New Member

lvillotta1

Hi Everyone! My name is Laurie and my mom is 78 just diagnosed with early onset Alzheimer’s. She was a nurse for 50 years and I had been noticing that about 5 years ago it was Xmas day and the whole family was together. I remember her sitting down and watching her grandchildren open gifts and she had that far away look in her eyes and was not engaged at all. It took my sister and I a few years to convince her to seek out medical help. We started at her PCP then onto the initial neuropsychiatric evaluation and just recently Neuropsychiatric MD who is prescribing Kisunla. She gets her first infusion today. Her short term memory is gone. She has no idea how to use her cell phone only to call and text. She is still driving, has her long term memory intact. She asks the same questions over and over. So it is hard to know where she is at along the trajectory of this disease.
Like all of us caregivers we have lost our loved one in so many ways. She is my best friend and my right to die, but no longer has the capabilities to be an advocate. She is fixated on the traffic and road closures and wants us to pick her up for outings and appointments hours early. She has so much anxiety, that she never had and of course you can not argue with her. We have a very long road ahead.

On a side note I have been a nurse for 30 years. Early on in my career I was a hospice nurse. A good portion of our clients were the diagnosis of Alzheimer’s. You need 3 qualifiers. For example Incontinence, co-morbid disease like COPD, cancer, neurological disease and recurrent infection, weight loss. Hospice is the most under utilized benefits from Medicare. If your loved one does qualify they provide everything at not cost to you. Electric bed, bedside table, air flow mattress, commode, briefs, wipes, any dressings ow wound care needs, wheelchairs and most medications. BUT the best reason to advocate for your loved one is to be able to get behaviors under control!!! Our hospice nurses and medical staff know how to do this best!!! To be able to control depression, anxiety, agitation, aggression, pain is something that most PCP can not do and do not want to do. Families will also get a social worker, chaplain, bath aide to come in twice a week for showering and shaving and a nurse. I would urge any caregiver to reach out to the PCP to get an order. You will not regret it! If I can be a resource for anyone please reach out!
Laurie

wose

Thank You… very good to know💜

BPS

With a diagnoses should she be driving? My wife seemed good to drive so she drove longer then she should have. She had a small accident and then a short time later she had another one. They were both minor and no one was hurt but they could have been. Her judgment was poor, reflexes slow, and her depth perception was affected.

Second as a hospice nurse did you also do palliative care? My wife is in MC and I don't think she is ready for hospice and I don't know enough about palliative. The MC facility is having someone come in to give information to residents families about both, but any information ahead of time would at least help know what questions to ask.

H1235

I read on this site that once diagnosed with dementia insurance may not cover if there is an accident. From your description I don’t think she should be driving. There is a driving simulator test the doctor could order. You could also just ask the doctors opinion. I can’t imagine any doctor saying she would be fine to drive given your description or her symptoms. Lives are on the line here. The consequences could be very ugly.

Cardenas1816

Whether or not she can continue to drive depends on which state you live in. For instance, in California I’m told you automatically lose your license when diagnosed with AD. However, in Texas they don’t take it away immediately. So for us I had to get the doctor to order that my husband stop driving. It’s a tough pill for them (the patient) to swallow so having it come directly from the doctor helped me.

Cathy coconis

https://alzconnected.org/discussion/73763/new-member

thank you so much Laurie for the information! Good luck on your journey. We are here for you also.

Cathy coconis

https://alzconnected.org/discussion/73763/new-member

Regarding driving, I was the one that knew my husband should not be driving. In addition to slow responses, he was disregarding stop signs, red lights, and driving onto one way streets! I was not wanting to be the one to tell him.

I told the neurologist, asking him to take steps to assist. He casually mentioned to my husband that sometimes people are evaluated by a physical therapist, to make sure they’re OK driving. My husband agreed with this, no problem.

however when he failed the test, he became very agitated. He insisted that he wasn’t trying hard and wanted to do it over. The.PT said he could not.

When he returned to the the doctor, the Dr told him he should not be driving. The doctor warned that if he did, he would report him to the motor vehicle department.
if he was in an accident, insurance would not cover it because of his medical record and the fact it stated he should not be driving.
A very tough but safe decision. Most importantly, no one was hurt.

harshedbuzz

@lvillotta1

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

Given her anxiety and her inability to manage it effectively with cognitive strategies, a low dose medication like an SSRI might be helpful. Behavior is communication. If she's making you crazy with her fixations, imagine how it feels to be her.

Thank you for your information on hospice. Many here have found it a godsend.

Regarding the driving. Dementia is about so much more than memory loss. Things like visual processing speed, executive function and spatial reasoning are impacted early on and will impact driving ability.

Regarding coverage in an accident. Many policies have a clause that voids the policy if the care is operated by someone with a dementia diagnosis. Ask your insurance agent for further clarification on your mom's actual policy. In my state, the car's registration is dependent on insurance coverage— not the drivers license.

One caveat about driving having lived through this with my own mom who does not have dementia. If mom has an accident and is sued— with or without coverage— considerable time will pass before she is deposed regarding the accident and potentially called to the stand. During that time, her disease will be progressing with the result that the person called to testify will not be as capable as the one who had the accident. In mom's case it was almost 2 years from fender-bender to a settlement minutes before the trial was due to start. Despite being "sharp as ever" at the time, mom looked and was older and frailer than before.

Another point is that, in certain circumstances, when a PWD has an accident, their POA can be held liable for allowing them to drive knowing they're impaired.

HB