Coming home with newfound cognitive impairments (when u think ur fine)
January 8, 2024 8:49 AM   Subscribe

Any tips for breaking it to a very independant 78 year old that he is not/cannot likely continue the lifestyle he had before he hit his head? He's been in the hospital for a month, but lately often thinks he is on a cruise. We and his doctors have been mentioning some of the major lifestyle adjustments he needs to make while he's been in recovery, but he forgets a lot. He's coming home Wednesday, and we are nervous about his access to iphone, computer, his bills/paperwork, his car, and umm booze. Snowflake filled saga inside.

Previously. Previouslier

Really the big question is above the fold, but here’s all the details if you don't mind a wall of text. We are 100% in touch with the local office for aging, all the lawyers, and hopefully an eldercare case manager. This question is more about the interpersonal stuff.

TL;DR on previous questions is that my partner's wonderful 78-year-old dad has been the sole proprietor of an at-home-nursing-home-for-one, Namely his lovely wife Mrs. 78, who has has progressively worse dementia for ~10+ years and is lovingly cared for at home by her husband and a small staff of ladies 24/7.

Mr. 78, took a nasty spill a month ago, hit his head real bad, and has been in the hospital for the last 4 weeks- ICU a couple times, 2 weeks in an Acute Rehab unit getting Speech Therapy, Occupational Therapy, and Physical therapy. He had a pretty major brain bleed from the head injury. A plot twist is that he went through pretty severe Delirium Tremens from alcohol withdrawal in the hospital and survived it. (Thank you, Metafilter for making me aware that might be a thing so that we could alert his doctors.)

The doctors tell us that he has Moderate to Severe Cognitive impairment. In spite of the giant WOWTOWN HOSPITAL sign on his wall, he is quite sure that we are on a cruise ship, or at a hotel, but this is better than last week when the thought we were in the living room of a long-deceased friend. He thinks his son is his brother at least half the time. He is still a great conversationalist, in that way where jolly drunk people can be good at feining sobriety. He wakes up most morning needing to be reassured that his wife and the dog are at home and being well cared for, and every night we have to tell him that he is not going home as he tries to pack up all his stuff. It's heartbreaking, but we manage to make jokes and laugh and the hospital staff has been wonderful. Mr 78 finally started eating food after about 3 weeks. The PT has him using a walker, and they're impressed enough with his performance on the stairs that he is cleared to stay upstairs in his bedroom if we get a second rail installed.

Luckily my partner is the POA and we have to moved quickly to keep the financial affairs in order to get ready for whatever is next in anticipation of Mr 78 needing a lot more help. Blessedly, they both have a type of excellent long term care insurance that they don't sell any more, but you have to pay out of pocket for the first ~90 days.

So far, we have accessed Mr 78's computer, gotten into his broken phone & email for 2FA as we track down accounts. This was no easy feat and it's gonna be an ongoing nightmare of paperwork. The only reason any of the last month was doable is that Mr. 78 kept well-organized files on paper and more or less had all the majority of his passwords written down.

The home care people tell us that would spend all day doing paperwork, paying bills and submitting receipts to get reimbursed from the insurance. He'd drive to town a couple times a day for the newspaper, he'd go to the grocery store, the pharmacy, etc. He would putter around the garden with the dog. He had a very active social life, often having lunch or dinner with his neighbors & friends, and cooking dinner for Mrs 78 if he was at home. Somehow he also managed to spend $300/month at the local booze stores, and one of the home care aids told us that he routinely had vodka with his morning orange juice. Starts to explain his poor appetite, propensity to fall down, and all the little dings on his car. Ayiyi.

Back at the hospital, the doctors and the speech therapists have told us that he should DEFINITELY not drive, and DEFINITELY should not drink, because another fall will kill him. He probably shouldn't really use a smart phone or the computer unattended (can't really walk around unattended either tbh, but he forgets). Mr 78 will chime in when we are chatting with the doctors and therapists about his condition, but he often seems to think we are talking about his wife or some other patient, he is not the impaired one.

As his condition has improved he has been asking more and more for his phone, his laptop, money for a cab to get out of here... We've been able to dodge this telling him that his phone is broken, and that the place we're at is all inclusive, and the hospital staff has been amazing at helping redirect him. He is still lovely to them, but but definitely tired of the hospital staffers tasked with following him into the bathroom and complains about his lack of privacy. Alas, That's not really going to stop at home. Because of the fall risk and his confusion, he is going to need dedicated 24 hour caretakers at home.

The at-home-nursing-home-for-one has to become an at-home-nursing-home-for-two, and patient number two is a lot more likely to bristle at this new reality.

We are busting our asses to get the house ready for his return, and we are definitely anticipating that he is going to really feel a way about it these new lifestyle limitations and would like wisdom from the crowd on helping him let go of that stuff with dignity: using the iphone, doing his paperwork, working on his laptop, driving, quick overnight trips to his apartment in the city, functional alcoholism...)

To some degree his cognition is improving, but I can't imagine we'll ever feel safe leaving him in charge of the at-home-nursing home again, as he is firmly a patient now. We also found some slippage in stuff like car maintanance and bill payment that could be explained away by stress and the holidays, but also doesn't inspire great confidence that he should be managing the long term care paperwork for two.

I'm really worried that he is gonna be so angry with us for suddenly curtailing his lifestyle, and that he might get real salty about the phone/laptop thing or paranoid that we are taking over the paperwork. Some of his friends we have been in touch with tell us his other friends are inveterate drinkers and that they will 1000% bring over booze unless we start taking this old man to AA meetings. That seems ambitious at this time, and maybe not fair to the rest of the meeting.

Oh yeah, He signed a 3 year lease on a studio apartment in manhattan and moved stuff into it literal days before he took his fall, and has 5 months left on the lease for his dinged-up chevy that he is definitely not gonna be driving anytime soon. At this point It's really hard to imagine spending a night alone in that NYC apartment maybe ever???

Anyway, he’s coming home from the hospital in 2 days and we love him very much. Any tips or wisdom for the 78 family in these trying times?
posted by wowenthusiast to Human Relations (5 answers total) 5 users marked this as a favorite
 
Best answer: Are any of his friends in recovery (not just non-drinkers) you may have an avenue with his connections there with someone who have previously handled an event that creates limitations and new behaviors, and can acknowledge disappointments while advocating for better options. It would not surprise me if the hospital social worker knows of some nearby groups that might have someone who can help with connecting detox to sobriety.

It also sounds like he needs companionship, so if there is one provider in the household, having a second person to reiterate that his brain is healing, so the hospital doctors have placed a hold on him being able to drive, consume alcohol, and jump into his old lifestyle for Very Real Risks.
posted by childofTethys at 9:25 AM on January 8


Best answer: I work with brain injury patients on a trauma floor and used to work in a rehab hospital. We redirect a lot. It's fine to say we'll do that later, knowing they will forget. Sometimes people are overtaken with anxiety that doesn't have a narrative or reason; I get a lot of mileage out of simply reminding patients there's nothing they need to be doing right now or nothing to worry about.

When you're visiting with him, or helping with things, make him feel like he is the decision maker as much as possible - do you want to do this now, or after lunch? Do you want food x or food y? Ask him for his help with things within his ability, don't treat him like a patient who just sits while caregivers perform tasks. Good examples: ask him for help making a grocery list or choosing a recipe, ask him for recommendations for things (books, restaurants, music, movies, tv, whatever he likes), ask him to help you plan something or make a decision about something. You can adjust the level of this to where his cognitive abilities are. He will likely want to feel needed, because he is used to caring for others. And independent, because he was. Safely give him the opportunity to feel that way again whenever you can, even if it's just something small.

Agitation and irritability in brain injured people are often signs of sensory overstimulation, or pain; sometimes they will deny being in pain even when they are, or they won't be able to communicate clearly what is hurting. Physical restlessness and agitation often are expressions of physical discomfort; in the hospital we respond to that by repositioning, offering pain medication, lowering the stimulation of the environment, and making sure the person's physical needs (hunger, thirst, elimination/urination) are all squared away.

He may need less noise, less bright light, less change. More sleep. He may get uncomfortable looking at screens like TVs or laptops for extended amounts of time. Lowering the level of stimulation in the environment can be your idea too - "I'm feeling run down, can we have a quiet dinner? Can I turn off the TV?" or turning off bright overhead lighting, etc. He may need to take pain medication even if he didn't before. Make sure he has his glasses and hearing aids if he uses those. If he doesn't want to wear a hearing aid but should be, try a pocket talker, which can be less overstimulating but still aids in understanding what others are saying.

One way to get around the drinking thing is to say, you're on a medication that will interact with alcohol but it's just for now, and redirect indefinitely into the future. Similarly, you can tell his friends that he has to take a break from drinking because combining alcohol with his current meds will get him really sick. Hopefully they would be considerate enough to not bring alcohol to his house if they believe that to be the case, and hopefully he has some friends who don't drink (or drink sparingly) who can enjoy a meal or a mocktail with him and give him the same social interaction and companionship.

If he was drinking so much that he had life threatening delirium tremens in the hospital his brain was/is probably damaged by thiamine deficiency (Wiernecke's encephalopathy) and they probably did IV thiamine replacement in the hospital. Good nutrition is important, alcoholism damages the body in many ways but one of the big ones is long term malnutrition. He'll probably want to eat carbs all the time, try to balance that with protein and lots of good fat, and give him a multivitamin.

If he doesn't have a clear recollection of what happened to him, it might be helpful to remind him of how worried his loved ones were. So if he's frustrated, instead of responding by saying this is for your safety, or doctor's orders/limit setting, focus on how scared and concerned you were after he fell, how much you love him, and that you want to make sure he never goes through that again.
posted by zdravo at 9:46 AM on January 8 [40 favorites]


Best answer: Consider disconnecting the battery in his car (in addition to taking his keys). He may have the spare hidden somewhere and try to make one of his town runs when nobody is paying attention. A very, very sweet neighbor of mine was in a similar situation and this is what ended up happening with his car. He was a brilliant man, but also one of the most stubborn people I've ever met. He thought he just needed to charge the battery, but would forget why it didn't start every time he tried.

I know you said there are five months left before the end of the car loan/lease. You might want to see if the dealer will take it early if it has low mileage (even if you go to someplace like Carmax - there is one in Waterbury).

Can you sublet the apartment in NYC? Since it's only been about a month, the apartment owner might be willing to void the lease if you can find somebody to take over. Maybe offer to throw in an extra month's rent to sweeten the deal. All they can do is say no, right?

Best of luck to you and your family.
posted by dancinglamb at 2:33 PM on January 8 [4 favorites]


Best answer: You need to adjust your thinking as well. I would look for an assisted living or nursing home situation for him and Mrs. 78.
Sublet the apt. or see if the lease can be terminated; he may not have been legally competent to sign a lease?
Make a sign with basic info: You had a brain injury. You're improving, but staying with %Name for now. Date

My Mom was an alcoholic, lived with my sister the last months of her life, they waged a war; Mom would give (non-health care professional) caretakers money for wine, my sister would pour it away. Make him mocktails, maybe very weak cocktails, NA beer, wine with ice, lemons, limes, and gingerale. As you saw, it's a physical addiction, and trying to do AA when his mental status is shaky seems very difficult and I'd look for strong professional help. The actions of drinking - mixing a drink, ice, stirring, are part of it, so dress up all his beverages. Have happy hour with mocktails, salty snacks, chat.

Do all the stuff zdravo recommends in their excellent comment. My Mom was happy with the music of her youth, she was never a big music listener but that changed. There might be business-related documentaries od non-strenuous movies that would fill some of the need to do paperwork; which has a strong connection to controlling one's own life.
posted by theora55 at 5:54 PM on January 8 [3 favorites]


First off, to acknowledge what you're giving to your family. It's one hell of a gift. It can be really difficult, and that difficulty doubled if your father reacts in anger, forcing you to play the heavy.

~~~~~

First: Get those car keys gone, better if the car is gone also. My father was pulling away from a red light, turning right, he looked left, looked directly at a car that was right there and coming on 45 mph, pulled right on out into the traffic. How my father wasn't beaten worse that he was I'll never be able to figure, his car was molded almost perfectly to where he sat in the drivers seat. Thank god for seat belts, both he and my mother. Thank god for seat belts in the car that he pulled in front of, also, a young married couple and their little girl. They were incredably gracious, they could have sued the living hell out of my parents, but instead they were super concerned that all was well for my folks -- these are some decent people. (I go parading through life thinking everyone is a big mope then run into people like this family.)

Of course my father quit driving, right? Of course not. He found some dead-beat insurance agent who got him a policy over the phone. And this in the state of Arizona, where you'd think restrictions would be tightened due to all of the people who have no business driving -- I think that it's perhaps hard because no politician wants to stand tall in front of voters and curtail the privilege of driving.

I think we contacted the state, said "Hey, this guy needs to be stopped. Please pull the plug." It was then my mother who drove, she wasn't in the best shape physically but really capable mentally.

Anyways, people do *not* like their keys gone, and will fight for it -- just a heads up.

~~~~~

DT's indicate A Big ProblemTM. You don't get into DT's from social drinking. If/when you pull the plug on his alcohol consumption you're going to almost certainly get some static. People don't drink that way because they're thirsty, if you catch my drift. If his drinking buddies show up I wouldn't think they're going to bring Sunday school lesson books, more likely a few bottles of vodka.

If your father is an alcoholic -- not for me to say, though he sure is acting the part -- if he is alcoholic he's going to want to be drinking. I suspect you're not up for that. If you can get him to an AA meeting or five you might just get lucky, might be he'd connect with someone there, make a friend or two. It's all luck, really.

My vote? Try to get him into the doors of a local group, all the better if someone from the group would pick him up after a few meetings. You never know.

~~~~~

Double cylinder locks IE locks from inside and out, and your parents don't get a key to go out. I know it's a common problem, not sure if you're going to have to face it down or not, for us it was a big deal, not a lot of sleep, quite a bit of anger. It was Not Fun At AllTM.

~~~~~

We were at a place where if my fathers head lost a bit more or my mother lost a bit more physically they were going to need more than us sibs could deal with. It happened. And then an assisted living place, and there my father really faded fast, and could be with my mother until bed time and then he had to go to the memory ward. *That*was a horror show; he cried every night -- Why couldn't he be with his wife? Their marriage had been far from perfect but there sure was love there, and for him to be led away from her nightly hurt him so bad, and hurt all of us, also, to see him broken.

~~~~~

You're a hell of a citizen, you're doing A Very Good Thing. Your parents raised you well.
posted by dancestoblue at 11:35 PM on January 9 [1 favorite]


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