Realization about the slide into dementia.

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This isn't a question as much as a recent insight that I've had with my Mom. Background: Most of the time she is perfectly rational, but she got it into her head that the tinnitus she now has is a motor somewhere above their bed that the facility they live in (they are still in independent living) refuses to fix. Over a year ago, she started really raising a ruckus about it, and she will leave hysterical messages on their phones in the middle of the night and make all kinds of accusations and threaten to report them to the State. My brother and I have been trying to work with her for over a year and nothing has helped. We think her phone calls have decreased in frequency, but the facility manager promises to log the calls but then does not follow through. The manager has a tendency to live in the moment, and so when Mom does this, to the manager it's an immediate crisis and part of a ongoing trend. We have no way to evaluate that because the manager won't make sure the calls are documented. Recently, the manager threatened, again, to send them to assisted living. However, they were evaluated by their doctor and passed with flying colors on the "life skills" (i.e., can they take care of themselves), so the manager doesn't really have grounds to send them there. For a variety of reasons, my brother and I think this would hasten her decline. My brother has no direct experience with dementia. He was too young when our grandfather developed Alzheimer's, and no other elderly relatives have experienced it. He wants to keep trying to convince Mom to stop making the phone calls, to convince her that it's not external, etc. (He's a "fixer".) For a year, we were both focused on her rational self, thinking that was her "normal" state. She'll agree with everything (almost) when she's rational, will agree not to call the the facility, etc. But then it all goes out the window. The insight: We both were expecting a gradual decline in her mental faculties. Finally, out of the depths of my memory about our grandfather, I remembered that it's not a gradual, linear decline. It's like a seesaw. One day he'd be fine, the next irrational. It was gradual in the sense that the rational times became shorter and fewer, but glimmers of his old self would still come through until the last couple of years. I was getting worried about my brother because dealing with her was so stressful. He lives the closest, so he gets the brunt of a lot of this. I finally convinced him that we should just back off and let things take their course. We've tried fixing the situation, and we can't. So we just need to enjoy her rational times and basically ignore her irrational times and not let them stress us. The facility has the final say on whether they go to assisted living or not, and by arguing with the manager (which we have done), we're just stressing them out and that doesn't help Mom. We're going to recommend to them that they just ignore her calls. She's gotten to the point where she doesn't remember them the next day. As for reporting them to the State, they have the legal protection with the doctor's finding, and if they know we back them (they are quite compassionate, despite the manager's style), we think they will back off and just wait until Mom really does need assisted living. She's not there yet. So I guess the bottom line to all this is, recognize that in the early stages of dementia, the real indicator of how they are is the irrational times, not the times they are themselves. And that it's not a straight-line decline. There will be days you're convinced they can't possibly have dementia, and the next day they may be irrational, but trying to get them to recall the day before, when they were rational, is fruitless (and vice versa). It's like she's two different people, and the same was true for my grandfather. I see a LOT of people on this forum struggling with this seesaw. Recognize that routine is important, as it is to people with dementia, and they can convince themselves of anything. And those delusions can carry over into their rational times. Don't argue with them because it just stresses them and you. We've noticed that Mom is fine with the daily stuff, but it's now approaching the point where weekly stuff, like going to church, is too infrequent for it to be part of her routine. Incidentally, Dad can't keep her on track. He has his own issues. He doesn't have dementia, but he does have periods of aphasia because of Parkinson's disease. So he's very routinized, too. I hope this helps someone. When I got together with my brother the other day (I was able to visit just him and his wife, without Mom), I could see the weight lift from his shoulders as he realized that he can't "fix" this. That allowed us to move forward to figure out the next steps as they're needed.


Has she met with an audiologist about her tinnitus? Presumably it is worse at night because during the day normal sounds and activities drown it out, perhaps some white noise at night or even playing music or a radio on low volume could help her.
You are so right. Dementia impairments fluctuate, even within a day. And many of the complaints can't be fixed. Thanks for sharing.
idahopilot, I agree 100% with cwillie above. I've had tinnitus all my life so I have gotten use to it. When tinnitus starts at an older age, it can be batty.

Good idea about some type of white noise at night. I know for myself I have my TV on until I fall asleep... there is a timer that will turn it off after 2 hours. Of course, hopefully your Mom's hearing is still good enough that she wouldn't need the TV on loud.

There are suppose to be products on the market to help with ringing in the ears. I've never tried them.
This was exactly the same scenario with my mom in her apartment building!! When she was in the early stages of Alzheimer's, she had insisted that she heard noises in her apartment (that she lived in for 50 years and never heard before). She called the manager multiple times and he checked it out repeatedly-nothing. Then she called the building owner. He came over and spent the whole day in her apt. but, again, nothing. I came up for Christmas that year and spent 3 days with her. I was putting my ear to the wall, head out the window, listening in the closet, etc. all the time-no noise.
Then I took her to the grocery store. I forgot something, so I went back in to get it. When I came back, she said, "I heard the same noise that I hear in my apartment." Then we knew it was in her head and not the building. (What a relief to the owner and manager). She had been tested and found to have early stage Alzheimer's.

Since then, she has complained of "terrible headaches". I have taken her to brain surgeons, MRI's, CT scans, blood tests, X-Rays, ear exams, physical therapy exams, eye exams, etc. There is NO cause for the headaches. They have prescribed every medication for her (including Morphine) and nothing works.

In the research I've done, the Alzheimer's sufferer can "hear" noises in their head ranging from muffled voices to ringing, to sounds of motors/engines, to clicking, etc. Maybe your Mom is experiencing this phenomenon too.

My mom is now in stage 6 Alzheimer's and she complaines about her "pounding headaches" 50+ times a day, however she does not exhibit ANY signs of pain. (No rocking, holding her head, frowning, poor appetite, nausea, crying, grimacing, etc.) In fact, she's got a great appetite (eats as much as I do and she's 94), no problems in the bathroom, etc.

I'm sure these sounds are related with the dementia and she "describes" her discomfort with these sounds as a "terrible headache".

NHS Choices on the web has this to say;
Hallucinations are where someone sees, hears, smells, tastes or feels things that don't exist outside their mind. They're common in people with schizophrenia, and are usually experienced as hearing voices. Hallucinations can be frightening, but there's usually an identifiable cause. For example, they can occur as a result of:
taking illegal drugs or alcohol, a mental illness, such as schizophrenia or 'dementia',
a progressive neurological condition, such as 'Alzheimer's' disease or Parkinson's disease, loss of vision caused by a condition such as macular degeneration – this is known as Charles Bonnet syndrome.

From CNN with Dr. Otis Brawley, chief medical officer from American Cancer Society
Auditory hallucinations are the hearing of sounds, usually human voices, that are not there. Visual hallucinations involve seeing things that do not exist. It can rarely be seen in patients with Alzheimer's disease and several of the common dementias, but it's more often associated with a number of other conditions.

Hallucinations are most commonly associated with psychoses, especially schizophrenia. Confusion at night in unfamiliar surroundings, such as a hospital, can be associated with visual and auditory hallucinations in the elderly. This is commonly called "sundowning."

Auditory hallucinations can be a side effect of drugs, especially narcotic pain relievers, antidepressants, anti-anxiety drugs and even common anti-hypertensive drugs. The list of causes of auditory hallucinations includes seizure disorder. Hallucinations can be the only manifestation of a seizure. Alcohol withdrawal and even migraine headache have been associated with auditory hallucinations.

Very treatable conditions that can present with auditory and visual hallucinations as symptoms are hypothyroidism (thyroid deficiency), hyperparathyroidism (a hyperactive parathyroid leading to a high amount of calcium in the blood), severe vitamin B12 deficiency and advanced syphilis infection.

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