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.
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.
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.
I agree with Grandma1954. As you say, the initial problems may have been going on for a while. The hallucinations starting several years ago could be Lewy body, then sudden decline could be from vascular causes. You may also want to browse around on this forum too.
https://www.alzconnected.org/discussion.aspx
It took 4 months and several rounds of antibiotics to clear my moms UTI and she had all the behavioral things you mentioned. When she becomes less responsive or mute she always has a uti and or low electrolytes (usually potassium) and even when her vitamin D3 is low - I would request all the above be checked to help you get a clearer picture and then it may help you on moving forward.
I would also check any new medications (my mom has very strange reactions to many meds - there is an antibiotic (cephalosporins) that gave her toxic encephalopathy and that was like delirium x 100 - her neuro said she is never to be on that class of antibitoic again.
you are correct in saying a nursing home will never be as proactive as you are - many UTIs or infections mimic strange behaviors that are often written off as dementia and never addressed. Continue to be proactive when your gut is that there is something more going on for that severe of a decline 🙏🏼
You bring up a good point about Vitamin D... I will ask about that too.
Thank you so much for sharing your story, Jeanne.
Seems like her Drs have done everything. Sometimes the cause just cannot be found. So sorry.
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.
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.
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!
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.
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.
With your mother's mental and emotional history, she probably has few mental reserves for dealing with current deterioration.
Does her own PCP still have input or is all medical supervision now up to the doctor associated with the NH? Make an appt with the doctor supervising her care where you can discuss her condition and prognosis.
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
Before the ER visit she was dressing herself, doing her own hair, walking. She also had hallucinations.
When she went into the ER, she was asleep, unable to eat without assistance. After she received the antibiotics, she was up and walking again. Then, she got another UTI, and was constantly asleep, unable to walk or feed herself.
Now, 6 month later, she is in Long-term care. She can walk a little, feeds herself, talks (but in a way that doesn't make sense), can remember her birthday and the 23rd Psalm, and some other things, with prompting.
With my mom, it goes constantly back and forth.
I wonder, I ask, no one knows:
Is it meds? Strokes? Going to continue to decline? Dementia advancing? A UTI (I have no way of finding out as I am not there but hope they are really testing.) Did she fall? Is she okay when NOT talking to me?
I am 1880 miles away and I have no way to know.
But yes, I have seen a very quick decline, flabbergastingly, horribly, fast decline.
I am sorry for us all, it is heartbreaking, whether slow or fast.
Folks here don't realize how incredibly helpful they are, thank you all from a mostly lurker person, I read and learn from you all, every day. ❤
We were doing okay for a little bit there. We found a nursing home we thought we could trust and had employed private duties for every day of the week... the ICU at the hospital was actually impressed with how good her skin was for her state.
But then two weeks at the hospital produced a level 4 bedsore. How could that be?!
Now we are honestly thinking of bringing her home and setting up 24-hour care, along with hospice. I feel we can trust no one tied to the Medicare system (we're in Florida).
A tough post but it warmed my heart to revisit this and see your note.