What next? Violent talk, physically aggressive, changes words w/o notice, won't eat much, incontinent, miserable, multi-personalities. Any advice?

I spoke with the psychiatrist this morning. He said that the UTI has been cleared and now he's focusing on the hallucinations and trying to reduce them. In addition to the AD, these are just adding to her distress. I saw her Saturday (the day they started a new anti-psychotic med) and again last night for a short while. There was a difference in her behavior and yesterday she seemed more confused than anything - more like she was before, but unfortunately she was pretty out of it from the med. The doc has seen this as well and is going to adjust the med a little at a time until he has regulated it enough so that she's not that doped up. Yesterday she answered one or two of my questions appropriately, which is an improvement. She told me she didn't want to see the puppy (who she loves dearly and would sit for hours petting and fussing over when she was at home) and that she was thirsty. Baby steps I suppose.

The doc also said that he thinks she needs more of a nursing home environment than an assisted living situation which she is currently in. So I guess it is back to the drawing board for that one! I still don't think that we're going to get much more than what we have right now, but we'll cross that bridge in a week or so when they've adjusted meds enough.

Vegaslady, she's been seen by a few neurologists (when she was first diagnosed and again last year when things started to change for her) from different areas and they say the same thing. Alzheimer's.

It is possible that her type of dementia was misdiagnosed as Alzheimers and the medications being given to her are inappropriate for what she really has. How was she diagnosed with her neurological disease and by what type of doctor? She may have FTD frontotemporal degeneration instead, although that usually starts at a younger age. I would be concerned that she has the correct diagnosis first, then get the right treatment.

I've read through all the posts, but can't determine if she has been seen recently by a psychiatrist since in the hospital.

She definitely can not be left in her current torment. So tell them to do what ever is necessary after the Dr has answered your questions.blessings and hope for a peaceful end.

Thanks Veronica. I called this morning to speak with the doctor and the UTI question was one of the top ones on my list. I asked the nurse if she felt that we were in the end stages of the disease and she didn't want to answer me, and said that the doctor liked to answer questions of that nature. This is no way for her to be, surely, and anything we can do to help end the torment is what we need to do whether it is just letting things run their course or medicating more heavily.

My only question is has the UTI been treated properly. Have they retested her urine? other than that, it is possible the drugs could be making her worse. This does happen but in a behavioural unit they should be aware of that. Ask which drugs they are giving her and look up the side effects. Ask them to write the names for you. There are other drugs they can try but the way she is npw is not any kind of life to continue with. This may just be she has entered the predying phase and is on the very of actively dying. The question is should she be more sedated and allowed to remain in bed and have a more peaceful end. It really is something the family needs to decides depending on the staff input. no easy answers here but at least be sure the UTI is treated before making any other decisions. It is not an easy time but the thing to concentrate on is your Aunt's comfort and peace

Two days after getting the "let's meet" call, I received another call letting me know that she had hit and pinched another resident and then grabbed the collar of a worker's shirt. They were sending her to the ER for a medical evaluation and then hoping that she'd be admitted to the Behavioral Health Unit. Well, when I got to the ER she was over the top (and I thought I'd seen the worst a few weeks ago). It took 4 people to hold her still to try to get a blood sample, which we didn't end up with because she blew out the vein by thrashing about. A 100 pound little old lady who has the strength of a WWE wrestler!! So they gave her Adavan (sp??) and told us it would take about 20 minutes for it to calm her enough to get the blood, cath her for a urine sample and do a CT scan. Well, it didn't touch anything! Two male nurses had to give her Heporin (sp?) and within 20 minutes she was sound asleep - and stayed that way until after lunch the next day. UTI, so they did IV antibiotics and then admitted her the the BHU. She's been there for 11 days now. We saw her this weekend and other than a slighter calmness due to sleeping pills at night and an anti-psychotic throughout the day there was no improvement. Worse in fact. Her feet were blue, she isn't walking, fights being in a wheelchair and actually toppled it over before we arrived, can't feed herself and won't do much more than drink an Ensure and swallow some peanut butter. They talked about her "heels breaking down". She's lost a good bit of weight and is now skin on bones.

Has anyone experienced this or something like it? It seems to me that we are spiraling quickly and I don't see them getting ahead of any of it. Sadly, I don't think she's going to be able to keep fighting much longer.

I'd probably have to count to 20, and I'd still freak out. You are doing fine, SHyziak.

I don't think I said I was, or eluded to, thinking she wouldn't get worse. She is dealing with a number of changes all piled on top of each other. Like I explained to the nurse and coordinator at the home today, it is really hard to draw any sort of conclusions at this point. If things were introduced slowly (or removed slowly) we might have a better idea of what is happening . . . is it just the Alz progressing, is it the change in environment, or routine, or any number of other factors.

Now they want to meet with us to discuss "mental health" issues. I don't understand why we have to meet with the doctor to discuss - to me it would be appropriate to evaluate and then discuss options. Isn't that why she is there - to get the medical care she needs? Why delay it? The coordinator had the nerve to talk to me about her quality of life, which is something I brought up and spoke to her about weeks ago. Are we going to tip toe around everything now?

I found out today that they haven't even bothered to test for a UTI! I had a bit of a moment with them. I spoke with two different people about it over a week ago and no one collected a sample or spoke to the doctor about getting preventative antibiotics. Seriously? Got a call back this afternoon that they were going to start the antibiotic tonight.

Not real happy about things right now, but don't want to fly off the handle. They do have to care for someone who requires a lot of people. Counting to 10, and waiting for them to set up this meeting.

You did the right thing in providing 24-hour care, in shifts so the caregivers are fresh and no one is trying to do this alone for 23 hours! Placing her in a care center was wise and kind.

Dementia gets worse over time. Sometimes it is a slow gradual decline, sometimes it happens in fits and starts, sometimes it happens quickly. But it does get worse. Always.

Your dear Aunt has gotten worse. That particular decline started while she was still with you, and accelerated in the care center. It might have accelerated BECAUSE of the change in environment, or it might have happened even faster if you'd tried to keep her home. There is no way to know. Please don't blame the "if only" game! You did what was smart and necessary.

I agree that her medications should be discussed. Maybe getting off some or on others would help the symptoms. Keep checking out any indications of infection or illness. (For my husband, ANY physical distress, from a slight cold to constipation to being over tired or over heated, made his dementia symptoms worse.) Advocate for her, and do everything you can to work toward a more peaceful time for her.

BUT I don't know why anyone should be surprised that a person with dementia has gotten worse. That is what dementia does. This is not to say "give up" but what you are attempting is to ameliorate the worst of the symptoms, not to cure her or get her well. Stopping or changing meds MAY help, but I doubt very much it is caused by drugs. Learning to interact with her in soothing ways MAY help, but he behavior is not caused by inappropriate interactions. This dear woman has dementia. Dementia gets worse. Always.

I sincerely hope that with your advocacy and participation ways can be found to counteract what is going on, and you can once again have pleasant visits with her.

Oh, we decided to move her to a care facility because she required 24/7 non-stop supervision. We work full time and my mother-in-law (her sister) is 87. It was too much for everyone. It was also too much stress/worry for my MIL who is a control freak :-) She doesn't know who we are, how to dress herself, toilet, wash, remember to eat or drink, nothing. She will feed herself but it has to be put in front of her, she will wash if you give her constant instructions, she will help dress herself but don't look away or pants will be on her head and don't give her both socks because they will be on her hands or both on one foot. Diaper and clothing changes several times a day. Docs couldn't do more with her meds because they couldn't monitor closely enough with her being at home.

We thought that at a care facility she'd have fresh help around the clock and that it was better for her to get the meds she needed with the monitoring necessary.

MIL is much better. Can sleep now, is able to enjoy running out to the store and watching a TV show uninterrupted. So we have a win on one side of the board, but we were expecting a win-win ending.

Wish me luck!

She's had a much lesser degree of a lot of this behavior at home up until about 3 months ago. It was a case of refocusing her up until July/August, but then everything shifted and it became harder and harder to get her to calm down and stop. She began talking non-stop (I swear she talked in her sleep all night long) and she had an imaginary friend she'd talk to. She'd tell her friend that she needed to use the bathroom sometimes so you'd have to listen carefully to her chatter. She has been on Namenda for some time now and the doc gave her an antianxiety med to help with some of her issues (didn't like to be alone for even 5 seconds and would get worked up if someone walked out of the room; that sort of thing). At the home they began a psych drug and a PRN anxiety med. I told them that she's shown changes in behavior before when she had a UTI so they tested her - they said no infection. I know change is extremely tough for her, but the violent thoughts and behavior are very disturbing.

I'll call the home and ask some of the questions you all suggested. THANK YOU!

Check in with her primary doctor and ALZ care team at the facility. Be prepared to go over your observations and concerns. The change in diet and routine could also be the start of a UTI which could exacerbate the behaviors, paranoia and hallucinations.
Do these seem to dissipate when you are visiting for a length of time? Does she get better when you are with her or accompanying her to an activity at the facility?

If this move is still new to her, she may be having an adjustment anxiety and is working herself up so that she can't get ahold of herself. She may need something prescribed in the short term to help her anxiety provided there are no underlying physical ailments.

Meet with her care team or social worker, director there and get their perspective. Ask if they have a support group you might join to share experiences and help you understand what could be happening.

This must be very hard and you are doing the right thing coming here to bounce it off others.

What caused your aunt to be placed in a nursing home. Was some of this behaviour becoming apparent before she went to the NH? I totally agree with checking on the medications. A major change like moving to a NH can bring on dramatic changes. She is like a ship at sea with no engine, there is nowhere to go so it's round and round in circles or wherever the wind takes her. She is angry but so would anyone be locked up with a group of other crazy old ladies. it is a strange environment nothing belongs to her. It is not her own bed. lots of times she dressed in clothes she does not recognize. she doen't know wher the bathroom is anymore and if she is taken there it is different and she may be handled roughly or male aides may be performing very personal tasks for her Does not like the food and is not hungry and it is served on stained melamine plates. The hot drinks are luke warm and taste of plastic. If you are permitted take in a plate of her favorite food and see if you can tempt her. Her behavious dictates that she has to stay in that environment because she would be too disruptive anywhere else. if she was not mentally ill before she entered the facility reasons have to be found for the change in her behaviour. if it is the drugs they can be changed stopped or increased. You will have to really advocate for her. If you have a friend or relative with medical training try and have them go with you to any meetings. you are too emotionally involved to be objective right now. Blessings.

Totally agree with Maggie. talk to the Social worker at the NH about your observations of the drastic change in your Aunt. Talk to the psychiatrist or doc or NP who is overseeing her meds. This kind of stuff can be CAUSED by meds. Also, has she been checked for a UTI?

Personally? I'd start by stopping all of her psychotropic medication. Some will need weaning. Is she taking Namenda, by any chance? I'd suspect THAT one in a heartbeat.

Has her medication changed since she was moved to the nursing home? If so, I'd be DOUBLY suspicious.

Be her advocate. She's miserable.