Brand new here and scared

Sas211

In the last week it has become clear that I need to take action to get my mom evaluated. I’ve noticed changes for the last 3 years, but she refused to let me contact her doctor. 

I have decided I’m going to go ahead tomorrow and contact her doctor and tell her my concerns and request she refer my mom to a neurologist. I’m certain my mom is showing signs of dementia.  My mom will be furious if she finds out I did this, and I hate knowing that, but I must do it anyway. 

Talking with her is so frustrating. I am banging my head against the wall. 

I’m feeling so scared and overwhelmed. I have so much fear about how the next 5, 10,15 years are gonna look,  and so many things need to be done legally, financially, etc. 

I’m sitting here on vacation at a lovely spa, and I’m having so much trouble enjoying my time here. I keep thinking about my mom and what’s going to happen to her and how I’m going to handle this.  

how am I ever going to get through the next years if I’m already this big of a wreck? 

Thanks for listening. 

Oregano

To see one's father or mother decline is one of the toughest and cruelest challenges life throws at us. It's compendable that you're being proactive and thinking long-term, even if doing so is unpleasant.

There are plenty of folks here far more qualified to offer support and advice on caregiving than I am. But, especially because you're catching this early on, I want to bring to your attention a recent anti-fungal protocol that has had a profound effect both on myself and hundreds of others.

It is the NAC protocol: NAC + oregano oil (capsules) + black seed oil. I've written a thread about it on this forum. I can personally attest that the brain fog I experienced for years cleared in a matter of days. The reason why I believe this has an application in Alzheimer's patients is that several types of mold have been found in the brains of autopsied sufferer's.

Please check your mother for signs of Candida overgrowth. Also, inspecting her environment for signs of mold is a very good idea. I hope this post offers you hope and optimism for the future. Alzheimer's (and much more) is an enemy that will be defeated in our lifetimes.

M1

Welcome to the forum Sas.  You are right to take action and unfortunately you cannot expect cooperation from your mom--if you're not familiar with it, look up anosognosia, which is part of the disease (and the inability to recognize the deficits, it's far more than denial).

Most docs are aware that when the family complains, the findings are likely quite real.  You should put your concerns in writing for both her primary care provider and the neurologist.  There are a number of medical steps to rule out other medical issues that could mimic dementia.   You may have to get her to the doctor under false pretenses, such as "a visit is required by Medicare now" or some such.  One thing you will learn quickly here is that fiblets like that are perfectly acceptable to keep her safe and cared for.

You are also quite right to think first and foremost about the legal steps--you will need power of attorney for both finances and medical care, and these should be done while she can still sign if possible.  You'll want to contact a certified elder law attorney--these can be found by location at nelf.org.  These folks can also help you assess her finances and advise you should you need to think about applying for Medicaid for her in the future (for potential long-term care, if needed).

Good luck.  Y ou've come to a good place for support, with many experienced caregivers here.  Keep us posted how it goes.       

Sas211

Thanks for taking the time to reply. I appreciate your insight.

Sas211

Thanks for taking the time to reply. I am a physician, so I’m hoping my letter to her PCP about the changes I’ve seen will have even more weight. Good idea to also reach out to her neurologist, whoever that ends up being. 

Just today I’ve reached out to my brother in regards to getting us to have POA so I’ve already put some things in motion for the future. 

Thanks again. 

ZackFootInMouth

Having someone from NELF hold your hand will be reassuring. They can outline what you might have to do in the coming months.

But you also have to look at it like you've been drafted into a fire department, preparing yourself to handle emergencies that will inevitably pop up in... weird ways.

harshedbuzz

Sas-

Hi and welcome. I am sorry for your reason to be here, but glad you found us.

You will be ahead of the game as a medical professional in many respects, but that is unlikely to spare you any of the emotional challenges and missteps in terms of getting through the experience.

It is wise to get the legal paperwork done asap. A Certified Elder Law Attorney is best. You can find one here-

National Elder Law Foundation (nelf.org)

One of the best ways to do get this done is to claim that you are updating your legal paperwork and thought she might want to as well keeping it all low-key and business-as-usual.

I would discuss, ahead of time, the best way to handle the POAs. Unless you and your brother are the sort who are always on the same page, it might make sense for you or whomever is closest physically to assume the POA with the sibling as successor. Two POAs mean you have to be in agreement and available to accomplish goals. It means, for instance, you both have to sign to assume any financial duties around paying bills and moving money out of retirement accounts.

It is also not ideal to have a split POA where the "boy" handles the finances and the "girl" handles the medical piece. All too often the medical POA will see a need for aides or residential care while the financial POA is focused on preserving assets. Sibling relationships can be destroyed by such arrangements if they have different ways of seeing things.

It is possible your mom has anosognosia and cannot appreciate that she has had a cognitive shift. It is also possible early in the disease process that she is somewhat aware of her difficulties and terrified of being found out. Neurologists use a 3 stage model for disease progression, but families tend to use a 7-stage model. Using humor or a going on the offensive when confronted with memory lapses is pretty common as a PWD moves into stage 3 (early middle stage).

Stages of Dementia Dr. Tam Cummings

There comes a point where it's best to use workarounds to get our LOs to do something to keep them safe. Often this involves the use of therapeutic lies-- "fiblets" if you will. Send or call the PCP with your concerns ahead of time and create a reason why she needs to go in. Perhaps she needs a refill for her BP medication, or she needs her annual Medicare-required physical. 

One thing you do want to avoid is trying to reason with your mom. Dementia is about more than memory-- early losses include things like executive function and higher order thinking skills. Even if you could get her to agree to see a neurologist, she might forget she agreed by tomorrow and swear you never told her. Avoid this.

I found this piece useful for getting into the dementia mindset so I could manage my father and get the things done for him that were necessary.

understanding-the-dementia-experience.pdf (alzconnected.org)

Good luck.

HB 

Sas211

Thank you so much for your extremely thoughtful and detailed reply, HB. 

Unfortunately, my brother and I are mostly estranged (due to past abuse on his part) and I avoid him whenever possible. However, we had a pleasant conversation this weekend regarding my concerns about my mom, and have been in touch by text as well with updates. Clearly, we’re going to have to work together and getting along will be of the utmost importance. 

I’m in Texas, he’s in Colorado. What you say about POA makes sense.  Ugh, not sure how much we’ll agree. 

My mom is seeing her PCP tomorrow and I faxed letter to PCP today, so wheels are hopefully in motion, and hopefully we’ll have some concrete steps to take with the POA once we actually have a diagnosis. 

Sas211

Thank you for taking the time to reply. Will definitely be looking into NELF

Iris L.

SAS, I was a pediatrician, so everything about dementia was new to me, since I did not work with older adults.  Nevertheless, it is surprising to me how many doctors and other professionals who work with older adults are unfamiliar with the signs of early dementia.  They frequently attribute signs to getting older.  Become aware yourself of the steps of a thorough diagnostic process for the dementias, so you can be sure that dementia mimics have been ruled out.

Also, don't hesitate to ask questions.  You will most likely come across issues you never even considered in your practice.

Iris L

Jo C.

Hello Sas and a very warm welcome to you.  It is understandable the feelings that are overwhelming you right now.   It is a stunning situation to be facing with so many unknowns as well as grief for all the changes that we know are to be.  We tend, especially if in the medical field, to project into the future with the worst scenarios playing though our minds.  (I am an RN.)  From personal experience, I can share with your that you will be able to manage and rise to the occasions as need be.   We can and do find ways to help our Loved Ones (LOs) have the best quality of life as can be.

By the way, M1 who Posted here is also a physician and Iris was a Pediatrician; lots of medical experience but still facing the unwanted spector of dementia.  Many who come to this site have significant problems they are facing.  Not all do have the same issues.  As the saying goes, "When you see one person with dementia; well, you have seen one person with dementia."  Many do not develop as severe a path as we sometimes see here.

I was the responsible person for my LO.  I managed the Finances and the Medical as well as the hands-on Care aspects of the needs.  It is doable and I certainly did learn a lot.  It became necessary to also find at-home aide assistance as I worked and could not leave my LO alone.  We had funds for that for three years.  Also . .  not only did my LO have FTD: my step-dad at the same time was diagnosed with Alzheimer's Disease.  Shall we say; it was "interesting times."

The Care Team really needs to have a good Dementia Specialist in addition to the Primary Care MD; this will bring best care when the condition advances.

We needed to get the legal issues addressed early on while my LO could still sign her name and present at least reasonably capable of cooperating. I did though, have to mention it in terms that we were doing, "estate planning."  That was acceptable to my LO.  I also avoided the title of "Power of Attorney."   I had clued in the attorney and we arranged that my LO would be "my" DPOA and I hers.  The atty went along with it and then shredded the DPOA for me which I redid in reality at a later date.  Such a relief to have that part done.

I always wrote a detailed memo re changes in condition and any issues and got them to the physician a few days prior to any appointent. I faxed it and made sure staff got it to the doctor labeled time sensitive to the appointment date.  I always went to the appointments with my LO and could never, ever have spoken of the issues in front of her without causing a huge kerfuffle.  I also learned to use as very good tool in the caregiver's toolbox; that of the "therapeutic fib."  Horrible to first lie to my LO, but when I saw how it kept her from irritability and melt-downs and got things done needing doing, it was, I saw, an actual kindness for my LO.

Got my name on the financial accounts and checking.  My LO had a behavioral variant of FTD which had her trying to plunder accounts, etc. I had to go to the bank and close them and re-open under my name and my step-brother's name - he was completely trustworthy.

I managed to do this while working and sure had to jump through hoops sometimes but it was doable.   Later, I gave up an Administrative position that was advancing and became a "Consultant" so as to free up time when needed to attend appointments, etc.

Do make a list and go slowly one step at a time.   All will begin to fall into place. I also did a monthly financial accounting report and sent it to each sibling all of who are honest and in order to be completely transparent. It was helpful to do that. I  did not share it with my LO as I was not asked and it would only have caused some agitation.

Little by little you will be able to move forward and you can do it; you really can.

There are still many moments of love, sharing and even joy.  You are a caring and loving daughter; your mother is blessed to have you by her side as you move forward together.  We are all here in support of one another and that now includes you too!  Let us know how you are doing, we will be thinking of you.

J.

J.

BillieFL

FYI I have learned so much here that allows me to help my DH. Today this reference to anosognosia is the latest example. Yesterday he had a tantrum when I told his doctor on the phone that he has not been eating well. I had to practically hang up on the doctor. Then I had a tantrum finally after years of this type of behavior, and I may have made an impression. Maybe not, in which case I am about to give up, sad to say. DH will NOT go to a doctor.

Other advice that has proved helpful...do not be afraid to fib. We must understand that the loved one is not in his or her right mind, and if we are afraid to fib they will get hurt and so will we.

If you can find a concierge doctor who can give more time with less stress (crowded waiting rooms, long periods of just sitting and waiting) go  for it. I am still trying to find a match for my DH.

DEFINITELY GET YOU POA IN ORDER.

Thanks to all who contribute.. you are wonderful helpers.

PS The advice of Harshedbuzz is excellent.. and I found that have had fewer problems since I fixed MY thinking.

BlackCat1

Hi SAS,

Welcome to the club nobody wants to be in It has been a long and hard road for my family. We have done our best with this cruel disease.  We threw our resources at it as hard as we could, and honestly that has saved us.  Our LO was so stubborn that it took a medical emergency until we could step in and get the situation under control. We had everything in place legally as soon as we noticed something was very wrong, however, our loved one was unbelievably obstinate  which relegated us to the role of emergency managers. There was nonstop emergencies.  Our LO refused to see a Dr., and walked out of the hospital refusing care for a broken bone from a fall, took the car and crashed it even though the keys were hidden and they knew they were not allowed to drive (no one was hurt), talked uncontrollably for YEARS until our eyes would glaze over after hours of nonstop monologuing. Then the wandering, shadowing, hallucinations, seizures, incontinence, strokes, falls, nonstop UTI's, and contractures started happening.  We have a 24 hour nurse at a SNF that cares for my LO now, the price has DOUBLED in the last year. This disease is devastating financially and emotionally. I wish that people would tell their stories of what the disease was really like to manage.  Trying to manage someone that absolutely refuses care is very challenging. I feel very blessed that we can afford to have excellent care for our LO.  Watching this happen in slow motion has been cruel and devastating emotionally for our LO.  Our LO has been on hospice a year, and it looks like could be on for several more.  Each stage presents new challenges that I never realized could be so complicated to manage.  I am glad that you are taking a vacation it's a long road ahead.