by the disease. There are good days and bad days and worse days. It’s almost like the wires in their brain are short circuited and sometimes do connect. That’s when you question the diagnosis. The other thing is denial. I didn’t want to admit that my husband had an incurable progressive disease. 2 suggestions: Read the book “The 36 Hour Day” and search online for a chart showing the 7 stages of dementia listing behaviors. Then start keeping a list of your Mom’s behaviors. Do not let her see the list. It will help you communicate with her doctors. Learn all you can about the disease so you can help her. Tam Cummings videos on YouTube are also excellent. Come here often for info and support. 💜