Body progressing faster than the mind

Melissity

Hi all. I'm mostly here for answers to my suspicions. To be very clear, we have no diagnosis for our LO (my grandmother), and it took a hallucinating event and some recent loss of function for me to look back and put the clues together. 

• My grandmother is about 84, and her mother died of Alzheimer's 
• For the last 10-15 years she's definitely been much more forgetful
• I first became very suspicious earlier this year when she was hospitalized after she passed out. She was incredibly angry about being in the hospital, couldn't remember how she got there, was very agitated, and seriously thought the nurses were locking me out of the hospital and "hiding me" from her. She refused to stay and left AMA. 
• During that event we also learned that she hadn't been taking her medication (mostly because she has had swallowing problems for years.)
• Also during the hospitalization, she asked me how my dog was (I don't have one), and made some comment that made it sound like my dad was my "sweetheart" (she must have though I was my mom??)
• Stopped routinely bathing for at least the last year. We assumed she was just worried about falling. 
• She has had increased falls over the last year, and incontinence in the last 2 months. 
• 3 weeks ago, she lost the ability to use her legs and can barely sit up on her own. She has been bed bound and requires around the clock care, and refuses to go to the hospital. 
• 2 nights ago, my uncle was up with her half the night trying to convince her that she was not in the hospital, she was at home. But she kept taking things off her bedside table and asking for a bag to put them in. At one point she even told my uncle to get the cat so she didn't get in trouble for going into the surgery room. 

So all these clues together made me realize that we may be dealing with something much bigger than general declining health. To make matters worse, she has no primary care doctor, and it has been an uphill battle just to get a virtual appointment schedule to hopefully lead to a home health evaluation. 

But my biggest question is: Why does her mind seems to be mid-stage, but her body seems to be  late-stage? This doesn't seem congruent from what I've read. Either that or her mind is going way faster than we're realizing? I'm just looking for some insight from someone who has been through this. Thank you! 

Stuck in the middle

She quite likely has more than one thing wrong with her if she can't walk and is disoriented.  If she were my GM, I would have her transported to hospital for a psych and physical evaluation.  Whether she likes it or not.

JuJu978

Hi. Sorry for your hardships. I’ve experienced the same with my 74 yo mom. Her body declined faster than her mind. She has a very unsteady gait with frequent falls. She requires the use of a wheelchair for distance and walker with a person assisting in the house. She’s too weak to sit up or reposition in bed. She requires caregivers for everything. The majority of these symptoms appeared before the memory loss. We don’t know if she has another diagnosis causing this but so far all tests are normal. Does Alzheimer’s cause such profound leg weakness, gait abnormality, fatigue, and falls?

BassetHoundAnn

JuJu978 wrote:

Hi. Sorry for your hardships. I’ve experienced the same with my 74 yo mom. Her body declined faster than her mind. She has a very unsteady gait with frequent falls. She requires the use of a wheelchair for distance and walker with a person assisting in the house. She’s too weak to sit up or reposition in bed. She requires caregivers for everything. The majority of these symptoms appeared before the memory loss. We don’t know if she has another diagnosis causing this but so far all tests are normal. Does Alzheimer’s cause such profound leg weakness, gait abnormality, fatigue, and falls?

JuJu, Your mom sounds a lot like my mom. She's recently suddenly developed everything you describe--leg weakness, gait abnormality, falls, she's often too weak to sit up or reposition in bed. She's currently in the hospital and has undergone her second complete workup in the last month but nothing beyond dementia/Alz has been found. I think that cognitively she's at Stage 6, perhaps heading toward 7. It's baffling and heartbreaking. 

harshedbuzz

Melissity wrote:

Hi all. I'm mostly here for answers to my suspicions. To be very clear, we have no diagnosis for our LO (my grandmother), and it took a hallucinating event and some recent loss of function for me to look back and put the clues together. 

She needs to be seen asap. I would get her in with a PCP as soon as you can- in-person or virtually. Basic bloodwork could be ordered and perhaps a CT scan to rule out lesions. Depending on insurance, you could self-refer to a Memory Clinic for an evaluation.  Barring that, BHA's suggestion to have her transported to the hospital nearest you that has a geriatric psychiatry unit would be doable. It's not ideal, but in the face of my mom's years of denial, I was able to get dad diagnosed during a hospitalization for a psychotic episode. 

• My grandmother is about 84, and her mother died of Alzheimer's 
• For the last 10-15 years she's definitely been much more forgetful
  
  Alzheimer's, the most common dementia, can progress through stages over a course of 10-15 years. Sometimes 20. If you noticed "forgetfulness" 15 years ago, she would be well into the disease progression if she has Alzheimer's. 
  
  
• I first became very suspicious earlier this year when she was hospitalized after she passed out. She was incredibly angry about being in the hospital, couldn't remember how she got there, was very agitated, and seriously thought the nurses were locking me out of the hospital and "hiding me" from her. She refused to stay and left AMA. 
• During that event we also learned that she hadn't been taking her medication (mostly because she has had swallowing problems for years.)
  
  This is a concern. Missing certain meds for CAD or HBP could put her at risk of vascular dementia. Missing something like Synthroid or B12 could also result in impaired cognition. 
  
  
  
• Also during the hospitalization, she asked me how my dog was (I don't have one), and made some comment that made it sound like my dad was my "sweetheart" (she must have though I was my mom??)
• Stopped routinely bathing for at least the last year. We assumed she was just worried about falling. 
• She has had increased falls over the last year, and incontinence in the last 2 months. 
• 3 weeks ago, she lost the ability to use her legs and can barely sit up on her own. She has been bed bound and requires around the clock care, and refuses to go to the hospital. 
• 2 nights ago, my uncle was up with her half the night trying to convince her that she was not in the hospital, she was at home. But she kept taking things off her bedside table and asking for a bag to put them in. At one point she even told my uncle to get the cat so she didn't get in trouble for going into the surgery room. 
  
  The incontinence, sleep disturbance, refusal to bathe and falls are very suggestive of a later stage of disease progression. Based on your description, I would guess stage 6 on the Tam Cummings Stages or the FAST scale.

So all these clues together made me realize that we may be dealing with something much bigger than general declining health. To make matters worse, she has no primary care doctor, and it has been an uphill battle just to get a virtual appointment schedule to hopefully lead to a home health evaluation. 

But my biggest question is: Why does her mind seems to be mid-stage, but her body seems to be  late-stage?

Why do you assume she's midstage? This all sounds stage 6 (of 7) to me.

This doesn't seem congruent from what I've read.

Most people lose function in a similar order that jives with the Stages of Dementia or FAST. But some don't, either because of a co-occurring condition, cognitive reserve, or for some reason we don't understand. My dad, for instance, was quite vocal right up until he died from complications of aspiration pneumonia. His speech lulled other family members into thinking he wasn't as far along as he was, but combined with significant weight loss and physical changes to his body and affect, I had a sense he wasn't long for this world. The night after our last visit I left the ringer of my phone on "just in case" and got the call. My mom and uncle were completely blindsided. 

Either that or her mind is going way faster than we're realizing? I'm just looking for some insight from someone who has been through this. Thank you! 

I think it's critical to have her seen. Ideally, that person can give you a sense of what is going on and a prognosis for the days ahead. 

HB

Melissity

Due to another hallucination event I called an ambulance and they were able to override her refusal due to being disoriented. Dementia was confirmed, along with MRI showing evidence of past and recent strokes. Doctor’s prognosis was grim: 24/7 care, will most likely not walk again, definitely declining, and will expect end of life care in the near future. For now, she will be referred to palliative care and social work is arranging for a hospital bed to be delivered. Once she comes home we will be able to get more help in the house. All we needed was eyes on her, and it was incredibly difficult without her cooperation and being bed bound. My heart is heavy, but we are determined to allow her to live out her days in her own home.