Questions(5)

o2bmtg

I’ve been on a pathway to diagnosis for several years now with my mom. And the day that I’ve been scare of every day arrived. My mom’s neurologist called and said it’s Alzheimer’s. And it flattened me. We have an appointment on Tuesday and he’s going to tell her the diagnosis at that point. He told me to bring all of the questions to the appointment. 

What questions did you ask? What did you wish you ask or did sooner or at the time of diagnosis?

Bonus - if you have any tips for how I, the sole millennial caregiver, can help my mom through the day when she gets this news, I’d be very grateful. 

Rescue mom

How much do you think she will understand when she’s told? My DH with Alzheimer’s was not typical, apparently. When the neurologist told us, he just shrugged it off and said “at least it’s not brain cancer.”  He freely admitted, before and since, he couldn’t remember things (I knew it was more than that, but no point in beating him over the head with it).

In hindsight, I think he did not understand what Alzheimer’s meant. He read and re-read for days all the written Dx we got—or, he looked at the pages, but now I think he did not understand them. He had no questions, no reaction. For years he was quite fine with saying “I can’t remember” or “she handles that” pointing at me. 

The only things the neurologist did was tell me to find caregiver help, and support groups. He also gave Rx for the usual 2 Alzheimer’s meds, with a caution they did not do much, and did nothing for many people.

Every question I had involved DH dementia behaviors, which the docs can’t help much with unless/until it’s extreme. I suspected Alzheimer’s so I did some research on the  disease itself before the Dx. It’s the odd behaviors and lost abilities,, which differ like people differ, that were so problematic.

Keep reading this forum, look through all the postings. I got far more useful advice and knowledge here than from any medical person.

Some people say it’s better not to tell them because it upsets them. I personally cannot imagine not telling him something that big once, and if it upsets them, then leave it because they can’t do anything about it. That’s a very individual matter.

If you do not already have all the paperwork done such as DPOAs, wills, taking over finances, health care directives and permission for you to get or know what her doctors tell her, you need to get that ASAP, like yesterday. We did that earlier as part of financial planning.

Unless you are fairly wealthy, it’s also advised to start ASAP looking into Medicaid—not care, but aid—for long-term care, which you may know is extremely costly and not generally covered by other health insurances. There’s another thread here recently about how that should be done the minute you hear/think dementia or Alzheimer’s

Nobody is physically (or mentally r emotionally) able to handle 24/7 caregiving alone, for very long. If she doesn’t need it now,,she will, probably sooner than later. But speed of progression, or what functions are lost when, are almost impossible to predict. I thought the neurologist could do that, now I know they just can’t. I assumed at first reading you live together, but maybe not (?)

harshedbuzz

o2bmtg-

Hi and welcome to the best club nobody wants to join. I am sorry for your reason to be here, but glad you found the group.

Not all neurologists will share the Alzheimer's diagnosis with their patients. Some feel giving a person a terminal diagnosis when they don't have the cognition to process that is unnecessary. For some it can lead to depression or failing prey to quackery.  Other docs feel a patient has a right to be told. Dad's doctor told him he had dementia and specifically what types at every visit. My aunt's and my friend's mom's doc only every referred to their condition as "memory issues". 

I feel what dad's neurologist did was right for him and our family dynamics. YMMV. The doc also told dad he could no longer drive or manage his finances which was a godsend as it allowed us to remain his allies and validate the unfairness of the situation vs being the bad guys. It seems most neurologists don't offer an opinion on this unless asked- so I would absolutely ask if mom is safe to handle her finances and drive.

I would also check with her auto insurance agent to be certain her policy would pay in the event of an accident with an Alzheimer's diagnosis in her medical record. 

I would ask the doctor what stage your mom is in. Most doctors use a 3 stage- mild, moderate, severe- model while most posters here used a 7-stage one. You may find s/he doesn't think your mom is in the same stage as you suspect; sometimes PWD showtime which can lead even doctors to think they're more capable than they really are. Depending on the answer, you might want to ask if it is safe for her to live alone. 

Stages of Dementia Dr. Tam Cummings

You should ask about medication. There are a few medications that help manage symptoms for PWD; they don't slow down the progression of the disease but they do seem to improve function and quality of life for some individuals for a period of time. 

You didn't ask, but these are also useful-

This is one of my favorite reads on dementia as it addresses more than just memory loss in dementia-

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

If your mom hasn't put a POA and other documents in place, you'll want to arrange that asap. It's best to see a certified elder law attorney-

National Elder Law Foundation (nelf.org)

Good luck. This is hard stuff.

HB

May flowers

I’m addition to the suggestions above, I think that knowing what stage can be helpful to gauge whether to tell them. My FIL was told he had dementia at an early enough stage that he put some things in motion to help himself down the road, such as giving my DH POA, and my BIL as a backup POA. He worked with my DH and financial advisor (whom he trusted a lot) to protect his financial affairs. He started writing everything down to help himself remember things (post it notes everywhere). At some point that didn’t help, but it did early on. He had phone numbers written down by every phone. He helped us pick out a good AL/MC with us - the move was still hard but we had the reassurance that when he was able to judge, he liked the place.

But, if it is middle or later stages, telling them probably won’t do much good.

Two things to get ahold of early - finances and driving. Getting ahead of both of these will save a lot of headache down the road. My FIL’s neurologist gave him a driving simulation test in office and based on that, he told my FIL in no uncertain terms that he should no longer drive and that he was a danger to others. My FIL took that to heart and handed over the keys. He was not willing to do it before that talk.

toolbeltexpert

o2bmtg  the only advice I can offer for that day your mom gets the dx. make sure you tell her that your there for her, you love her no matter what. I think that's the most important thing that you can do that day. I know this already cause your already caring for her now by being here, Not sure how old you are  30 plus, you are starting a new journey with your mom, but there sure is a lot of good life to be lived. Praying for you and your mom.

Rescue mom

Just wanted to add a couple things…many people—certainly family—starting on this journey see the word “terminal” associated with Alzheimer’s and imagine the worst, soon. But while it is not curable, many caregivers here have been actively caregiving for more than 10 years. The neurologist told us he’d likely die of something else before Alzheimer’s, and his health otherwise was good.

Somewhat related, my DH was midstage when he got the Dx and he undoubtedly did not understand it. One reason the Dx took so long to get was that he could “showtime” (as mentioned above) really well. People who saw him for just 30 minutes or so often did nt know how impaired he was.

Phoenix1966

To repeat harshedbuzz, see an elder care attorney as soon as possible if you haven’t already done so.

Please read the first post in this thread by Crushed:

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147560380

He is 100% correct about the urgency here. 

o2bmtg

Thank you for all your replies. I’m all set for power of attorney. It’s been done for a very long time. I am focused on just trying to get through the appointment and asking the right questions and focused on my mom. Thanks!

Iris L.

Please read about and understand anosognosia, which is present in about seventy percent of PWDs.  She very well may resist and insist she is fine.  On the other hand, she may become very depressed and scared.  Reassure her that you will be there for her and that there are steps to take to help her on her journey.

Iris

sandwichone123

Adding to Toolbeltexpert's comment: do not make promises for the future beyond loving, being there, caring, etc. Some families promise never to put their loved one in care, not knowing what the future will look like. Then if their loved one needs placement they feel guilty.

jfkoc

I think the very most important thing to do is support your mother. You need to listen and validate her feelings. Please to not dismiss her fears. Acknowledge them do not simply tell her everything will be OK ...I will take care of you. 

Follow your mother's lead.

loveskitties

I noticed one of your posts and on some of the responses that a POA is in place.

Please make sure that it is a Durable POA, which is still valid in case of mental incompetence.  A "regular" POA usually does not continue in that circumstance.