What can this be but that?

Brooklyn74

Hi Everyone,

Thank you to everyone who has offered me help and advice, it is beyond appreciated.

I have posted something along the lines of this, but now that I have more information, I wanted to reach out with a specific question, instead of a large post with lots of stuff at once.

My mother is sick and I know that Dementia is different in every single person, and comes on differently in every single person. But this feels so wrong and different. I mapped out a timeline of when things started happening.

August 2022- slightly confused, but not horribly. Would bring papers to be copied and forget them at the store.

September 2022- Missed an important work event. Got confused walking to a new eyeglass store, and called the wrong person for directions. But still made it to her apt. on her own.

October 2022- Fine with making an apt and writing/reading, speaking, getting tasks done.

December 2022: By now, I realize she hasn't paid all her bills and finances are off, so I step in. But, she's still speaking clearly and writing well (very well), memory is foggy at times, but clear a lot of the time.

May 2022: Stuttering, can barely speak full sentences, is more confused now, switches pronouns for people (he/she), can't really write well. Forgets what her friend looks like.

Again, I understand how dementia works, but to me this is crazy fast. 4 months and she can barely complete a sentence? Forgets how to use a phone?

CT Scan and MRI are perfect. All they show are normal aging.

Urine and Blood Work are perfect. Doctor says she's healthier then he is.

She has a nodule in her lung, but after an MRI, doctors say they'll just keep an eye on it.

She is always cold now and she never used to be.

Her amazing sense of smell seems to be gone (she can still smell but she used to smell everything like a superpower)

Her asthma is horrible. She wakes up every night not being able to breathe.

She is scheduled for a PET scan in a couple of weeks, although I'm not sure how to get her there, because she refuses to believe anything is wrong. (I also made a pulmonologist apt for June)

I was watching a show the other day, when a women's tests came back and everything was fine, yet she couldn't draw a clock, and so the doctors looked further and they found a tumor in her lung. I understand this is a tv show, but doesn't stuff like this happen? Can't this be anything else then horrific dementia?

Her neurologist said dementia before even looking at the tests and never questioned anything else. She did say however, that it did come on very quickly, which sometimes means it could be something else, but she never went further than that.

I got a second opinion from a neurologist in her office and they said that we should go to a hospital with a research center because she may have more options there, but next apt is in November. Look what's happened from January to now, I can't imagine what November will bring (and I don't want to).

I am losing my Dad to dementia, he no longer walks or talks. I want my mom back! I miss her so much and I'm so scared to be alone. There has to be something we're missing.

Arrowhead

My wife is coming up on 7 years after diagnosis. Other than her Alzheimer's she's in great health. For the most part, I think her progression has been rather steady. However, there was one year where her progression was very rapid, then it slowed down again. Unfortunately, there are many things that can cause mental decline. Has a brain tumor been ruled out? It appears that you are keeping tabs on her progression and that's good. I keep a journal. It helps me keep track of her symptoms over time and has been therapeutic for me.

Brooklyn74

Arrowhead, I am sorry you are experiencing the same thing as I am. This is a horrible feeling. If the MRI and CT scan were "good" does that mean they could still have missed something? I know what a PET Scan does, but I'm not sure it can show anything hidden an MRI didnt. I wish I could find a doctor who really asks those types of questions. I just can't believe this is happening. She was my mom in December 2022 (albeit slower moving) and now it's like I have a small child (and I mean that nicely but you know what I mean). I wasn't prepared for this, and I know we all aren't, but it's just horrible.

M1

Brooklyn welcome to the forum; sounds like you are doing all the right things to be sure that nothing has been missed. The sad, hard fact is that there is no specific test for dementia, and many people have normal structural imaging studies as your mom has had. There is also no way to predict the speed of decline; it's so variable. A PET scan differs in that is shows metabolic activity of the brain--it uses radioactive glucose to see what parts of the brain are active. In dementia, is it likely to show decreased glucose activity overall--where specifically the activity is decreased can also vary, but most likely it will be decreased overall in a general sense.

What you might get at a research center is access to research studies, especially for some of the newer drugs (to my mind, these are still best taken as part of a study, as there is so much uncertainly about their use and safety in the general public).

You mentioned that she's lost her sense of smell. Did she have covid? Covid is known to exacerbate dementia and accelerate it in some people. That could partially explain part of what you are seeing, especially in terms of the rapid pace. Losing two parents to the same disease is especially cruel, I'm sorry for that, too.

Iris L.

"She refuses to believe anything is wrong"--this is anosognosia, which is a characteristic of dementia. Please familiarize yourself with it.

Iris

harshedbuzz

Hi again.

I am sorry for where you find yourself. I can feel the anguish in your words.

Again, I understand how dementia works, but to me this is crazy fast. 4 months and she can barely complete a sentence? Forgets how to use a phone?

Sometimes the disease does progress very quickly. Sometimes, we miss earlier clues that our LO even has dementia meaning we miss subtle clues early on or ascribe them to something else. This can happen because our LO has considerable cognitive reserve and has a higher baseline of function than many. Sometimes we only see our LO for a short time during a time of day when they tend to function "best". A PWD will use strategies to cover for their cognitive decline- "showtiming", humor, and/or initiating fights are fairly common. It's possible there were earlier signs missed because your mom could still manipulate the situation or because her dementia looked different than what you know from your dad or because you just could not deal with the reality of this situation.

CT Scan and MRI are perfect. All they show are normal aging.

These tests are kind of blunt instruments to rule out other causes. They're meant more to look for things like tumors. I have a friend who felt her mom might be developing dementia. She made an appointment with her late father's neurologist and was shocked that the CT scan showed a massive tumor.

Urine and Blood Work are perfect. Doctor says she's healthier then he is.

These tests are important because they rule out the vitamin and hormone deficiencies that could be "the something else" that might be treatable. When he was worked up, my dad did have a mild Thiamine deficiency related to alcohol use disorder. It was treated and he improved considerably for a short time. But he also had Alzheimer's so the improvement would be short-lived under ideal circumstances.

She has a nodule in her lung, but after an MRI, doctors say they'll just keep an eye on it.

I am not a doctor. I can't speak to this.

She is always cold now and she never used to be.

That was one of the symptoms I noticed in my dad. This is often seen with dementia patients and is very pronounced in the alcohol-related dementia he had. The last time I visited my folks a few weeks before dad was diagnosed, he'd set the thermostat for 85F in coastal MD in late July.

Her amazing sense of smell seems to be gone (she can still smell but she used to smell everything like a superpower)

That could be related to COVID. There are certain prescription medications that will blunt sense of smell. My mother had a deep tissue infection from her cat biting her and the antibiotics she was given destroyed her sense of smell for at least a decade.

Her asthma is horrible. She wakes up every night not being able to breathe.

Is her asthma triggered by seasonal allergies? Is she taking her medications consistently and properly? With asthma, the daily treatment is critical to keeping things under control.

She is scheduled for a PET scan in a couple of weeks, although I'm not sure how to get her there, because she refuses to believe anything is wrong. (I also made a pulmonologist apt for June)

It's a good call on the pulmo appointment though I wish she could be seen sooner. Sometimes when I needed dad to have a test done, I would present it as an opportunity to "prove the doctors wrong".

Dad had a PET scan. This was part of the full workup after his hospital discharge. For him, it was ordered to differentiate between Alzheimer's and Wernicke-Korsakoff's. The results suggested both. Many, maybe even most, PWD have mixed dementia. I've never read anything that confirms this suspicion, but it seems the PWD I know who had "mixed" seemed to progress at a more rapid pace. My one aunt had vascular dementia and declined very slowly for years. As she approached 90 her geriatric specialist saw new symptoms consistent with Alzheimer's and added that diagnosis. From that point, the disease progressed more rapidly.

I was watching a show the other day, when a women's tests came back and everything was fine, yet she couldn't draw a clock, and so the doctors looked further and they found a tumor in her lung. I understand this is a tv show, but doesn't stuff like this happen? Can't this be anything else then horrific dementia?

"House, MD"? I personally wouldn't put much credence in a TV medical drama. That said, if it was "House" there's a site called Polite Dissent where people parse the presentation of medical conditions portrayed and point out all the errors. It kind of takes the fun out of it.

Her neurologist said dementia before even looking at the tests and never questioned anything else. She did say however, that it did come on very quickly, which sometimes means it could be something else, but she never went further than that.

I got a second opinion from a neurologist in her office and they said that we should go to a hospital with a research center because she may have more options there, but next apt is in November. Look what's happened from January to now, I can't imagine what November will bring (and I don't want to).

If the neurologist deals primarily with dementia, it's likely she has picked up on the pattern of symptoms and responses to the screening tests and feels certain she is right. If you can't accept that, then it might be best to schedule that appointment with a memory center at a teaching/research center. My dad was diagnosed at such a place. While they didn't have anything to offer in 2016, my in-denial mother was able to accept the diagnosis she fought me on for the better part of a decade which was critical in taking steps to protect them both.

I am losing my Dad to dementia, he no longer walks or talks. I want my mom back! I miss her so much and I'm so scared to be alone. There has to be something we're missing.

I am so sorry for what you are going through.

HB

aeliasz

My mom was diagnosed with AD in 2018 but I’m pretty sure it started years before that. She also lost most of her sense of smell around 2019. Lily of the valley flowers were always her favorite flower scent and she said “ eww it stinks!” She never had covid.

Brooklyn74

Thank you to everyone for their support, feedback and information (knowledge is power). She still has a sense of smell, but before it used to be a superpower- she could smell things better than anyone I knew, now she can't smell rotting food when I open the fridge... but she can smell flowers up close. I hope that made sense. I'm not sure she's ever had covid. She has always tested negative when tested by a doctor, but she got really sick a couple of months ago and tried to do a self test but couldn't figure it out. Not sure if antibodies were ever tested for in blood work, which would be another way to tell.

She keeps tell me she's worried about my anger, and that she has a hard time loving me bc of it and feels a total disconnect. I apologize over and over and tell her I'm drowning and want to die because of what's happening and then she just talks about herself as though nothing I say even processes The doctor references frontal lobe dementia because that's where emotions are and she seems disconnected.

I want the PET scan because my brain needs to see what's happening. If there is decreased activity, I need to see it, she needs to see it. And then we go from there.

I spoke to the doctor about getting a Anyloid Pet Scan but she said to get the PET scan first and then with that information, we move to the next step. Anyloid would check for plaque in the brain.

We have a pulmonologist apt this week too. Although I have a feeling a lot of her issues are anxiety based, and there is no real way to fix that.

Nothing has really happened today to "set me off", but I have been crying for an hour. I have had a long exhausting week so that's probably why. All I do is work, work, work. Work on actual work, take care of my dad, take care of my mom, take care of the properties they own, their finances. I don't even know how to find time to find someone to help me- I need an aide, geriatric care manager, a finance and business guru. I am tired, so very tired today. I woke up and my entire family was gone, and now it's just me. I don't even see my friends anymore. I just spend the time fake smiling and being jealous of their lives and then I come home and see my life and crumble even more.

Well it's 130pm on a beautiful Saturday holiday weekend, and I ran errands this morning and now I have to do more work instead of having fun. Thank you all for listening to me vent. It's a hard day.

harshedbuzz

@Brooklyn74 said:

"I want the PET scan because my brain needs to see what's happening. If there is decreased activity, I need to see it, she needs to see it. And then we go from there."

Will your insurance cover the test or will you be paying out-of-pocket? It's an expensive test and not done routinely at all imaging centers. Dad's was OKed because they were trying to differentiate between dementias; my mom's a retired teacher and has remarkable health insurance.

That said, I can appreciate that you are struggling to wrap your mind around what is happening and that perhaps this will help you deal with the hand you've been dealt.

I don't know what you expect your mom to do with this information. She likely has anosognosia and can't appreciate that she's impaired in any way. Her reality is that she's fine; I doubt she's be convinced and would only become more paranoid around you and her medical team which will complicate your life further.

HB

M1

Im with harshedbuzz on the pet scan, it may help you but almost certainly will not help your mom. You sound like i did eight years ago-i harbored the illusion that if our excellent internist told my partner she had dementia, she would have an "aha" moment, understand the implications, and forthwith know that she needed to defer to me (and let me just point out the irony here, i am also an internist). He literally laughed at me and I've never forgotten it, that was my "aha" moment. So i would encourage you to move away from the "she needs to see it" thinking. It won't mean anything to her and will not help you move forward in that regard.

Caro_Lynne

Brooklyn, in your most recent post you sound so overwhelmed and I/we understand that feeling. I'm sure you do not intend to sound negative, but I hear/read so much pain and sorrow in your post. Seems like you are very busy with work, parents, etc., but unless you make the time to find some assistance, things will only get worse. Please take a few minutes to breathe and focus on the positive things in your life; easier said than done (I know), but there is always light in the darkness, we just have to let it in.

These are the cards we've been dealt and speaking from my experience only, with my acceptance of the situation and responsibility that has been thrust on me, I have been able to find peace in knowing that I am doing the right thing for someone that has no one else to care for him. Don't get me wrong, it's frustrating, exhausting, infuriating, and many other adjectives (I think that's right), but I believe in minimizing my regrets and I do not want to have any regrets regarding my LO.

We are here for you and wish you peace. ❤️

I raise Monarch butterflies; here's one born a couple of days ago.

Arrowhead

I wish I had kept better records. My wife had an MRI that showed brain atrophy, but I think it took a Xray Fluoroscopy Needle Loc Spinous (which I think is a spinal tap) for the final diagnosis. 

Anonymousjpl123

Others have offered excellent advice to you above. I’m just here to say that I’m in the thick of this too with my mom and this disease is especially punishing because those close see the mental changes, loss of memory, confusion, and inability to care fir oneself, but it’s not always a straightforward diagnosis.

Also, working full time and caring for my mom has nearly done me in. I can’t imagine caring for both parents. You will get through this and you are taking all the right steps. I know it feels like it will never ease up, but it will. I hope you can find small spaces for yourself to get a break. Also nothing wrong with having a hard, fall apart day. You are coping with an enormous amount of responsibility and it is exhausting.

Getting a care team and support network for yourself in place is key. Just sending positive energy to you as this is a nightmare I don’t wish on anyone. People here have a LOT of good solid wisdom.

Brooklyn74

I reached out to GCM's and aide services today, all 2 of them in my mother's neighborhood. Of course they are all closed, but at least they'll get my message in the morning. She is supposed to go back home next week, and I want her to have help. But, I'm not sure what help I can obtain, that I trust, in a week. And what kind of help, I don't even know. The longer she stays with me in my small apt, the more confused she becomes. My "mom" rarely makes an appearance anymore. I really miss her. But, she had an emergency last week and it was so bad, and it took me like 7 hours to get to her with traffic, so I brought her to crash with me for a while. Also, her lease is up and she needs to move. I'm looking for assisted living, but some days are bad now, so maybe memory care, I just don't know. And $10,000 a month- What the hell, who can afford that.

GothicGremlin

Hi Brooklyn, I'm so sorry you're going through this. It's terrible.

I don't have much to add - so much excellent advice here already. The only thing I can add is a bit more about a PET Scan. My sister, who was diagnosed with early-onset Alzheimer's (at age 58) first had an MRI, which didn't turn up much. At that point the doctors didn't think it was Alzheimer's. Then she had the PET Scan. It was the MRI, coupled with the PET Scan which led to her diagnosis. It's exactly as M1 described. In my sister's case, she really wanted to have those tests - she didn't have anosognosia yet, that came much later.

Looking back, I think it was more important to me, than to her, to know that she really did have Alzheimer's and not something else. Knowing hasn't changed the course of the disease, but I guess I do have some sense of peace that I'm navigating the correct disease, if that makes sense.

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Brooklyn74

My mom's fridge smelled rotten because she buys too much and never eats and the food goes bad so I clean it out for her. It breaks my heart. I don't have time to shop so my fridge is empty. I live off take-out.

My lawyer was hired by the court to help me with a couple of things. Now those are done, he's like Ive done everything I was mandated to do, and I don't want to help anymore, and since I don't have to, I'm not going to. isn't that grand? I'm convinced every lawyer on earth is a pos. I can't find a good, ethical, kind elder care lawyer. They all want money and honestly don't give a shit about my dad.

How can no one care that the person guardian spends spends spends. even the court doesn't give a crap. He didn't want anyone caring for him except me in the beginning, so they hired a doctor who literally (not an exaggeration), drugged him so badly, he accepted the aides because he could barely walk and was drooling. And no one said ANYTHING! Not even my lawyer. He was sick in the hospital and what did they do, drug him again, and guess what that did to him..exactly.

I found the one GCM in my mom's neighborhood, but haven't been able to set up the $300/hr plus travel evaluation just yet, so she'll be on her own until I do. I'll bring her home for her PET scan, and food shop etc. And just live in fear everyday praying she's ok. She's better at home, with all her things, and I'm better at my house getting everything done, but I want her nearby. But then I think about what that would take, me packing her alone, moving her alone, unpacking her alone. Plus my job and doing all the other stuff. Her CPA finally sent me docs I need to process for loans, and I haven't even looked at the email I'm so busy. I'm officially drowning. The GCM can help set up legal paperwork etc. That at least I may need her for. Updating POA, and estate paperwork. But damn, do I hate paying someone for something I can do.