My mother and i have been the primary carers for my grandmom for almost 3 years now. she is a wonderful woman- i read through this forum and my heart breaks for yall...i almost feel blessed but i do know it is pointless to compare one persons situation to another. my grandma is 77 years old and prior to 3 years ago, was active as all get out. one day she had trouble speaking, so we immediately assumed it was a stroke (we panicked, lol) and drove her to the hospital. luckily, no stroke! unluckily, she has a brain tumor! and 2 brain aneurisms!
This was in april of 2019. she underwent a craniotomy to remove the tumor, and they coiled one of the aneurisms. it has been a hell of a ride since then. at first, after a week or two in the hospital, she was able to come home mid april and things were a little "easier", just general care as if someone had a cold or something. basic doting. but her craniotomy incision had gotten infected, and refused to close correctly. forgive me for the graphic mental image, but we were able to see the metal plate holding a piece of her skull together, and with her pulse the skin around the incision throbbed visibly. in may we returned to the hospital and they loaded her up with heavy antibiotics.
the incision still refused to close and continued to be infected, so early july we took her back to the ER and long story short, she had to undergo ANOTHER craniotomy to clear up the infection. during that period she developed fluid in her lungs, and after a few days in recovery, she quickly declined to the point she was unresponsive. she had to have the tube, and they spoke to me and my mother about end of life preparation. also to add, my mother and i were at the hospital every day my grandmother was, from 7 am to 10 pm. several months of this.
by some miracle, my grandmom came out of her unresponsive state- albeit slowly, but she came out of it. turns out she was having 48-72 hours of continuous seizures. it took about a month of physical therapy (and everything that goes with that) to get her to where she is now, and in august 2019 she came home again. the level of care obviously was much higher, and thats how its been from august 2019 to present day.
I love her. i love her to bits- i was raised by both her and my mother for my entire life. but i mourn. i mourn for the person my grandmom "used to be", i mourn the loss of my early 20's as selfish as that sounds, and i mourn for my mother who balances so much on her shoulders she may as well be named atlas. it is a day to day, 24/7 caring job we both handle. my mother handles the things i cannot (incontinence, bathing) and i do everything else, which is meal feeding, medicine injections when needed. whenever she asks for something i will get it, which is no problem, especially since i work from home.
My grandmom recently had a fall- she is fine but she ended up with a massive goose egg on the back of her head. we of course, panicked and ran to the ER to make sure nothing was broken/burst etc. thank god nothing was, she's just stuck with a lousy headache for a little bit, but i am stuck with daily constant anxiety because i am worried about her. im worried she is going to fall, or hurt herself or anything else of that nature. she struggles with occasional hallucinations and memory loss but doesn't have dementia or alzheimer's. the hallucinations aren't of the threatening variety either, one example is she will see a white cat in her room sometimes (we do not have a white cat lol).
This is so long, i apologize. it does feel good to get it out. i just dont know what to do. i need some kind of relief from this, and im sure my mother does too, i just dont even know how to go about that. a nursing home probably isn't in the question because...idk. it feels terrible. i know it is necessary and 9/10 fabulous for both the elderly person and the home caretakers but i cant bring myself to approach the subject with my mom, much less my grandmom.
thanks yall.
FWIW my mom too saw animals, for her it was cats and rabbits. Like over in a corner, just there, not asking for food or to be petted either. She was dx with having Lewy Body Dementia & hallucinations (such as seeing small non threatening animals) is one of the hallmarks of the disease. Lewy tend to have visual distortions. The other hallmark is a “shuffle walk”…. They kinda loose the ability to do a full leg lift when they walk so instead more flat foot shuffle. Problem is that if there are any obstructions on flooring,…. Rugs, changes in floor height & surfaces…. imbalance in walking and they fall. If their visual distortion extends to flooring, that makes matters worse. My mom would sometimes see the flat uniform flooring in the hallways of her IL as if they were cobblestone. Lighting made a huge difference on the hallucinations…. I removed stuff by baseboards, had torch style lamps on timers going, took out the heavy dark deep mahogany cabinets for narrow light birch shelving. (Ikea lamps & shelves). Less areas for shadows to collect and create a hallucination. It did make a difference for the better for a while. Ime early to mid stage Lewy is different than Alz, they seem to be more social, competent for ADLs and cognitive and much much longer. But latter stages, it’s all the same sad dementia spiral down.
if she does have Lewy, please be aware that some medications are totally contraindicated for Lewy. Especially some psych or behavior drugs. Read up on Lewy and if gran seems to be tracking this way then get her evaluated for it. Good luck in all this; , you’re a terrific granddaughter and advocate for her.