I need help(1)

Jenna_32

My mom is in her early 50s. She has struggled with alcoholism her whole life. She lives in a very small town in NW Iowa with her emotionally abusive husband. She refuses to leave. She is unemployed and lives on a very tight budget. Money is always a issue. There are also very few medical resources or ways to get help in NW Iowa. 

I live in Michigan. I talk to my mom a few times a week. The past few months everything has been different. When we talk she just repeats the same conversation over and over. She does not realize we already had the exact conversation we just keep having. Her short term memory is just gone. She texts me all the time, and she will text exactly what we already talked about on the phone, and then she will text it again, forgetting we already talked about it and she already sent that same text.

I sent Christmas packages to her, and told her over and over they were on the way and when she got them she was just confused because she didn't remember ordering anything. She could not remember I sent her anything.

 My siblings blame the alcoholism, but it is not the same. Her personality is changing, she gets upset over the smallest thing, she becomes obsessed with material objects, she whines... I don't know how to explain it but it is not her. She also likes to bring up things that happened in the past, 25-30 years in the past. She has no problem remembering back then... but she doesn't remember I lost a pregnancy 2 years ago or that I had cancer 3 years ago. It's like it never happened. 

I do not know what to do. She refuses to get diagnosed. She denies she has a memory problem. She doesn't even realize it. She cannot afford to get a diagnosis. I do not live in the state, I am not there to help her and her husband (20 years her senior) doesn't seem to care. I don't know how to get her the help she needs. Any advice would be welcomed. I have a compromised immune system so travelling during COVID is pretty much off the table. (Not to mention her husband would not let me take her to the doctor in a million years because of the cost.) I just do not know what to do or how to help her before it is too late.

terei

Well, firstly, she needs to see a doctor to determine whether her dementia symptoms could have a physiological cause, such as:

 Definition. Wernicke's encephalopathy is a degenerative brain disorder caused by the lack of thiamine (vitamin B1). It may result from alcohol abuse, dietary deficiencies, prolonged vomiting, eating disorders, or the effects of chemotherapy. B1 deficiency causes damage to the brain's thalamus and hypothalamus.Mar 27, 2019

There are doubtless other causes.

If you or another relative simply cannot get there to assess her, I would try to call her county’s social service 

and see if you cannot get someone to visit her at home to determine her living conditions + can do anything to

help or at least give you advice about a direction  to take.  As far as the husband not letting you take her to a doctor,

if it was my mom, I would make an appointment  with doctor who has the necessary info in advance to try to help

+ tell the H you are taking her to lunch or some other ruse.  You can 

tell her you are stopping at the dr office for an appointment for whomever is driving her there.  She does not 

need to know either, IMO.  It sounds like she is not processing enough to make any decisions for herself. Someone

has to take the bull by the horns.  Hopefully, you can get another family member on your side to help implement 

a plan.

Jenna_32

I have never hear of Wernicke's encephalopathy, but this sounds like it could be a possibility. As said before, she has suffered from alcoholism, but she has also been bulimic as far back as I can remember. My younger brother lives in the state and is on board with getting her some help. 

After reading your reply I talked to him about getting social services involved. He was hesitant because we've had social services involved in family struggles in the past and it has never ended well, my mom's husband is a very convincing liar. I don't hold it against social services but he has manipulated them in the past and we are afraid he would do it again. 

I did some googling and found the hospital that my mom went to for a kidney stone. I called them up and basically told them my concerns. I was surprised they still had her records.  A nurse is going to call me back and let me know what my options are and how we can move forward.

Thank you for the help in this first step. 

Iris L.

Jenna_32 wrote:

  She does not realize we already had the exact conversation we just keep having. Her short term memory is just gone.

Welcome Jenna.  This is probably anosognosia.  PWDs (people with dementia) are not aware that they have dementia or that they are repeating.  This is not denial.  You will have to learn work-arounds to get things done.  You will learn these from the members.  They are knowledgeable and willing to share.  Keep posting.  

Iris L.

harshedbuzz

Jenna-

This is a very difficult situation. 

Given her age, there is a strong possibility that you are seeing a alcohol-related dementia called Wernicke Korsakoff's Syndrome. Most neurologists combine the 2 as the earlier/treatable stage and later stages of the same condition caused by a deficiency in Thiamine (Vit B1). WKS can be caused by alcohol use (women are more susceptible at lower levels), bariatric surgery, extreme morning sickness, starvation, eating disorders, end stage AIDS and some cancers. My dad and cousin (about your mom's age) had it from alcohol abuse and my late sister likely had it the last 9 months before she died from complications of AIDS. 

With dad, I noticed the personality changes fairly early on. Other people started to be on the receiving end of the darker side of his personality that I always saw. This preceded the short term memory glitches; like your mom dad could recall details of his early years quite well for a time although later he started conflating stories which is very characteristic of WKS- confabulation is when a PWD recalls an event but can't remember the details accurately and backfills them random information from other events. Sometimes these stories can sound entirely plausible to someone who doesn't know better; sometimes these stories can feel like re-writing family history to those who do know better. My dad dwelt on the past a lot too. It was almost as if he was time-traveling. An unsteady gait, odd eye movements and feeling cold are also common with WKS. 

This condition isn't always on the radar. My mom initially took my dad to a small town/resort area in the midst of a Wernicke's event and they didn't do the necessary testing or treatment which may have cost him. A week later, we took him to the big city university medical center ER when the neurology resident drew blood and treated proactively within the first hour we were there. 

If your mom does have WKS, treatment might improve her cognition. Dad improved a great deal with IV Thiamine (oral supplements aren't enough for a significant deficiency although he remained on supplements going forward); after about 6 weeks in a SNF/rehab he was back to a pretty functional baseline where he could manage his ADLs but not IADLs. He wasn't able to learn ways to be abstinent and his continued drinking hastened the disease process. Dad had mixed dementia with Alzheimer's as well, so fighting WKS wasn't going to protect him from getting worse. My cousin did abstain for several years and lived with his son for about 10 years before he died in his late 50s. I don't know details on his death and whether he started to drink again but his death certificate lists alcoholism/WKS as causes of death. 

I am sorry you are dealing with whatever issue your dear mom has.

HarshedBuzz.

harshedbuzz

ETA: 

I brought spina's post of WKS support to the top for you.

HB

Harveysgal

First find out if there is an Adult Protective Services agency in her county.  It could be that they could evaluate and possibly help her whether her husband is willing or not.  If her husband is preventing her from getting the medical care she needs, that is abuse and they may be able to intervene to protect her.  In any event, alerting them to the situation could get you some more informed assessment of her situation.  Good luck to you and to your Mom.