New to forum - mom is in denial

TaraAggie97

Hi, all-

I am new to the forum.  My mother is 74 and showing signs of dementia.  It started in May of this year and has progressed quickly.  She is now unable to complete checks, count money, tell time on an analog clock face...and it seems to be more disability on a daily basis. Fortunately, my 79 year old dad lives with her and is able to keep track of her inadequacies. It can be quite a job. 

The main challenge with my mom is that she is unwilling to go to see a neurologist.  She did see her PCP (with Dad present) earlier this Fall and was found to have signs of memory loss.  Dad keeps bringing up the need to see a neurologist and my mom says (adamantly) NO.  She says she'll leave in the car, etc.  

She still drives...but is unable to go more than a block from home to the store or to get her nails done.

She yells at my Dad and her dog (never gets physical) when things get stressful (but this isn't entirely unusual for her, since she has always had a strong personality)...but is now very quick to anger...but also laughs when things aren't necessarily funny.  

She used to read, do crosswords, and run a household...now just sits (staring at her phone or the calendar that my dad has constructed to keep her oriented on a daily basis).  She watches Family Feud and hardly anything else.  

She also perseverates (remains abnormally focused) on when her next "mani-pedi" is...or when the maid is going to come.  

She's just not herself and we are at a loss for what to do.

Please let me know your thoughts on next steps for mom.  

My husband has suggested speaking with an attorney for obtaining a legal guardianship, but I am unsure if she has to be seen by a doc to do this?

What do you all suggest?  

I personally think that her keys are going to have to be pulled next...among other things.

Thanks for the advice!!

M1

Hi Tara, welcome to the forum, you've come to a good place to get educated and to find support.  There are many, many here with similar situations, and if you browse among the threads you'll pick up lots and lot of useful information.  I'm not good with links, but there are links to information about the stages of dementia, and communication and caregiving tips.  

A formal diagnosis is helpful to rule out treatable causes, above all else, and to get a handle on what you're facing.  The other thing you can't do too soon is get legally and financially squared away, with health and financial powers of attorney sorted out.  A certified elder law attorney is helpful if you need help planning financially for future memory care placement/how to protect assets if needing Medicaid assistance is needed.

Good luck.  It's a hard road but this is a good place to start.  Sorry you have need of it.

star26

Hi TaraAggie, Welcome to the forum. If you do a search here for "denial" you will see that A LOT of us have had the same issue. It's par for the course for many and we learn workarounds. It's a big positive that you and your Dad are not in denial and are making the day to day changes that are necessary to help your Mom and keep her safe. Keep in mind that if/when she receives a dementia diagnosis it's not going to change much in terms of her abilities or the progression of the disease. It will, however, help you to have a dementia "team" on board to help you with severe symptoms if they arise (such as rage). I'm a big fan of having a geriatric psychiatrist on your list of people you can call as needed.  

Someone needs to have financial and healthcare POA and a HIPAA release for your Mom. If your parents have not done any estate planning, I'd work on getting those documents signed now. Do it with an attorney. If you wait much longer, or after a dementia diagnosis, you may have difficulty getting an attorney to agree that she has the cognitive understanding to sign these documents and it increases the possibility that others could challenge the validity of the documents. If needed, you can get tips here about how to present this to your Mom if you think she will object.  IMO, seeking guardianship is to be avoided if possible. It's a long, unpleasant, and expensive process and the guardian has permanent reporting responsibilities to the state/court. Your Mom may not even qualify for guardianship at this point. 

I would stop all mention of neurologist, dementia, memory problems, etc. with your Mom. Some people have used some deception to get their LO to the doctor. For instance, scheduling the appointment without her knowledge, and then the day before or the day of the appointment say it's time for her follow up appointment that Dr. PCP required (no mention of neuro) or "the follow up visit is an insurance requirement". Tweak according to what you think would work best with your Mom and don't be afraid to play dumb, be vague, or fib a bit. (These are skills you're going to need for other stuff in the future.)  

TaraAggie97

Thank you, M1, for your reply.  It is somewhat comforting to know of others that are going through a similar situation.  I have taken note of your suggestion to get financial and legal affairs in order, and will encourage my father to do this.  Thanks again.

TaraAggie97

Thanks, star26, for the useful information and advice.  I really appreciate guidance in the financial, legal, and medical aspects of this situation.  I am an only child and my father is a good support for mom, but I sense that he is getting tired (and know that he will become so).  I know that we have a rough road ahead and it scares me to death (I am in healthcare)...thanks again for the information and your response!  

  

Iris L.

Your mom is not in denial.  She has anosognosia.  It's a characteristic of brain damage.  There are articles on the internet about it.  

Iris L.

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harshedbuzz

This is a difficult situation and similar to what I went through with my parents that led to a diagnosis  for dad in the mid-stages after years of denial on mom's part and anosognosia on dad's. I am also an only and to keep it interesting they split the year 4 hours by car/3 hours by plane away.

You've gotten some great advice. I hope you are able to act on it. 

The way I see it, you have 3 first tier tasks. The first- and potentially most difficult- is that you have to get your dad to understand that the choices he makes and the behaviors he engages in around interacting with your mom range from counterproductive (mentioning the neurologist) to dangerous (allowing her to continue to drive).

One issue I had with my mom was that she was too close to the situation and became the frog in the warm pot of water. She had no sense of urgency while I felt like my hair was on fire. She can't change, so he has to. This could be a challenge as he's been in a long term relationship with your mom for decades and is used to a certain level of give and take in which she is no longer a competent player. He needs to master the art of taking control while not allowing the other player to sense that he has. One thing that helped my mom come to terms with dad's cognitive shift and the need for her to be the decision maker in the relationship was this-

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

There may be more in-depth reading on the subject, but this is a quick read, it instantly available and it was the only thing my mom read on the subject that clicked with her.

She needs to stop driving until she's seen a neurologist who either advises she stop or suggests a specially trained OT retest her for fitness to drive. Deficits in executive function, memory and spatial reasoning render most PWD unsafe fairly early in the disease process. A few can be OK for a time but you won't necessarily know when that time is over until something awful happens- an accident, getting lost hours away. If she has an accident and there's a record of likely cognitive impairment with referral to neurology and you are sued, you could lose everything. This is harder to do when there's another diver in the house, but if she has her own car, it "goes to the shop" for a recall and is waiting on a part from China. Meanwhile, park it elsewhere. Dad keeps his keys or declares them missing when she wants his car. Once the neurologist says she can't drive, you can validate her feelings of loss and unfairness. Rinse and repeat. 

You need to get your legal ducks in a row. Dad needs to see a CELA- call it estate and investment planning. At a minimum, you need POAs for medical and financial matters for both parents. Dad can be mom's primary agent, with you as secondary. You needs to be dad's primary although this isn't made clear to your mom. Some families accomplish this by having a "family appointment" where everyone gets the Wills and POAs done. Get your name on all of their HIPAA forms at their various doctors so that they can talk with you. I also set up a patient portal for my folks, so I could communicate with doctors, see test results and read progress notes. 

It would be prudent to get her in to see a neurologist. I would hope her PCP did the tests which would rule out one of the conditions that mimic dementia but are treatable. Perhaps you can present the appointment as being a routine Medicare requirement or even an appointment for dad as he turns 80 and he wants her to come along for support. Whatever it takes. I sincerely thought I was going to need to sneak up on my dad with chloroform on a rag to get him in to see a neurologist. Once he'd seen the neurologist for a diagnosis and to weigh in as a professional on his not driving, I got him in to see a geriatric psychiatrist saying it was for a second opinion on driving. 

The other piece you mention are dealing with the changes in her personality and lifestyle. Sadly, that apathy is a large part of the early and mid stages of the disease. It's sad, but that is where she is now. Perhaps when things are safer, you could take her out weekly for a little retail therapy and lunch. Many PWD respond well to music from their younger days- play some and see if that engages her.

Jo C.

Hello TaraAggie; welcome to  this very supportive place.  What you describe is not unusual and it certainly does present challenges.

What I found is that in order to get my Loved One (LO) to any doctor's appointment, and especially to a Neurologist, was to never, ever point out to her that she had any memory issues whatsoever.   Most important was to never to use the words, "Alzheimer's," or "dementia."  Anything that even alluded to that, no matter how mild sent her into a monumental upset and refusal that lasted for quite some time.

It took me some time to learn a few offside skills to get matters taken care of.  First; the use of "therapeutic fibs," rather than factual truth gained us much ground for getting to adequate care and doing whatever needed to be done.

First; the doctor needs to know in detail what changes in cognition, function and behaviors are present; however, there was no way I could talk about my LO in front of her.  What I did was to write a detailed but succinct memo outlining all those changes in the spheres mentioned for each appointment.   I had this sent to the doctor several working days prior to the appointment letting staff know it was coming and was time sensitive to the appointment, and asked them to get it onto the doctor's desk asap.  I followed up to ensure this had been done.  The doctor needs the facts in order to be able to effect an accurate exam.  I also carried a copy of the memo with me to each appointment. I would find an excuse to "go to the bathroom," or whatever in order to ask the staff if the doctor had seen and read the memo.  If so, good; if not, I could provide the copy.

I also elicited the assistance of the doctor to get my LO to a dementia specialist which is very important.   Rather than saying it was for anything such as memory; the primary care physican  said it was an appointment for her back pain and blood pressure as that expertise was needed . . . . she accepted that.  (We also let the Neurologist know about that fiblet and he also went along that line during his exam.)   Having an exellcent Neurologist who sees dementia patients as a routine part of his/her practice really adds much to the healthcare team.  There are multiple different kinds of dementia of which Alzhiemer's is only one.  It is crucial to have an accurate diagnosis for dementia type as meds for one type can be contraindicated in another and make things even worse.  Our primary care MDs are awesome at so much, but they are not on the absolute cutting edge of dementia dynamics and this can make a difference.

Seeing an Elder Law Attorney is also very important.  We needed my LO to sign papers, but there was no way she would sign a Durable "Power" of Attorney; etc.  So, we clued the elder law attorney in, (he was experienced in this), and we did not call it anything other than, "Estate Planning."   That enabled us to get documents signed.  We had a Trust, DPOAs for Healthcare as well as Finance, Advance Directives, and HIPAA Waivers done.  You and your father may want to make the first appointment without your mother in order to speak freely and obtain advice should one need to move forward with a Guardianship should that ever become necessary.  The Elder Law Atty. can also situate planning to conserve assets as much as possible.  However; do keep your mother only on the simple side of things.  During this pandemic, many attorneys are willing to do much discussion telephonically on a conference call.  If you have CELA (Certified Elder Law Attys.) in the area, all the better for their expertise.  Certification can make a difference, but they are more expensive.

As for the driving, that can become a bit of an issue.  As already mentioned, this is an issue of not only safety of your mother, but also safety of others on the road.  Her judgment and reasoning is as you can see, is already compromised.   Her thinking has considerably slowed; she will not be able to react in a split second to danger, etc. We ran into this with our LO and it caused much difficulty and accidents; thank goodness, not involving anyone else, but the car was badly damaged. As mentioned, if she is in an accident, people are very litigious; if sued, medical records are always subpoenaed . . . . when there is a diagnosis of dementia that is a huge negative for the offending driver. One can lose much of their own assets in such a lawsuit and that is a preventable dynamic. One can notify the DMV confidentially and she will more  than likely be called in to take a written test and driving test.  The physcians can also be involved in assessing this.

As for the mani-pedi's; since we are in the midst of a billowing pandemic, can she be told that the salons are closing down for this service and even asking the salon for their assistance should she call . . . if worse comes to worse, then your father could drive her.

This is a process that takes us all on a long learning curve; you are on the first steps of the learning ladder, and you will soon find your footing.   My saving grace was being able to let myself use fiblets that were believable even though it was hard to do that at first, and in getting the paperwork done and then going one step at a time with a person whose behaviors were so unpredictable and often volatile. In all of this, your father will need much emotional support and as much assistance as can be given. 

The Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this assistance.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very good listeners, have much information and can often assist us with our problem solving.  Also, do read the link you were given for, "Understanding The Dementia Experience," it is an excellent bit of writing that illuminates so much; your father may also find this helpful, but best to read it in private so as not to cause your mother a meltdown.

Your parents are blessed in having suich a caring daughter, you are already a wonderful advocate on their behalf. We are all here in support of one another and  that now includes you too.

With warmest thoughts being sent your way from one daughter to another,

J.