Hello all, I care for my grandpa. He is 81 and I'm all he has left. We lost my grandma 3 years ago (his wife), and both his sons (my dad and uncle) passed when I was still very young. I'm 28 now.
My grandma did literally everything for him, as he cannot read or write. When we lost her, I took over. I pay his bills out of his SS check each month, manage his bank account, and manage his doctor's appointments and his medications. He takes 23 pills a day and has a pacemaker, so he has quite a bit going on, but still lives at home. We live 5 minutes away from each other, and I'm over at least 3 times a week.
Well... I'm worried he may have some dementia starting. He told me something very disturbing tonight. Apparently he has been seeing "shadow people" in his room at night. There is a girl in a nightgown, a man with a goatee, and also a donkey. This is only happening in his room at night. He says he's also seeing my grandma, and she looks deformed, scratches at the bedroom door and sniffs and barks like a dog (his words). He only JUST told me, and he says it's been happening for 6 months. He was also talking about my grandma as if she is still alive, saying things like "she slept with me all night at my feet last night" and "I'll have to tell her about this later". I am so shocked and scared. Is this how dementia typically starts? Obviously I'll be calling his doctor in the morning, but... I guess I'd just like to hear from some folks who have some experience with this.
Thanks for reading.
Could be UTI as mentioned, but if over 6 months, may be other causes eg New medications? Brain changes?
Does he know these visions are not real? Do they upset him?
Even if he knows they are not real, if they are upsetting it is a big concern. I would be especially worried about him fleeing his home in the night in fear.
It may be too hard for him to phone you when distressed at night..? Does he have a falls/emergency alarm to press?
You may have been caring for your Grandpa for a while now but do you have legal authority to do so? He needs to assign you as his PoA before his cognitive condition declines further. Please update us as to whether you are his PoA or not, because if not there are important things we can tell you here.
Also, if he has any memory issues he may not be taking his 23 pills correctly. Even if you administer them to him, if you are leaving the bottles there where he can access them, he may be taking more when you're not there. I would not assume he's taking them correctly if he's been doing it all along.
When you take him to his doctor be sure to ask for the HIPAA form for Medical Representative. Write in your name as his MR and have him sign it. This allows his medical team at that clinic to legally be able to discuss your Grandpa's private medical information with you without him present or with his expressed permission. This is not the same as a MPoA. This form needs to be filled out at every doctor he sees, it's not a blanket form even within a network of clinics.
Does your Grandpa still drive? How old is he? Does he speak English?
https://www.agingcare.com/topics/169/urinary-tract-infection-uti
If you say "Granddad, have you been seeing these folks for a while" and he answers that he has, then I am worried you could be looking at Lewy's dementia. What you are telling us MIRRORS almost exactly my own brother's symptoms:
He would tell me that he was having dreams but they were NOT dreams because he KNEW he was fully awake. He could describe entire pool parties down to what people were wearing outside his window, what they were drinking, in fine detail. He had no pool. He would describe an immigrant woman in long flowing brown dress of homespun wool who was huddled in the corner of his room attempting to shield her baby in her arms. Other visions as well. He had some deficits in taste and smell and his balance became more poor. He began to send letters to me with wrong city. They were returned. Any patterns such as hotel rug, marbled wall, wallpapers, could send him into a sort of blank vision state. He sometimes had difficulty with swallow. Other than all THAT he was his normal self, off in the truck to do his taxes, etc. Until his ACCIDENT. That's when he was diagnosed with probable Lewy's dementia by symptoms. His own descriptions told the story. He was a master at telling me about this.
If he has Lewy's they won't likely see early stage (now) by MRI or any other way. But his descriptions of his hallucinations may be enough in a neuro exam. ASK THE DOCTOR ABOUT LEWYS.
He will still be able to appoint you his POA in an attorney office if he will, and if you want it; you need to do meticulous record keeping if you choose to accept this as you will have to be able to account for every penny in and every penny out of his accounts.
My brother CHOSE to go into assisted living. He knew what he has and where it would take him. He died, and was happy about that fact, in Hospice care 1 1/2 years later of sepsis that started from a small sore on his shin.
I hope I am wrong, but the story you told has flashbulbs going off everywhere for me. It sounds like my bro.
WhatEVER is going on here now must be checked out. Start with a trip to his doctor for that urinalysis. I hope for an easy explanation.
Come back and let us know updates. I wish you so much good luck here.