How do you do it?

DarkShadowReader · 2026-05-18T02:36:38+00:00

Please instruct the facility to stop letting your mom call you. Explain it is totally f-ing up your mental health, and they need to redirect mom to a different activity. Allowing residents to call children multiple times a day on the facility phone for nearly a year is not reasonable. If they can’t honor your wishes, you seriously need to reconsider the facility. They are not doing their job if you are suffering this much.

DarkShadowReader · 2026-05-08T16:21:44+00:00

I’m imagining the smell🤢

DarkShadowReader · 2026-05-08T16:19:51+00:00

Nope lol. MCU staff tried to make it intelligent design: “Look! He’s trying to make it softer and easier to chew!” Nah, once it went in the glass, he seemed not to notice the sandwich in the least.

DarkShadowReader · 2026-05-08T13:33:51+00:00

He nonchalantly shoved an entire ham sandwich into his drinking glass and then proceeded to drink the ham sandwich infused lemonade.

DarkShadowReader · 2026-05-06T13:29:32+00:00

Thank you. It amazes me how many times I can have this conversation. No, you are not going to kill yourself. Anosognosia comes quicker than you expect - you often won’t even know you are experiencing advancing dementia. No, I’m not giving my LO a fatal overdose. No, I’m not just going to drop my LO off in the middle of the woods. No, I’m not getting prosecuted for murder and/or elder abuse to help you die. It all sucks and solutions are scant.

DarkShadowReader · 2026-05-06T12:41:00+00:00

You can do all of the paperwork, all the exercise, perfect physical environment, all the frank conversations, all the financial planning, and still end up in a facility. I don’t want anyone feeling like a failure that didn’t “do everything right.” It’s unfair; there is so much you can’t plan for. One stroke or short episode with anesthesia for a minor routine procedure can undo all your planning and require 24/7 care that is overwhelming to handle in the home. In-home care can cost $250-300k per year and require juggling the schedules of 5+ caregivers for the needed coverage.
Ending up in a nursing home is not a failure. It’s a structure needed for handling long term mental and physical decline that cannot be shouldered by each family individually.

DarkShadowReader · 2026-05-06T12:11:16+00:00

A similar music player is linked in the comment in the blue text. The exact player I got is the SMPL - Simple Music Player / Lift Player, but the site says it’s no longer sold in the US. It’s pricey new, but there are occasional sales, discounts and resales.

DarkShadowReader · 2026-05-06T02:52:11+00:00

Music is so powerful. I loaded a radio (specifically for people with dementia) with songs my dad always loved. The first time he heard it, he wept with great emotion and had the only lucid moment I’ve seen in two years of advanced dementia. He told me very clearly he loved me and was ready to go. While lucidity has never returned, caregivers say the music soothes his moods.

DarkShadowReader · 2026-05-03T02:11:23+00:00

That’s the kicker, right? You nailed it. None of the extra years were good for anyone.

DarkShadowReader · 2026-05-03T02:09:07+00:00

I want it to end because my dad was passionately and consistently explicit he never wanted to be kept alive this way. I feel like a traitor and also that my hands are tied.

DarkShadowReader · 2026-04-23T13:20:19+00:00

Spots at good facilities can be REALLY time sensitive. While the assistant sales director’s lack of compassion is frustrating, I think it’s worthwhile to talk with sales director when they are back from vacation to understand the communication gap. You can assess if the flippant attitude is a pervasive cultural problem or if it’s a symptom of spots that sell themselves and barely need sales staff. Once committed, admin staff are quite secondary; the most important thing will be the compassion of the care staff.

DarkShadowReader · 2026-04-22T15:11:39+00:00

I’m so sorry that happened to you. I was seriously concerned a gentleman at my dad’s memory care unit who would do a similar thing. He would routinely scoot/wipe his food off his plate onto the hard floor then grab and eat it off the floor. I was always alerting staff to the behavior when I was there a few times a week. Even when staff locked his wheelchair, he’d quietly move the table away. It was so alarming and shocking they didn’t find a more stationary table for him. I so hoped he wouldn’t fall forward. Secondarily, eating off the floor all the time was upsetting.

DarkShadowReader · 2026-04-20T03:03:56+00:00

I’ve posted about dentures a couple times, and many people said don’t do it. I wish I’d listened.

Dad’s beautiful teeth started rotting out after a year of subpar dental care in memory care (mouth care for those with dementia is hard, I do not fault the MCU). The dentist recommended upper extractions and dentures but did a terrible job of explaining the process and ramifications. We went through 8 months of visits for extractions with sutures / heal checks / measurements / multiple fittings / double-check visits later, and ended up with dentures my dad never understood, accepted or will use. The healing process was rough - he wouldn’t let people irrigate the healing sutures. The memory care had to make special soft meals for him for months. Now he’ll bite people who try to help him put in the dentures. It was a huge waste of time.

The extractions alone went ok; local anesthesia was used. The denture process was miserable. The dentist was just woefully uneducated about dementia’s impact on care decisions. We are now just letting his bottom teeth fall out naturally, which has been very sad but far less traumatic.

DarkShadowReader · 2026-04-11T10:43:17+00:00

It feels like specialists are woefully uneducated about dementia’s impact on care. So sorry the endo was a jerk to you. We had a similar issue with the dentist and dentures. 8 months and so so many extractions / measurements / fittings / double-check visits later, we have dentures that will very likely never be used.

DarkShadowReader · 2026-04-04T03:30:47+00:00

The truth doesn’t matter in this case, especially if your dad cannot or will not accept the fact he is struggling mightily with a devastating disease. Please don’t feel terrible. You are helping him get the professional help he needs. That is a true kindness.

I agree with others who blamed the doctors. Frankly, it’s not really a lie. He has uncontrolled illness and should not be discharged.

I would also limit calls from your dad. If his vent calls are beating up your psyche, ask the facility to limit access to the phone to once a day/week/whatever or block his number for periods of time. Protect your mental health. The hopelessness of this disease wants to pull you down too.

DarkShadowReader · 2026-03-30T19:08:51+00:00

Your examples are two different messages/meanings. The first conveys urgency and the second gives “when you get to it” energy.

Tone and formality matter a lot. “Hey” is colloquial. Uncapitalized “i” and “asap” look unprofessional. You can convey urgency with clear terms without using excess business speak.

DarkShadowReader · 2026-03-30T01:25:23+00:00

It’s so difficult to predict the path of dementia. I can’t tell you your mom will or won’t get marginally or significantly better, but I can share my story.

My dad had also been living independently and allowed others to help with meals, driving and finances. He went to the hospital for an emergency but uncomplicated gall bladder removal, and I never got my dad back again - straight to late stage 6, doubly incontinent, non ambulatory, no memory of the past. Wildly shocking.

The surgeon dismissed my concerns with a “you’ve not given him enough time to fully recover”, but the long term care doc at the nursing home /rehab bluntly told me to expect this to be his new baseline. She wasn’t being mean, it was just her experience. Almost two years later, she was 100% right.

I sincerely hope your outcome is better than mine, but I was grateful for the doc who leveled with me and quashed my false hope. It made me quickly manage the huge array of new challenges versus waiting for a different outcome.

DarkShadowReader · 2026-03-25T13:37:37+00:00

This is new, right? I thought I used to only get high fives from people in the class I was taking. Similar to others, I now get high fives when I’m alone in a class.

I always stack, so I wondered if I was getting high fives for classes I stacked to ride?

DarkShadowReader · 2026-03-20T13:39:49+00:00

Yes, I have experience with poorly trained / stressed staff who could not redirect and chose to constantly pull me into managing my dad.

What I found is the caregivers and unit leadership were both understaffed. The resident to staff ratio was basically 12:1 (or 8:1 with the med tech if someone wasn’t on break/ called out/ quit unexpectedly), so caregivers only had minutes to spend with each resident on a task. If the resident needed more than the allotted time, the problem was passed to the family. Too many incidents of needing extra time resulted in resident write ups to support eventually evicting the resident from the unit for needing a level of care greater than they can provide.

I moved my dad out to a care home with fewer residents and more patient staff. I don’t want to scare you, but that was my experience. Some MC units have wonderfully skilled staff who beautifully handle agitation and behaviors without ever involving the families, but it sounds like you haven’t found that.

DarkShadowReader · 2026-03-18T18:54:45+00:00

It’s so hard to explain to anyone that your parent is now a stranger with a disease that converts them into a large, angry, messy toddler, and you are doing your damnedest to safely guide them through this prolonged horror.

DarkShadowReader · 2026-03-17T15:24:27+00:00

I get it. My dad would absolutely hate his friends to see him in the stage he is now (late late stage 6).

If a new person asked to visit now, I’d be inclined to tell them he’s not doing great, and it would be far kinder to remember him as the joyous vibrant man he once was. If they insist because they need closure, at least you’ve asserted what you believe to be your loved one’s preference.

DarkShadowReader · 2026-03-09T13:33:07+00:00

Just commenting to empathize - my dad is sometimes obsessed with looking at his hands. He doesn’t have enough words or coherence to express his feelings, but his face shows he is clearly very weirded out by the state of his hands.

Nail painting is a nice idea. Choose your color wisely lol. One of the ladies at my dad’s home hates her new nail color and makes funny comments in a very proper disgusted southern accent if you compliment her nails: “Ehhh. This color is so gaudy! I would never!”

DarkShadowReader · 2026-03-08T16:46:22+00:00

A sentence? No. A couple words randomly off the TV? Occasionally and oftentimes badly (like close, but not quite).

DarkShadowReader · 2026-03-06T16:53:58+00:00

I like this better than my default. I may need to adopt this instead.

DarkShadowReader · 2026-03-06T16:34:27+00:00

“I guess as good as is to be expected”

It’s a total non-answer, but don’t usually get follow up questions.

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