My Dad who was suffering from dementia came to live with us in April. He passed away earlier this evening and our watch has ended. We are actually relieved that he was comfortable and is now again with loved ones lost previously.

He was a fascinating man. He spent his younger years becoming an ordained Catholic Priest. At his first parish, my mom knocked on the door one door while she was getting signatures for Presidential Candidate Eugene McCarthy in 1968. Two years later he left the priesthood and two years after that they were married.

He began working for the Government in civil rights and was Director of Civil Rights when he retired in 2004.

The most fascinating thing to me is that he lived life for 54 years having received all seven holy sacraments of the Catholic Church. It’s already rare to have a person receive holy orders and holy anti money, but thanks to a softball accident around age 24, he also received the anointing of the sick, or last rights in laymen’s terms.

Not many living people have received those 3, and even fewer lived 64 more years claiming that.

He was a great husband and Dad and while I’ll
Miss him, I’m happy he is back with my Mom and the Lord.

My wonderful mom passed away the end of last month, we’ve made it through the planning, the prep, the memory boards, the photos, the funeral and reception after.

More people came to the funeral that I thought would, since most of her friends and family have already passed, so that was a lovely sendoff. The priest in the church were exactly what she wanted, extended family drove in from out of state, also surprise. I realize through this how important it is and how much it means when people make the gesture, when they make the trip.

I also now realize, my mom‘s been gone for a while. We all know this, it’s part of Alzheimer’s dementia, it’s the long goodbye. I also now know firsthand what it’s like to grieve what I started losing years ago. I will miss my pre final stage dementia Mom, because that’s who I remember when I think of her. Even just three weeks after she’s passed, I have to try to remember what the last year and a half were like. Some days it’s better that I think about that, it lowers my grief.

The end is not pretty, it’s quite literal, quite human, and quite biological. There were about 6 hours of absolute beauty, when my mother sang/mumbled with us, told us she was reaching for Jesus, that she hoped she saw her father first when she got to heaven.

My poor mom suffered fear, anxiety, broken bones, traumatic doctor and x-ray visits, multiple different residences as she moved from independent, to assisted, to memory care, to the hospital, to rehab, to memory care. There were human errors in all the places where she lived, resulting unnecessary trauma. But I take comfort and knowing with 100% certainty, the she remembered none of the trauma after it passed. I would say that’s a blessing, but really it’s a symptom of dementia. Because if she didn’t have this useless disease, she wouldn’t need to forget anything.

After helping my mom as she left earth, I know that DEMENTIA IS A PARASITE ON HUMANITY. It serves no purpose, provides no benefit, exhaust people emotionally, physically and financially. It is a problem currently without a solution. There is only symptom management. All the wonderful people that worked in her memory care, they are underpaid, often under appreciated, and I’m certain have that job because they are divinely called.

I’m grateful to God that my mom is no longer living it, I pray for for peace for everyone suffering from dementia, which includes all families, including mine, and all children, including me.

Finally, I appreciate this group more than I could possibly express here. I found so much comfort here when I greatly needed it. I found truth, which helped me prepare for what was coming, I found camaraderie and found understanding. I love you all and I’ll probably keep lurking around for a while.

Perhaps this isn't the proper place for this post, but my father has dementia, I guess. We haven't gotten a diagnosis yet. His neurology appointment is in January. His PC says he has "normal old man brain shrinkage."

I left my job just over two years ago to care for him full time. He doesn't need constant medical care but he can't really be alone. He pretty much stopped doing anything without being asked, and now we're at the point where he needs visual guidance to do just about anything. All he does on his own is meticulously fold clothes and fill his water bottle, and those two things can cause hours of frustration and confusion.

So there's the bit of background, now on to why I'm writing today...

I'm so, so angry and disappointed with my family, especially my older brother. He lives a quarter mile away and he never comes by, never calls. I probably wouldn't care if I didn't feel like he owes my father more. He talks a big game about being a family man, but it's bullshit. I think when dad is finally all the way gone, I will be done with my brother.

Anyone else have similar emotions? Did you cut ties with family after your loved one's death and how did it go/has it gone?

I think the worst thing about having my husband recently diagnosed with MCI is that he’s the person I’d normally talk to about this and now I can’t. This diagnosis is much more significant than it sounds bc his grandmother, father, and brother all died with Alzheimer’s and he has one gene. My kids know but are in their 20s and can’t really understand what this will mean and shouldn’t have to worry about it at this point in their lives. My parents are elderly and sick themselves, and I’m an only child. If this were my parent I could tell friends, but it’s not, and my husband would be very upset if he thought I were telling friends. And yes, I know I need to get to a therapist and I’m working on it.

The things I dread:
Spending the next 10+ years with someone who can’t have intellectual discussions with me.

Having him continue to develop more and more bizarre and annoying behaviors like the ones he’s been cultivating for the last ten years.

Needing memory care for him and he continues living like his father did, institutionalized for a decade, so that even our massive LTC policy can’t cover it all and I have to sell our house and assets.

Spending the remaining healthy years of my life caring for him so that by the time he’s gone I’m too old and sick to do anything myself.

Forgetting who he was when I married him, bc he was a wonderful person.

Thank you for listening. 💜

My sweet grandma has finally gone “home” a place she has yearned for. I did my best. I took care of her until the very end. She drifted away in her sleep. I opened the window, she took her last gasp & then the room became overwhelmingly peaceful. I’ll miss her forever 😭

I read through a bunch of previous posts but I just want to share and get some opinions. I'm full time caregiver to my mom who is 77. She was very active and not incredibly weak but was falling almost once a month. Mostly due to stuff like missing the step etc.

Within the last six months she has been falling more frequently and she's lost a lot of the energy she used to have. It's like she's 90 now. Spends 99 percent of her time in bed, just gets up for meals and to get coffee once in a while. I'll often look in at her and she's just staring off with her mouth wide open.

This past week she is falling at least once a day. Always while she's trying to pick something up off the floor (usually a random piece of dirt or leaf that blew in). And she's so incredibly weak.

We've had her in to the Dr's and they ran some generic tests, we pushed for PT hoping she could get some strength back, she had two short sessions and now it's back and forth between her Dr and the PT trying to get more. It's like they don't really care to find anything out.

I don't know my question (besides wtf lol), is there anything I can do?

I forgot to mention they changed her sleep meds but the weakness kind of snuck up so I'm not sure if there's a direct correlation as far as time frame goes. We're weaning her off of them right now hoping that it's at least somewhat related to side effects.

If you made it this far, thank you 😔😔

My brother and I had a meeting with our mom and her financial advisor the other day about some logistical stuff regarding our mom's former house, which my brother and I are now renting out (our mom had no interest in managing the place, and luckily she's entrusted us to handle the rental process after many months of back and forth). I feel like the specific details are not necessary here, but our mom brought up some things in the meeting which were not really pertinent to the original purpose of the meeting, and due to limited time my brother and I did our best to steer the conversation back on track.

Now our mom is accusing us of "shutting down" her financial advisor, getting pretty defensive overall, and asserting that we purposely derailed the conversation. She seems to have a sentiment that we've got some malicious intent, which couldn't be further from the truth.

I'm curious how others have dealt with parents who get overly defensive or even paranoid about their children being manipulative? In my view, this seems like a case of confabulation / paranoia? For the record, my sibling and I are both quite sure our mom is in the early stages of dementia, although she doesn't have a positive test yet. It's a fraught subject to say the least. She's shown a lot of symptoms like sending us repeat texts, losing her phone and wallet, having mood swings, confusion with finances, confusion with numbers, alienating herself from her friends and isolating much more in general.

I have no idea what our mom thinks our "agenda" is, but it's upsetting to see her react this way. We're basically trying to get clarification on some financial matters which our mom either refuses to tell us, doesn't understand, misinterprets, or forgets. I'm guessing she's confused and is acting out because she's frustrated and disoriented. Interesting to me that she remembers some details of the conversation, but the overall takeaway is distorted. I'm starting to think that family therapy might be the best route, but not sure how a session would factor in with what seems abundantly clear to be early onset dementia.

If anyone's able to weigh in on this, I'd appreciate any feedback or ideas for what to do. Or if anyone's had a similar dynamic with a parent who feels "attacked" over... nothing? Thanks in advance, and I hope this is not too vague or broad of a question.

I've given my mom seroquel/quetiapine for the past 1.5 years for agitation.

I have some 200 mgs that I give her PRN when she won't settle down with her normal 75 mg dose.

Starting one month ago, the 200 mg seroquels stopped helping and, instead, seemed to make everything worse -- she will be up for HOURS over night, so I can't sleep -- so I've been afraid to use them.

What's interesting -- and it may just be the seasons changing, which is why I ask -- is my mom has gotten LESS agitated and more manageable as I've LOWERED her dose of seroquel.

So maybe I don't need to switch her to risperidone (for now)? Should just keep it in my pocket.

I'm curious if anyone has seen seroquel quickly flip paradoxical.

To preface, I’m not really involved with my grandmother anymore. If you look at my last post I did within this subreddit, you will see where I decided to cut things off. The stress is gone to say the least!

However, I received a copy of a text message my grandfather sent one of my uncles today. I’m not sure if I can do anything anonymously but my grandfather has stopped listening to any advice any has given him. He also won’t get her hospitalized or put her in a home. Here is text message, if my grandfather isn’t going to do anything about this, is there anything I can do? It will turn into a he said/she said with the police and I doubt my grandfather will do anything and fight back anything done. Remember, this is from my grandfather to one of my uncles:

Your mom had calmed down some. I thought she was going to be OK. But shortly after your call she began searching the file cabinet for birth certificates of her young children. (app ages of 3 - 7) When I reminded her that she doesn’t have any children that young she got very angry. She pushed me hard enough to make me fall. Fortunately I fell on the couch in her study. She then threatened to leave. When she makes those threats I lock the doors so she can not get out of the house. In the kitchen she began pushing and hitting me with whatever she could get her hands on. She then grabbed a knife (8 inch blade). I had to wrestle that away from her before she cut or stabbed me with it. In the struggle a couple of previous scratches were reopened. She refused to let me treat the bleeding cuts. She has calmed down some now. I am hoping she will calm down completely. She usually does by bedtime.

Is anyone seeing foot drop with dementia? I walk faster than my husband and generally tend to be a few steps ahead of him. For the last two years I hear scuff, scuff, scuff behind me. Starting last Tuesday I hear scuff, slap, scuff, slap. I pointed this out to him and he says it is his right foot. My mother had a potentially life changing fall last week, and my husband’s foot slapping the floor is very evident in the long hospital corridors when we visit her. I’ve got him seeing our GP later this week.

My father started showing signs of dementia years ago, but my family didn’t believe me. He wasn’t always a nice person to me before, but when it hit he started focusing all his hatred and anger onto me.

Family members experienced it for the first time this year after not believing me for years.

It feels as though this is how he’s always felt towards me.

Hi,

I know we don't usually discuss legal stuff here but I figured many of you would have had experience with this.

What is the difference between a Power of Attorney versus a Durable Power of Attorney especially considering a loved one with dementia? I've looked at a few definitions but I'm still not clear on it.

I have a POA for my LO . I don't want to spend the money on lawyer's fees to get it "upgraded" to a Durable POA if I don't need to.

I'm in Ohio if that has any bearing on this.

Thanks!

But what do you do when your dad is in the hospital for almost five weeks with terrible symptoms of aggression, terror, restlessness, and no end in sight? I have been trying to advocate for him and have gotten somewhere with pain meds and having the doctors hear my concerns, but it’s taking a toll on me emotionally and physically and I don’t know how much more of this I can handle without having a breakdown. I will go tomorrow i suppose but I don’t want to anymore. I hate seeing this and I feel
helpless and scared.

Hello im just wondering if there is something out there that could help my situation. My nana is bedbound so can't move, she currently lives with family. But in the night she calls out asking if anyone is there (she's mostly blind too). She needs the ressaurance in the night that she isn't fully alone as she forgets who and where she is.

This is where I need some help. She always calls out asking "is anyone here" (those exact words) is there some sort of smart speaker or device that could be programmed so that when she calls out that phrase it could be programmed with family members voices to reply to calm her down. If someone goes in and replies to her she literally falls back asleep. Hoping there's some solution out there to help our family out who has to deal with this nightly. Thanks in advance

Do they allow you to connect them to multiple phones or tablets, for example?

I have a parent in a home and the staff don't hear the alarm going off because it sounds in an office but not on anyone's phone. I wonder if I could purchase one that would sound on multiple phones?? Do most bed exit alarms allow you to do that?

My dad died this week. He had VD/AD. He hung on unresponsive, no longer able to swallow and then took his last breath after a few days. I’m glad he’s at peace but there’s no time to grieve.

My mom also has AD. My parents were married over 60 years and inseparable. She keeps forgetting he died. It’s heartbreaking and exhausting. I’m struggling to find a therapeutic fib that will work or other ways to deal with her questions about my father.

Any ideas?

For instance. My mother might need a babysitter or someone to supervise her but she does *not* need direct care. Until lately I didn't even think she needed any supervising. This is *not* what the professional paid caregivers are typically hired for. They also are too expensive to hire all the time. They are *not* intended for people who can basically care for themselves but just shouldn't be home alone. Being watched so they don't fall is already more hours than just respite care can provide. 🙃

Per hour is the usual way of charging and it's not that expensive if what you actually need is just someone to "come in once a week" for a couple of hours but I don't honestly see how *that* would even help very much unless it's literally just a very brief respite which can be much needed but it does almost *nothing* for the actual care.

People can need almost full time supervision at a point *before* they need anything else.

Professionally paid caregivers tend to apparently either ignore this or cash in on it.

The care is almost all designed around the people who do need specific assistance with something.

If your mother just needs to be watched then you're on your own with that one.

Sigh. 😕

Her recognizing me is becoming sporadic. After a few minutes she said "You're not my husband! Go away." All of you on this thread have been there or are in the midst of it. That's all.

My Dad is recently diagnosed. We’ve never been super close. He lives states away, and led a pretty work focused life, always going where the job was (construction - pipe fitter) parents divorced when I was young and I grew up mostly with my mom, seeing him on summer break and the occasional holiday break.

The last year and a half his mental capacity had started to severely decline, and upon a job ending for him, I went to where he lives to try and help support getting him established with PCP, and on a regular medication regimen for all his unmanaged co morbidities (heart issues, diabetes etc). Upon spending an extended amount of time with him, it was apparent there was something more going on, but he fought me every step of the way when it came to actually addressing the issue. To make a long story short and by passing a lot of battle of the wills and traumatic events, he is now in a skilled nursing facility, and needs to transition to long term care. He is a full - assist, can not stand or walk, likely due to his fall exacerbating left side weakness and being laid out on the floor unable to get himself up.
He forgets that he can’t stand or walk on his own, and believes he will be able to return home.

I am extremely hesitant to step in and take total control and be the bearer of bad news that he will likely never get to go home. I have burned myself out already emotionally, spiritually, financially, trying to help this man who does not see my efforts as ‘help’
My life is 1500 miles away from where all these problems lie, and I’m struggling with the back and forth and it consuming every waking moment, when really all I want to say is Told you so, and I wish you would’ve listened. I don’t know what all his assets are and trying to work with an elder law attorney to qualify him for Medicaid, but it just all feels insurmountable. Tell me I’m not a horrible person.

My father has dementia for years now. We noticed it pretty early on in development. 5 years ago he would tell me the same story 3 times. Now he just has decreased social skills and mood swings. He doesn’t know how technology works anymore, he ask for basic card game rules he had played for years. But that’s it. Nothing dramatic, all things considered. He can still live on his own and even travel.
I’ve read that people live with dementia for roughly 8 years after diagnosis, but sometimes it can last 20 years.

Can I expect sudden worse cognitive development? Or will it keep going slowly forwards? What are your experiences? I don’t know what to expect anymore.

I’ve been caring for both of my parents, who have dementia, for over five years now. It’s a 24/7 responsibility, and during that time, I’ve learned a lot about them, about dementia, and especially about myself.
One of the biggest lessons I’ve learned has come from something most caregivers probably experience: arguments.
Anyone who has cared for someone with dementia knows that arguing with them isn’t like arguing with someone who doesn’t have the disease. Logic doesn’t always work. Reasoning doesn’t always work. And sometimes, no matter what you say or do, the situation becomes frustrating.
I’ve had those moments. I still have them occasionally.
But something I’ve learned over these five years is that some of my most difficult experiences have also become my greatest learning experiences.
Sometimes, around 3 or 4 in the morning, when my parents are sleeping and I’m watching over them, I find myself reflecting on what happened earlier in the day.
I think about what was said, how I reacted, what I could have done differently, and what I might try the next time.
And over the years, those quiet moments have helped me develop three priorities that I now consider some of the most important principles in my life.
Listen. Learn. Compassion.
Listen: Not simply to respond or defend what I believe, but to understand what the other person is experiencing. Sometimes that means putting my own opinions aside and listening with a genuinely open mind.
Learn: Every difficult experience offers an opportunity to understand something I didn’t understand before. But I have to be willing to accept that I might have been wrong or that there’s another way to approach the situation.
Compassion: Understanding that my parents aren’t experiencing the world the same way I am. Their reality may be different from mine, but that doesn’t make their emotions any less real.
Some people might say these three principles don’t always work.
And they’re right. They don’t always prevent an argument or solve a problem.
But that’s not the point.
The point isn’t to win an argument or prove who’s right.
The point is to allow yourself to understand something without immediately letting your own beliefs, emotions, or assumptions dictate the outcome.
I’ve come to believe that if you enter every disagreement determined to prove you’re right, you may walk away having learned absolutely nothing.
Sometimes the greatest lessons come from the most difficult conversations.
And sometimes you don’t recognize those lessons until hours later, when everything is quiet and you’ve had time to reflect.
Looking back over these five years, I realize that while I’ve been caring for my parents, I’ve also been growing as a person.
The wisdom I’ve gained isn’t something I’ll leave behind when my caregiving journey eventually ends. It’s something I’ll carry with me for the rest of my life.
I’m not saying I’ve mastered any of this. I still get frustrated. I still make mistakes. And I’m still learning.
But perhaps that’s the most important lesson of all.
You don’t have to win every argument. Sometimes understanding is worth far more than being right.
I’d genuinely like to hear from other caregivers. What has caring for someone with dementia taught you about yourself? Has it changed the way you listen, communicate, or approach disagreements?

Love peace ❤️

my grandpa is in the mid stages of dementia and he loves going on walks by himself. 99% of the times he’ll be fine just going on his usual path but 1% of time he’ll get lost and the cops had to drive him back home.

we’ve tried multiple methods to at least track his live location down: bracelet with contact information (he didn’t want to wear it), air tags with name card for him to carry (we tried to sneak it in his jacket but it’s unreliable b/c as everyone does, he changes to different clothes), air tag tied to his shoes (he took it off the minute i put it on), etc.

I don’t know what to do. I don’t want to limit his outside time because it helps him regulate his mood and gives him something to do when he’s not at the senior care center during the day.

I want to keep him safe and for us to be informed in case anything happens but I’ve kind of lost all hope at this point.

Any help would be appreciated! I’m starting to just accept that if anything happens to him it’s out of our control but I want to do the best I can for now…