Anger is grief speaking up

sarahperryrn · May 16

As someone walking through dementia and Alzheimer's with my own family, I keep thinking about a line I recently heard:

"Anger is grief speaking up."

If we want something to change in the next 20 years, we have to speak up…now.

Alzheimer's is often approached as, "See a neurologist and wait." But Alzheimer's is not just a neurology problem. It touches speech, hearing, behavior, mental health, relationships, caregiving, identity, family systems, and daily life.

Who is talking about:

• Speech therapy. What happens when language changes? What is aphasia actually like for the person experiencing it?

• Caregivers. What happens to the spouse carrying this every day?

• Family members. What do children and adult children do with the grief of slowly losing someone who is still physically here?

• Psychiatry and geriatric mental health. Anxiety, depression, agitation, sleep, behavioral changes. Why does this feel separate from memory care when it affects daily life so much?

• Hearing. We know hearing loss is associated with cognitive decline, yet hearing checks are not a routine part of many conversations around prevention and cognitive health. Why aren't we talking more about it?

• Communication. What is it actually like to pick up the phone and call your parent with dementia? What do you say? What do you not say?

We talk a lot about treatments and future breakthroughs, but 20 years is not a long time

Every day counts.

Even my young children see things differently because of their experience with Grandma. When kids hear the phrase "brain rot," they don't think of internet slang. They think about someone they love. They think about the brain, memory, and what it means to lose parts of ourselves.

These are the conversations I wish we were having more often.

"What does daily life look like?""How does everyone in the family feel?""What support should come as part of the package?""What are we missing?"

I would genuinely love to hear from others. What conversations do you wish had happened earlier?

H1235 · May 16

We were very fortunate that mom’s neurologist recommended she was not safe to drive or live alone. It’s was so simple for them to do. Yet I have not heard of may here that were lucky enough to get that very necessary and direct advice. Many professionals seem to believe it’s not their place, it’s up to the families to figure out on their own. Too many people are afraid to take away their parents independence (it’s hard), leaving them in an unsafe situation (driving and living alone). In some cases our legal system makes it difficult to protect them. How dare we even consider taking away someone’s rights, regardless of how at risk of self harm they are.
Everyone seem to associate memory loss with dementia, but my mom has vascular dementia and has very little memory loss. She makes poor decisions, can’t plan, has anosognosia, depression, anger, lack of a filter, confusion and problems doing new things, and an inability to prioritize . I had no idea these were signs of dementia. Everyone should know these just like everyone knows memory loss is a symptom.
I think anosognosia is a symptom that does not get the attention it’s deserves. It can be so dangerous for a person that can’t recognize their limitations. I learned about it here. Not from a doctor or from reading pamphlets or even from the little workshop on dementia I went to.
Someone should also be telling us about the therapeutic fib. Never heard of it til I found this site.

Months of waiting to get into a neurologist, a geriatric physician or psychiatric doctor is not even an option unless you live in a big city. Then there is the waiting list to get into a to get into a care facility! I had no idea!
My mom with dementia is 80 and I’m 60. There is no retirement! I’m in decent health, but I’m getting old, everything aches. I feel like I have more responsibility, stress and pressure as DPOA than I did raising my kids in my 30s and 40s. Seeing mom like this is a very in my face reminder of my own mortality. What will things be like for me, will my kids step up, will they argue about care, would they notice if I developed symptoms, what will happen to my home, does it really matter?

psg712 · May 20

All the things that H1235 said! A referral to the Alz Association and this forum would be a great addition to any packet of materials that a doctor's office could provide.

jen ht · May 20

Yes! I have just been thinking about these things too!

And anosognosia… dad was being scammed and at first I did not understand what was going on.

Excellent points here! People do not have any idea what brain change can mean and can do to a person.

I trusted that dad was making sound decisions and even when it was obvious that he was not making sound decisions any longer I felt like the scammers had more "protections" than I did as someone trying to safeguard his assets.

Anger is grief speaking up

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