Dealing with Dementia in Friends/Family

2,722 Views | 36 Replies | Last: 2 days ago by AgsMyDude
Serious Lee
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Any tips or tricks to this, other than exercising extreme patience? Not full on Alzheimers yet, but dad is clearly in early stages and its testing me like never before.
one safe place
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I was not impacted by anyone in my family suffering from dementia, guess I was lucky there. But I did see it play out with a couple of dozen of my clients. A good portion of my practice were in the peer group of the guy I bought the firm from, a generation ahead of me, so I saw many from his group suffering from it.

I live and practiced in a small town, and many of the children of those with dementia had moved away. Dealing with them fell on the shoulders of friends primarily rather than family. There was one guy who I figured would one day just drive off into the sunset. Had good days and bad days. If he came by my office and was having a bad day, when he left I would go out the back door and hop in my pickup and drive by his house to be sure he had made it home.

The only tip I have with dealing with someone with dementia is that if they say they want something, or want to do something that cannot be, don't tell them they can't do it or can't have it. Defer it, by saying you will get whatever it is they want or do whatever it is they want to do after they eat lunch or supper, or after someone calls or comes by. A delaying tactic. You are not denying them outright and thereby hopefully preventing a confrontation, and with a pretty short passage of time they likely will forget whatever it was they wanted anyway. Might not work with everyone but I have seen it work with a couple of people.

Sorry you are having to go through this.
Hoosegow
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Dealt with it for years with my mother...

Yes, patience is key. God blessed me with this lesson a lot.

A couple of things:
  • It effects people differently. Mom was always proper. She seemed to lose the sense of what is socially acceptable. She was also very smart and would piece together facts to make up a completely false story. Great stories, just wrong...
  • Put yourself in their shoes. Can you imagine the frustration of waking up and not knowing where you are or who the people around you are? There minds don't work right. You don't know where or how the information is getting garbled.
  • Enjoy the good times.
  • You will need a break. You can't take care of them if you aren't taking care of yourself. Your frustration will grow and if you don't have an outlet, you might take it out on them.
  • Don't be surprised with the variations of their behaviour. Mom would all of a sudden forget how to do things. Example: she one day forgot how to make coffee. She never got it back.
  • Routine is one of the best things you can do for them. Especially sleep.
  • Most importantly, keep them safe. You have to divorce yourself from your emotions when dealing with their symptoms and sometimes only deal with how to keep them safe. We had to put Mom in an assisted living home. She hated it. I hated it. Broke my heart. I couldn't keep her safe in the house. They gave her better care than I could of. I can still distinctly remember leaving Mom and her staring out the window looking at me with a "why are you doing this" look. I'd leave and then pull over and just cry.
  • And then - you said it - patience patience patience.
GrimesCoAg95
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AG
I went through it with my Dad. I agree with a lot of what has been said, but here is a little more.

1. When they tell you the same story over and over, just listen. They get joy out of the telling and will get frustrated if you stop them or correct them. I remember Dad telling me the stories until he couldn't anymore.
2. There are good days and bad, but it is a horrible decline. Next week and next year are worse than now. This is a hard reality, but enjoy the good times.
3. Pray a lot for patience.

The last time I took Dad (and Mom) to a nice dinner, I had to tell him how to eat. We ordered a charcuterie board as I thought it would be an easy appetizer. He asked, "what do I do?" Once I got him started though, I didn't get much. It is a fun memory for me because for just a few minutes he was having fun and fairly clear minded.
wangus12
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AG
Have very little experience with it personally but it is terrible. My uncle is his early 80's is going through it now. I'm heart broken for my dad.

December was awful. My uncle couldn't care for himself and his wife (also early 80s) was struggling to help. We had a family Christmas in December and they didn't come. Turns out she had fallen and he didn't know what to do. My cousin thankfully showed up, found her and took her to the hospital. Sadly during the workup the discovered she was in liver failure. She died 2 days later. My uncle still doesn't know. He occasionally asks where she is and they just tell him she is in the hospital and he leaves it at that. When he goes, they'll bury them together.

King of the Dairy Queen
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going through this with my father now, he has vascular dementia which doesnt seem as bad alzheimers. My mom is his caregiver and she's at the end of the rope- they're out of state. Assisted living seems like what is necessary but I am struggling with it. He's conscious of all of it, just not of his condition. He will not accept help, doesnt think anything is wrong, thinks he can do everything he could before (his condition was onset by a massive stroke), thinks supplements robert kennedy takes can reverse his symptoms, wont do anything a doctor tells him or take any medicine.

Patience may or may not be the right word. You cant get mad at them, its not them anymore. But you will get mad at them and then guilt will overwhelm you. Dont argue with them, redirect. If they're refusing something tell them they had promised someone important that they'd do it at least for a little while.

Ask them to do favors with you, imply its for someone else. Real life example- Dad wont go into the house because he says he doesnt live there. Tell him you're house sitting and we need to stop by for a few hours.

Im sorry youre having to deal with this. Its going to be hard. The only way out is through.
FIDO*98*
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AG
Patience and prayer are all you can really do. After having witnessed this in my family I may have to put "Trip to Canada" in my living will. It scares the hell out of me any time I can't place a face or remember a name now that I've hit 50
MasonB
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AG
If you haven't already started leaving notes around the house, we found those helpful.

That is a small drop in a big bucket of issues, I know, but they were useful. Especially making a daily one with the schedule for the day left in the same prominent spot. It's also nice to leave some positive notes in places so they aren't just reminders of memory loss.

Also, at meal times or other times of conversation, I try to steer it towards old stories. They seem to have an easier time remembering those, and it's less stressful for them.

Soon, I am going to have to figure out how to lock off the stove and oven. If you can get them to use electric kettles, toasters, and oven fryers its better because they shut off. I wish my microwave had a feature that let me limit the cook time to 2 minutes because more than once it has been set to 20 minutes.

If I have to leave her alone at home, I try to do it earlier in the day as evenings can be worse.
IIIHorn
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Often you will asked the same question several times.

Try to provide a succinct answer politely and use the same answer every time the question is asked.

Do not comment that you just answered that question.


( ...voice punctuated with a clap of distant thunder... )
Serious Lee
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King of the Dairy Queen said:

But you will get mad at them and then guilt will overwhelm you.

this is where im at. I don't have kids, so patience is a virtue that I've never really learned. I guess we all have to get there sometime though.

its frustrating cause he worked his ass off til he was 70 and just had nothing left in the tank to do anything after that. Now its just sitting in the recliner and watching TV which is only exacerbating the brain rot, but who am i to tell him how to spend his retirement.

thanks for advice. I really do appreciate it folks.

chanceg2784
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AG
Some very good advice offered thus far. We dropped my mom off in a memory care facility yesterday, as her condition had progressed to the point my dad could not safely care for her. Someone mentioned seeking counseling for caregivers, I can't stress enough how important that is.

I would also recommend seeking the advice of an elder care attorney, to ensure your family's legal and financial affairs are in order. Where this train is going, late-stage dementia care can be catastrophic financially.

I am very sorry you and your family are going through this, I wouldn't wish this condition on my worst enemy.
MouthBQ98
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AG
I'd make sure that a care facility room looks/feeels as much like home as possible. The familiar is comforting.
Whoop Delecto
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AG
MasonB said:


Soon, I am going to have to figure out how to lock off the stove and oven. If you can get them to use electric kettles, toasters, and oven fryers its better because they shut off. I wish my microwave had a feature that let me limit the cook time to 2 minutes because more than once it has been set to 20 minutes.


We flipped off the breaker to the electric range

ETA: Also went to single serve Keurig coffee pod machine to limit the catastrophes from missing carafe, overflows, flipped filter....
StinkyPinky
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AG
Hardest part is often is others who don't understand what dementia does to people and they can't be blamed for their actions. Lots of adverse events/behaviors that go along with dementia that are frowned upon by society norms. Can be frustrating dealing with others as a care giver
Mega Lops
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AG
I'm terrified of having to consider a nursing home for my folks. Good luck with your family's situation.
snowaggie
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All good advice people are giving. The person I care-give for needs to be watched for physical safety issues. I treat it as one would with a toddler. And, like a toddler, don't underestimate what they might be able to figure out that gets them in trouble. You have to have an imagination and stay one or two steps ahead. Also, I can't recommend putting a lot of effort into getting them to 'understand' something, and thus change their behavior going forward. It's not likely to happen. Be positive and humorous and look for the upside of anything you can. Example: The person may become very upset that you're preventing them from doing something. But, with extreme short-term memory loss, they don't hold it against you for long!
B-1 83
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AG
Don't talk to them like kids! My sister would do this to Dad, and it drove me nuts. I just talked to him normally - had to repeat things - but he didn't get pissed off at the demeaning tone like he did my sister.
Being in TexAgs jail changes a man……..no, not really
Ogre09
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AG
Only thing I'd add from seeing my parents and their siblings dealing with my grandparents, it's OK to laugh. Not in front of them, but about the zany things they say and do. Finding the humor in it helps deal with it. Lots of it is scary and worrisome and troubling and stressful and difficult. Some of it is funny.
maroon barchetta
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God bless you.
Ryan the Temp
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AG
Lost my dad to Alzheimer's and MIL to Lewy Body Dementia. Dad lasted 12 years, my MIL lasted about a year.

There's a lot of good advice in the posts above. I will say if you can attain a specific diagnosis of which type of dementia it will be helpful to inform decisions like medications and how much time you'll have left with them. Once we knew my MIL had Lewy Body, we knew her remaining life would be relatively short, so we didn't waste any time planning for her care.

Here are some tips I think will be helpful:
  • Buy the book "The 36-Hour Day" by Nancy Mace. It was a game-changing resource for us.
  • I'll reiterate avoid correcting them and just redirect. Think of it like an improv class "Yes, and ..." There was a point when my dad still knew who I was, but he started mixing up my name with my step brother's. I learned to respond to that name if I thought I was talking to me.
  • Get them a fidget blanket. They have zippers, buttons, snaps, and all sorts of tactile things to give them something to do and stay focused. They aren't cheap, so I can ask my mom if she's willing to let go of the one we bought for dad if you like.
  • Read up on the concept of "sundowners." Essentially, the symptoms get worse as the day goes on. This is why it helps to rigidly control their sleep schedule. Dementia will screw with their sleep schedule, so sleep aids can be your friend.
  • It is not a matter of if, but when you will need assistance, whether that is someone in-home or placing them in a facility. If you do not want to consider a facility, start planning now for how you will prepare the home for assisted care.
  • You will have to force yourself to remember the difficulties you will face are the dementia, not your loved one. A common symptom of Lewy body Dementia is aggression and my MIL got mean. Really mean. Like super see you next Tuesday mean. It totally broke my FIL.
There are a lot of us here who are only a post away if you need any help or advice.
OasisMan
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AG
Serious Lee said:

but dad is clearly in early stages and its testing me like never before.

if he truly is in the early stages,
you should have him checked out by a neurologist.


if they discover he actually has Alzheimer's, there are treatment options for it now
aglaohfour
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AG
Lots of good advice here. I'll reiterate that counseling or some other support for caregivers is a game changer. One person, or even multiple people, cannot bear the burden of caring for a parent with dementia alone.

Some things that have helped my mindset are to frame it like I'm taking care of a small child. A small child who I don't bear the responsibility for raising into an adult. What would I do if I was babysitting a friend's three year old and they were being completely unreasonable? I'd likely do whatever I could to placate them while keeping them safe.

Don't fall into trying to explain things or prompt them to remember. I can't even imagine how frustrating it is to know that you should remember something and just not be able to put your finger on it. Maddening. So anything you can do to alleviate that frustration, do it. Lie. Repeat yourself a hundred times. Lock yourself in the bathroom and cry. Remember that this person cared for you when you were totally helpless. Now is the time to repay that, and it will eventually pass. Try to enjoy the good days/moments as much as you possibly can. Write things down or even take videos on those good days.
Serious Lee
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OasisMan said:

Serious Lee said:

but dad is clearly in early stages and its testing me like never before.

if he truly is in the early stages,
you should have him checked out by a neurologist.


if they discover he actually has Alzheimer's, there are treatment options for it now


thank you. this is what i came here for, cause im not sure anyone other than myself and my mother even know whats going on. Im preparing myself to have some difficult conversations.
Ryan the Temp
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AG
Quote:

Write things down or even take videos on those good days.

Video greeting cards can be a really good way to share meaningful videos with dementia patients because it does not require them to manipulate technology.

Fun story - My dad was a huge NCIS: Los Angeles fan, and for his 70th birthday I wrote to the show runners asking for a cast photo to give him. Instead, they had the cast make a video wishing him a happy birthday. It was amazing beyond my wildest dreams. I loaded the video onto a video greeting card so he could watch the video anytime he wanted (as long as it was charged). All he had to do was open the card and the video would start playing.

When he was having a rough day, my mom would hand him the card so he could watch the video and it would help improve his mood and make him less agitated. You could do this with family members or videos of special occasions. We also put a couple of digital slideshow photo frames around the house with the same general idea in mind.
Ryan the Temp
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AG
Serious Lee said:

OasisMan said:

Serious Lee said:

but dad is clearly in early stages and its testing me like never before.

if he truly is in the early stages,
you should have him checked out by a neurologist.


if they discover he actually has Alzheimer's, there are treatment options for it now


thank you. this is what i came here for, cause im not sure anyone other than myself and my mother even know whats going on. Im preparing myself to have some difficult conversations.

Ask the doctor if he is a good candidate for Namenda.
Southlake
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AG
I lost my Dad and Brother to Mulit Form Glioblastoma 5 years ago. The last few months were very bad as the dementia increased to the point of non-recognition.

All the above are great answers.

Patience is the key and you will be rewarded for it after they are gone and you can look in the mirror and know you did your loving best.

Prayers to you and your Family.
BQ2001
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AG
one thing I haven't seen mentioned is take control of their finances in the early stages. My grandmother was a common target for scams (by physical mail and phone) and I'm sure she would have given all her money away without a second thought if she had a checkbook.
Ogre09
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AG
Yes, treatment can make a big difference. Wife's grandmother addressed it head on, embraced it, sought treatment, even made fun of herself some. She stayed fubctioning at a high level for many years before a sharp downturn at the end.

My grabdmother refused to admit anything was wrong, didn't want to talk about, didn't seek help, didn't discuss it with her dr, made excuses, blamed everyone else. She never got any treatment for it other than some sleep aid stuff when she was far gone. I don't really blame her, it must be terrifying. But my two data points showed vastly different treatment plans and outcomes. YMMV.
Pondering65
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AG
BQ2001 said:

one thing I haven't seen mentioned is take control of their finances in the early stages. My grandmother was a common target for scams (by physical mail and phone) and I'm sure she would have given all her money away without a second thought if she had a checkbook.
100% agree…if you have a great deal of trust with parents or in-laws working with them to create a trust will ease things significantly for everyone involved while lessening the legal complications. Did that with the in-laws and parents.
Azeew
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I started off very frustrated but found peace in knowing that they were now relying on me to take care of them. Once I made that decision my attitude changed and the end years became some of the most special memories I have.

And +1 to taking over their finances. They'll start writing checks to Wounded Warrior and NRA every week. We'd let them write the check but we'd show up at their house before mail pickup and just pluck them out of the mail.
PDEMDHC
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AG
Be thankful you already know and can adapt your life in how you tackle/grasp it. I'm so sorry you must go through it.

My father died from dementia complications in early 2024. Long story short he had it 3-4 years prior to it exponentially deteriorating him.

At first, we thought he was being amazingly stubborn. He'd fight with his wife and with me constantly. It wasn't until a trip to Vegas in summer 2023 that something felt off. We'd go play blackjack at the bar and he'd hit on 20 or stay on 5… things like that. He didn't want to gamble much when he's normally a fellow degenerate.

A week after we got back, he collapsed outside a restaurant with my mom. Had a brain bleed and passed out from it. When they checked his brain, they found he was very far along with his dementia due to excessive alcohol use. Doctors described that he was so intelligent that he was able to fight it internally for so long until the stroke made it real.


He was in the hospital a month and making great recovery. His first weekend home, he went "out of his mind". Something happened the first night back that couldn't be explained. witnessed him believe I was his father, brother, son, and best friend in a 5 minute conversation. He threw a 30 pound chair at my mom and nearly took her head off… thought she was a stranger trying to kill him.


We had to call an ambulance to the house to take him back to the hospital while we found a memory care facility with 2 week notice. Best thing in the world for him as he lived out his final months. The tricks they learned were helpful.

Example - they would poor non alcoholic beer into a coors lite can/bottle and he didn't know the damn difference.

Example- he liked paying for things in cash and tipping. They gave him Monopoly money for him to purchase his meals and tip for good service.

Thankfully he was lucid on his 52nd wedding anniversary. Most days, he has no idea who his family was so we stayed away until they called because he was looking for us.

He even forgot to eat and drink which is what got him in the end. Good news is he had no clue/felt no pain due to his brain deterioration. It's truly a terrible disease.

Enjoy the lucid moments and have more patience than you can muster. There are books to read and "tricks" to help with the situation.
Anchorhold
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Other people, family and friends, will question your choices. Half of those will do it to your face. Forget those people. If he is your responsibility then take it.

When the time comes you or whoever else is in charge make the rules and you let them be known. Friends can stop by unannounced until they can't. They can take him to lunch or just on an errand run until they can't. Ring or similar cameras on the exits and common rooms of the home are your friend. Airtags in his wallet, vehicle, and on his keys.

At some point consider talking to a lawyer. Also consider removing any guns from the premises.
Anchorhold
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wrong thread. It may be me.
Ryan the Temp
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AG
Quote:

Doctors described that he was so intelligent that he was able to fight it internally for so long until the stroke made it real.

This is really interesting. My MIL understood enough that things were not right with her that she could muster the strength to BS doctors and nurses for a while. When we finally figured it out, were amazed she could basically fake not having dementia in certain situations.
Hoosegow
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I sat with my mother when they conducted her cognitive test to determine she had Alzheimer's. It was scary, funny, validating and so sad all at the same time. I couldn't describe how this time her crazy was different. When I saw it on paper, I was so relieved that we had a diagnosis and yet terrified with what it meant.

I will also recommend what others have said, get on top of their finances. We gave mom and "allowance". Not really. she could have more if she wanted. But her allowance was basically 1000 in credit on her credit card. Just nothing that could get her into trouble. She always wanted to buy jewelry but we probably lost over $10,000 in earings and such while she was there. I'm sure she would leave stuff laying and people would pick them up. I don't think anyone would intentionally steal the items. Her 2K diamond stud earings, she left them somewhere. Ended up buying her cubic zerconium. You just adapt.
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