Is this dad with a little alzheimers or alzheimers with a little dad?

mommo1029

Hi all -

Dad was diagnosed several years ago but lead a relatively normal and independent life until a couple of months ago, when some pretty serious med mismanagement landed him in the hospital.  He is now in an assisted living apartment and has spent most of the last month and a half trying to regain control of everything (medications which are now being managed, financial things, etc). He spends his days try to "fix" things, my brother and I spend our days either cleaning up or making sure he doesn't do things he can't undo.  The main services he is receiving are med management, daily weight monitoring for edema, and regular nutrition.  He still drives, and in the area we live, he is a safe driver (he has lived in this small area for 40 years).

We are at a point where he spends a lot of time super worked up about everything he feels he is losing control of.  He goes all over the place, setting up appointments, etc.  He tells us he is going to call his attorney.  And on and on.  Yesterday he independently made an appointment with his doc to go talk about getting control of his meds back.  That is not going to happen, so it was a futile visit, but as a result of that visit, the doc is contacting the dmv to have them require he retest to keep his license.  Dad doesn't have much of a social network and has been alone since my mom died 8 years ago - "going out and about" is part of his every day routine.  He goes for a drive, goes for coffee, etc.  But now we are seeing the very real possibility that he will lose his license since I suspect the stress of having to do the test will make him upset enough to not pass it.  Please don't judge for my concern about wanting him to keep his license - I am sure there are a million reasons it makes sense, but it still makes me sad.  Part of the reason the doc wants the license gone is that he wants to prescribe a med to help with the agitation, but my dad has some pretty advanced heart issues as well, and the doc can't prescribe the new med while my dad is still driving due to the possibility it will cause additional heart issues.

I guess my question/struggle is - yesterday he was raising hell all day long, going to appointments, trying to regain control of things, etc.  Today he is completely "normal", sending me a sweet text this morning, going about his normal daily business.  I have this fear that maybe we are overemphasizing the importance of the "bad" days and racing down this lane, when maybe the "normal" days are really more common and we are overreacting.  My logic tells me this is not true, because on the "bad" days he says and does things the dad I know would NEVER have done or said - it is just simply not him.

But how do I get past that mental hurdle?  How do I stop seeing hope in the good days?  How can I move toward certainty instead of constantly questioning where we are at in this process?  Ugh.

harshedbuzz

Hi mommo-

The standard advice here is to put in place a plan of supports and services to manage the worst day and just enjoy the ones when your LO isn't agitated and angry.

BTW, I love your dad's doctor for doing the ethical thing around his driving. My own dad's neurologist did the same which allowed us to validate his sense of loss rather than be seen as the source of it. 

If your dad doesn't have the executive function skills to safely manage his medication, he is too impaired to drive. Full stop. I will not judge you for wishing he could still drive himself places. Both of my parents had to stop driving- dad because of dementia and recently mom because of vision issues. I get it. I spend half my time driving mother various places and the other half listening to her brag about how she isn't a PITA about it as dad was. But if you let them drive I will judge you the same as if you left a drunk friend drive home. You also need to consider the financial consequences should he have an accident- he could lose everything.

To answer your title question, IME personality can remain intact well into the late stages of the disease process. My own dad was a challenging individual with untreated mental health issues- hell-on-wheels would be how most described him. Vestiges of that personality remained until about a month before he died.

HB

King Boo

It's hard.

But if you educate yourself about the disease by reading about stages, the disease process - it helps a lot.

This is a disease of decline.  We can hope for a plateau at certain stages where quality of life is better, but things go downward, not upward.   And, you know this, a few good days does not undo the erratic outbursts and inability for selfcare.  Many a family  member has talked themselves out of thinking Dad is very impaired, only to have something more disastrous happen, whether to himself, or to others.  I am glad his PCP is onboard with stopping driving because he could kill himself, he could kill others and all your money for his care could vanish in a lawsuit.  We faced this and it was ultimately the final straw.  It was not easy to see my Dad cry, but it was a necessary step.  

I am also glad his PCP wants to prescribe something for t he agitation, because it will make both his quality of life better and things easier for his caregivers.  Keep in mind, this class of medications may be better managed by an MD Geriatric Psychiatrist if you run into issues.  Right now, just grab it and hope it works.

Letting go of the past, the used tos, our best hopes, is part of the loss process for us children.   It is also the only way we become effective POAs and caregivers.

Take the 'normal' days as a fleeting gift; take the bad days as the true predictor of his care needs, and in your care decisions, allow a buffer for a sudden decline to the next stage.  

RobOT

Hey Mommo, this is such a touch situation.  I agree with Harsh Buzzed and King Boo completely.  My mother used to say she just wanted to go to the store for a loaf of bread.  Sounds really sad, right?  But think about who's in a parking lot:  people rushing around, distracted with cell phones, food, and children, thinking about the next thing they need to do.  Mom wasn't up to driving in that environment and I bet your dad isn't either.  The posts here are full of families and even close caregivers that crash into the reality that their LO is much worse than they thought when the LO has to deal with something out of their ordinary routine.  You've been blessed with a doctor who will help you.  Many of us struggled through months or even years of  stressful situations where we had no legal help or practical medical backup.  Maybe thinking of this as protecting your father from himself will help.  He's not the logical, stable adult he used to be.