Milestones…

murpc76

It’s been a while since I’ve had the chance to pop in here. In the grand scheme of things, I feel pretty fortunate with how my DH is faring well since his neurologist used the word “Alzheimer’s” as a diagnosis in August, 2023. However, I can’t help but look ahead and prepare for future progression and how much things will change. The last few weeks, there has been some changes and I’m curious as to what some of you experienced as your loved one progressed.

So far the changes I’ve experienced/observed: A lot more tired from the moment we wake up, gets tired more easily, loss of appetite (he’ll eat if I put something in front of him), having more difficulty getting words out but can still have a conversation, and today, I opened the cabinet to refill toilet paper rolls, to my surprise I found 3 almost finished rolls in the cabinet. What we would typically do was replace the almost finished roll and put what was left on the counter to finish it up. It was truly surprising to see the 3 rolls lined up with almost the same amount left on them. What were some of the things you’ve experienced/witnessed?

FTDCaregiver1

Ah the curious case of the missing rolls. Early on, DW would line up items on the bed as if organizing, take things like the tv remote and stash them in weird places like a dresser drawer, seems I was, and still do, play a hide and seek game. She'd just gravitate to an item, almost unconsciously pick it up, carry it around, and tuck it away, no rhyme or reason. Yup, found bits of uneaten food around the place, watch out for roaches.

SSHarkey

So far the strangest has been a triangular piece of scrap wood he was using to test stains. I found it in the refrigerator the next morning. He saw it on the table and thought it was leftover pizza.

Lkrielow99

We have a lot of strange behaviors going on. My DH was diagnosed July 2023, but was well into this disease. He sorts things, like mail and bed pillows, etc. I will ask him to empty the dishwasher, knowing full well the clean dishes will be place all over the house. But it keeps him off the sofa and off the IPhone. One time he placed his soiled underwear in the refrigerator. I’m expecting this to become even weirder. Most of the time I have no clue what he is saying . But I’m blessed today as he is loving and kind. I understand this is going to be a rough rollercoaster to ride. I heard it could or will turn aggressive and hurtful. Take care of yourself and understand it’s the disease driving us crazy and not our LO.

WIGO23

Things have disappeared in our house. I have no idea where the dryer balls went; the new roll of dog waste bags; DH’s wedding ring. I have given up looking. Obviously, I hope his wedding ring turns up.

clarinetist

My DH lost his wedding ring 4 months ago, and I figured I’d never find it. Three weeks ago he entered memory care and the first time they were doing his laundry it popped out of his pajama bottoms. It had been hiding in the pocket.

Now I’m wearing it as my knuckles have swollen from arthritis and it now fits me. Also didn’t want it to go missing again.

murpc76

Thank you all for sharing some of your experiences. As heartbreaking and frustrating as it can be, I also find it fascinating how the brain works and leads to our LO’s actions.

Ed1937

Before my wife's diagnosis, several times she would be talking on the phone to one of our kids. When she finished, I would ask her "What did (name) have to say?". She would reply "Oh, I don't know". I always took that as meaning nothing but small talk, but later on in the disease I wondered if she actually forgot so quickly what they said.

She loved to pay solitaire on the desktop, but abruptly stopped. She never got back on the computer again. Anything that had to do with numbers became foreign to her.

Then it was the TV remote. We always needed a new TV because this one wasn't working anymore.

Eighteen months after diagnosis, she could no longer cook. And that was a big part of her life. She never cooked again. And things continued to get worse until stage 8.

OhDear

My DH moves all sorts of things, often overnight. I use Tiles (like Airtags) on important things needed to get out the door - cane, wallet, coat, keys. I buy multiples of things and keep extras in a safe place so I can replace lost items - TV remote, glasses, combs, gloves (which he wears ALL the time even when eating!). The wedding ring has been replaced and found once already - so the spare is locked away. I need to "tag" him somehow - Any thoughts?

Experiencing the changes are so frustrating and frightening. He was a professional drummer and no longer touches them. DH has lost names for things (but can use 5-syllable words and even spell them!), sleeps more, walks less, more confused. He no longer remembers that we just ate. Unfortunately, he gets angry and is cursing more and more. Of course, I get blamed most of the time but sometimes, he blames it on the "other" wife. 🤣 Finally got him to a neurologist in March who diagnosed severe Alzheimer's - in the "spare" time, I'm trying to prepare for what's next (??) - two years ago it was MCI.

concerned_sister

Tile comes in credit card size (for wallet or pocket). Another poster recommended using tile with the life360 app. I love it. If you do this, the bells and whistles are not necessary. You can establish a family circle on a free account.

gampiano

Hello,

One of the most difficult things for me was when my husband lost the ability to walk without losing his balance. This seemed to happen "over night" during a UTI, and he became almost completely immobile after that, but not enough to prevent him from randomly getting up and falling. I couldn't manage him physically, and it was scary.

Do you have outside help? If not, you're going to need it. Hospice was also amazingly helpful. He died at home,and it was a fall that finally rendered him bed ridden. Sad to say that even though it was difficult, it was easier for me to manage his care once he couldn't get out of bed. What a cruel disease this is.

Sending strength your way,

Maureen