75 year old father - newly diagnosed Alzheimers/Dementia

jraesacco

Hi All,

My 75 year old father was diagnosed last month with Alzheimers and dementia- moderate stage 5 out of 7. I am seeking some general advice as we are all fairly new to this disease but then also if anyone can relate to some of his habits. A few notes: He's a Vietnam Vet. He can semi hold a conversation and is starting to forget words/names. He lives with my mom who is sharp as a tack. He has "episodes" similar to SunDowners but his are in the early morning hours 3am-7am. He's becoming more and more paranoid of people stealing and my mom taking advantage of him. 80% time he is lucid enough to get by. Lastly, he refuses to take his new medication because he says he doesn't need it yet and now thinks my mom is secretly giving it to him. 

Our three biggest concerns right now:

Walks: He's started leaving the house to go on long walks. This last time it was because he was upset with my mom. This has happened twice that we are aware of and he wandered off once on a family vacation which seemed innocent enough in itself at the time. He knows we have a tracking app on his phone so this last time he ditched it in a bush "so my mom couldn't find him". We had to call the police and got him home safely after 5 hours (luckily and only). It was a traumatic experience on the whole family but he has no remorse or understanding of the severity. He called my mom a bitch and has no recollection of it. We're trying to come up with a solution to get him to wear a tracker without planting it/them on him. He refuses to wear a trackable watch and he's becoming more and more paranoid. We're worried if he finds one in his shoe or coat that he'll flip out even more. Any advice?

Traveling: My mom has several trips planned coming up for just the two of them. My father is very excited and talks about the trips constantly, pulls out his maps. They've travelled over the last few years with only one wandering incident on them, but that one was not on purpose like the most recent one. She's stuck in a pickle because she doesn't want to cancel them and be the "bad guy", she also wants to go and get out of the house, and she sees how excited he gets about them. He said today, if they don't go, "Then what I am living for?". This is such a broad/vague question but is traveling considered a good or a bad thing with someone with this disease? I see how much joy it brings him but also how much can go wrong. 

Money/POA: He wants to sell their house and move, thinks my mom is hiding money from him, and doesn't drive but is talking about buying a new car. How do we help my mom protect him from himself and their assets? Nothing has happened yet with any big money movements but I want to prevent if we can. Is there a specific Power of Attorney we need to have in place? 

Thank you for reading and considering. 

Jenny

loveskitties

Welcome to the place for support and information from those who know about this terrible disease.

Given your father's current reaction to your mother and his walking off, just the two of them traveling sounds like a disaster in the making.  It is hard enough dealing with these situations in a home environment, let alone traveling and all that entails.  I would advise you to talk with your mother about "what if" situations which might be encountered and see if she is prepared to handle it...things like going to restroom while traveling (him or her makes no difference...either way he is unattended)...what if he has a melt down in a public place and walks off...what is his behavior escalates due to unfamiliar environment (doesn't matter that he may have been there many times before)...and so many other things which can occur.

You mother needs to see an Elder Care attorney to make sure she gets their affairs in order.  She needs to have all documents regarding finances and medical set up.  She also needs to have documents regarding herself, which do not include husband in any decision making.

Others will be along to add more helpful info.

Best wishes to you all

mommyandme (m&m)

I’m so sorry you find yourself here, but welcome.   My first thought is they might still go on the trip(s) but they need to take someone else along to help.  Preferably a male so dad can be “supervised” in the men’s room.  Maybe another couple?  

I wish none of us were on this journey.  

SusanB-dil

Hi jraesacco - Welcome to 'here', but sorry for the reason.

Do not try to reason with him is one of the Rule #1's. It will only leave everyone frustrated.  Also Rule #1 is that any caregiver will need a break.    Check out the 'solutions' tab above the postings for some ideas, and check the archives for some excellent advice.  It also sounds like he has anosognosia.  It is not denial, but rather, the firm belief that nothing is wrong.  He was just diagnosed, so no doubt you have seen a cognitive shift for some time. He may be farther along than realized, as paranoia is usually well into mid-stage.

Do check out the 7 stages. It might give you a better idea of where he really is with this horrid 'thing'.  https://www.alzheimers.net/stages-of-alzheimers-disease

Important to have POA in place, as well as HIPAA authorizations. Without HIPAA authorization, you could still talk to his doc and tell them the issues, they just cannot comment back to you.

As far as travel - whew! It depends.  So your mom will be travelling alone with him...  This could be an issue if he takes off on her, and is refusing to be tracked.  If medication cannot calm this down, maybe a fiblet would be better? "Flights and other transportation cancelled due to covid?" a lot of flights are being cancelled right now due to lack of help... 

NuttyProfessor

So sorry to hear about your troubles with your father...this all sounds unfortunately very familiar.

Your mother needs to get a DPOA in place asap.   If the financial situation is uncomplicated (e.g. there's no family business or trusts, just savings & retirement income), you can get standard documents online very inexpensively  (e.g. Legalzoom), or go to a family attorney.  Elder care would be great but not necessary.

Unfortunately, your father may refuse to sign the DPOA, in which case the only option is to apply for financial guardianship at the local family court.  In my area, that process takes a year due to short staffing in the wake of COVID policies.

It'll also be important for your mother to get joint ownership of all of your father's financial assets, if she doesn't already have this.  Visit banks to ask what their process is for this.

Now we come to the two major clinical concerns:  the wandering, and the anger episodes.  Your father's episodes sound a lot like what my mother went through - they're not the typical "catastrophic reactions" caused by anxiety, they're frank psychotic episodes, that come and go abruptly and out of nowhere.  My mother was always completely amnestic for these episodes; once they passed, a minute later she would have no  recollection of them at all.  We had a VERY hard time with this for about a year, but that's now passed thank heavens.   There are a few measures you can take that are helpful, but mainly it's going to be about gritting your teeth and bearing it:

1. Don't EVER disagree with or argue with your Dad.  He is not ever going to be swayed by logic, which he can't really follow anyway.  Learn to tell white lies, e.g. "Yes of course Dad, you're absolutely right, we'll take care of this by tomorrow."   And learn to apologize, as in "I'm so sorry Dad we definitely shouldn't have done that, we won't do that again."  Basically take this attitude:  he's the boss, and your job is to do what he wants.

2. I found that the best way to calm my mother down when she was in the grip of a psychotic episode was for everyone to leave the house.  As in, don't let it get to the point that HE leaves the house - you and your mother should leave instead.  I put in Ring cameras so the aide and even distant family members could watch my mom remotely, in case she fell or took it on herself to turn the stove on or whatever.   We were lucky enough to find a private aide who was not only willing to do this, but was very familiar with this method from previous clients.   My mother threw her out of the house every afternoon for the first couple of months, and she'd simply walk to a nearby Starbuck's and come back an hour later with a blueberry muffin. My mother was always pleased to see her, having completely forgotten the incident.

3.  Try an antipsychotic medication.  Your primary can prescribe. My mother had a paradoxical reaction to Seroquel, but Risperdone really helped reduce the frequency & severity of the episodes.  These will not address "catastrophic reactions" caused by anxiety, which are very different.  Also, beware the side effects, like muscle rigidity.  This limited the Risperdone dose my mother could tolerate.  Adding CBD oil did very well at giving us complete control of the episodes, and without side effects.  We found that large doses, similar to those used for epilepsy, were needed (i.e. 100-150mg per day minimum, can go as high as 1000 mg/day).   I have in fact wondered if these psychotic episodes are seizure manifestations, given the known link between Alzheimer's and temporal lobe seizures.

Lastly - does your dad wander at night while everyone is asleep, or is it always triggered by something happening during the day?  Nighttime or un-observed wandering could be dangerous.  My sister's father in law froze to death after wandering outside in a Minnesota winter, so this is no joke.  Set up a door alarm that can be activated at night.    Or consider professional installation of sensors.  For GPS tracking...I came across one that is built into a shoe insole.  Or sew a GPS tag inside the lining of his coat.

Finally something to be aware of:  unfortunately the presence of psychotic episodes is associated with a more severe/rapid disease course.    I also noted that COVID vaccines caused an abrupt, dramatic worsening of my mom's dementia AND a dramatic uptick in the psychotic episodes for a few months after each one.   Curious to know if you've observed this with your dad.

NuttyProfessor

p.s. definitely I would not attempt to travel with him.  Taking him out of his familiar environment will make everything much worse.  And, count on something going wrong on top of that.  I know lots of people who have traveled, and something bad (cancelled or extremely delayed flight, lost luggage etc) happened in nearly every case.

Like the idea of fibbing to say the flights were cancelled and you'll have go sometime later.

jraesacco

Thank you all so much for your time in responding. This is all hard but great information for myself and my siblings. I have three older brothers (we are all married and range from 34-44 years old)... Things have come to a head with the "running away from home" incident earlier this week and we are all trying to work together to come up with solutions - while being on different pages in terms of acceptance of where our Dad is at with this disease. We have a very long road ahead but greatly appreciate the support. 

The restroom situation, something I/we haven't even considered- thank you. He hasn't had any issues like that before so it's something we haven't thought of. 

@Nuttyprofessor- thank you for bringing up the stories about your own mother. It helps tremendously to hear that he/we are not alone in his situation. The times he has left the house have been at 3am and 7am - so the timing is definitely a concern if we are sleeping. It's only my mother that lives with him. 2 siblings are 15 mins away from them, I am an hour drive and our 4th sibling just moved out of state. They have a whole gambit of security systems in place (camera's, sensors on doors and windows)... the security system alerts my mom by sound when anything is opened. We don't usually look at the cameras until after something has already happened and try to piece things together. My brother and mom have access through their apps - I believe they are Arlo cameras. We'll be looking into how to better track/get alerts on those. Him wandering off in the middle of the night is a HUGE concern. And now it's happened twice. I hate to think of the possibilities and with winter coming up. 

We are going to meet as a sibling group next week to try and get on the same page as to how to approach our Mom with our concerns. She still wants to make this trip happen and thinks it's reasonable because he is back in his "normal/calm" state of mind and she wants to travel while they still have the time/can. I feel that time has already passed. From my research with the stage that our Dad is currently at, he is no longer lucid. He is no longer himself. He can no longer make decisions. I've voiced my concerns and she says that she understands where I am coming from.

I fear we will not be able to get him to take any of the new medications (Anti-pyscotics included) in his current state because he has a set number he takes a day and he knows what they look like. He said he doesn't want to take the meds for his Alzheimer's and that's what lead to him thinking mom snuck them in and him leaving the house. I hear your #1 rule, there's no reasoning with him, but he's not gone enough for us to "trick" him yet either... I feel so wrong wanting that time to be here sooner so we can help him 

jraesacco

I am learning how this chatting system works!

@Nuttyprofessor- also, we have not associated the covid vaccine timing with any upticks in his behaviors. But that is concerning to hear, in general, but then also they just talked about getting the covid booster before they go on this trip

M1

jraesacco, there are liquid formulations of some of the antipsychotics that you could put in drinks and he therefore never knows he's taking them.  May need to happen.

Just as a general observation (not meaning to be critical), I would tend to put stage 5 as late stage disease.  Paranoia is certainly a late stage symptom.  Have you all spent time with them in their home to see how he's actually functioning or not functioning?  I wonder if some excuse to spend a night or two or three would help with your observations and would also give you more insight into how your mom is or isn't coping.

Agree with all that's been said about getting POA and control of finances in place asap.  Many here have lost huge amounts of money. Computer access/phone access is another issue (technology in general).  As for the travel:  very iffy.  I was able to travel with my partner three years ago when she was stage 4.  Hard to disappoint, and a really huge judgement call.  Agree with the suggestion to see if you can talk to your mother privately to walk through contingency situations.  If any of these involve plane travel, do they have travel insurance?

NuttyProfessor

jraesacco, every time you post I feel like deja vu all over again!  Your father sounds a lot like my mother, except my mother outlived my father and started this journey while living alone.   It's a blessing that your mother is there to take care of him, but I agree with other posters:  it's important to determine how much she can really handle.   Staying in the house a few days would help you get a handle on exactly what kind of help is needed.  BTW a tip about meds:  tell your dad they're "vitamins", or that they help some minor physical ailment like back pain.

Did those 3am and 7am wandering incidents happen before or after you installed the door sensors & alarms?  I'm interested to know if these devices somehow failed.   It may be time to consider an overnight sitter.   This might help your mom get quality sleep....she probably is really anxious at night now.  Also, his sleep schedule is probably off, or it might become so in the near future.   Another possibility is a live-in aide who doesn't mind being woken up occasionally.  This may be cheaper than the overnight aide, and can help with housework and take some of the load off your mom.

If your mom and Dad are going to get the COVID booster, do it at least a week before traveling in case of side effects - by all accounts, the side effects worsen with each successive shot, so you can't go by prior experience.   If the travel is really necessary.  I can foresee a million ways for that to go horribly wrong.

I truly wish there were a useful guidebook to arranging home care for Alzheimer's.  There's really very little out there in the way of helpful info.   I've read all the standard books, like the 36 hour day, but I have not found them to be helpful - it definitely feels like it was written by someone who has never been up close and personal with an Alzheimer's patient.  This forum has been much more useful.

MN Chickadee

Expect his cognition to be worse traveling. Between the stress of air travel and being in new settings his brain just won't fire the same. Even his ability to use the bathroom may be different, let alone wandering. Given that he has wandered at home I would be very concerned. I would do everything possible to either stop the trip, or send an extra person along at minimum. Buy door stop style alarms for the hotel room. However he acts on his worst days expect that to be the norm during travel. 

I would stop talking to him about Alzheimers. Let him forget he has it, he will. Don't reason or present evidence, it will only make him resent you. You have to find the right therapeutic fibs. Maybe the trip was cancelled because of covid or the pilot shortage but you will reschedule it soon. If he doesn't recall the dates say it's "next fall" and keep kicking the can down the road. Maybe the doctor appointment is a check up Medicare requires or a quick blood pressure check and not a neurologist.  Maybe that extra pill is Fish Oil, haven't you seen that new research that say sit's good for your heart? There aren't any new cars to buy due to the supply chain issues. We'll look next summer. Consult the pharmacist for any liquid forms and ask which pills can be crushed. If some pills for other issues can be crushed and hidden in food you could substitute with the ones that have to be taken in pill form. Also evaluate if all current pills must be taken, given he has a terminal illness. If there is one you can stop you could secretly replace it with his very essential pills for mood that make quality of life and caregiving better. 

With winter coming you will have to find a way to stop the walks. So much risk there and he has already given you a warning shot more than once. Again try  fibs. Distract. Go on your walk later, come help me with xyz first. Send someone to walk with him. If he is angry to the point you can't stop him from going it may be time for medication intervention. Perhaps that piece will improve once you are getting all prescribed meds into him. It sounds like your folks are very close to needing either round the clock help or placing him in a facility, to be honest. Having a heart to heart with mom, laying out the risk in what is going on, how these things need to be done not only for his safety but also to give both of them the best quality of life possible in his final months and years. Explain you are all on the same team and are just saying all this because you care for her so much etc. Hopefully you can get through to her. Good luck with the journey. 

Rescue mom

On the traveling…my DH and I travelled all over the world, both for work (separately and sometimes together) and pleasure. It was what we did, and wanted to do.

Our last 2 trips became nightmares; long weekends to a place we’d been before. DH said he wanted to go, and so did I. What I was totally unprepared for, gobsmacked by, was how many abilities and functions he lost in a “new” place. Things he could do at home, he could NOT do away. Even very basic things, like finding the bathroom in a 3-room place, or dressing himself, or even finding his clothes on the one set of shelves. The list is endless.

After one day, he wanted to go home. And I was beyond exhausted at having to do everything, things he could do at home. We left the next day. He said he never wanted to leave again. The day after that, he’d forgotten the whole thing.

I thought that might be an outlier, so we did another long weekend. Again, he wanted to take the trip. And again, once there, he lost so many functions/abilities. Including being able to find or recognize our car or place, get himself a glass of water, shower. He cried to go home. So we did.

I heard later you should expect them to decrease by at least one stage. It never occurred to me. I thought he’d do what he did at home. So Wrong.

We actually did another couple trips he insisted on going, with friends/family. That absolutely was easier for me, and he did better with so much immediate help. BUT they all tired very quickly of spending vacation time dealing with a PWD. They said later they thought they knew, but they didn’t.

This summer I took some trips without him. On two flights, I saw PWDs having a total meltdown, both needed security and EMS help. One plane was delayed 40 minutes. While people/strangers are incredibly helpful IME dealing with a PWD problems, on a plane delay…not so much. 

 In both cases, the companion was yelling “she’s never done this before” and how they traveled a lot before, and she was fine. Etc.

Many people here have traveled well with a PWD, although IIRC,  most had helpers along. I’m sure they were all stronger than I was. But for us, it was awful.

But as I said, I was caught completely by surprise. If I’d had enough sense to expect what could or might happen, it might not have been so bad. So..just be aware.

And..what if your mother has an accident, or gets sick, or needs hospital for any reason? At least think about the possibility. 

Lindsay22

Hi Jenny, 

I know you are in the stage where there is so much to learn and understand and I don't want to overwhelm but I did want to add that the time to begin your process with the VA is now.  You mentioned that your dad was a Vietnam vet which means he will be entitled to additional benefits for his care.  It is a process to get there so I recommend you start now.  Again, an elder law attorney can point you in the right direction. There are services which help with the applications.  I did it myself but it was very difficult and I'm just (hopefully) nearing the end of an almost 2 year process.  If you can accompany your mom to the attorney's appointment that would be best in my experience.