u/Ok_Ad5948

Sorry to double post again so soon but I have a question. I think my grandmas declining. She is still able to get around (her backs hurting her more) but she can still make it up & down stairs, isn’t incontinent yet & physically seems well. Mentally, she says things that do not make sense, doesn’t remember her children (or if she has any for that matter) & forgets what you talk about within minutes. The last few days or so she’s been seeing people. She asked yesterday who the man in the corner was, I told her I didn’t see anyone but she insisted. Today, she thought someone was in her bedroom and said she saw 2 children in the dining room. Did your loved ones hallucinate? She’s never done this.

No more eating out for us 🫣 Took grandma to Olive Garden yesterday. She LOVES eating out. Especially for breakfast. She asks all the time to go out & “order some food” so we went to lunch Saturday and it was… a nightmare to say the least.

She ordered coffee and the cup was served on a small plate, I knew that was gonna be too much for her brain. They brought a coffee caraff and I poured her coffee for her. First, I gave her a breadstick. She attempted to dip the breadstick in her cup of coffee twice and I was able to grab her wrist before she dipped, like you would a toddler. On the third time I wasn’t quick enough. She dipped the bread in her coffee AND bit before I could react. She said it was delicious. Next, she picked up the whole caraff and attempted to drink from it. I told her she had to pour the coffee from that to her cup. She poured and completely missed the cup. Big pile of coffee on the table, then sticks her hand in it. Again, I grabbed her wrist like a toddler and cleaned her hand with a napkin. I was trying to pay and she stuck her hand in some soup that was on the table…. Man oh man!

When we got to the car, she couldn’t fasten her seatbelt. She was searching on the floorboard for it. At first I put her hand right on it to show her where it was. She’d say “oh I found it!” And then pull the belt out and attempt to find it on the floor again. Finally, I did it for her and then when we got home, she was unable to undo it. She is sleeping a lot lately, she can no longer do really anything on her own. I think she is declining. Thanks for letting me vent.

Sometimes you just have to laugh, right? My mom and I cracked up talking about it afterwards but in the moment I was not laughing. 🫣 what crazy things have your loved ones done?

This is so hard. Grandma got lost today. There’s really nothing she can do independently anymore. She needs someone next to her constantly. Today I took her to Walmart & I decided to try on a pair of pants. She’s deaf & uses ASL to communicate. We walked up to the dressing room & I signed to her “stay, im going to try on, wait here” I was in there maybe 4 minutes and when I came out she was gone. I asked the lady working if she saw the direction she headed & the lady had no clue. Searched everywhere and couldn’t find her. Her dementia brain is much different than her usual brain. She didn’t used to be super friendly or social but now she will stop and attempt to speak to people and wave constantly. I have to keep her directly beside me or she will engage with any and everyone.

Anyways! I was getting ready to give up and ask customer service to pull the cameras, but just then I caught a glimpse of her in the checkout line. I had put a hat in the cart & even though she had no purse or money, she went through the checkout line and attempted to purchase the hat. I’m assuming the cashier was waiting for payment and their was confusion and she realized grandma was deaf. When I approached, the cashier was attempting to get an interpreter. I approached and said “why didn’t you stay like I told you?” She said that she did stay! I wasn’t gonna argue with her standing there. Just said OK lets go. She could tell I was peeved bc she kept asking if I was ok. It was my fault. Normalcy is gone, can’t do things like that with her in tow and I should have known better. Every day is something different! (Edited to fix typos)

One of the hardest parts of loving someone with dementia is realizing they’re searching for something you can’t give them. My grandma constantly asks to “go home.” The heartbreaking part is that the home she’s looking for doesn’t really exist anymore. It isn’t a house or an address. It’s a feeling.

She’s yearning for familiarity. For comfort of knowing where she is, recognizing the faces around her, and remembering the routines that once made the world feel safe. She’s searching for a place where nothing is confusing and nothing has been lost.
I wish I could find that place for her. I wish I could take her there, open the door, and watch the fear disappear. But dementia steals that sense of home, even when you’re sitting in it.

So all I can do is hold her hand, reassure her, and hope she can still feel loved, even if she can’t always remember why. “I want to go home” isn’t about a place. It’s about wanting to feel safe in a world that no longer feels familiar and that breaks my heart. As I was tucking her into bed tonight she asked “will you please take me home tomorrow?” I told one of those loving lies, so that she could sleep comfortably. She’ll forget by morning. “Yes! I wil take you home tomorrow!” Her eyes welled up with tears. “Thank you, I’m so happy, but I will miss you!” She signed back to me (she is deaf and we communicate using ASL) I have seen more of those tears welling up in her eyes lately, she just is so lost.. 😞

My grandma spent 9 days in a nursing home in respite care while her caregivers (daughters) went on an alaskan cruise. The respite care was $410 a day. They needed a break desperately! I called every day to check on her, the first day they said she looked for us frantically while crying. That was like a knife in the gut, but all of the following days they said she was fine. When we went to pick her up today, she was standing by the dining room table scooping up crumbs with a bag of doritos in hand. She was wearing a PJ shirt and dressier pants which made me question how great they took care of her (I packed everything by outfit) also her hands and mouth were covered in Doritos. I am not complaining, I worked in long term care for 10 years, its hard! Just upset me a little bc she does not need much help but would’ve been nice if someone would’ve helped her get dressed. Just got her clothes unpacked at home and most items were still folded and in the order I put them in, I think she only wore a few things. Also, she didn’t bring a single pair of underwear back home. They weren’t in her room & I packed like 15 pair, they’re gonna be finding undies in strange places for awhile 🤣 she saw my mom and immediately said “my daughter!” And started crying. She is not an emotional woman. She hugged us each so tight and kept reiterating she was so happy to go home. She said she thought she would never see us again. I can already tell her behavior is gonna be off the wall bc of fhe confusion. Im nervous for the week ahead.

My mom & my aunt are leaving for an Alaskan cruise today. They deserve it!! They are neighbors and split care of their mom (my grandma) although they just started splitting time when school let out bc my aunt is a teacher, (even though my mom works as well.. shes a nurse) before that, my mom did all the work with occasional help on the weekend. She is exhausted. Anyways, thats a post for a different day 🤣

They will be gone for 9 days & at first I volunteered to keep gma while they go, although she has gotten increasingly more difficult within the last month. Extremely restless, will not just sit down and relax. Constantly watching everyone in the room like a hawk & follows my mom around constantly. It’s very hard for her. Anyways! My dad was diagnosed with stage 4 kidney cancer recently and he starts treatment on Tuesday. We talked and decided we needed to put grandma in respite care while they’re gone so my dad can rest and I can focus on him and not have to worry about her.

We dropped her off at the respite place yesterday, its very nice and just looks like a big home. The layout is perfect for her but from the moment we walked in she knew something was off. She is 100% deaf and we communicate through ASL. We told her she would be staying there for a short time and she laughed and said no i am going home (she doesn’t even know where “home” is) It felt like leaving your kid at daycare while they cried at the door. We just had to walk out. It was very sad. I called to check on how she was doing and the nurse said she is just wandering around saying she is going home.

I’m feeling very guilty, but my mom NEEDED this and I refuse to let her feel badly or not enjoy her vacation. Do you guys think I should go visit? I have been against it bc I don’t want her to see me and think she’s coming home with me, but I do want to comfort her. 🥹 I do think space is very much needed right now so we can continue taking the best possible care of her. I am afraid she is going to have all sorts of different behaviors when she returns. Anyone have experience with that? Thanks & sorry for the loooong post.

This is so hard. My grandma was born deaf. Her entire life she has used ASL (American Sign Language) to communicate. With dementia in hearing people, over time you see a loss of language in some cases, and it’s particularly awful and cruel to witness her lose her only ability of communication. She is getting to the point where she doesn’t understand sign anymore. I can tell she doesn’t even try to see what is being signed she just reads lips, which as I’m sure you can assume causes lots of miscommunication and in some cases, paranoia. She’ll think you’re saying something you absolutely aren’t, or will read my mom and I’s lips while we’re having a conversation and misunderstand and think we’re talking about her. She’s getting meaner. My mom says it’s bringing up a lot of unresolved feelings from her childhood where she feels her mom was pretty mean to her and just very unemotional and unkind. Today she looked at me and signed “I’m watching you” with the meanest eyes you ever saw. I snapped on her bc she had been following my mom around all day not giving her a second to herself and my mom was extremely overwhelmed and I hate seeing her like that. So I did something I really regret and I signed back “you’re crazy” which she HATES being called. Even before dementia. I knew it would hurt her. Now the guilt. 😭Ugh. Sorry, I guess this is just one giant rant. Feel free to rant in the comments & I’ll listen ❤️

Ok! We will title the game “where thebhell did my grandma (with advanced stages dementia) hide my bag of Cinnamon Toast Crunch 🤣 I cannot find it ANYWHERE. I’ve looked in all the obvious places. Even got desperate and looked in the dryer, deep freezer, garage! I seriously have no idea! Her behaviors are getting so bad. The other morning I chose an outfit for her and told her to get dressed and join me upstairs. She finally came up 30 mins later with a completely different outfit than the one we picked out, and her winter coat in hand. It was like 87 degrees 🤣 she then proceeds to pour her coffee in a bowl.. 🤨 anyways! Any ideas?? & what’re you favorite “ugh.. this doesn’t belong her..” stories? We gotta laugh right ❤️