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Struggling to talk to Mom

Hello. It's been about a week since my Mom was officially diagnosed with Alzheimer's. I'm overwhelmed, of course, and trying to find answers to the countless questions I have; trying to learn how I can do everything that needs to be done. At this point I'm really not sure how to just talk to her about everything & make her understand.

The doctor explained the test results to us & showed us the MRI images of her brain. But when the diagnosis was given, Mom argued... "what makes you think I have memory problems?!?" The doctor replied, "well... all of these tests we've been doing for the past few months." It just didn't sink in. My sibling & I have been talking to her about our concerns for the past year or so, and she's surprised every time we bring it up.

Two days after the diagnosis I sat down to talk with her, hoping to have a conversation; I said, "remember that doctor's appointment the other day?" and she replied, "oh, yeah, for my bad hip?"

I'm lost here. I'm not sure if I should keep trying to make her understand (writing a letter to her and taping it to the fridge, having repeated conversations with her), which creates stress in the moment... OR, should I just assume that she's NOT going to understand it and move forward without her input (finding a MC unit, etc.) and brace myself for the inevitable stress, pain & anger she'll feel when that day comes?

It's complicated. She's independent, and has lived alone in a rural area since my Dad abruptly went to a care facility 2 years ago. She's even been cleared to drive locally after 2 sessions with OT driving evaluations. Basically, she's functional enough to live a life of grocery store runs & television... but I know that's not going to last long. 
I realize everyone's experience is unique & there's no blueprint to any of this, but does anyone have any similar experience to this? Any opinions to offer?

Comments

  • jfkoc
    jfkoc Member Posts: 3,979
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    Hi and welcome.

    The first question, and one that you will ask many times, what value does my mother understanding have.

    Truly, I see no reason to tell someone they have a lousy terminal disease especially when they are not really not going to remember but that is a decision you are going tohave to make.

    What needs to be done legally and financially at this point can be done with little to know comprehension by your mother.

    In the meantime please do not borrow trouble. This journey is individual. Many of the situations posted her will not be a part of your life. 

    Live each day looking for the positive. Not always easy but a good goal. Then learn all   you can about dementia and how to best care for your mother. 

    We are by your side, loaded with information and ready with support.

  • M1
    M1 Member Posts: 6,788
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    Hi effort.  I remember that when I first suspected my partner had early Alzheimer's in about 2014, I talked to our PCP about having a "come to Jesus" conversation, during which I thought she would have an "aha" moment recognizing that she had dementia and would therefore need to defer to me on all major decisions, etc.  Our PCP laughed at me, literally.

    There is no having such conversation, for most families.  Rarely do people with dementia actually know they have a problem:  look up "anosognosia," which is the inability to recognize the deficits; 70% of PWD have this.  Seven years on, and my partner is now in stage 5 of the disease, and most of the time she still cannot/does not acknowledge there's a problem, and I do not try to tell her.  It just starts arguments, and I have learned to just work around her and quit expecting her to understand.  As others here will say, her ability to reason is gone--her brain is broken--and you will make life easier for yourself if you just do what needs to be done, as you would with a toddler, and don't try to reason with her or expect her to understand.  this is easier said than done, of course, and takes practice.  

    If you haven't already done it, first order of business is to get her legal affairs in order:  you'll need a durable power of attorney for her, while she can still consent to it, and power of attorney for healthcare too.  If you think she will need to apply for long-term Medicaid in order to be able to afford memory or nursing home care in the future, now is the time to start that planning: look up certified elder law attorneys in your area at nelf.org.   

    Second order of business frequently has to do with driving.  The question, when she's been cleared like your mother has, is when does she need to be reassessed.  Better to stop driving too soon than too late, for sure (there are many threads on this), but as we also live in a rural area, I understand how hard this is (still an issue for us on occasion, I have to hide keys/disable vehicles/lock the gate etc.).

    Other questions that will come up will relate to how long it is safe for her to live by herself.  How close are you phsyically, can she still use a phone reliably (what about scam calls?), and who is watching her money.  Financial difficulties are incredibly common, and you don't want her to lose funds that she might need for her later care.  Better to take these over sooner rather than later also.  If you haven't actually spent days or weeks with her, it might be good to go stay with her for at least a few days, so you see what the actual functioning is like.  You may be surprised that it's worse than you thought, that's freqeuently the case.

    Good luck, I'm sure others will chime in.  But the short answer is, do what you need to do, and don't expect her to understand or agree.  

  • zauberflote
    zauberflote Member Posts: 272
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    Hi effort-- jfkoc and M1 have told you much of what you'll want to know. We never said anything to Mom, whose dx was, I believe, by observation of her PCP. I only knew it existed because I took her to an appointment once and there it was on her notes, along with her allergies and cholesterol meds. I never heard that the PCP had talked to either her or my local-to-Mom sister. 

    We moved her to my city to a place that, unlike her previous AL, had a big sign out on the street, with "Alzheimer's Care" being among the words prominently displayed. One day coming back from an outing we had the awful luck of a red light at that intersection, so the sign was not 8 feet from her face. She miraculously regained her ability to read, and turned to me with terror in her eyes, asking, "I don't have ALZHEIMER'S, do I?????"  I had to tell one of the baldest-faced lies I've ever told, when I answered "not to my knowledge, no! See there, it says Assisted Living, that's you!" Luckily the light changed and I could talk to the traffic to distract her. 

    I have seen on here threads about people having luck discussing with a parent, but all too often anosognosia has come along and made any discussion moot. A necessary (if unsettling) attitude to adopt soon will be that you now must act as your mother's parent. 

  • ​fesk
    ​fesk Member Posts: 479
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    You already have a lot of good advice. I agree that trying to make her understand will not work. Depending on her current abilities, you may have some success framing it differently - that you concerned and certain changes need to be made. Also, I would recommend trying to let her have as much input as is reasonable based on her current abilities throughout this entire process and in general.
  • caregiverstudyusc
    caregiverstudyusc Member Posts: 13
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  • Lindsay22
    Lindsay22 Member Posts: 85
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    I don't think I have ever used the work "Alzheimer's" in front of my mother (we are 4ish years in).  Even at doctors appointments I talk about "cognitive issues" and "ADLs".  I remember when a doc first showed me the MRI and described my mother as "a person with brain damage".  That helped me to shift my thinking.  If someone had a brain injury from say, a car accident, would I repeatedly try to get them to understand that they had brain damage when they were unable to comprehend? What good would going over the facts of the crash and the nature of the injury do? You would focus on the treatment and what needed to be done for that person's well-being.  This is the same situation although it is initially very difficult to think of it that way.
  • King Boo
    King Boo Member Posts: 302
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    QUOTE: "should I just assume that she's NOT going to understand it and move forward without her input (finding a MC unit, etc.) and brace myself for the inevitable stress, pain & anger she'll feel when that day comes?"

    Yes to the above.  And kuddos to you for realizing this early on that this is the best way to go.

    However - don't  be doom and gloom about anticipating her reaction when the day comes for a care facility.  As decision makers, it is hugely stressful.  And on the boards, we hear about the most difficult transitions.   Some of us have had very smooth transitions.  As in, once I was there with my LO, had lunch, settled him in, said I'd be back tomorrow - he was pretty good to go, needing only the reassurance of seeing me a few days in a row.  Until he got his schedule down.  Then, it became a "why are you here?  go home, you're messing with my schedule" type of thing.  Within 2 weeks. 

    It does happen.  The relief for my LO - hey, people are kind of nice to me here, I get to watch TV, be left alone, someone helps me in the bathroom, there's great food at the exact time each day, and I'm younger, healthier, more good looking than all these other people.........

    well, that was our trajectory.  Not too bad.

    Care needs drive the decision making.

    The best answer is the one that brings the most comfort to Mom and gets the job done.

    If you don't have your documents in place, a CELA can help you www.nelf.org.

    Do this before time passes or you will have issues.  Let the attorney do the talking - make it about helping DAD.  "giving us the tools to help Dad.  

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more