Never Dealt With Alzheimer's Before and Need Some Guidance

KatieWheeler

Hello.

I have never been close to someone who had Alzheimer's before (I'm 54) and I need some guidance, please.

My father (Jamie) passed away in 1988 at age 50 from brain cancer. His best friend, Charlie, has been close to me ever since. He gave me away at our wedding. He's now 87 and has been in good health his entire life.

In this past fall, Charlie got rapid onset Alzheimer's. It happened in less than a month. We tried to tag team to keep him out of a nursing home, but he started doing things like turning the pellet stove to high and not turning on the fan in the middle of the night. Thankfully, his daughter woke up so a fire was averted. Charlie did not remember turning the stove on. Unfortunately, he had to be admitted to a nursing home this past February.

I went to see him on the Saturday of Easter weekend. He actually recognized me which was incredible because I was told he was confused when it came to identifying who people were.

However, he talked mostly nonsense. He thought he had been out working for the Department of Health and was waiting to get his truck back. He was also waiting for someone to bring him some shoes so he could go outside and walk around (he's in a locked wing and had slippers on). Then, he would talk like it was 25 years ago and he thought Skyler, our son, was a little kid (he's 30).

Would one of you kind people help me deal with what to expect in the future?

There is also one other thing that is bothering me. Charlie only had two paperback books in his room. No photos or a clock on the wall. No decorative items at all. When I passed a couple of other rooms when I left, they were the same. Is this because anything can be turned into a weapon? Your help with this would be appreciated as well.

I feel like I am losing my Dad all over again but it is happening very very slowly and feels like a gut punch every time I think about this disease that is so new to me. This post is really only a place to get me started - there is so much I want to know and I think guidance would come from people with the disease and those who are living with people who have Alzheimer's.

Pauline Milner

concerned_sister

Hi Pauline, I'm sorry this is happening to someone dear to you. I've gained a lot of insights from YouTube videos by Teepa Snow. You might try doing a search for her. I can't tell you from first hand experience about the no decorations, but I can share what I've read here - and learned from Teepa. (1) sometimes folks go "shopping" in the rooms of other residents and take things with them. Some facilities have collections of these items that seem to have lost their homes. (2) More frequently folks here on this site report such things as clocks with features such as month and day to make it easier on a loved one, often get unplugged and placed in a drawer. Photos that are put on walls, are taken down by the resident. This cycle can happen over and over. Perhaps it's personal preference. I think I've even read that it's because the person wants to "go home". Home can be a place they grew up in, or represents the idea of going back to a place where they felt safe. You've joined a helpful group and I'm sure others will come along and provide insights.

harshedbuzz

Pauline—

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

There are many aspects to dementia that take some getting used to when you are new to the experience.

To your first question, many PWD kind of time travel into the past. Memories seem to be LIFO, so it makes sense that sometimes past decades make more sense for them. At your next visit, he'll likely be changed. Perhaps in another decade, maybe he'll confuse you for your mom or maybe he'll progress to being less verbal.

My dad spent a lot of time back in the mid-70s. It was a happy time in my parents' marriage, he had a job he loved and people like his parents were alive and well. Except for the requests to find his weird outfits from the era it was a "happy place".

I can't speak to the specifics of the decor, but I can make some generalities.

The weaponization of household objects is a thing, but probably not in play here. It usually applies to things like chef's knives, golf clubs, heavy lamps and small tables.

Sometimes families elect not to overly personalize a room as part of the reasoning for the PWD to be in a facility. We needed to place dad because his care was killing my mother and because he believed he was and wanted them to die together. I didn't have it in me to tell him he was being re-homed, so we made up and gentler story about him needed rehab to get stronger. Over time we did bring some things in, but when he died it all fit in a couple packing boxes.

Another reason the room could be bare is that he's been "packing" to go home. Many PWD are focused on "going home"— I've known people to want to "go home" while standing in the middle of the living room where they've lived 50 years. Home is thought to be more of a feeling of ease and security.

Sometimes other residents swipe things in an activity known as "shopping". Staff will try to return items to the rightful owners when found, but it's an ongoing battle. This is why everything coming in must be labeled. There was a man in dad's hall who routinely took dad's slippers and a portrait of my mom as a young woman for some reason.

At many quality MCFs the model is one of a home where the residents suite is their "bedroom" within the house and meant for sleeping and resting. Residents are strongly encouraged to join in activities and interact with each other in the dining room and lounge rather than holing up in their room. To that end, many facilities suggest not putting TVs and such in the rooms. Another reason we decided against a TV in dad's room was that he had trouble distinguishing TV from reality and believed he was the victim of all crime dramas and that all hurricanes were just outside. It was better to be able to curate his viewing.

If he's in a secure unit, there's probably a walled and monitored outdoor space for residents to use in good weather. He probably has shoes but can't put them on himself hence the slippers. The story about shoes is likely a conflated story about why he's not going out.

The books are interesting. My dad could read as in decode written English. But since he had no short-term memory, books didn't make sense to him. He'd been an avid reader and still "read" but got nothing out of it.

FWIW, most PWD can't read an analog clock— this is so characteristic of dementia that drawing a clock set to a specific time is part of the screening for the condition. Some folks her have bought so called dementia clocks that give digital time and date to help orient their LO but most report it being a failure at this task.

HB