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When my mother first showed signs of delirium in mid-February, and the hospital said it was a UTI, you all were so helpful in educating me about the dangers of UTIs with the elderly.


Now it's been nearly 5 months and my mother's decline has been tremendous. If I'm being honest with myself, she started declining years ago, but she is only 76 (and I am 32) and I never thought it could be any form of dementia. I lived in a world where I trusted her decisions to take care of herself, trusted her doctors. But if I look back...


2-3 years ago it was constant hospitalizations for anxiety/panic attacks. Her doctors put her on psychotropic medications (for supposed schizo/bipolar) that she kept starting and stopping on her own... which caused a lot of tension and anger in our family. Then the tremors came, and she blamed the meds. During those years, I think she changed her medications every 3 months. I stopped keeping track. Oh yeah... and she confessed to be of having visual hallucinations she kept hidden for a few years.


Months after the COVID lockdown started in March 2020, after I begged her from far away (I live in a different state) to not leave her home and organized her grocery delivery, she started telling me she was losing interest in bathing -- and it scared her! We got her a private duty for a few days a week. It helped her for a while, but then she started refusing the care's help too.


I arrived to check on things with her in Jan 2021, and then she had her epic decline in Feb 2021 w/ the UTIs. Literally one day she was walking on her own (with a little bit of shuffling), talking coherent sentences, able to feed herself.... to bedbound, incoherent, emotions all over the place, unable to use the bathroom, feed herself, basically do anything for herself. I walked her into that hospital one day and she became a different person the next.


It's now been months of rehabs, hospitals, a stint at home, and now a nursing home. In these 4 months she's lost even more ability and it breaks my heart to say that now we can't even talk on the phone. She stays mute when I call, as if she doesn't understand the phone. She moans, she yells, she screams, but no words.


A neurologist believes it to be Lewy Body Dementia, but even she says this decline has been very rapid. Is this normal? I don't know what advanced stage dementia looks like... is this it? Can psychological issues prior affect the gravity of dementia? My mother was depressed my whole life, and when that earlier diagnosis of bipolar/schizophrenia came we thought "that could be it." She was difficult, that's the truth...


My biggest fear is that I'm so inexperienced with the healthcare system that I'm forgetting key questions for the doctors... and nursing homes are no place for proactive care it seems.


My mind has been consumed by all of this... I'm really having trouble accepting that it happened so fast. And that maybe I could've been paying better attention.

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My husband also had an "epic decline"; he was admitted to the hospital with destructive hallucinations and went rapidly downhill afterwards. (He has pca Alzheimers.) He is now in hospice care. I have tried not to beat myself up with "would-ofs, could-ofs, should-ofs ," we all do the best we can with our loved-ones.
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primiana Jun 30, 2021
I'm working through that too. If I'm honest with myself, many forms of dementia run in my family (her own father had Alzheimer's), and for us personally, as much as we tried, my mother gave up on an active life many years ago. I can't imagine what that must've done to her. We've started talking hospice care too...

Thank you so much for sharing your story, Jeanne.
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A person can have more than 1 type of dementia at the same time.
It is possible that your mom has Vascular dementia.
Small strokes can cause a rapid decline. Almost to the point that a person can do something one day and literally can not do it the next day.
If this is this is the case this type of decline can continue until she has a larger stroke that will probably kill her before the LBD would.
My Husband was "officially" diagnosed with Alzheimer's but I think he also had Vascular dementia I can pinpoint most of the times when he must have had a stroke that caused a decline. I would tell people that the decline of Alzheimer's is like walking down a ramp. the decline of Vascular is like walking down stairs with landings between steps. the landings are where things seem to level out before another decline.
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97yroldmom Jun 30, 2021
”I would tell people that the decline of Alzheimer's is like walking down a ramp. the decline of Vascular is like walking down stairs with landings between steps. the landings are where things seem to level out before another decline.”

This is so accurate.
The level out time they do so well with what they have to work with and then here it goes again.
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I don't have any suggestions for the medical part of your post but the phrases :My biggest fear is that I'm so inexperienced with the healthcare system that I'm forgetting key questions for the doctors." and "My mind has been consumed by all of this... I'm really having trouble accepting that it happened so fast. And that maybe I could've been paying better attention." stood out to me.

I work in the health care field and when my loved ones were/are sick, I forget or don't even think about asking some questions that I would if it were someone I didn't care so much for (and worried about). If you think of anything to ask, write it down and if someone mentions something (like in the replys) write those things down to ask.

And as far as wondering if you should have been paying better attention. I think most of us have been and/or are there now.

It's very stressful to be in your position, so worried about your mom. Try to take things a step at a time and keep your mind from racing and going to worst case scenarios (I'm an expert at jumping to the worst case scenario). Pause for a minute, take a deep breath, and know you aren't alone. We care.
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primiana Jun 30, 2021
thank you so much for this!
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Before I read further down in your post, where you explain what the neurologist believes it is, my first thought was exactly that, Lewy Body dementia. We have several ladies in my caregiver support group whose husbands have Lewy Body, and what you are describing sounds just like it.
You may want to educate yourself on Lewy Body dementia, as it is more aggressive than most of the other dementias, and as with all things knowledge is key.
So to answer your question, yes she can decline that fast, and yes depression has been linked to being one of the causes of dementia.
I'm sorry you're having to go through this with your mom. I wish you and her the best.
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primiana Jun 30, 2021
It is very hard to witness. Thank you so much for answering my questions!
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I would think Labs have been done on Mom which would find low levels of potassium, thyroid problems etc. You have written off strokes. Was she taken off the meds for bipolar/schizophrenia to see if they are causing problems. My Mom was sensitive to penicillin and did a 180 when given an antibiotic for a UTI.

Seems like her Drs have done everything. Sometimes the cause just cannot be found. So sorry.
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Yes, it sounds like cognitive decline along the years, coupled with no one being around to see the changes. There are several diagnoses thar can cause these changes, and in the neurological system, one has to really pay attention to requesting testing and many are "rule out" so for example, it sounds like Parkinson's which for many stages increase to loss of independence in functioning and dependence on caregiver unless one joins a rehab program to continue with slowing progression down. If this was missed, then yes, loved one might be facing last stage of any neurological disease, total loss of all functioning and decision making, so I hope all was done to have POA and know her Wishes, DNR, etc. I am sorry, but the only way to be involved with a loved one's care is with their permission if they are lucid, if not, then the POA is used for their safety and to find out about their disease, if not then they decline and lack ability to ask questions about their own medical health. If this is a terminal disease now, you can request Hospice consult, and they will tell you if Qualified for their program. Most get this wrong as well, thinking one has to be dying, it is not that at all, the loved one has to be living with a terminal illness that will take their lives. The program is excellent in compassionate care, and if loved one is in a placement they will accept the care and send team of their own professionals to assist with loved one's comfort measures. Now, keep in mind this is not about improving or trying to get better, so please listen to the entire program offering. When you are not ready, the tendency is to manage your loved one from a place of fear. If mom is ready to leave, this will occur despite all who need her to make them feel better. Dying has more to do with being tired of living, some of us value Quality over just being around for sake of numbers. I was a Hospice counselor and loved it, it was the most thoughtful mission allow others to see that living is one thing but the journey towards when I no longer care to be here is really up to the person whose mind was made up, and they just did not share it. Your mom sounds like she is doing this her way. Sorry, but you might ask one question if you can do so when she is looking directly at you. "What can I do For you Mom?" Also if she is seeing people long passed, she misses them, and joining them is better than staying on this side. If we are lucky and prayerful, getting ready is the journey.
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LindaC11 Jul 5, 2021
Hi
My mom is 96 and still at home with help.
She is tired of living. I have a hard time accepting it.
Thank you for your insight on that topic.
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Yes, decline can happen overnight, as many have shared their loved one’s situation. You can spend the rest of her time and yours questioning where/what went wrong, but it will do no good. You can’t undo this. It is the saddest part of life. Accept it and enjoy whatever time you have. It is extremely saddening to watch, as it can be in SLOW motion. One day, I had a happy healthy mom. The next day, she was like a small child. Sigh. Big hug to you. You’re not alone.
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Regrettably, the answer is yes. Each person and type of dementia can take a multitude of directions, while some people progress slowly, others are rapid. It is very difficult to pinpoint a stage of dementia as it is different in each person. Seeing a loved one especially a parent decline quickly or even slowly is devastating. Please reach out to your family doctor to make sure you don't go into a depressive state yourself. I know a few people that when their parents were declining in health, their mental health was severely impaired. Take care and best wishes.
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sassyisie Jul 5, 2021
My sister was 67 when she started showing signs of Alzheimer’s
At 68 I had to have her hospitalized & she went down hill from there!She is now 77 & does not know me !She does not walk anymore,& now is in a wheelchair!She is on puréed foods because
she chokes on her food!She has been in a nursing home since she was 68 !They take very good care of her & I know she is safe!
There is no two Alzheimer patient the same! My sister has no other health issues!
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My mom had Lewy body Dementia and was first diagnosed with schizophrenia. She declined very fast. Unlike the Alzheimer's patients in the unit my mom became uncontrollable. She had lung cancer and we could not treat that because she would freak out for any biopsy or scans she needed. So difficult to watch this type of mental decline. There is no cure and if she is not safe you could be forced to put her in a memory care...and you may have to assist the staff. This is not your fault.
Mom went through 3 divorces, drank heavily at one time, smoked, abusive relationships. She is in heaven now i love her with all my heart ,my best friend ever but I could not help her . I do believe the past depression contributes.
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Ot happened basically over night with my 97 yr old Dad. He was 95 and almost dies because he wasn't urinating and was taken to the Hospital, he stayed in the Hospital about 4-5 days, returned home with a memory span of 5 minutes.
He had a UTI put in at the Hospital and he started having g 24 7 Care as soon as he got out of the Hospital.
He gets a UTI often and will hallucinate and start thinking everyone is trying to Poison him.
Very Sad.

Prayers
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Ellery Jul 5, 2021
My god, this is my same story but it's my mom. I'm so sorry.
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