Mom visuospatial diagnosis update.
Well we met with mom's neurologist and she doesn't think mom has dementia at the moment since she passed her neuropsychological and all other tests ( MRI, bloodwork etc). Dr. advised to take mom to eye specialist for the visuospatial issue , therapist for her severe depression and to come back in 6 months to check progress. That was 4 weeks ago.
Since then mom seems to be getting worse.
Examples: Forgets what is said to her within minutesDoesn't seem to feel temperature variations. If we are outside during my visits and her chair is in the sun she will sit there and let the sun beat down on her. It was 85 here yesterday and when I asked if she wanted me to move her chair she just rolled her eyes. I did have her move and made sure to drink more water. We used to do her bills together. Now she just stares at it and tells me she will do it later. I took over the finances completely ( I am on her bank account) Excessive online QVC shopping, buying stuff she doesn't need or buying multiple of the same items. I was able to get into her account and change passwords for now. Forgetting to take her meds. I carefully label them for daily use and she forgets or tells me she already took them when she clearly does not. She has a pacemaker and needs to at least take her heart meds,Not eatingSleeping a lotNot cleaning up after her dog (she doesn't take her dog out and it literally pees and poops everywhere ) Dog has stopped using pee pads and mom will only clean up after her dog if I call ahead to saying I am coming over. I just don't see any life in her. Total apathy and not caring. Evidence of incontinence
So her primary doctor, neurologist, neuropsychologist keep giving us more doctors to go to. It's exhausting.
We do have an eye doctor and therapist appointments this week. I have little faith that they can help her.
Meanwhile she still will not consider hiring help, moving to smaller place or AL. So I guess my only options are to keep trying and then wait for a health disaster.
Any words of wisdom are appreciated. Thanks
6 Answers
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I did tell the Drs and Nurses of past and present behaviors.
Thyroid function needs to be measured with blood work NOW.
JoAnn mentioned thyroid.
You said "She's on medication for that".
We may just have hit on something here. Because not taking your thyroid med (you mention she is missing meds) can lead to these conditions you mention and can in fact lead ultimately to coma and death. See below from internet.
Get mom's thyroid function measured asap.
From internet:
"If you have hypothyroidism—whether due to Hashimoto's disease, thyroid surgery, congenital hypothyroidism, or Graves' disease treatment—you shouldn't suddenly stop taking levothyroxine or other thyroid hormones without speaking with your healthcare provider first.
Stopping these hormones for even a week may cause side effects. Stopping them for a long time when the disease is uncontrolled can pose many health risks, including:1
Changes in blood pressure
High cholesterol
Low body temperature
Fatigue
Muscle weakness
Joint pain
Depression
Memory problems
Weight gain
Infertility or birth complications
Irregular periods
Reduced sex drive
Constipation
Hair loss
Swollen hands, feet, and face
Increased risk of infection
Increased risk of heart disease
If you lack thyroid hormone for a very long period of time, you risk a dangerous condition called myxedema coma. This develops when your body’s functions slow to a point where life systems are compromised. Myxedema coma requires emergency medical treatment.2
How Long Can You Go Without Thyroid Medication?
The drug half-life of levothyroxine is six to seven days, which means it takes about four to five weeks for your body to be completely rid of the drug.4 Even so, most people will start to experience symptoms within a week, gradually worsening over time."
She does know to take this one pill most of the time it's the only one she will take ( she has been on it for 30 years). I will look into this further. Even then though I can't make her take them every day.
The family kept telling us (who were trying to help Brad) that although he was having "blindness" it wasn't an actual physical problem, but neurological (visuospatial) -- which I had never heard of before. He did also suffer from depression and it's possible he was no longer sober (he had a history of alcoholism but never acted or smelled like booze at church or at the group). Nothing his family or friends did for him at the AL helped and he eventually committed suicide, after 1 unsuccessful attempt.
I'm not trying to stress you out with this story but if your Mom starts having any self-harm ideas you need to have her Baker Acted to the ER.
I think it is safe to say that your Mom now can no longer manage her affairs or make decisions in her best interests, so if you are her PoA you need to read the document to see what activates the authority so you can now legally step in and do what's best to protect her.
I wish you success in helping her get appropriate care and peace in your heart on this very difficult journey.
Ironically my brother died by suicide 10 years ago and I don't think she ever dealt with her grief .
I am not familiar with the Baker Act and will read up on it.
I do have durable POA but to my knowledge and after speaking to the attorney who set it up 2 years ago I cannot do anything without an official diagnosis. This is why getting diagnosis was important to me, I thought I was doing the right thing in the right way to keep her safe.
Has your mom at this point been put on any anti-depressant by her doctor?
As to the medications, I see your mom is 80, after reading your first post. Honestly this isn't any way to "live"; sadly whether she takes her meds or not at this point wouldn't be my concern. But if she has a charge card, that would be; I am glad you have taken on all financial. Sadly, as she's undiagnosed, that will last only so long as she lets it. Do all the safeguarding now of her finances you are able to.
My worry here honestly is you. I can't accuse you of enabling, as you are doing what must be done. But I do believe you own life is going to be forfeit to this.
You've written asking if we have words of wisdom. WOW! If ONLY........
At this point I can only thank you for the update, hope you keep updating us, and that you continue best you can.
Just back from reading your original post. See that the MRI and ALL testing was done. Let me just add this: My brother's Lewy's dementia started with visuospatial affects. I recall him sitting with me describing what he saw compared to what I did. Looking at a white van parted some 400 or so feet in front of us amidst some trees he actually saw the fender as a Diego Rivera painting of a man at a flower market, with ballooning pants and calla lilies; you may know the famous painting. He went on to say he could not tell a sparrow on a fence, whether near or far, in front of or in back of fence. He later moved into very real hallucinations that would have sounded like dreams to others, but he was awake. Could describe complete pool parties outside his window and how people were dressed. There was no pool. He could describe an immigrant woman dressed in brown cloak trying to protect her child, huddling in his corner. In the beginning I wanted to see these as dreams. It later became clear they were hallucinations. Being talkative of nature with me, and a lover of detail, his hallucinations were exceptionally detailed as well. He was diagnosed with "probable early lewy's dementia by symptoms"; after a car accident when he "went blank" and drove the car back and forth smashing into a huge palm and a massive dumpster repeatedly. He kept saying "I KNEW something was wrong. I KNEW something was wrong". His Lewy's stayed stable after he went to ALF, having first made me his POA and his Trustee, and giving over management of everything to me. He died 1 1/2 years in of Sepsis (and was grateful to go before Lewy's could further rob him; as was I).
I'm wishing you the best.
Mom is going to be 79 next month. She was put on Lexapro last year but it never seemed to have worked and she stopped taking it last spring and I stopped putting in her pill box because it was too long since she last took it. I have given up on monitoring her meds. I fill her box for her every week and told her it's up to her to take, I can't make her. I live an hour away and do what I can to help and have come to the conclusion that I need to back off if she can't or won't help herself.
I do have durable POA but to my knowledge and after speaking to the attorney who set it up 2 years ago I cannot do anything without an official diagnosis. This is why getting diagnosis was important to me, I thought I was doing the right thing in the right way to keep her safe.