Worried about my dad - no diagnosis yet, but I have suspicions

MedicalDaughter

Hi everyone, I'm new to this site, and this just is me getting my thoughts out in writing.

I am worried that my father may have dementia.  He is in his mid-60s and is in generally good health, except for some high blood pressure.  He and my mother live in Hawaii and I live in Virginia, so I see them only a few times a year, the most recent being last week when they were here for my graduation from physician assistant school. 

Nothing much seemed to be out of the ordinary during this visit, except for one day: The day after my graduation we drove down to North Carolina, where my brother lives and where my parents have a storage unit, and while we were there I drove them to the storage unit so they could do some sorting.  Dad was markedly not himself that day: quiet, somnolent, and not really seeming to hear me or Mom when we said things to him.  He is on a new medication (Doxazosin), which makes him dizzy and drowsy and is therefore supposed to be taken at bedtime, but he'd forgotten it the night before and taken it that morning instead.  At the time I chalked his behavior up to the medication and didn't dwell on it.

However, on further conversation with Mom (both in-person and over the phone), it transpired that he's been having some episodes over the last couple months, where he seems to get confused or forget where he is and what he's doing.  Mom said that when they were at the airport on their way to see me, he seemed utterly lost and like he didn't know what to do.  My parents are very frequent and seasoned travelers, so this raises alarm bells for me.  Today, over the phone, Mom also shared with me that there was a recent incident with a friend's boat where he nearly crashed it.  Dad is an experienced sailor, so again, this is alarming to me.  I'm unclear on whether all of these episodes predate the Doxazosin or not, and will be questioning Mom more closely in the near future about this.  But I am fearing the worst, and my mind has been in a whirl all day.

I am flying out to see them next month, after I take my PA boards, and I fully plan to observe Dad closely while I'm there and also do some close history-taking.  Hopefully I'm wrong, and all of these memory lapses will be attributable to the medication, but I am still attempting to brace myself for a very hard family discussion while I'm there.  Because it will have to be me who brings it up.  Besides being the eldest child, I have worked in the medical field in some capacity or other for more than a decade, including being a paid caregiver for a period of time, and I have seen Alzheimer's at every stage.  I know Dad, and I know that if it is left up to him, he is going to be in denial about this until it absolutely can't be ignored and we've missed the boat on starting medication early enough for it to make a difference.  I know that Mom will do her best to get him in to see a doctor, but he can be very dismissive of her and I don't foresee her efforts alone being enough.

I'm also thinking about the future.  I have a job lined up here in Virginia which I am due to start in early March.  I will be working full-time as a primary care provider, and with my student loan burden, I will absolutely not be in a position stop work and be a full-time caregiver.  Heck, with the nature of my work, I probably won't even have the emotional bandwidth to be a part-time caregiver.  I don't foresee my brother being able to take on the caregiving role either.  So that means finding AL or MC when the time comes - and do I try to find one here, where I could keep closer tabs on Dad, or in Hawaii, where he'll undoubtedly want to stay for as long as he can?

Selfishly, I'm also angry that this is happening now.  These next several months were supposed to be about me getting established in this new career and getting my life and finances ordered how I want them to be, not agonizing over whether Dad has Alzheimer's and what I'm going to do about it if he does.  I was supposed to have at least another 10-15 years before this type of decision-making had to start.

Thanks for reading, and thanks for any words of encouragement, solidarity, or advice anyone has.

Emily 123

Hi,

 Certainly dad needs an office follow up regarding possible side effects of his med vs. his periods of confusion.  If your mom can let his provider know ahead of time about her concerns that's going to be really helpful.

If you do get a diagnosis:  Your mom and dad still sound pretty active.  They don't lack capacity, so they should be able to chart what their future looks like.   It would be good to have a ''I see this so often at work where family doesn't know their loved one's wishes'' discussion.   If mom and dad haven't selected a POA ask them to think about it as well as filling out their advanced directives, and talk about what a worse-case-scenario would look like for them--if one has an incapacitating illness or the other is very frail. Ask how they're set for retirement.  Ask at what point they might consider moving closer to family?  Would they consider a CCRC that lets them move from independent living to assisted living as they age in place?  If they don't have a POA or advanced directives set up see if they'll visit a CELA (certified elder law attorney) to get that started.  

If your dad does get a diagnosis then it's just going to depend on how swiftly it progresses and what your mom wants to do. Very definitely don't let her make 'the promise' to your dad (I won't put you in assisted living/a nursing home, etc). 

This was helpful for me:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

https://tamcummings.com/stages-of-dementia/    There's a checklist you can download at the bottom of the page--this is for AD, where memory fails fairly early.  Vascular dementia presents a little differently, as does Lewy Body.

Iris L.

Welcome MedicalDaughter.  High blood pressure alone can impact cognition.  Medications can impact cognition.  Your dad needs close follow-up by his PCP.  He needs a thorough medical evaluation to investigate possible causes of what you are describing.  He might also need an overnight sleep study.  Read about the diagnostic process, because it needs to be thorough 

Iris L.

NizhoniGrrl

Don't assume the worst and that whatever happens will happen quickly. We noticed changes in my mom's behavior at least 10 years ago and it was diagnosed as MCI which may OR MAY NOT progress into full-fledged dementia or  Alzheimers.  She's declined, but only recently and she is in her late 80s. I do think you need to make sure all their affairs are in order financially and regarding future wishes (Will, DNR, Healthcare proxy, POA, trustee, etc.). You should organize a group visit with an Eldercare Lawyer toot suite because of their age and it is just better to put all of this in order early, long before you need it. So don't bring up health concerns as a reason, make it about sensible long-term planning, so it doesn't become about emotions or denials.

Once you have all of this in order, don't change your professional plans, etc. This will probably be a very long road. It's hard, but try not to panic!

Paris20

I agree that «getting affairs in order» is important. When my husband started to become more forgetful, my daughters and I made an appointment with an elder care attorney and followed through with all she recommended. I am very thankful we did. Waiting can make such tasks impossible. My husband is likely in the late middle stage but was diagnosed seven years ago. His decline has been slow but steady. He will be 79 next month. His grandmother died of the disease at 62.

Some of the O/P’s observations remind me of my husband’s early symptoms. He sometimes didn’t know where we were going, and he was driving! He started repeating statements and questions. Once, he almost killed us by changing lanes on a highway in front of another driver. The car beeped loudly and put a stop to what could have been a deadly maneuver.

It’s crucial to have your father evaluated by a doctor who works with dementia patients. My husband’s PCP first ruled out a couple of his meds that might have affected him. She ordered bloodwork and an MRI, gave him a cognitive test, and referred him to a neurologist, who made the initial diagnosis of MCI with the likelihood of Alzheimer’s, which is exactly what happened. 

jfkoc

I agree....learn everything you can about the diagnosis procedure. You can start with ALZ.org at the top of this page and then findmore online. You want to rule out anything treatable.

MedicalDaughter

Thank you for your responses, everyone!  Thanks especially for the reminder that the decline, if it happens, is not likely to be as swift as I fear, and that we still have plenty of time to do some planning for worst-case scenarios if it comes to that.  The first order of business when I visit in January will definitely be getting any medical/medication causes of my dad's symptoms investigated.  My parents do have their wills and advance directives already drawn up, but I can't recall whether they have a POA, so that will be something to discuss.  They are both retired, but still plenty active and with pretty much full capacity minus these recent episodes of confusion from Dad.

I'm glad I found this community. 

jfkoc

Please check to varify that the POA is a DPOA