I am in denial. How do I accept this?

Siamese2025

My mom got diagnosed with dementia about a month ago. We knew there were some problems going on for 2 or so years but things got hard trying to get her to go in and get testing done to get formally diagnosed (long story). I speak with her on the phone almost daily for 10-15 minutes (or until she is no longer able/ not wanting to keep talking). There are more times than not that I have noticed that she seems to be clear headed and does not sound like someone who has dementia. According to the person who diagnosed her, she is at stage 5 of 7. Then there are some times where she will not remember what we were discussing or begins to stutter and gives up on what she is trying to say. Hearing my mom having more good days rather than bad ones has me wondering if she actually has dementia or not. I am going to visit her in October which will be the first visit since she was diagnosed. I am scared this denial is going to fade away once I actually spend time with her and it's giving me horrible anxiety. I want to make sure I remain calm around her and not discuss stressful situations or anything that may upset her. I don't know what to do. I am at a complete loss. I hope this all made sense.

SusanB-dil

Hi Siamese2025 - Welcome to 'here', but sorry for the reason.

I understand not wanting your LO to have this horrid 'thing'. But it also sounds like you are not in complete denial, just that you don't want this for her. I sympathize with that!

A couple things come to mind - first is knowing that a LO can 'showtime'. This is exactly what it sounds like… they can 'put on a show' for a certain amount of time that 'See, look, all is just fine thanks'. But when the reserves run out, that is when you know something is amiss, as in the forgetfulness of the discussion, the stuttering, etc.

Another thing - when you visit - make very sure mom is paying bills on time, handling finances, taking meds correctly, and eating properly. These are huge indicators of an issue. ~ Check the utility bills, and make sure she is not spending anything on scams. ~ Check to see that meds are being taking correctly, as in not missing any doses, or taking extras. ~ Make sure foods in the fridge and pantry are not expired, and that there is more nutritional value rather than junk food or sweets.

Also driving - since she has been diagnosed, should something happen, insurance may not cover a dime. And also, you don't want her hurt nor hurting someone else. We took MIL off the road when she admitted she did get lost going to the hairdresser. A few weeks later, she finally admitted that she got lost several times, as well as coming to an intersection and forgot what to do.

And of course, paperwork - make sure DPOA is in place and that someone has HIPAA accesses. Very important!

Here is something that might help about the stages - most of us here on the forum do go by '7 stages', and some doctors go by '3-stage'. I find that the 7-stage model is way more helpful.

DBAT: https://us.v-cdn.net/6037576/uploads/B0XGDF5TALMA/dbat-287-29-281-29.pdf

caregiving daughter

With dementia, there is no denial. Rather, it's cognitive impairment and almost a complete unawareness of what is happening. Please do understand that there are feelings here including the patient being very scared. They cannot keep up with conversations and have a difficult time functioning in what can be a dangerous world.

I am concerned about your mom being alone. Phone scams, intruders, falls, or an infection could have devastating consequences. Please investigate 24/7 care. You didn't mention a car, but bottom line, if there is one, it must be removed or disabled immediately.

Given you are asking how to accept this. WRITE DOWN WHAT IS HAPPENING NOW. For example, 1) you suggested food delivery and your mom said no way, 2) her doctor asked her to take her blood pressure each morning and her machine doesn't work but she refuses to spend $20 to replace the machine, 3) she complains she is out of her medication yet again. After creating your list, read through the whole thing and look at the situation in entirety—all these pieces will allow the true picture to become apparent.

Stop feeling like you are the bad guy. Dementia is the bad guy. You are a loving daughter just trying to keep your mom safe. Last, get yourself into a couple hour class on dementia (Alz often sponsors). You need to know what you are up against. I held it together until I went to one myself. When it was time to introduce myself, I just started crying uncontrollably. You need this support system. Thinking of you.

ARIL

Sorry you are facing this, and yes, we all understand how disturbing it feels.

I agree that you will see a lot being with her 24/7. Like Susan B-dil, I don’t think you are in denial so much as really sad and wishing hard that your mom could be fine. I understand that, for sure.

Those phone calls do not provide enough information about her condition—and you know that already. If she is in stage 5, you will see a lot in person. You need to see and understand, so you can help her. (To answer your question directly: no, I can’t imagine that a diagnostician would identify as stage 5 someone who doesn’t have dementia.)

I agree on the things to look for: finances, food, medication, hygiene, safety, judgment.

But I have one more piece of advice: This visit is not only a clinical investigation. It is also a visit with your mom. Plan something enjoyable: Is there a familiar restaurant she likes? Could you take a drive to look at familiar places? Can you sit outside and watch the sunset? Can you look at flowers in a garden? Can you look over old family pictures? I am thinking of something low-key, with few demands and not much noise. But it’s worthwhile to plan to make some good memories for you.

This journey is hard in so many ways. Notice the things you can cherish, and save them up for later: the laugh together, the conversation, the shared meal.

H1235

My mom was diagnosed at stage 4 and told by the doctor she was not safe to live alone. The first year after her diagnosis was absolutely crazy. There was so much to do! I would start thinking about your planB. If there is any chance this might include assisted living you should consider getting her on a waiting list. Since you talk about going to visit I assume you are a ways away. Is there anyone close by to keep an eye on her? I agree with others that finances, food, safety concerns (burnt potholders) and generally cleanliness are something to watch for. My mom told my brother she was able to do her own laundry just fine and he believed her without any question (she had clean clothes). While I was there I found she had run the washer twice and never put clothes in it. I’m sure she was eventually able to get a load done, but that doesn’t mean she was perfectly capable. Another example, I eventually found out she hadn’t replaced her toothbrush for 2 years. There are a lot of subtle little things you just don’t think about where they struggle. It’s easy to get swept up in a nice normal conversation and think it’s really not that bad.

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

https://www.helpinghandshomecare.co.uk/care-advice/what-is-show-timing-in-dementia-patients/