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I am in a skilled nursing facility watching myself cognitively decline after a difficult uterine cancer surgery. At first I thought it was a stroke, but the NP said I didn't have any symptoms, and said I was expressing myself "OK". However, every communication is being done with a lot of pauses, use of alternate words, and changing of subject, when the wanted words just will not come. I feel as if my head is in a large bubble and the words are floating away. I am sleeping almost continuously, except when involved in PT or eating. I can hardly stay awake, although the PT says I should be walking as much as possible. I wonder if it's depression. I have been here just one week and I am not the same person I was when I got here. I have no idea what I should do or who I should talk to. My niece, living in Montana has also noticed the difference when we talk on the phone. Otherwise, I don't have any other family.

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When my FIL moved to the nursing home - I was talking to one of his nurses about the fact that we had begun to believe he had dementia prior to moving him. And that we had noticed an increase in the symptoms since he moved.

She dropped a term that I had never heard before - but it made a ton of sense to me. "Institutional Dementia". I had always known that people who were extremely isolated at home, especially the elderly, could begin to display dementia-like symptoms if they went without contact and stimulation for long periods of time. For some reason my brain had completely overlooked the fact that it happens in care facilities because of the interactions with staff and other residents.

BUT, after seeing just how much my FIL has chosen to limit his contact with other people by choice, and of course the staff only has so much time - I can 100% see just how easily that type of isolation and lack of stimulation could occur in a setting where you are surrounded by tons of people as well.

Now, my FIL DOES have dementia as well. And he has been diagnosed with depression - MUCH of which has to do with his choice to self isolate. We have STRONGLY encouraged him to spend as much time as possible out of his room, to find activities to engage in, etc. Anything to keep him out of his bed and out of his room. He refuses. And as such, his isolation, his depression, his institutional dementia and his actual dementia are all increasing exponentially as a result.

If medical reasons have been ruled out, I encourage you to spend as much time as you can interacting with other people, engaged in activities that you enjoy, get outside if the weather allows it, take meals outside of your room, do whatever you can to combat isolation. Because the isolation will only make it worse.
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That's rough. It sounds like chemo brain. It's like a brain fog. It sounds like a combination of things going on; the surgery, cancer treatment, anesthesia. Just take it a day at a time. Cancer treatment is rough. Some people do end up in nursing rehabs to adjust slowly back into living. Depression and anxiety is normal. This will pass. Follow your PT's advice. Try to walk as much as you can. If you get tired, rest. Keep conversations short for now. Eventually, your verbiage should return after the fog wears off and your health improves.

Stay in contact with close friends and family. If you have a religious affiliation, contact them. Sometimes a church member will come to visit or at least give you a phone call.

The American Cancer Society has support groups and people that will take the time to talk to you as well.

Also, you have our support here at AgingCare.

Wishing you a speedy recovery. It does get better.
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It could be the anesthesia. Could be being in a strange place with nothing of your own around you. Are you on any chemo meds? These I understand can leave you in a "fog".

Its been 2 weeks since ur post, hope everything has gotten better. Maybe u have been discharged.
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I hope you're doing better, Wend.

There are caring, kind and concerned members here.♥️👍🏾🙂
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While this is frightening and it seems like the doctors are not taking it seriously you need to be more of an advocate for yourself.
It is possible that there are some after effects of anesthesia
It is possible that there is some depression. Have you requested a visit from a therapist? Either a psychologist or a psychiatrist?
I have to ask are you doing everything you are able to do?
Or do you finish PT and go lay down?
How about a walk around the place.
How about getting a book and going to read in another room...not the room you sleep in.
Are there activities?
If you feel like you are not getting adequate PT, or even attention from the staff and the doctors have you looked into transferring to another rehab?
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anonymous1732518 Oct 2023
Second on getting out of the room you sleep in. Better yet go outside of the facility if you can.
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Wend, how are you feeling this week?
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I would ask for neuro consult. My mom always, after 75, had cognitive issues from surgery or hospitalization. Also Lewy Body causes great swings in cognition. Hour to hour, day to day. Look that up. Took 4 years but mom was finally diagnosed with it and it explained all the issues she was having. I wish you the best..
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Keep speaking about this with the doctors. Ask for a neuro consult. Your writing here is PERFECTION so clearly you can think and you can communicate. For some who have had a small stroke it can manifest just as you say, and writing can be done with ease while speaking causes a flood of word confusion for a while. These cannot always be identified on scan, but scan I believe you should have.

To me what this actually sounds like is classic anxiety attacks. Your head is flooded with new thoughts and you CLEARLY need help whatEVER is going on. Ask to see the social work at once. Show them what you have written here so they can see how clear this is, and how muddled it comes out when you go for verbal communication. Meanwhile, deep breath as much as you can. Take your time. Know that all you are dealing with right now is totally CRAZY MAKING. Many of us here have done the cancer journey (I did with breast cancer 35 plus years ago, two positive nodes; Midkid, Lealonnie1 has. Many of us. And the VERY FIRST THING I tell anyone entering this path is that it is crazy-making. Don't expect normal. There's nothing normal in this world where your life as you know it just had a grenade lobbed into it.

My best out to you and PLEASE update us because so many of us will be thinking about you.
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My mother had a hemorrhagic stroke of the left hemisphere, but I could tell as soon as she was fully awake the next day that her RECEPTIVE LANGUAGE was INTACT.

She was 85 at the time, and after 2 days in the hospital demanded that be allowed to go home, and her neurologist permitted it.

She lived 5 fulfilling years more in her little cottage BY HERSELF with some help from nearby relatives and me, finally broke her hip just before her 90th birthday, and lost her ability to live alone, I think because of the anesthesia.

If you are able to do so, strongly request a speech/language evaluation by a therapist with experience in geriatric clients.

If the speech eval. reveals LANGUAGE ISSUES, then ask for a cognitive evaluation as intense as you can tolerate (sometimes they can take a few hours).

When Mom returned home SHE rehabbed her speech skills BY HERSELF, to the extent that she could, and would WRITE in notes what she couldn’t say. Your short, explicit, intact note here suggests that you may in fact have useable language skills, and that is VERY IMPORTANT.

DON’T give up on yourself! You have a whole bunch of cheerleaders right here who are in your corner!

PLEASE KEEP IN TOUCH.
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This may sound ridiculous but have you spoken to your doctor and the rest of the staff about this? That would be my number one suggestion. If your niece is your go to for your medical needs in case of an emergency and they need someone else’s permission then I’d say get her involved. She may be able to communicate more clearly what it is you’re experiencing especially with the speak difficulties you’re experiencing. My other thought is do you have an infection of any kind that you know of? My husband is currently in a SNF getting treatment on an infection in his bone and at the first “skilled” home they didn’t believe him or have him seen soon enough so it spread and cause incredibly bad dementia. He’s coming around a little bit now but at the beginning he couldn’t even tell you his name or birthday. (I’ll be suing that place just FYI) He’s in a much better place now but it will just take time to get it cleared up. They have said that pain can cause this kind of confusion and difficulty. It’s a terrible thing to experience and I’m so sorry to you. I will pray for a quick recovery and for everything to turn out well. I’m sure it’s nothing as traumatic as what my husband has gone thru but I do know how scary it is for the person experiencing this. Take it easy on yourself while healing and maybe ask staff if they could recommend any kind of therapy to practice and help getting your level of cognizance back. sometime if you repeat what people are saying to
you back to them it can help them know you understand and it helps your brain make the connection. Something like that they might know of to do, practice, memory games. Idk but I’m sure they’ve seen this before. Talk to everyone until you get heard. Best of luck
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anonymous1732518 Oct 2023
So sorry Katie about your husband. The NH probably was "concerned" to see the doctor or even send him out to the hospital because it might reflect badly on them. If you sue them I hope you're successful.
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Anyway possible you could move closer to your niece?
my friend moved her great aunt from back East to her state in the west so she can keep a watchful eye on her, and spend good quality time as well..
it does help to keep your Loved ones close.
get rest. Do participant in outings, games, and social events. Even if you just go for 5 minutes. Build up your time from there. It’s ok. Just saying hello to another resident or caretaker will give you a bit more energy.

If your facility has social hours, games, daily news, puzzles, ; you don’t need to join the activity at first, just observe and get acclimated to the activities and everyone. It can be overwhelming.
Take care.
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My heart goes out to you, and I can only imagine the dread of this looming diagnosis of Alzheimer’s disease hanging over your head. You mentioned that the nurse practitioner told you that you were not experiencing a stroke. With your familial medical history of Alzheimer’s disease, it’s time for you to see a MD in order to monitor your condition. I know for a fact that a NP must work under the auspices of a MD, but with your familial medical history, you need to be monitored directly by a MD. Perhaps it might be depression as you believe or perhaps it might be some other medical condition. Discuss all of your symptoms with your doctor and he/she will be able to provide the proper treatment for your ailment.

Hoping for the best for you.
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Oh you are probably very scared and anxious. There are many possibilities for this including anesthesia reaction. Try your best to exercise because it increases blood flow to the brain. If it is depression try upbeat music from your youth. Also ask to see a neurologist for an accurate evaluation.
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If it hasn't been long since your surgery, it could be the anesthesia causing some, or all, of your issues. Anesthesia can cause post-operative delirium (POD) in older people. This happened to my mother. She has gotten much, much better over the month and a half since her surgery though. My mom has also been taking Lexapro (which can help with depression, anxiety, paranoid thinking, etc.) for about 1 month.

I hope you feel better soon!
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anonymous1732518 Oct 2023
@Bounce

It can affect younger people as well
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"...when the wanted words just will not come." sounds like the TIA I experienced following a heart catheterization, although I only experienced this for about 5 minutes - diagnosis was a TIA with no noteable impacts, presumably because it cleared so quickly. Because you can communicate, even if not to your usual standard, you probably do not have much lasting damage IF you suffered a TIA. Depression is likely. When we're older we often don't handle hospitalizations as well as we did when younger; it may take us longer to recover from anesthesia and surgery too.

I recommend not worrying about it unless the condition persists after you're home or have recovered from your surgery.

If the home offers some programs you would like to participate in (card games or singing), I recommend attending as your energy allows. Getting out of your room, even if just to enjoy the view out a different window, can help your mood.
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I'm so sorry you are there. It sounds like depression. Hopefully you'll improve and your experience there will get better. I sure hope you're not there long.🙏🏾
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