My Mom has Early Onset Alzheimer's. She was diagnosed at about 50 years old, she is now 57. She still walks around very good, she paces non stop. What stage is this? - AgingCare.com

My Mom has Early Onset Alzheimer's. She was diagnosed at about 50 years old, she is now 57. She still walks around very good, she paces non stop. What stage is this?

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Mom does not know who we are since Jan 2017. She has lost over 100 pounds in the last year. Mom has to be fed she can't say she is hungry or thirsty. She doesn't talk with words more like sounds she repeats very fast. Mom wears the pull ups, she is taken onto the toilet about every 2-3 hours just to see if she can go. She can't tell us she had an accident. Mom has had about 5 seizures so she is on a liquid seizure medication and she has a blood preassure medication she takes. Mom cries a lot. She will stay up for days at a time with no sleep. I heard about the stages but I can not tell what stage my mom is in because she doesn't just sit there or lay in bed she paces non stop, except to sit when she is put on the potty. My Dad has tried to place mom in a home they called the next morning and said she is to much of a distraction to the other patients and upsets them because she walks into all there rooms she doesn't know who anyone is or what to do so she just walks and walks. So I guess my question would be what stage is my mom in and do others have family members in late stages that are still walking? C She loses more and more weight every time I see her. This is the worse disease that I have ever seen and watched some one purely suffer through it hurts everyone around them and I watched it destroy our family ripped us apart. My mom has been suffering hrough this disease for the last 7 years it is so sad and devastating.

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My Mom had it for many years until she started getting UTI's/kidney infections which made her crazy mentally until well. The last two months she was in a nursing home because she wandered and got violent with me. She could walk up until that time. Nursing home by state law requires them to be in a wheel chair. She went down hill. Her eyes were glued over. The UTI's can advance the Dementia forward 2 years and be careful of benedryl and such because they can advance it as well. It is a roller coaster ride. Unfortunately, nursing homes are not tolerating any patient they have to use "extra" time to babysit certain patient so they kick them out. They don't make as much money. That is the trend now. I had to stay up there with my mom about 12 hours a day in and out. If I had not, she would not have eaten or drank anything. She forgot she was suppose to. I suppose I was her feeding tube in the end.
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A person needs restorative sleep. Perhaps a psychiatrist can give her an RX of low dose Diazepam, but check her PCP first.
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You are right, MrsH105. Dementia is a terribly cruel disease, for the person who has it and all their loved one. For some reason early-onset dementia seems even extra cruel. This should not happen to people still in their prime!!

There are definitely places that can care for someone with your mom's symptoms.The first one Dad found wasn't the right one. But there are some out there. What does the doctor who is following her dementia suggest?

Seeing a geriatric psychiatrist could possibly result in medications that would calm Mother and also suggestions about the level of care she needs.

It sounds like Mother needs too much assistance for an Assisted Living Facility. In my opinion, many families can care for their loved one at home through the ALF level of care. Once a person has care needs beyond the assisted living stage, it is usually not safe and not adequate to live in a private home with one main caregiver. I hope your family can find a suitable place for you mother.
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First let me say...I dislike the "stages" categories. The reason for this is every brain is effected differently and each person will do things (or not do things) in their own way. My Husband became non verbal very early but there were many things that he could do that surprised the heck out of caregivers, nurses and CNA's. So while in some aspects he may have been in stage 7 in others he was in stage 4 or 5.
So use the "stages" as a guide but do not base your Mom on predetermined "stages"

It sounds like you need to address the agitation. Pacing, walking seems to be common, I noticed it when I would drop off my husband for Adult Day Care.
I find it odd that a facility would have her leave. They can find a way to redirect. It may require that she find an anti anxiety medication that will work for her and the correct dose.
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You have my sympathy. My mother stopped walking in January 2017 basically after a week-long stay in the hospital for pneumonia, and that's when I had her put in a large awful memory care place, then transferred to a smaller nursing home, where there are several others wheelchair bound like her. I'm frankly relieved she's not walking around, and she apparently behaves herself most of the time. She can't propel the wheelchair and is incontinent at this point. She can feed herself with help, and I go daily and feed her dinner. She was beginning to fall in my home, was always combative and wouldn't let me help her up, etc. She was diagnosed in 2008.
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It sounds as if she is in a lot of mental distress. Has she been evaluated by a geriatric psychiatrist? I'd have that done and explore medications to help with her mental anguish. Before my LO (diagnosed with Vascular Dementia at age 62) went on medications she cried a lot too. She was very anxious and worried a lot. A daily med for anxiety and depression really helped that a lot. I'd treat mental pain, just as seriously as physical pain.
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MrsH105 I’m so sorry the emotional roller coaster you and your family has to experience including your mom. There are medications and I’m sure you are aware. Freqflyer has a great link for the stages. I know from experience that my loved one with this disease have varying parts of each stage.
You say it’s tearing your family apart. That’s so hard and for peace of mind, look into a 6 resident board and care that cares for Alzheimer’s/ dementia residents. Your mom will get much more attention and hands on care that she needs and requires than an assisted living memory care facility. This, too, is from experience. Look at the state licensing and complaints before so you can really know if it’s a loving facility.
Hopefully from searching this site you can get some good advice.
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I am so sorry for your mother's suffering and for your family to have to walk with her through this devastating disease. One thing the others here did not comment on is the use of anti anxiety medications. My mother was also a walker/ pacer and so anxious and upset all the time until the doctor put her on a combination of drugs to deal with her anxiety. She is much better most of the time. We did this through a geriatric psychiatrist. Perhaps if you can get her on the right meds she will calm down and then a nursing home will accept her.
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The younger Alzheimer's strikes a person, the more aggressive it is. I hate to sound distressful, but you should discuss things like resolving code status (do you want everything done or Do Not Resuscitate? Feeding tubes? etc). You should also get a pre-arranged funeral. Eventually she will forget how to eat and will no longer swallow food. Family needs to decide whether or not to put a feeding tube in or not. If you don't she will die of dehydration. Now if she still has her mind--ask her what she wants. I also hope you all established a Power of Attorney. Because once she is unable to make up her own mind it will be a court order to get a guardian.
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Yes. This is a cruel illness both for the person experiencing it directly and for their loved ones, especially their care givers. What I have seen after hanging out at the memory care facility / nursing home that she is in, is that the illness affects everyone differently, thus the medical staff has to also treat each case individually.

My Mother is 96 now and has been diagnosed with late-medium to advanced Alzheimer. She was first placed on the floor with other patients who were also at similar stages. To the surprise of the nursing staff, she was still walking around although she has almost no recall of short term memories. She talked to staff and was sociable while the rest of the floor is in bed or not able to express themselves. It broke my heart to see my mom so isolated with no one to talk to and surrounded by what I am sure she could see was going to be her future. She was there for 7 months.

Because of her uniqueness, in the last 2 months, I have been working hard to get her moved to the regular nursing home (it is a very large facility with many levels of care) where there are residents with physical, as well as, mental issues - yet they are all walking about or on wheelchairs. I finally got her psychiatrist to re-evaluate her. Good move. We found that although she still is diagnosed with medium-late to advanced level of Alzheimer, she has now been allowed to be with people who can still engage in conversation and who do not mind someone who repeat themselves - yet is loving and has a smile on her face.

What I am trying to share is that you need to be mindful of her individual needs and try out different environments for her to see where she has more quality of life. The best way to go is finding a large facility with different levels of care so that you have the option of trying out where she will fit best. No place will ever be perfect. You just need to find the best alternative and that may take persistence and time on your part.

I found that the staff was at first very reticent to risk giving Mom more freedom out of fear of what 'could happen' - will she wonder off? Will she bother others? There came a time, where I truly had to stand my ground as the legally responsible person for my Mom, and say: "You cannot keep my mom isolated due to your untested fears." I followed that meeting with emails to the social workers asking them to 'help me help Mom' - after all, they are there to take care of the emotional side of the equation, making sure that there is the right quality of life for each resident.

It worked. Mom was very agitated and depressed when isolated. She has been in the new environment now and seems to be happier as there are people who she can talk to, she can seat outside on the porch to see the trees (she was in a secured floor before!), and can experience aliveness around her although she has no short term memory to boot! Yes, she still goes through confusion and sometimes she calls me not knowing where she is, but that happens any how as part of the illness. But now at least, she is not alone and sad.

Get your Mom to a larger facility where options of care are available and movement is possible.
All the best!
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