This time is different

Tanya

Hello everyone this is my first time on any type of support forum. My dad passed in November due to Amyloidosis in his heart. I hated seeing my dad deteriorate with his mind intact until he closed his eyes. And now my mom. She is physically capable, but her mind is going quickly. She knows her condition because she cared for her mother who passed from AD. While she has not been professionally diagnosed, her short-term memory is gone. As I was reading some of the posts, I felt like everyone was talking about my mom. I have learned alot and have so much more to learn. My mother gets confused about almost everything, most times she is "pleasantly confused" and she is beginning to lie about what she does or does not do (like going for a walk daily or any small task). Her neurologist suggested she not drive but she still goes to church and the grocery store. Family attempts to fill in to drive but not always. She is content in her own home and is not interested in anyone living there at the moment. I am concerned because she could fall, someone could jack her car and a host of other scary things my brain can come up with. I am having a hard time making the decision to move back home with her and don't want to wait til something bad happens either. I just needed to vent really because it is all so sad. There seems to be so much that needs to be done, I just don't know where to start. So hard for everyone because she has been everything to us all.

harshedbuzz

Tanya-

Hi and welcome. First, let me offer my sympathy on the passing of your dear dad. I am sorry for your reason to be here but glad you found this place.

I'm a little confused. You say your mom doesn't have an "official diagnosis" but that her neurologist told her not to drive. Does she see the specialist for some other condition? Could it be she was diagnosed but your parents elected not to share that with family? (this is surprisingly common; I strongly suspect my uncle was aware of my aunt's dementia on his deathbed and had been scaffolding for her to protect her dignity) Was she diagnosed with MCI? And if she was, has it progressed to Alzheimer's in the time that's elapsed? Did she have the basic workup to rule out other causes of these symptoms? You'd want blood work to test for vitamin and hormone deficiencies as well as imaging to rule out lesions.

Two concepts that might be useful for you would be anosognosia and conflation.

The former is when a person with dementia or mental illness is unable to appreciate the magnitude of their impairment or inability to function independently. Basically, they don't know what they don't know.

The latter feels like lying but it's more complicated than that. It could be mom reports a walk because it was her custom in the past and she believes she really did. Or it could be she recalls an event but is iffy on the details, so she backfills with information from some other event. Sometimes these confabulations could be plausible and often they feel a bit like re-writing history. (My own dad conflated all of my late sister's young adult shenanigans to me for some reason-- explaining to my son that I never got drunk and left him in a bar while I took off with some guy was interesting)

Do you or someone else have a DPOA and Health Care Proxy to act on her behalf as it becomes necessary? If not, that needs doing asap. A CELA would be your best option. If you can't get her to sign the POA or if the lawyer feels she's not competent to sign (a fairly low bar, btw), you may need to obtain guardianship which is more time consuming, expensive and has potential to upset your relationship.

I would be super concerned about the driving. If she has an accident, her insurance may not cover a driver who is driving AMA. Dad's policy didn't. If he'd had an accident, he could have lost his home and all his assets which were needed for his car. I would be less worried about carjacking and more worried that she gets lost and runs out of gas in another state too confused to recall emergency contact information. Or that she plows into a bus stop or another car and kills or injures someone. Also, if there is a POA names, that person may be held responsible as well since they should have stopped the driving. Driving is a tough one to give up; both of my parents had to give it up and it wasn't pretty. For my dad who had dementia, disappearing the car-- a visual trigger-- helped. I never did the symbolic taking of the keys or license-- I just made sure they didn't have a car to drive.

It's hard to say how long a PWD is safe at home. The general rule is they are safe until they aren't. Sometimes you get a warning, but sometimes you don't before a tragedy occurs. In determining this I would suggest creating a ruse to stay over 24/7 for a couple of days. Your mom could be "showtiming" (holding it together for a short time) when you visit or maybe she's great around lunchtime but sundowns in the evenings. I would also watch the money. A recent widow may be extra vulnerable to scams of all kinds. Watch the mail for charity appeals. Watch the phone and email for scammers. Also watch her behavior online-- is she spending, donating to sketchy charities, etc. While my dad could still use a computer he day-traded away $350K that would have been useful for his care.

Wishing you luck with this. It's all hard stuff.

HB

Tanya

Hey HB, great questions! So, mom was previously diagnosed with MCI before covid and now she (at her request) wanted all new medical team. She fires people when she doesn't agree or doesn't understand. Her new neurologist has not formally diagnosed her because she has just finished her tests (MRI and Labs). So, we are waiting for her follow-up appointment to hear what he has to say. The driving was just his suggestion based on her initial visit. I did read about CELA and POA, even staying with mom to observe her flow. Yes, she showtimes big time around some but thankfully, we can communicate reality as much as she allows. I didn't think about the accident/responsibility part of driving (smh) because here in DMV driving is bad for everyone. Thank you, I have been mentally preparing myself to move in with her just hoping not to have to come up against much resistance. You have cleared up the "showtime" behavior and thankfully have not experienced sundowning. I believe her diet and hearing could also help however she doesn't want hearing aids. This has been very encouraging. God bless you completely!

harshedbuzz

Tanya-

Make sure she's signed the HIPAA form so you and her new doc can communicate about things. Otherwise, you will only be able to share what you're seeing without feedback from the specialist.

Many of us find it better to maintain our status as an ally with our PWD by being very discrete at appointments. My dad was tough. He showtimes like a champ or conflated like a master at office appointments. Rather than contradict him and lose status "on his side" I contacted his doctors using a patient portal or gave the staff a note to read ahead of coming into the exam room. If he started weaving fantasies when the doctor asked questions, I would silently signal the doctor when he started tell tales. I even video taped him raging at me in order for his geripsych to understand what he was really like at home.

Depending on her progression, she might not have the bandwidth to make the adjustment to hearing aids and they could be one more $$$ thing to lose. Diet is a hard one, too. Many PWD really lean into the sweets and the easy to eat junky prepared snacks. My dad had eaten a Mediterranean type diet for years, but in the mid-stages of dementia he was suddenly into ice cream, pudding, fast food. While a good diet is best practices, in reality sometimes it's about getting enough calories and hydration in.

HB

Dlucky

Tanya,

We (everyone on this site) support you! My best advice today would be to prepare for what may be a tough decision in the future when the care requires a team and can no longer be performed by one individual. Memory care centers often have long waiting lists and large financial investments. The decision to take care of someone with dementia is challenging and all of us on this site understand the commitment and love we show with those struggling with this disease.

Shan

Tanya, I’m so sorry for the loss of your dad and now the decline you’re going through with your mom. I can relate. I lost my dad to heart disease and now am going through the slow grief of losing my mom to AD. The advice above about POA and finding care help before you need it is valuable. I would like to offer you a bit of advice I wish I and my sisters knew before we took our mom’s car away from her. My mom is classic PWD with anosognosia, meaning she has never been able to understand that she has brain deficits and will be the first one to say she is completely capable of caring for herself and she doesn’t think she needs help with anything. So when it was time to make sure she didn’t drive anymore, my sister blamed a geriatric Neuro doctor that my mom only saw once and said she told her to sell the car because she wasn’t safe driving anymore. Three years later, my mom who can no longer remember if she fed her dog just 2 minutes ago, still remembers that it was my sister, at the advice of “ that terrible doctor she refuses to see again” who took her car and she is still very angry at her for it. So, when it’s time, and from what you describe that sounds like very soon, I would recommend you find someone other than family to take the blame. If your state DMV allows it, it’s a good idea to tell her a fib that she needs to take a driving test to update her license. I’ve been told that most DMVs will give tests to assess driving competency of elderly drivers if asked. That way if she can pass the test you can feel assured that for now she’s safe to drive. But if she doesn’t pass, then you are not the one who took her driving independence away.

BookBuffBex

Tanya - Sorry to hear of your struggles. My mom is at about the same 'place' as yours. I used to say the same thing about my mother "lying", I thought she did it on purpose. And while in the past she may have 'omitted' certain facts, what's going on now is completely different. My mom legitimately believes she is still doing the things that she's done for her whole life - driving, grocery shopping, showering, doing laundry, etc. Nothing I say or do will convince her that she's not doing any of these activities. I've learned it's not worth the effort to try to correct what she believes. The best thing you can do is accept that she believes what she is saying to be true, and find ways to work around it - often with your own little white lies. Good luck!