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alisonouchna Posted February 2012

Major Rapid decline/hallucinations/like a light switch went off.... HELP PLEASE!!!

2 Weeks ago dad was okay living with care. Flirting, calm, accepting of shower, food, company, etc. Then, all of a sudden he began hallucinating in an almost manic way. We put him BACK on seroquil to calm him and he has calmed but the hallucinations have not gone away. We are trying hard to rule out any underlying infection,etc - but he will not leave the house.

Has anyone had experience with someone changing overnight - no warning signs, no nothing? Is it usually some underlying thing? Trying to help my father and his caregiver from 400 miles away while 8.5 months pregnant, so can't even go see things for myself or physically help in any way.

Major worry and anxiety on my part and just simply not sure what is happening or what I can do or should do.

ANY and ALL advice wanted, needed, and appreciated!!!

Thank You

caregiver7 Mar 2012
by the way I wen through this with my parent who was ccompletely out of it for 24 hours turns out it was a UTI. remember elderly and sick ppl bounce back slowly it cn take months. Good luck for you your fam and the baby.

caregiver7 Mar 2012
I have learned that an infection particularly a UTI can cause the sudden appearance of dementia, Been told by a nursing home employee friend that shes seen it hundreds of times. That often a uti can also cause dehydration which can also result in the same in elderly people. Get re checked for the uti though it would be my guess that the antibiotics should have knocked it out but my not have completely. I am not a phycian so please speak to your fathers doctor. but sometimes there is more than one issue going on. was he checked for ant type of stroke? is there a family history of dementia. while keeping the kindness of not submitting an ill person to the gauntlet of too mant tests at once unless your doctor says so (again my opinion only you must decide) I would keep asking untill you find a second or third opinion.
get some respit care if not through medicare then check with your local religious affiliation for volunteers you need to have something in place for when you have the baby and not wait for it to reach the crisis stage. step back for a day and get a plan together, get a social worker from the hosp, reach out to a CHA (certified home health care agency) they can provide many short term answers.

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anonymous95109 Mar 2012
Alison: If your father's situation does not improve and he needs to be placed in a care facility, is it possible that you could move him to a good facility in the city you live in? Maybe that would reduce stress for you if he was close by and getting good care.

jeannegibbs Mar 2012
NYGfan, my husband was diagnosed at a specialty unit of the Mayo Clinic. His primary care doctor (internal medicine) at the time was worse than useless about the sudden onset dementia symptoms. Hubby continues to see the behavioral nuerologist at Mayo and we have found a wonderful local geriatrician for his primary care needs. She understands LBD and works carefully to avoid drug interactions, etc. In my expereince, having the right doctors has been a HUGE difference in quality of life.

NNYnNYGfan Mar 2012
Jeanniegibbs....how was he diagnosed with LBD? My mom seems to have all the symptoms but her doctor doesn't think so. Some days she's "OK" & totally confused and out of it. Convinced I'm tricking her or worse, killing her with her meds. Paranoid about dead people stealing from her or bugs, mice & snakes hiding in her bed. She is very nasty & confused not knowing where she is. She loses all sense of time like she hasn't eaten in 3 days or showered in 3 days. Always 3 days, never more or less. Problem is that she is sensitive to antipyschotic meds. She has liver disease & is a Dialysis patient which I think may make side effects worse. She becomes immobile, can't talk, walk or feed herself much less go to the bathroom. She currently is on 2mg of navane & .50mg of klonopin to make her sleep. Anyone try anything else? Seroquel was horrible.

jeannegibbs Mar 2012
Dementia is a hideous cruel disease, for the people who have it and for those that love them. I am glad that there is extensive, urgent research going on world-wide to learn to deal with the dementing diseases -- to treat them, to cure them, and especially to prevent them. This is a mad race against the baby boom hitting the age range where dementia is most common. We can all support funding of this research. My husband has signed up to donate his brain to the research, when he is done with it! None of this is of immediate help to you, but I do want to emphasize that we caregivers are not alone, and scientists and governmets and funding agencies are working diligently on these awful diseases.

I understand when you say that your father would never want to live like this. Neither would my husband. My husband's health care directive states DNR, no feeding tube, no artificial life supports. I will respect that when the time comes. I think it is acceptable to decide not to treat pneumonia if the person is in advanced dementia. But rejecting life-prolonging treatment is not the same as actively promoting death. I do not at all think you are an awful person for having these thoughts. Our culture does not condone taking action on them, but the thoughts are understandable.

Are you in touch with your father's doctor? Have you met him or her? Can you conduct email conversations with the doctor? What does the doctor think about trying drug treatment for the hallucinations?

My heart goes out to you. I hope that you can leave this in the hands of his caregivers and his doctor for a few weeks. Or perhaps your husband can handle the communications. You need your strength and calm for the new life you are about to bring into the world. Best wishes to you.

NNYnNYGfan Mar 2012
Ali...I'm in the same boat with my mom. I have 2 sibilings but I may as well be an only child. Non existant & in denial. I'm her 24/7 caregiver & pray to my dad to call for her in heaven. I too feel like people will think horrible of me but I'm exhausted. I dont even sleep in my own bed with my husband anymore cause I stay in her room so I can catch her before she wanders & falls which is constant. You are not alone...

alisonouchna Mar 2012
Dad finally taken to hospital and diagnosed with Diverticulitis. Is on Antibiotics, but is still hallucinating and getting quite agitated because he is in an unfamiliar place with unfamiliar people. I am just so confused and at a loss. I have never felt so alone, not knowing what to do. I am far away -- cannot go to him because I am due to have baby in 2 weeks.

Is this it? Is this what Alzheimers does? Will this go on forever? Are we in need of a home/assisted living? I am alone, (only child), hubby is awesome, but has no idea how to help other than being sweet and awesome. No info or support system. His caregivers are wonderful, but not family and are just doing their job.

Is this going to get worse? His hallucinations are terrifying, sad, scary, etc. This is nothing like the man I know. Why so morbid and terrible?

Why isn't there a way to spare a person from this disease? I lost my mother to Cancer 5 years ago and it was much easier than this. Why isn't there a legal and humane way for a family to "cope/deal" with this disease. I ask this not be be horrible, but I cannot be the only person to feel this way.

How is it even possible for someone with AD to be happy. What is the quality of life if you are scared and paranoid all day every day. How can one be happy if one is thinking of dead things, and horrible scenarios all day every day??

My father would never allow this to happen. How do I cope with this? He would NEVER want to be a burden on his family - especially me... And sadly, yes, this has become a burden... You may call me insensitive - I call me honest, and to the point. I do not lie, I do not mince words.

Just looking for support, answers, words of wisdom, help. Just anything. I am new and alone and just in need of help.

Thank you,
Ali

frazzled28 Feb 2012
definitely sounds like an infection of some sort, or an electrolyte imbalance...If you don't want them to take him to the ER, then a trip to his GP, and some blood work, and a urinalysis with a culture would be recommended.....

alisonouchna Feb 2012
I want to keep him out of the ER - he does not do well in that situation. I am thinking he has some sort of UTI or other infection. The caregivers are a little hesitant to take him anywhere as he can become combative. His hallucinations are also "keeping" him in the house - he doesn't want to leave. I will do my best to get a visiting nurse out there if I can, and I will let you all know what is going on.

Thanks for your words and your help!!

anonymous97903 Feb 2012
This happened to my dad twice. He had leg infections both times. The doctor told me that is what caused the confusion, hallucinations & sleeping. His behavior was bizarre. I too would call 911. It's so difficult to care long distance. Take care of yourself & let his caregiver take care of your dad. Best of luck to you & your baby!

Prophet Feb 2012
I agree with others that the caregiver should call 911 and let him be taken to the hospital because one of the side effects of seraquel is hallucinations also. If he has Dementia, it could be manifesting that way with the hallucinations.

May i also encourage you to please take care of yourself and try try so very hard not to stress out because of your pregnancy. It is hard to help someone that is so very far away. I know because I have been doing it and my mom won't come and live with me. She was recently put in an assisted living facility and I am very upset because I want her with me so I can take care of her. Remember to take care of yourself. You may also look into calling an in-home service agencyt such as Amedysis, which whom I used that will provide services to him and you can have a point of contact plus you can use your caregiver maybe to offset the times when they are there. I hope this helps.

jeannegibbs Feb 2012
In most cases dementia declines are gradual, but it is not unheard of to have them happen aburptly. But usually a very sudden drastic change has some other cause, such as a uti.

If at all possible, I'd encourage a visit to his primary care provider or someone in that clinic. Most give same-day appointments for urgent needs. I say this because an ER can be very confusing and upsetting to someone with dementia, especially if they are hallucinating or delusional. Sometimes it can't be avoided, but if possible I try to keep my demented husband out of ERs. Another problem with ERs is that in their haste to get at the problem they may use antipsychotics to calm the patient quickly. Depending on the kind of dementia, some of those drugs can be damaging. For example, haldol is very risky for persons with LBD. We were in the ER last month and the treating doctor had never heard of LBD, let along knew what drugs to avoid. I stayed with my husband at all times to keep him calm, and I carry a wallet card about the meds.

If there is no other way to get Dad in for medical evaluation, seemeride's suggestion of 9-1-1 is a good one. I would hope for something less drastic, but do what you have to do to have him evaluated.

My heart goes out to you having to do this all over the phone. Do you have a relationship with his primary doctor? That would be helpful in times like this.

And along with Jessie, I'd like to hear the outcome. We all learn from each other.

JessieBelle Feb 2012
Yes, this one definitely needs medical help. Please let us know what the doctors say.

seemeride Feb 2012
If he were my dad, I would have caregiver call 9-1-1 and have him taken to the Emergency Room. Let them do blood and urine analysis. Sounds like an emergency to me. If he is hallucinating, I wouldn't give him a choice in the matter.

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