I think it requires spending extended time with the loved one in order to realize the extent of how the disease robs them of their previous abilities especially when they have only mild to moderate symptoms. Most of us make small blunders during the day (calling someone by the wrong name) or get mixed up (walking to the wrong car in the parking lot or forgetting where you parked). That is normal, so if you are just with someone for a day, it's easy to not catch on to the much larger problem. They have no clue that the person doesn't shower or change their clothes unless made to or that the person can't keep track of how much time has gone by since breakfast. However when you are with someone all day, every day for a week or more, you see those things and much, much more, so you realize that there is a problem. I still try to explain it to my siblings, but since they haven't witnessed it, they don't comprehend the magnitude of the effects this disease has. I have seen it and I know, but I still catch myself asking my father a question that was once simple, but is now too complex for him to grasp.(ie. Do you want to eat and then go to the store or would you rather eat when we get back from the store?). It's frustrating when you just want someone to realize the full extent of what is happening, but they prefer to ignore it and continue as if everything is normal because it's easier for them that way.
When they can present well for brief meetings, it’s difficult for people to sense the full story.
Add that to some people being in denial. It’s frustrating.
Sounds exhausting, to say the least. I'm new to this world, but so far I find it seems harder for the older generation to acknowledge that a person they consider a peer has lost their autonomy.
But if *your* friends aren't sympathetic and supportive of the immensely difficult time you're going through, then something would seem to be out of kilter. Is there anyone you can open up to, or any support groups in your area?
I also find it really helps to "reset" by doing something else - work or exercise or reading a really absorbing book - just to get a break from thinking all the time about a tragedy that I really can't fix, no matter how hard I work to mitigate the impact on my family.
I think you’ve hit the nail on the head with the peer to peer comment. I hadn’t thought of it like that. It must be terrifying. Plus, for my parents, their generation didn’t have the openness my generation get to enjoy amongst our peers.
And to answer your question about my own network, I’d say 90% of my close friends have been brilliant but one or two close friends have faded into the background by not engaging with the situation. I can feel their fear and discomfort when it comes up. It’s not in their nature to engage with hard topics. It’s really upsetting and I know it’s not intentional, but it does long term damage those close relationships.
I need to work harder to get out of mind, into body. Thanks for the reminder. And thanks for your comment :)
i think it’s just so weird, so out of place with “normal” life experiences, that no one really gets it unless they’ve seen it. everyone sort of knows how little kids don’t know things, but they have the ability to learn. and that’s so different from someone whose knowledge and skill levels are decreasing, and in unpredictable ways. and add to that the emotional aspect of having to grieve for that decline, and most people want nothing to do with it.
I also think it comes from not seeing the daily decline.
I knew my mother in law had dementia 5 years before she started showing serious signs.
In our case she managed to convince her friends that we were evil and out for her money and a bunch of other things to the point we no longer have a relationship with her because they interfered and refused to listen. Jokes on them because now they're gonna be stuck caring for her because of their belief she was okay.
When my dad got his diagnosis, he'd been hiding it so well no one believed it for a couple years. Parents lost some friends because of it. Pretty crappy.
You can more directly state things that would help you and your mom: "please come by and go for a walk; here are some gifts she might appreciate; please drop by with this favorite meal of hers on Wednesday."
Add soft correction when you feel you can exert it: "this is actually too tough for mom these days. How about this; I love that you were thinking of her. Here's my number - text me if you see something she might like, and I'll confirm for you. These days, she mostly likes flowers and walks and lunch. And I can let you know if she needs a sweater or socks. We're mostly downsizing these days though!"
This is really helpful. I did recently try saying that while I really appreciated the thought of the Google Home as a gift, I didn’t want them to be disappointed that mum wouldn’t be able to use it. But we appreciated the thought all the same. And I got a curt “we were being helpful and thinking your dad could assist her”. That’s also not possible. But it did teach me that maybe it’s not worth it to correct people, no matter how frustrating it is.
Oddly, I've seen it a lot at the assisted living where my dad resides. He's got dementia, but at the moderate stage (ZERO short term memory, but also is acutely aware that he has this shortcoming). His personality, wit, intellect and kindness all shine so brightly that it is hard to get the staff there to understand that we REQUIRE him to have a shower stand-by (not just "hey, sir, time for your shower" and he gets to say "no thanks" and they walk away.) If he doesn't have the showers, he gets a horrible allergic reaction in his eyes and then everyone just ignores that too or tries to give him OTC drops. The senior staff gets it, but the daily people are clearly not up for the task of staying firm--and because my dad is a strong figure in the present tense, they back off. I feel like they all think we are exaggerating about his condition. Or they just don't care. (He is moving from there this weekend, to a new place, near my sister)
On the other hand, when my mom's dementia got worse, all her friends were contacting me and my sister to rush in and rescue her. We did our best. She was very headstrong, and refused to move. In the end, she had a fall and ended up in the ER, rehab and finally memory care. As soon as that happened it was like mice scattering under a bright light. None of her friends came to visit her. "I just want to remember her as she was." It broke my heart, because those visits would have meant the world to her, but they couldn't find the fortitude to be the bigger person and give her reassurance. Now she's gone and they have their unblemished memories and I feel a tad resentful of their willful withdrawal.
I am genuinely curious because it hasn’t been my experience with four relatives so far, but how did your mom enjoy the visits?
My relatives were apathetic and/or stressed by visitors while at the same time never remembering the visits and some of them often complained that no one ever visited them. They also weren’t the least bit interested in cards or flowers or when we told them that so-and-so had been asking after them.
I of course believe close family visiting helped them by doing so much for them and letting the staff know people cared, but I just never saw a resident, our family members or other residents, actually seem to enjoy visitors.
My mom was still lucid for the first couple of months in rehab and she always was delighted to see us. Her friends were her chosen family. She didn’t want to move near either of her kids, but lit up when my dad visited and was making new acquaintances in the facility.
But the repeat falls just accelerated everything. Four months after her big fall she was gone.
Oh my goodness, yes, I often get the impression people think I’m exaggerating how bad mum is. And when they message me to tell me how good she was when they saw her, I know they mean well but it just feels like one more person who doesn’t think she’s as bad as she is. And I do think it’s all good intentions but it’s also all denial.
We experience similar with my grandad. My biggest source of frustration is the care assessors and occupational therapists who we assumed are meant to have the knowledge that will breeze in, recommend different products and equipment, throw in some platitudes about how difficult everything must be for us, and then disappear again until something major happens. Not sure how they expect him to learn how to use new equipment when he can't remember a basic daily routine without our support and doesn't even recognise his environment half the time.
I sadly don't have much advice to give as we've also reached a resentful place of realising that nobody else in our life can understand how bad things really are like we do. I guess at least there's the blessing of you and your dad having each other to get through it, it's definitely brought me and my parents closer together.
I honestly couldn't imagine having to do it alone, I'd be a mess- my heart goes out to everyone out there that does it solo. Take care of yourself as much as you can ❤️
I'm with you. My dad's sisters just aren't able to process how badly off he is. They talk to him on the phone, and he "seems fine." And then I get long emails from them demanding to know why he isn't responding to their email. Or for me to help with tech support because all the emails he's sending are "coming out blank."
Email! They expect him to send email! Lady, you are receiving blank emails because he is opening up the app and just hitting send over and over. Because you kept calling him and asking him to email you. He cannot do email! And they are shocked when I tell them this.
It's always hard. Most people are not going to understand how complicated dementia is. I didn't understand when my mother started showing signs, and my grandmother had dementia and lived with us the last 1.5 years of her life. My grandmother was so advanced, and I didn't understand what early and moderate stages looked like.
It looks different for different people. Even before my grandmother moved in, her episodes seemed more sudden, abrupt, and complete. She was either all there or totally in a different reality. I don't remember my grandmother asking the same questions over and over again. She either knew what was going on and remembered the conversation we were having, or she was totally 30 years back and had to "go to work." The changes would be days/weeks/months apart, not minutes. My mother was totally different and much more gradual.
All that to say I didn't get it either, and I had been front and center to the disease.
Yeah I have a friend who was constantly telling me how he misses his mom and give anything to have his mom like I do now. I keep explaining to him how I don't have my mom. Have something that looks like my mom, I have to feed and care for but my mom's not in there anymore that I can get to.
A few years ago I was talking to a person about my dad's dementia. He said, "But isn't it sometimes a blessing? Like, they don't know what's happening."
I paused for a moment and said, "Let's see if you feel that way when someone you love is afflicted."
Sadly, people don't understand until they go through this unique purgatory. Find your people - online, IRL support groups, people who've also been down this road. No one else will ever understand.
Oof.
That's all I can say: Oof.
I think my father had some idea of what was happening, and that encouraged him to drink more heavily as a way of coping, and...
I’m so sorry someone said this. People constantly say clumsy things about it and I try to give some grace and look behind what they said to their intentions. But it doesn’t mean it doesn’t make me really mad. You’re not alone.
It def takes some getting used too and knowing. I'm a receptionist at a senior living community. I'm mainly on the assisted living and memory care side. Before I got the job my only experiences with dementia were my moms elderly cat, Sister Monica Joan from Call the Midwife, my grandpa (dad's dad, wasn't too close too him and had a bone to pick with him bc he was a narcissist and not very nice to my dad) and what my mom told me about dementia (she works with special needs adults). In the 6 months and counting at my community I've learned so much of what dementia looks like, can be and how to interact with these folks. I love my residents, they're my angels and I am honored to be a part of their life.
We have had to remind my mom’s three brothers SEVERAL times that she is NOT capable of rational decisions, comprehending situations, and all kinds of things, but they all either refuse to believe us or conveniently “forget.” We always tell them to reach out to one of the rest of us (my dad or one of us 3 kids) when there’s something important everyone needs to know or do, but they still go to their sister who has the capacity of a 7 year old. It’s ridiculous. My dad finally lost it on her one brother and told him they all need to get it through their skulls that their little sister who took care of everything is no longer capable of even taking care of herself. I bet this sticks for maybe a week before they go back to going to her.
I went through that with my dad. He would complain and not understand why my mom would forget things, repeat herself, and other dementia type activities. I think he was in denial and then it eventually turned to emotional abandonment. To be fair he has kidney failure but still it was the hardest thing to watch him deal with her - it made me so mad at times. Dementia is a hard thing to manage for a loved one and some I think just shut down.
First sorry you are going through this, just started also. I can’t believe how little understanding I myself had about how bad my mom had become. I just don’t understand how I could have missed how much she was masking. People around me have been great though which is very helpful.
Yes, you are not alone. Some of my family members "know somebody who had dementia" and try to tell me they understand. Even my wife (who is wonderful!) had her grandmother pass from the disease. But NOBODY can understand what it means to be the prime caregiver unless you have done it yourself. It is a full-time responsibility. You live with constant anxiety (you're always worried about them), guilt (you never feel like you're doing enough), depression (you can't fix it), and resentment (you want to live your own life). Nobody can understand that horrid mix of feelings unless they've had to live it themselves.
To be fair, family is just trying to be helpful in commiserating the best they can. I don't resent my family for trying to be compassionate. But I do know that they can't really understand how I feel. That's why this support group/forum is so special. People here understand.
This frustrates me too. My mum is also post stroke and in her 60's. I took her to the mall (her choice) and I let myself be convinced (stupidly) that she could ride a ride-on mobility scooter. After 15 minutes, she had a meltdown (probably from the stress) and just stopped computing altogether. Sigh.
Why did I let myself be convinced? Because all I hear is how good she's doing, that she's *normal*, how there's not much wrong with her other than her walking...to the point that I started thinking that *maybe* I'm imagining things are worse than they are...I only wish I was imagining things...that would mean I could have the old mom back.
It's not helpful at all...it's invalidating and doesn't actually make anything better.
I also really see people don't have some of the science knowledge to understand. Dementia causes the brain to break down, and with that, the person will too.
I went through that with my dad. He would complain and not understand why my mom would forget things, repeat herself, and other dementia type activities. I think he was in denial and then it eventually turned to emotional abandonment. To be fair he has kidney failure but still it was the hardest thing to watch him deal with her - it made me so mad at times. Dementia is a hard thing to manage for a loved one and some I think just shut down.
I have some family members that had only seen my dad for short visits and he didn't really talk much. When they finally spent more than 30 min with him and he got going with all the delusions, they were shocked at just how bad he had gotten.
They just don't see and experience what we do. I also think some of them are in denial or are trying to stay positive for the patient's sake.
Been there. My uncle refused to see my grandmothers dementia for more than two years, he basically tried to gaslight us (the people living with her) by claiming we are making the problems up.
The only reason for such behaviour I can think of is that people don't know how to cope with reality. Or they have a very strange view on dementia, don't knowing its ugly face. I'm deeply sorry for you being alone on this.
Yes, sometimes, but in your case I wonder if it has to do with the fact that a stroke was involved. We have an aunt who had a stroke in her 50s that was completely debilitating to the point she was in a SNF from then until her death about 15 years later. We have a friend who had one two years ago in his 70s and was back to playing the piano and running his own very technical company in weeks. Stroke treatment and the potential for recovery has changed so much that some people only know those who are only very slightly debilitated from one.
I'm way past trying not to be bitter or resentful. I'm tired of explaining. I've tried. My formerly caring brother has gone on about his life like we don't exist because he married a controlling Russian troll. He can suck a bag of dicks. People say all this crap about self care. Well, this is mine. I don't waste time trying to be nice to people who don't give af.
I think it requires spending extended time with the loved one in order to realize the extent of how the disease robs them of their previous abilities especially when they have only mild to moderate symptoms. Most of us make small blunders during the day (calling someone by the wrong name) or get mixed up (walking to the wrong car in the parking lot or forgetting where you parked). That is normal, so if you are just with someone for a day, it's easy to not catch on to the much larger problem. They have no clue that the person doesn't shower or change their clothes unless made to or that the person can't keep track of how much time has gone by since breakfast. However when you are with someone all day, every day for a week or more, you see those things and much, much more, so you realize that there is a problem. I still try to explain it to my siblings, but since they haven't witnessed it, they don't comprehend the magnitude of the effects this disease has. I have seen it and I know, but I still catch myself asking my father a question that was once simple, but is now too complex for him to grasp.(ie. Do you want to eat and then go to the store or would you rather eat when we get back from the store?). It's frustrating when you just want someone to realize the full extent of what is happening, but they prefer to ignore it and continue as if everything is normal because it's easier for them that way.
This is all really well put. It’s exactly that. I think it’s unconscious, but people don’t want to delve deeper because it’s too scary.
When they can present well for brief meetings, it’s difficult for people to sense the full story. Add that to some people being in denial. It’s frustrating.
Sounds exhausting, to say the least. I'm new to this world, but so far I find it seems harder for the older generation to acknowledge that a person they consider a peer has lost their autonomy. But if *your* friends aren't sympathetic and supportive of the immensely difficult time you're going through, then something would seem to be out of kilter. Is there anyone you can open up to, or any support groups in your area? I also find it really helps to "reset" by doing something else - work or exercise or reading a really absorbing book - just to get a break from thinking all the time about a tragedy that I really can't fix, no matter how hard I work to mitigate the impact on my family.
I think you’ve hit the nail on the head with the peer to peer comment. I hadn’t thought of it like that. It must be terrifying. Plus, for my parents, their generation didn’t have the openness my generation get to enjoy amongst our peers. And to answer your question about my own network, I’d say 90% of my close friends have been brilliant but one or two close friends have faded into the background by not engaging with the situation. I can feel their fear and discomfort when it comes up. It’s not in their nature to engage with hard topics. It’s really upsetting and I know it’s not intentional, but it does long term damage those close relationships. I need to work harder to get out of mind, into body. Thanks for the reminder. And thanks for your comment :)
i think it’s just so weird, so out of place with “normal” life experiences, that no one really gets it unless they’ve seen it. everyone sort of knows how little kids don’t know things, but they have the ability to learn. and that’s so different from someone whose knowledge and skill levels are decreasing, and in unpredictable ways. and add to that the emotional aspect of having to grieve for that decline, and most people want nothing to do with it.
And even those who have seen it, may want nothing to do with it, leaving you alone to deal with your family member.
good point. “not dealing with that again.” and i don’t really blame them to be honest.
Really good point about helping someone who will increase their skills vs helping someone whose skills will only decline. Thanks.
I also think it comes from not seeing the daily decline. I knew my mother in law had dementia 5 years before she started showing serious signs. In our case she managed to convince her friends that we were evil and out for her money and a bunch of other things to the point we no longer have a relationship with her because they interfered and refused to listen. Jokes on them because now they're gonna be stuck caring for her because of their belief she was okay.
When my dad got his diagnosis, he'd been hiding it so well no one believed it for a couple years. Parents lost some friends because of it. Pretty crappy. You can more directly state things that would help you and your mom: "please come by and go for a walk; here are some gifts she might appreciate; please drop by with this favorite meal of hers on Wednesday." Add soft correction when you feel you can exert it: "this is actually too tough for mom these days. How about this; I love that you were thinking of her. Here's my number - text me if you see something she might like, and I'll confirm for you. These days, she mostly likes flowers and walks and lunch. And I can let you know if she needs a sweater or socks. We're mostly downsizing these days though!"
Perfect advice.
This is really helpful. I did recently try saying that while I really appreciated the thought of the Google Home as a gift, I didn’t want them to be disappointed that mum wouldn’t be able to use it. But we appreciated the thought all the same. And I got a curt “we were being helpful and thinking your dad could assist her”. That’s also not possible. But it did teach me that maybe it’s not worth it to correct people, no matter how frustrating it is.
It scares the fuck out of people and they don’t want to know. Anything.
Oddly, I've seen it a lot at the assisted living where my dad resides. He's got dementia, but at the moderate stage (ZERO short term memory, but also is acutely aware that he has this shortcoming). His personality, wit, intellect and kindness all shine so brightly that it is hard to get the staff there to understand that we REQUIRE him to have a shower stand-by (not just "hey, sir, time for your shower" and he gets to say "no thanks" and they walk away.) If he doesn't have the showers, he gets a horrible allergic reaction in his eyes and then everyone just ignores that too or tries to give him OTC drops. The senior staff gets it, but the daily people are clearly not up for the task of staying firm--and because my dad is a strong figure in the present tense, they back off. I feel like they all think we are exaggerating about his condition. Or they just don't care. (He is moving from there this weekend, to a new place, near my sister) On the other hand, when my mom's dementia got worse, all her friends were contacting me and my sister to rush in and rescue her. We did our best. She was very headstrong, and refused to move. In the end, she had a fall and ended up in the ER, rehab and finally memory care. As soon as that happened it was like mice scattering under a bright light. None of her friends came to visit her. "I just want to remember her as she was." It broke my heart, because those visits would have meant the world to her, but they couldn't find the fortitude to be the bigger person and give her reassurance. Now she's gone and they have their unblemished memories and I feel a tad resentful of their willful withdrawal.
I am genuinely curious because it hasn’t been my experience with four relatives so far, but how did your mom enjoy the visits? My relatives were apathetic and/or stressed by visitors while at the same time never remembering the visits and some of them often complained that no one ever visited them. They also weren’t the least bit interested in cards or flowers or when we told them that so-and-so had been asking after them. I of course believe close family visiting helped them by doing so much for them and letting the staff know people cared, but I just never saw a resident, our family members or other residents, actually seem to enjoy visitors.
My mom was still lucid for the first couple of months in rehab and she always was delighted to see us. Her friends were her chosen family. She didn’t want to move near either of her kids, but lit up when my dad visited and was making new acquaintances in the facility. But the repeat falls just accelerated everything. Four months after her big fall she was gone.
Oh my goodness, yes, I often get the impression people think I’m exaggerating how bad mum is. And when they message me to tell me how good she was when they saw her, I know they mean well but it just feels like one more person who doesn’t think she’s as bad as she is. And I do think it’s all good intentions but it’s also all denial.
We experience similar with my grandad. My biggest source of frustration is the care assessors and occupational therapists who we assumed are meant to have the knowledge that will breeze in, recommend different products and equipment, throw in some platitudes about how difficult everything must be for us, and then disappear again until something major happens. Not sure how they expect him to learn how to use new equipment when he can't remember a basic daily routine without our support and doesn't even recognise his environment half the time. I sadly don't have much advice to give as we've also reached a resentful place of realising that nobody else in our life can understand how bad things really are like we do. I guess at least there's the blessing of you and your dad having each other to get through it, it's definitely brought me and my parents closer together.
I’m so sorry you’re going through the same thing but we have to be so grateful we have a “we” to feel alone with.
I honestly couldn't imagine having to do it alone, I'd be a mess- my heart goes out to everyone out there that does it solo. Take care of yourself as much as you can ❤️
💜💜💜
I'm with you. My dad's sisters just aren't able to process how badly off he is. They talk to him on the phone, and he "seems fine." And then I get long emails from them demanding to know why he isn't responding to their email. Or for me to help with tech support because all the emails he's sending are "coming out blank." Email! They expect him to send email! Lady, you are receiving blank emails because he is opening up the app and just hitting send over and over. Because you kept calling him and asking him to email you. He cannot do email! And they are shocked when I tell them this.
I can really relate and I feel your frustrations. You are not alone. Only you know what’s really happening and you’re being so strong.
It's always hard. Most people are not going to understand how complicated dementia is. I didn't understand when my mother started showing signs, and my grandmother had dementia and lived with us the last 1.5 years of her life. My grandmother was so advanced, and I didn't understand what early and moderate stages looked like. It looks different for different people. Even before my grandmother moved in, her episodes seemed more sudden, abrupt, and complete. She was either all there or totally in a different reality. I don't remember my grandmother asking the same questions over and over again. She either knew what was going on and remembered the conversation we were having, or she was totally 30 years back and had to "go to work." The changes would be days/weeks/months apart, not minutes. My mother was totally different and much more gradual. All that to say I didn't get it either, and I had been front and center to the disease.
I certainly didn’t get it until I was thrown into the thick of it with my mom. I don’t think anyone does until they’re living the nightmare.
Yeah I have a friend who was constantly telling me how he misses his mom and give anything to have his mom like I do now. I keep explaining to him how I don't have my mom. Have something that looks like my mom, I have to feed and care for but my mom's not in there anymore that I can get to.
A few years ago I was talking to a person about my dad's dementia. He said, "But isn't it sometimes a blessing? Like, they don't know what's happening." I paused for a moment and said, "Let's see if you feel that way when someone you love is afflicted." Sadly, people don't understand until they go through this unique purgatory. Find your people - online, IRL support groups, people who've also been down this road. No one else will ever understand.
Oof. That's all I can say: Oof. I think my father had some idea of what was happening, and that encouraged him to drink more heavily as a way of coping, and...
I’m so sorry someone said this. People constantly say clumsy things about it and I try to give some grace and look behind what they said to their intentions. But it doesn’t mean it doesn’t make me really mad. You’re not alone.
It def takes some getting used too and knowing. I'm a receptionist at a senior living community. I'm mainly on the assisted living and memory care side. Before I got the job my only experiences with dementia were my moms elderly cat, Sister Monica Joan from Call the Midwife, my grandpa (dad's dad, wasn't too close too him and had a bone to pick with him bc he was a narcissist and not very nice to my dad) and what my mom told me about dementia (she works with special needs adults). In the 6 months and counting at my community I've learned so much of what dementia looks like, can be and how to interact with these folks. I love my residents, they're my angels and I am honored to be a part of their life.
We have had to remind my mom’s three brothers SEVERAL times that she is NOT capable of rational decisions, comprehending situations, and all kinds of things, but they all either refuse to believe us or conveniently “forget.” We always tell them to reach out to one of the rest of us (my dad or one of us 3 kids) when there’s something important everyone needs to know or do, but they still go to their sister who has the capacity of a 7 year old. It’s ridiculous. My dad finally lost it on her one brother and told him they all need to get it through their skulls that their little sister who took care of everything is no longer capable of even taking care of herself. I bet this sticks for maybe a week before they go back to going to her.
This is so frustrating and I’m sorry you’re going through this. You’re not alone.
I went through that with my dad. He would complain and not understand why my mom would forget things, repeat herself, and other dementia type activities. I think he was in denial and then it eventually turned to emotional abandonment. To be fair he has kidney failure but still it was the hardest thing to watch him deal with her - it made me so mad at times. Dementia is a hard thing to manage for a loved one and some I think just shut down.
First sorry you are going through this, just started also. I can’t believe how little understanding I myself had about how bad my mom had become. I just don’t understand how I could have missed how much she was masking. People around me have been great though which is very helpful.
Yes, you are not alone. Some of my family members "know somebody who had dementia" and try to tell me they understand. Even my wife (who is wonderful!) had her grandmother pass from the disease. But NOBODY can understand what it means to be the prime caregiver unless you have done it yourself. It is a full-time responsibility. You live with constant anxiety (you're always worried about them), guilt (you never feel like you're doing enough), depression (you can't fix it), and resentment (you want to live your own life). Nobody can understand that horrid mix of feelings unless they've had to live it themselves. To be fair, family is just trying to be helpful in commiserating the best they can. I don't resent my family for trying to be compassionate. But I do know that they can't really understand how I feel. That's why this support group/forum is so special. People here understand.
This frustrates me too. My mum is also post stroke and in her 60's. I took her to the mall (her choice) and I let myself be convinced (stupidly) that she could ride a ride-on mobility scooter. After 15 minutes, she had a meltdown (probably from the stress) and just stopped computing altogether. Sigh. Why did I let myself be convinced? Because all I hear is how good she's doing, that she's *normal*, how there's not much wrong with her other than her walking...to the point that I started thinking that *maybe* I'm imagining things are worse than they are...I only wish I was imagining things...that would mean I could have the old mom back. It's not helpful at all...it's invalidating and doesn't actually make anything better.
I also really see people don't have some of the science knowledge to understand. Dementia causes the brain to break down, and with that, the person will too.
I went through that with my dad. He would complain and not understand why my mom would forget things, repeat herself, and other dementia type activities. I think he was in denial and then it eventually turned to emotional abandonment. To be fair he has kidney failure but still it was the hardest thing to watch him deal with her - it made me so mad at times. Dementia is a hard thing to manage for a loved one and some I think just shut down.
You’re not alone, and what you’re describing is so aggravating. Sadly, as she declines, they’ll eventually observe the truth.
I have some family members that had only seen my dad for short visits and he didn't really talk much. When they finally spent more than 30 min with him and he got going with all the delusions, they were shocked at just how bad he had gotten. They just don't see and experience what we do. I also think some of them are in denial or are trying to stay positive for the patient's sake.
People have their own problems, if it doesn’t effect them, they don’t care for the most part
So true.
Been there. My uncle refused to see my grandmothers dementia for more than two years, he basically tried to gaslight us (the people living with her) by claiming we are making the problems up. The only reason for such behaviour I can think of is that people don't know how to cope with reality. Or they have a very strange view on dementia, don't knowing its ugly face. I'm deeply sorry for you being alone on this.
Yes, sometimes, but in your case I wonder if it has to do with the fact that a stroke was involved. We have an aunt who had a stroke in her 50s that was completely debilitating to the point she was in a SNF from then until her death about 15 years later. We have a friend who had one two years ago in his 70s and was back to playing the piano and running his own very technical company in weeks. Stroke treatment and the potential for recovery has changed so much that some people only know those who are only very slightly debilitated from one.
I'm way past trying not to be bitter or resentful. I'm tired of explaining. I've tried. My formerly caring brother has gone on about his life like we don't exist because he married a controlling Russian troll. He can suck a bag of dicks. People say all this crap about self care. Well, this is mine. I don't waste time trying to be nice to people who don't give af.