We got in to see a Neuro- last week for my 75 year old mom. He ordered a batch of blood work- I presume in regard to making sure that her memory issues are not simple reason issues. Also we need to get an EEG- that will probably be in a few weeks.
The online chart, doctor notes, he has noted Alzheimer's.
Will an EEG give him a clearer picture if this is the case?
My mom had a fall in Nov- broke sacrum, sacroplasty, rehab, then UTI-hospital, back to rehab but zero progress in getting her to get herself out of bed or put her feet on the ground. During this time- after procedure to about mid Jan my mom would eat only bites of food at meal time- she lost 40lbs. Remeron has helped shift her appetite and is eating better now. She is max assist. She is in the Skilled Nursing at this same rehab facility. Working on Medicaid.
She is more 'with it' during the 8-3 time frame- after 3 the confusion is higher, sometimes very emotional, sometimes not. At 35 she had a stroke- 2 weeks after my youngest brother was born, her left side was paralyzed but she recovered- we are back to having left side weaknesses and issues. The 2nd hospital stint we had bone scan done and shows her left shoulder (a previous fall and break) has degenerate bone disease, as well as her left ankle. The left knee is a replacement and also giving her random pains! If she's in the wheelchair for more than a few hours then the left side rib cage, chest will start to hurt too. She is having trouble discerning between farting and pooping (sorry). In a diaper but will forget and think she is wearing the pad she normally did to keep from wetting her pants. Prior to my mom fall she was fully functional- although the lookback I can pin point lots of put things away and not be able to retrace steps, fender benders that the story she told was not what matched the eye witnesses, being unable to plan a meal and have the timing come out correctly, etc.
I see in Alzheimer's that the lack of mobility is considered a late stage of issue.
Anyone else get sort of blindsided by this possible diagnosis/outcome?
So just recapping a bit and reminding myself … The mobility problems can be caused by the dementia and the mobility problems (fall/fractures, etc) can also increase the dementia. The chicken and the egg.
“I just try to remember that I am here helping her on her journey and handle the things I have control over- dr appt's, special snacks, clothing, etc for comfort.”
The trick is knowing just which symptoms to pursue and which to accept/manage.
It’s a fine balance. So good that you are getting clear on that.
You might find “Being Mortal, Medicine and What Matters in the End” by Atul Gawande helpful.
1. She had no breaks in December. Bones in frail elders can break spontaneously. It's been 2 months. Ask PT to ascertain that s/he is sure there is no new injury.
2. Checking out during previous exercise regimen-- possible absence seizures? Glad the neuro is checking that.
3. I would call neurologist and ask:
Is mom's dementia the reason for her lack of mobility--is it that advanced?
Can mom's delusion that she is mobile part of her dementia?
Do you see any psych meds giving any benefit at this point in time, especially for the sundowning?
From what you've written, mom indeed has dementia and she is entertaining a delusion that she is currently mobile. Look up Teepa Snow videos on the web for the best way to communicate.
The thing is, you cannot reason with a dementa patient.
My mom had te delusion that she was managing her own meds in rehab, right after a nurse still sittting there, had just given them to her. Shocked, I asked her what she meant. She pointed to her water pitcher and gave me a "significant" look.
Geez, where was my mom? This wasn't her.
I cried all the lpng drive home that day.
You need to find out from the neuro if this is the new normal, and then adjust your expectations to fit that reality.
"I'll look into that" and "we'll see what the doctor says" were my go to stalls.
If you mom is "refusing" to bear weight, I would insist on a thorough exam of her hips, pelvis, ankles, etc.
We had a poster a few years back, DManBro, I think was his name. Very similar story to your mom. Everyone thought that it was the dementia that was causing her not to want to get out of bed.
She had several fractured vertebrae. Only his insistence on a complete exam brought that to light.
I feel that the only way, at this point, to regain any mobility- is talk to PT about getting back in and focusing in on helping her learn how to get up out of bed and into the wheel chair.
Sometimes when she is insisting to me that she walked around the room (after 3pm) then I will just ask her to show me how she did it. She will show me that she can move her legs off the side of the bed but when it comes to getting her torso in upright position, she cannot do it. Prior to this fall I had her in with a trainer because her gait and balance were never correct after her numberous falls, breaks, replacements. The trainer also told me that she would have moments where she was "checked out" in the middle of the exercise.
If we can focus on relearning getting out of bed, then at least she could have a chance to be wheelchair mobile and try to start using the toilet again.. Its painful to be with my mom and hear her tell me things like she wants to see a counselor with her boyfriend (whom I am ready to tell we are done dealing with). When I pressed her as to how she would do that- she told me he could drive them over to the session- that she can get in and out of a car and use a walker. Is it wrong for me to redirect her into seeing that she isn't capable of doing that? Should I just tell her honestly?
She is recalling things during the 8-3 time more consistenly but I don't see much improvements.
Pain, discomfort, fear?
i ask because my mom was " resisting" PT-- not like her.
The PT ordered a portable xray. Mom had a broken hip. She'd had a fall, but the xray taken at the hospital showed no break (and yes, we looked at it again).
Apparently hips sometimes break spontaneously in older people.
Also, has the surgeon looked at what might be going on with her back?
The bone scan showed that the back sacroplasty was completed..
Fear seems to be a big factor, along with the left shoulder/side weakness osteorthritis.
Just seems to me that it is both real physical issue and then mental issues.
The equipment they use to help people stand- she seemed quite concerned about being back in it.
This is NOT how she has been for any other PT she's done over the years.
I suggested that we work on just learning to transfer from bed to wheelchair. The Neuro did say in front of us both that she should be utilizing a wheelchair.
She's definitely having some issues, isn't she? Poor her and you. My mom is too and I know how hard it is.
Will she not do any PT or is it just not working?
For my mom's recent dementia diagnosis, blood work was one of the first things done. Mostly to look at B12 and thyroid levels. She has regular blood work for liver/kidney function due to meds for RA that can cause damage. They also looked at all her meds and reduced/eliminated a few that were prime suspects for causing confusion. For us, none of these things helped at all. But were definitely worth trying!!
In fact we got our medicare a & b change- so we can get more PT time and when I mentioned it to her she became anxious about being 'forced' to try to stand/walk... she said not to push her. I'm doing my best to honor her wishes. I told her we could talk to them about focusing on bed to wheelchair to bathroom PT.
In the end the POA needs to sit with the neuro psyc and have interpreted what CAN be known and what CANNOT. There are many reasons for balance problems and my brother had incidental finding of an old, calcified, non-malignant tumor in the brain that was likely responsible for his decades of poor balance. Despite that he had also, by symptoms, a diagnosis of probably early Lewy's Body Dementia. He had, when I took over his home for selling, an evidence of a sudden change in handwriting, almost overnight, that made me think that he had also probably sustained a stroke of some kind during a time I noted a difference in his phone calls.
So it is all a nebulous maze and each patient a mystery, as individual as their own fingerprints.
I wish you good luck.
And yes, we all end up just reeling with confusion in all of this.
Do know that many tests are ruling OUT things, rather than diagnosing or ruling "in".
Later when I had reason to take her to an ER, it came up on her chart that she had Alzheimer’s. I knew what the neurologist had reported and it wasn’t Alzheimer’s and his testing had included an MRI.
However, her primary had put her on Aricept and the neurologist wanted her to stay on them and subsequently added Namenda. I thought perhaps because of the meds listed, Alzheimer’s was assumed by the ER.
About the stage your mother is in and mobility issues. There are charts that will help guide you.
Your mother has reasons to have mobility issues that perhaps have less to do with Alzheimer’s and more to do with her bone disease.
Again I’ll use DH aunt as an example. She had gait issues. Walked straddle legged, needed a cane. Then she progressed to a walker, now is bed fast. No bone disease. This over about 10 years. Her mobility issues seem more in keeping with Alzheimer’s than your moms, to me. There are many variables in types of dementia.
As you noted, your mom does have an overall decline and often a diagnosis is arrived at by an elimination of other suspected maladies. I hope you are able to discuss in more detail the doctors findings and recommendations after all the results are in.
I'm going to just take a guess that it won't really matter if there is an assigned diagnosis. Physical and mental issues are at play. My mom does say to us kids that she thinks something is neurologically wrong and feel out of sorts with her body. There are lots of challenges to try and overcome for sure.
I just try to remember that I am here helping her on her journey and handle the things I have control over- dr appt's, special snacks, clothing, etc for comfort.
Be firm on this subject. My Mom went to rehab for 18 days and was in a WC most of the time because she was a fall risk. Mom had fractured a disc a couple of years earlier. It had been repaired and healed. The Doctor told her she may suffer from pain/discomfort every so often. I would ask for a cushion and receive it. Next day gone. At the care meeting I asked why tge cushion disappeared. The therapist said she determines if a patient gets a cushion. I told her Mom suffers from lower back pain and needs a cushion.
EEGs are usually done right in the doctor's office. It measures brain waves. I think that an MRI gives a better diagnosis.
Thank you for the support!
You say that prior to her fall, she was “fully” functional. Maybe “fully” or maybe really “super” functional, for someone who had suffered a significant health threat at 35. My mother was a self sufficient, self motivated powerhouse for years, but ultimately there was “the straw that broke the camel’s back”, the one assault to her well being that she couldn’t overcome…..
And now, so many health issues, and physical issues, and psychological and sensory issues (hearing) that impact on cognitive integrity. They’re there, and you’ve annotated them.
When we really love and honor and respect the Loved Ones in our lives who have overcome trials and troubles and “bounced back” we can sometimes overlook troubling signs, TO THE BENEFIT OF ALL CONCERNED, and in our case we were able to do so through a number of the situations your mom has lived through, until she shattered her hip in a household fall.
”Diagnosis” is only important as an aid to providing the kind of care that will serve the needs of the person being “diagnosed”. You know that your mom now has multiple care needs, and her condition appears to be progressing.
I can honestly say that when my mother awakened from the anesthesia following her hip repair, and immediately revealed through her speech and actions that she had dementia, I felt “blindsided”, because she’d NEVER failed to push through any of what had happened to her before.
A social worker came to her room a week and a half after her surgery and said that she’d have to leave THAT afternoon. She entered a fine rehab center THAT DAY, and although I tried to care for her in my home for about 9 months post-rehab, she ultimately returned to the SNF of that rehab, and lived there for 5 1/2 years until passing at 95.
I feel for you, your mom, and your family. Many of us here have been where you are.
Did s/he order any imaging?
The after 3pm difficulties you are seeing--that's called sundowning. Read up on it.
I was able to bring him a disc from her hospital stay- a CT from Dec (UTI), March of 2021- fell in the street outside her house on her face- required stitches and one from 2019. Not sure how great they all were. Also sometime in 2012 we believe she had a TIA episode- while she was at work (which is the same hospital that has been treating her as mentioned here) she did not know who she was, or where and was speaking in tongues. Of course at that time- nothing showed up as stroke so they presumed it as TIA. This Neurologist also used to consult at the hospital I am mentioning and my mother recognized his face. She worked in the Psych unit for many years. She told me in detail what an EEG is and how it works. And she couldn't recall the words told to her for the memory test.
I will read up on the sundowning. Thanks!