Has anyone experienced a rapid progression of dementia with their loved one?

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I’m the youngest of 4 siblings. Mom was diagnosed with dementia by PCP last year. Primary Care giver (step father) refused to take her to the doctor because when my mom was of sound mind and body, she refused to go. We were pleading for him to try and get her help because we noticed the decline in her health & memory. The last few months she has rapidly gotten worse. She seemed to be in stage 2-3 in the Spring, but she has now progressed to stage 6 in a matter of weeks to months. The rapid decline is staggering. My stepfather is burnt out and finally asked for help and is allowing us to help unlike before.


Tested for UTI which was negative. Mom has Grave’s Disease & on thyroid meds for it. Also has a growth on bottom of foot that is undiagnosed. She is incontinent and recently now has bowel issues. Initially, she was changing clothes and hiding the soiled ones. We managed to get her to wear depends but she takes them off in the night. She hides her soiled Depends throughout the house. She was taken to a neurologist on 8/14 and she couldn’t remember how many children she has, the fact she was previously married, lied about her health, cooking and self care. Doesn’t remember the names of her dogs. She doesn’t bathe or have any sense of self care. Her next appointment isn’t til 9/18 and without the diagnosis report we can’t get home care or ability to get her in an assisted facility. My sister got POA and I’m second in line if anything would happen to her. I know each case is unique and we prepared ourselves to the best of our ability to go through the stages with her but we were not prepared for this steep of a decline so quickly.

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Jmac, you might want to write down all of the behaviors that your mom is showing and send them to her doctor so that he/she gets to see the full picture before the next appointment, because many people with dementia are very good at lying and pretending that they are OK. But if the appointment is long enough they will start to fall apart...they can't sustain the facade for very long. Also has she been seen by a specialist? like a neurologist who specializes in dementia and other memory disorders? This would be a very good thing to do both for your mom and for your family. The rapidity of her decline could be caused from many things including a UTI or the type of dementia she has. As before, send any relevant information to the neurologist before the appt. I wish you the best of luck! Blessings, Lindaz.
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Ah, thanks Marcia I misread the initials as a diagnosis.

Jmac, were you at the appointment with the neurologist and are you able to get her health information or are you getting everything second hand through your father? Often the earliest signs of dementia are missed or dismissed by family so when diagnosed the person is already well beyond the early stages, but the very rapid progression of your mother's symptoms makes me wonder if she has something other than ALZ. It sounds as though she is already well beyond what can be handled well in assisted living and needs specialized memory care.
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Jmac615 Aug 19, 2018
Thank you for the reply. I was not at the appointment but my sister was, so everything isn’t second hand through my stepfather. She relayed the information to me from the appointment and said it was heartbreaking to watch her look to her and my stepfather to help answer the doctors questions. We suspect an underlying issue but the appointments are a month apart and fear it’s all too little too late
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Sorry, I don't know what PCP is - do you mean progressive supranuclear palsy (psp)?
Staging is all about Alzheimer's and even then can't be relied on as more than a general guide so you would be better off to get your info from sources specific to her diagnosis. How confident are you and her doctors that they have the right one? This incredibly rapid decline must be very heartbreaking for everyone, I'm so sorry ((hugs)).
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Marcia7321 Aug 18, 2018
Primary care physician.
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Our LO is following a similar decline. She was diagnosed August, 2016.
She went from forgetful but still driving to non verbal and a fall risk in two years. The first year was what I would consider to be a fast decline but this year has been much worse. I don't know how much longer she'll be able to stay at home.
Do you mean that you can't get home care that is paid for by insurance? It might be a good idea to get some caregivers in even if your stepfather has to pay out of pocket for it for a while. Look into some kind of day program for your mom. We found they were less expensive than home health providers for the daytime hours.
We hired an Aging Life Care Specialist. (aginglifecare.org). She has been a big help. The initial consultation was free and we pay her by the hour. Your family might want to find an Elder Care lawyer and talk about how to arrange the accounts to make sure your stepfather isn't impoverished by your mom's care. She also shouldn't be the beneficiary of any IRAs or life insurance policies anymore.
I'm sorry this is happening to your family. It's hard.
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Jmac615 Aug 19, 2018
Thank you Marcia. I’m so sorry about your LO. It’s so difficult. Everybody that is going through this is staying strong the best we all can. And thank you for all the information, it’s a huge help.
As far as home care, yes, we’re trying to get through insurance b/c of financial strains but we will definitely look into how much it costs. Power of attorney has been transferred and my sister has been in touch with an Elder Lawyer. I believe she’s doing more than I know. I’m not always informed of decisions and outreach. And thank you for the info about the specialist, I will let everyone know and look into that further. I really appreciate everyone taking their time to respond to me, you all have really helped. Thanks again.
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