Can they really decline this fast?

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Can they really decline this fast?

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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.

Alzheimer's & Dementia Cognitive Decline Lewy Body Dementia

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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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”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 will discuss that with her doctors. She has had several MRI and CT scans (probably one a month since this started) and no strokes, everything came back "normal" with each.

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Hi Primiana,
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

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When was her last urine check and bloodwork?
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 🙏🏼

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Thank you, yes! She has been on rounds and rounds of antibiotics for the UTI and after the 5th one the doctor at the rehab said "it's colonized now" and that they didn't think it was worth putting her back on antibiotics. We are fighting at her nursing home now that they test for UTI, and we're waiting on the culture. Her bloodwork did come back all normal, even her cholesterol went down. All her tests come back "normal," except for that awful UTI.

You bring up a good point about Vitamin D... I will ask about that too.

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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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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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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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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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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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It is very hard to witness. Thank you so much for answering my questions!

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My heart goes out to you! I can relate to a degree. It’s so painful to see a parent go down hill so quickly mentally. I would suggest that you google Teepa Snow as she is an expert on Alzheimer’s & the various forms of dementia. Personally, I have found her YouTube videos to be very helpful. Also, Dementia Care Blazers on YouTube is very helpful. You will learn a lot & also find consolation. God bless.

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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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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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It hurts to read about your situation and your mother’s conditions. Alzheimer’s and dementia are a learning surprise for everyone. Your mom’s condition is worse with bipolar/schizophrenia. Have you considered a geriatric psychiatrist for mom? Your mom needs a professional with appropriate expertise who can look at her overall health and problems, and help you manage her care.

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The best answer to the mystery of your mom's decline might be best unravelled by a neurologist (evaluate and treat the dementia aspects), a geriatric psychiatrist (to evaluate and treat her mental health issues) and an internist (to evaluate and treat any physical issues). It seems that all 3 types of issues plague your mom. Mental health is playing a huge role in her self neglect. Infections can cause problems in thought processes - especially if she now has chronic renal problems. Dementia can start earlier than age 70 and your mom may have a touch of this as well.

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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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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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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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Is your Mom on a maintenance dose to prevent the UTI’s from reoccurring? My Mom presented with a severe UTI on the last day of a round of antibiotics. And, yes, a culture and sensitivity was done to make sure the bacteria was sensitive to the medication. We tried Keflex as a maintenance drug; however, it is proving to be hard on her sensitive stomach. We will try Hiprex as a maintenance drug to prevent further UTIs. There is a also a new OTC high dose cranberry pill, UTIVA which also may be effective. It is costly at about $100 per month and is not covered by insurance. The cranberry pills found in the drug stores do not have a high enough dose to prevent UTIs. D Mannose is also another preventative which can help with E Coli or gram negative (the bug found in feces) UTI infections.

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My mom was only 70 and very mobile when this happened.I had alot of trouble accepting that I could not do much. This came on to my mom with not much warning. When they are depressed prior you might not see those signs as out of the norm for her.

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My heart goes out to you , but yes it can happen that fast , my mom like yours was living on her own and she had the small signs of dementia, we kept an eye on it , we fortunately live close to mom. My mother had a blood clot in her leg and ended up in the hospital where she developed delirium, the down hill fast started there . When released we moved mom into assisted care , ( we found pills hidden all over her apartment and my moms pills were in blister packs) . In assisted care it was ok for a bit till mom got a UTI and then delirium again , ( delirium can change the base line of dementia), mom was way worse , not able to walk , unable to feed herself , talking most of the time Gibberish, and emotional and even aggressive and argumentative. Covid lockdown of course made things even worse. We have been lucky to move mom into one of the best long term care homes in Ontario where she is getting the best care , she has not improved much but is in a dementia ward with staff able to meet her needs and care. I have done a lot of research and reading on the subject of dementia care and urge you to educate yourself by doing the same .

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You do not need to add to your own guilt and concern about "not doing something sooner.". If your mother's decline is due to Lewy Body or other aggressive dementia, there would not be a lot you could do earlier to prevent its progression

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.

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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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My god, this is my same story but it's my mom. I'm so sorry.

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My mom also went through a rapid decline. She went to the Emergency Room, in January, for a severe UTI, the ER sent her to Transitional Care/Rehab., and that turned into Long-term care.

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.

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This is a very difficult time for you, and for your mother as well. If your mother really is declining so fast, the consolation is that when things are this difficult, faster is better than slower. My mother died in 3 months (from cancer that returned suddenly) aged 78, not so different. You can’t really do anything wrong, so long as you make sure that she is not in pain. Stay in there, keep yourself together to do the best you can, and don’t blame yourself for the fact that the end comes to all of us. Don’t let your own distress make things worse for both of you. Lots of love, and don’t worry.

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My father declined rapidly after a stay in the hospital for a minor brain bleed. After the surgery he was recovering quickly and was sent to a rehab hospital. There things rapidly deteriorated, he was unable to walk, feed himself, was highly agitated and confused. Because of covid my mum couldn't get in there until the Dr ( and I use that word loosely) called and said he was in need of complete care and would not recover. My mum demanded to see him and found him severly dehydrated and having lost an insane amount of weight. They had basically left him. Against Doctors advice, my mum removed him and brought him home. He was walking within a week . He had delerium, which is very common (especially when left without anything to drink or eat) It sounds to me, from what you describe, that your mum is acting just like my dad was. So many things can cause delerium but for some reason, it gets brushed aside. The rapid decline you describe is how delerium shows. UTI's are a major cause of delerium.

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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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Imho, yes, a decline can happen quickly. It did with my late sister in law, who had Alzheimer's. Your mother needs an evaluation by a geriatric neurologist.

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I am so sorry and am also in a similar situation with my mom. Lifelong schizo/bipolar/hallucinations controlled largely by meds. Then came strokes. That was 2+ years ago. Admit to MC because strokes affected ADL and memory, executive functioning. UTIs. Fainting. Med changes. At Mother's Day she was recognizable and knew me. 2 months ago! Now: word salad, no concept of time, distracted by anything while trying to talk to her on the phone. For about a month, in May-June: Claims of rape. Children being killed. Mistreatment. Negativity, paranoia, extreme anger, abandonment, money, stolen laundry, room mate poisoning her, wants to escape, buying a house, meetings with executives to correct the travesty of snooty rich old ladies making her feel poor. Last 2 weeks: mumbling, a few recognizable phrases, outraged voice. Admittedly, her place sounds like a zoo of screaming people, the staff practically yells and talks to residents as if all are deaf toddlers (my god, I am not putting them down, I have no idea how they do their jobs!), my point is my mom cannot live in bedlam, and yet she must, and her coping skills are gone. In 2 months! She cannot effectively communicate, rarely answers the phone, cannot make a call, places the phone upside down yelling: hello hello! Begs staff to tell her: "Am I in my room? Am I on my bed? Where am I? What am I doing?"
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. ❤

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Just checking on you and your mom 🙏🏼💕

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Thank you @Momheal1! It has been a difficult month. We have decided on hospice, after the nursing home she was staying at sent her to the hospital where they found blood clots all over her limbs and yet another UTI infection.

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.

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Can they really decline this fast?

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