I'm scared - the dementia seems to have progressed so fast... from what I read online she is in or close to end stage dementia, what's left?

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She was fine except for the arthritis up to 6 months ago. Dr first mentioned Dementia 4 months ago - does it always progress this fast. Taking care of her is breaking my heart - sometimes I still see my Mom in there. What must it be like for her as she struggles to communicate...

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Three things can cause dementia symptoms to appear much worse:
1. Reaction to drugs. Is Mother on any medications? Medications can be a godsend for improving quality of life and reducing symptoms. But getting the right combination of drugs takes a lot of effort and trial. Sometimes along the way a medication makes matters worse. Discussing all of Mother's drugs with her doctor is an important step to take. If the horrible symptoms are a drug reaction, solving that problem will result in significant improvement.
2. A physical disease, illness, injury, etc. Patti4Mom has already mentioned one of the most notorious causes of dementia-like symtoms -- urinary tract infection. Any illness, including colds, flu, contstipation, headaches, pneumonia, a swelling due to a fall, just about anything happening in the body, can make the dementia symptoms far worse. If this is the cause of a big decline, it will clear up when the illness is gone. I don't mean the patient will no longer have dementia -- but will return to or close to the baseline before the illness.
3. The disease has simply progressed. It is what dementia does. So far, there is no way to stop this from happening.

Why is your mother so much worse in only 4 months? It may be the progression of the disease. The other two possible causes are worth checking into very carefully.
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Thanks all - we go to a new doctor tomorrow, maybe he can tell me what kind of dementia she has as the other doctor never did - and foolish me I never asked. She had a UTI about 2 months ago and got that cleared up. Aricept didn't work too well for her (really bad diarrhea at the 10 mg dose) so they took her off. Maybe the new doctor can prescribe something else. Last night out of the blue she told me that she gets 'lost'. She just keeps breaking my heart - but I am ready to say goodbye. May be hard on me, but I don't want her to feel lost anymore. Who knows - maybe things will turn, just have to find that place of peace. Talking it out does help
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This could have been me asking the same question at the beginning of the year. My mom declined so rapidly, both cognitively and physically, I thought she was going to die within 6 months. It was so horrible and frustrating because we could not figure out what was happening. All her tests came back showing nothing of note so the first neurologist we took her to would not give a diagnosis. The second neurologist spent quite a bit of time with my mom on a day that was particularly bad, and diagnosed her with Alzheimer's and Parkinson's. This didn't seem right to us because just 6 weeks prior, she had been completing all the puzzles in the newspaper. She would say things similar to your mom at times about feeling lost or recognizing she wasn't herself. Because she was not sleeping and would spend the entire night wandering around the house, she was prescribed a low dose of Seroquel along with Trazadone to take before bed. This did help her sleep and she was able to function a little better during the day. I am fortunate enough to live close by and am retired so I was able to be at her house every day. We would always work on the puzzles in the newspaper (although initially she might just sit and watch me), we went for walks, would go out to lunch or try to bake something. She was also in physical therapy twice a week which she didn't enjoy but I feel it was good for her. Gradually, she started to become more like herself and when she went by for a revisit to the neurologist, the doctor was amazed. She actually declared her free of dementia or Parkinson's. She couldn't be sure of the cause but thought it might have been due to a number of physical and emotional stresses that my mom had the previous year. Since Trazadone is an antidepressant, there is also a possibility she had gone into a depression and it acted like dementia. The best advice I can give you is to just be there for your mom. Now that my mom is herself again, she continually says that I "brought her back". I don't know about that but while we were going through this, there were days I didn't even think she knew I was there. Apparently she did though and just couldn't express it. I wish you and your mom the best. Keep us posted.
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Where is my mom, (2) of my MOM's doctors told us to "hope for the best
but prepare for the worst". It is very hard to hear those words but it is our
wake up call. I know you love your mother and sometimes we have to
start letting go. Its hard but in time letting go might be the right thing to do.
Be strong and get some well deserved needed rest for yourself.
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I don't know if this will help you out, but sometimes when older people get a Urinary Tract Infection their memory goes real quick. I have to have my Mom checked almost every doctor visit. Just FYI. I am sorry you are going through this. Sometimes it does go quickly. But, it would not hurt to have her checked for the UTI. I hope it is something like that and not a quick progression. If they get treated, they do come back more. My Mom can ask me the same question 3 times in 5 minutes if she has one.
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My husband developed Lewy Body Dementia in June 2003. We have experienced about seven-plus years of mild-early stage, about a year of advance-stage symptoms, and a half a year or so of moderate-stage. The advanced stage came first!

Our behavioral neurologist is an internationally-respected researcher. A few years ago he shared a theory about that dreadful first year. Apparently in SOME LBD patients, the autoimmune system tries to fight off the invasion of foregin bodies (the "Lewy" bodies that are a protein that doesn't belong in the brain) and in doing so cause an inflamation in the brain. The symptoms we were seeing were not only the dementia but the inflamation as well. When the inflamation gradually went down, and the treatment plan for the dementia symptoms was in place, what we saw was more typical of early-stage dementia, and that has continued until recently.

I don't mean to suggest that this is common, or to hold out false hope that all severe first year symptoms might be inflamation and can improve dramatically. But that is one of many things possible.

In my local support group there is one other caregiver whose husband had a first-year experience very similar to our. There was also a caregiver whose loved one died within less than two years of being diagnosed. The range of possibilities is staggering.

I hope that your mother's doctor is experienced in treating demenia. Work closely with him or her!
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The fact that your mom can say that she is lost, is a sign (at least to me) that she is still thinking and communicating. My mother never acknowledged she was declining or even accepted that she had dementia...even in the very beginning, which could have been way before the official diagnosis) She was officially diagnosed with dementia 9-10 years ago...no particular type of dementia has ever been mentioned on her health records. The doctor just diagnoses from her symptoms and he did a ct scan early on that showed atrophy/shrinking of the brain. She has gradually declined with the biggest decline last August when her incontinence showed up and her abilities to dress herself, difficulty with mobility, in bed all the time, sleeping most of the time, hallucinations and delusions, agitation, change in eating habits. I adjusted her diet, got her a hospital bed and she has anxiety meds. It has been a whole year in this stage. Over the year her mobility has changed - she wants to be in bed and has to be forced to get up to walk with help of me and her walker to the toilet, eating table, chair, wheel chair etc. Almost never makes an effort to get out of bed herself....once a month she might surprise me and somehow get from her bed to her chair. So you see, your mom may not be going anywhere just yet. You never know how long they will stay in the different stages. Be prepared to be flexible and stay in touch with all of use here on AgingCare.
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Please get Homocysteine Levels checked, my mom had an onset so fast that mimicked alzhiemers/dementia that completely made her confused and mixed up...it was crazy..(one day she was fine and the next day there were definate problems).Her homocysteine levels were off the charts and she required high levels of B supplements that were prescribed called Cerefolin. After 6 months to a year her homocysteine levels went back to normal and so did her brain....unfortunately there were many issues with her and her chemistry...severe depression, severe aniexty and panic disorder etc. which 4 years later on this journey has now turned into white matter ischemic disease..which is basically leision or leisions in the brain...There are no medications for dementia, they give meds to control behaviors...but some behaviors need to be kept busy and distracted and redirected, for example: pets are very good tools to help distract, folding towels, folding paper...anything that would distract the brain from the negative behavior. Medications that are given seem to make the person worst, then helping...find natural supplements.
My mom is still on B supplements as well as lots of others to help blood flow to the brain. Good Luck and take one day at a time, because everyday and or week presents different problems for them sometimes good, sometimes bad....its always changing.
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Mom was diagnosed last Friday with Alzheimers. Doctor was going to put her on the Exelon patch, but after some time with her said she is in moderate to Severe stage Alzheimers and she started on Saturday with Memantine - working up her dosages (5mg wk 1 - 20 mg wk 5). She sleeps alot, but we are able to get her out of bed with some assistance. The incontinence has been going on for about 6 months now, some nights are worse than others. I wake up with her anywhere from 1 to 3 times to get her to the bathroom, sometimes I need to change - sometimes not. No rhyme or reason. I'm just happy that this week when I put her to bed and told her I loved her, she told me she loved me too - special week. Guess one of the things I've gotten off of this site - is you just never know and treasure whatever good times or moments you have. I will definitely keep all of the responses in mind during the twists and turns of her treatment and thank you all for being there...
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Does she ask to go to the bathroom? If not, you should just get some sleep for yourself and change her in the morning. I used to get up with my mom a few times a night and listen to every word she was saying but, it was causing me so much stress and sleep deprivation, that I wasn't going to be able to keep up with the care giving. I realize that you will have to go through your own period of adjustment at your own pace, but as time goes on, you will not be able to function on the interrupted sleep pattern. Now that I know that my mom cannot get out of bed, I am not worried about her falling, therefore, just like a child who wants to wake up in the night and have attention, you have to ignore a good majority of the night time requests, in a sense training them that night time is for sleep and daytime is for activity. It took some time for me to not feel guilty, but I am a better person and care giver when I have a good night's sleep. I hope I don't sound too uncaring, but in my and your situation, we have to take care ourselves too. It was actually the hospice nurse (we not longer have hospice) who told me to not "spoil" her and to take care of myself so I wouldn't get sick from stress. I got those disposable bed pads to put under her at night in case the depends leak...believe it or not, she is sometimes dry in the morning! I do go in and get her to the toilet one last time each night at around 11:00 p.m., I also give her a banana and 1/2 of an Ensure drink to make her stomach happy. I do not return until 8 or 9 in the morning. So far so good! I keep the baby monitor on my night stand, real low, so I could hear a loud noise, but not her murmurings. My mom has been in this declined state for one year now and she could go on another few years as far as anyone knows...so that being said, I have to keep myself rested and strong to face what the future brings...that means SLEEP for me! As long as I feed her and give her attention during the day, I do not feel bad that I don't go running to her in the night. Hugs and blessings to you while you go through this with your mom.
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