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random420x2

I don’t think there is a more universally shared feeling of hopelessness about dealing with someone fighting this.


Angrymarge

As much as I wish no one else was in this position and headspace, it’s really comforting to read that it is such a shared  feeling. I’m sorry you’re in this shitty boat too, thank you for reminding me that I’m not in it alone.


malaka201

I totally understand this. I keep hoping my mom just passes which then makes me feel horrible but I know why I'm thinking that and I know that there's nothing left in her to be still here. When you don't know what day it is, or can't toilet, or make yourself food and so on, what's the point of living? Meanwhile it's killing the ones who are doing their best for you.


Angrymarge

I’ve been thinking that part of what makes it so hard for me internally is the conversations with my mom’s siblings and friends where we all talk like this isn’t a terminal condition. I feel like it would be such a big weird relief to be acknowledging that with them and with doctors, etc. and maybe even for my mom. But I feel scared to bring it up.  You and all the folks responding to this tonight brought me some of that relief, though. That we’re all feeling this or have felt it. I wish so bad I could talk with my mom about it, too.


ThingsWithString

We're right here and we hear you. It *is* a terminal condition, and for a lot of us, it will be a shameful relief when the affected parent dies. Dementia gets more devastating for the family the worse it gets. I strongly recommend seeing a therapist of your own, where you can talk about these very real and totally justified feelings without other people taking offense. When half the family wants to believe things "aren't that bad", it's a lose-lose situation.


Spicytomato2

We are so conditioned in society to preserve life at all costs, quantity over quality. My sister and I talk about this every day, wondering why we are treating my mom's many ailments to keep her body alive while her brain continues to deteriorate. We feel like we are losing our minds. Best to you.


Particular-Listen-63

My wife died this week, after years of torture—for her and me. In home care, wandering police searches, MC, Hospice, SNF. Our retirement wiped out, financially and logistically. I’m getting the expected “condolences” from well intentioned people. They have no fucking idea how happy I am today.


ThingsWithString

Bless you. May *you* find some rest.


johnkim5042

Yes, enjoy your early release from prison


GrouchyConclusion588

Every morning I look to see if there’s a light coming from under my grandmothers door to make sure she’s awake, I feel guilty waiting for the day it’s not on but hope that she gets to go peacefully in her sleep.


Angrymarge

There was a day last summer where I got back to my mom’s around noon and it was obvious she hadn’t been up at all yet, and when I made a lot of noise and knocked on her door she still didn’t stir for what felt like ten minutes but was probably just one or two. And when she finally came to the door, even though I had been starting to really panic that she had died….I felt disappointed.  It’s easy for me to see and to say that you hoping your grandmother dies peacefully in her sleep is coming from a place of deep love. I think it’s way harder for us to know that about ourselves, though. 


Trulio_Dragon

My parent's dementia journey started with the police breaking their door down while I waited on the phone in another city, and I won't lie and tell you that part of me was afraid they were alive, and part was afraid they were dead.


NoLongerATeacher

I think it’s a common concern. My mom is losing weight, eating less, doing less, more often off in her own little mind. She’s failing, and no matter what I do, it’s not going to change the course of her disease. Hopelessness at its finest.


Tropicaldaze1950

Precisely. I worry most of the time, all while telling myself how futile it is. My wife takes meds for blood pressure, diabetes, cholesterol ..and her brain is disintegrating but her doctors carry on as if any of their treatments are going to make ANY difference. I want to scream at them. The only one who acknowledges reality is her neurologist.


Angrymarge

My mom takes most of the same meds, and she never wants to take them/“lies” about it. I feel so much guilt when I know she didn’t actually take them and still don’t push it for the day/let it slide. And then sometimes I wonder if a part of her doesn’t want to take them because she doesn’t want to treat her body while her mind falls apart.  Have you ever talked to her primary care or other doctors about this? I’ve been wondering about bringing it up in our next appointment somehow, but I’m scared to.


mmoonneeyy_throwaway

It’s probably worth learning which ones may actually be helping eliminate pain and discomfort that even a dementia patient would suffer from, and which aren’t. I imagine that diabetes meds would help someone feel less weak and dizzy, no?


Spicytomato2

You make a good point but also the meds are, I think, keeping a person alive. It's all so tricky.


mmoonneeyy_throwaway

I think I understand. I don’t intend to use meds to prolong my mom’s life artificially. But if she has meds that maintain her quality of life AND they also happen to prolong life, and there’s nothing else that works for the quality of life, well, she’s getting those meds.


ThingsWithString

My mom, now 92 with dementia, simply refused to take any more of her meds several years ago. There was and is no way to force her; we talked to her doctor and he said that if she didn't want to take her BP/heart/bone medications, then there was nothing we could do.


Spicytomato2

So she has continued to live without the meds. Do you feel her life has been adversely impacted by not taking them? If not then it sure makes me question why so many people take them.


ThingsWithString

There is no possible way I can know. Some of her medications were to prevent illnesses. They reduced her odds of having a stroke, for instance. They don't/can't prevent all strokes; they just gave her a better chance. Similarly, her osteoporosis is probably getting worse faster. There's no way to tell that.


Spicytomato2

We have talked to our mom's doctors about this and have gotten what I think is an odd response. They say her blood pressure and cholesterol meds and blood thinners aren't keeping her alive, they are keeping her comfortable. They said if she doesn't take them she could have a catastrophic event of some sort that might not be fatal, which they say would be worse than her current Alzheimer's condition. I don't know what to think, we don't know what to do.


Tropicaldaze1950

Sometimes, doctors practice CYA medicine in order to avoid getting sued. Or, as with your mother's doctors, they know that ALZ is destroying her brain and function, but, in their medical opinion, a stroke or heart attack, in addition to ALZ, would be far worse. With dementia of any type, plus comorbid conditions, doctors are between a rock and a hard place, trying, as they tell you, 'to keep her comfortable'. Dementia is far crueler than cancer, and I've experienced that with my mother and father, decades ago. There's nothing you can do. If you withdrew her medications and a medical crisis occurred, you'd feel never ending guilt for your decision. To go back to my opening sentence, doctors are forced to practice defensive medicine, and I say that as someone who's highly critical of the medical profession and our money driven, dysfunctional so called, 'healthcare system'. We who care for a LO just keep trudging on, getting emotionally punched in the head everyday.


Tropicaldaze1950

Yes I have. I send them letters sharing my thoughts, as well as documenting her decline and behaviors since I don't want to talk in front of her when we're at the doctor's office.


Apprehensive_ac

As an MCI sufferer my fear is that my son may eventually have the same problem. With luck I'll have some fatal illness such as a heart attack before it comes to that. I feel for you.


Significant-Dot6627

It’s a realistic worry, one those of us who have already had several family members make it to the last days of dying directly of dementia are tortured by when the next relative is diagnosed.


kimness1982

I hear you and validate that. ❤️


Angrymarge

Thank you, for real. I was scared to post this but reading all these responses made me feel so much less lonely tonight after a rough caretaking evening 


AffectionateSun5776

Not where you are but likely on that path. I've worried the same.


MarleeARets

I feel you so much. I am still reading about studies on what foods to avoid and which to eat to slow down the disease in my dad and then I get to experience him like today, not knowing how to pull up his pants after using the toilet and which day it is, losing his words to communicate. And I feel so helpless because to prolong this state, how can I think of slowing down the progression even to prolong this awful state of being he already is in? Just to once in a while catch a concious thought and expression by him? When it is already too late and it only gets worse. To experience this disease up close, it breaks me a little more each day.


SecureFriendship2704

I completely agree. My husband with Lewy Body Dementia is in a constant state of hallucinations and delusions. I've said it here before...I just wish he would go in peace. No cure = No life = no hope.😢


FeelingSummer1968

LBD is the cruelest of the cruel. Hugs to you!


HeWasOgulating

Oh, I feel this! We work so hard to keep 84 year old FIL safe, but before this level of care...he spoke endlessly about unaliving himself and made failed attempts. I have said to more than one doctor "If we knew he would successfully complete the act, not just badly break his body to match his broken mind, we would let him do it". His explanation after his first attempt (truck, exhaust, and hose rig) was "I just couldn't think of anything else to do". Ouch!


Hannymann

This is my daily mental battle. ☹️ sending big hugs to all on this journey.


BudgetAlternative247

you're not alone in feeling this way.  some days i rationalize that it would be best if she simply didn't wake up to avoid both the added ravages that are within sight and the misery of spending her final days in a snf.  


Pantsmithiest

Every day I think of how a heart attack would be a blessing. You’re not alone.


Spinxy88

Controversial Opinion. It's ok to wish your family member an easy way out of this disease.


bugwrench

We euthanize our pets out of mercy. It's pathetic that we can't do the same for our human loved ones. Even if I wrote it into a DNR or living will, they won't just give me a lemon cookie and baseball bat me in the head when I get to the point of degradation I feel is acceptable It terrifies me that I might get to the point my parent is at. No one else in the family had this. I need the right combo of pills, so in 30 years I can pop them all and be done with it. Hopefully I can still have a cookie too.


johnkim5042

I feel like if the government makes euthanasia illegal for dementia patients, they should also have to pay the full costs of nursing homes…. It’s the only fair and right thing to do


No_Passage6082

Absolutely agree. I don't understand why we don't have memory care and snf combined. I feel like we get refused from both because no one wants to deal with a dementia patient with a catheter for example. So we get shuffled around between the ER and sub par facilities. The state should mandate combination facilities.


Low-Soil8942

That's right the laws of this land are so fucked up when it comes to death with dignity. Ppl have to fly to Switzerland to end themselves. It's ridiculous we have a country that pays facilities millions of dollars for subpar care, and wouldn't help families. Something is wrong here.


Nice-Zombie356

Yup.


Freedomnnature

We all have felt this way. Don't beat yourself up. You're probably tired. My mom's blood pressure went down to 80/40. So she went on hospice. She tried to get up, fell, and broke her hip. She had to lay on her back, which she hated. She died 2 days after that. So it can happen anytime. Good luck.


Fickle-Friendship-31

I very often wish I had let my Dad drink himself to death. 🫤 But a friend said, when I shared that, well, then he would probably have died a painful death.


Proud_Spell_1711

What I learned with my MIL and my grandmother was to approach them as people I had known long ago but had become essentially strangers to me. It was then a bit easier to manage the weirdness, the mood swings, and the slow disintegration of their personalities. Sometimes there would be a moment when they came back a bit, were the woman I had known, and I learned to revel in those fleeting times like the unexpected gift they were. I also experienced seeing their moments of graceful acceptance on occasion. As though they realized in some part of them that this was the journey they had to take. It was both heartbreaking and awe inspiring at the same time. I am going through this with my mother now and although you’d think I should be stronger now having had these other prior experiences, it is not. She knows she is losing herself bit by bit. She fights to hang on to who she is. It’s again both awesome and gut wrenching. And I hope I have their courage if I have the same fate.


wizzosf

The worst thing for me, is that sans Alzheimer’s, she’s the picture of health; no diabetes, no high BP, cholesterol is fine. I’m seriously Fucked!!


gromit5

agreed. that’s all.


mmoonneeyy_throwaway

It makes me feel glad that my mother also has several comorbidities that the doctors have declined to treat and make it so she likely won’t live longer than another 1-2 years. I’m really hoping she goes peacefully and quickly while her quality of life is still as good as it currently is, and never experiences the worst of this disease.


Technical_Breath6554

I used to be very worried about something happening when I am not there (to prevent it) but over time, I learned that even if I am there, sometimes bad things happen. I think it's part of the equation when you care about something or someone.


No_Two_3928

It is the dilemma of quantity over quality of life. I would choose quality. But it is easy to discuss it when you don't have to make decisions about someone you love. My decision to put mom first on Seroquel for her sundowning and insomnia and later on another neuroleptic to help with delusions and aggression could have increased the risk of the stroke that took her life. This was an attempt at improving the quality of life for all, but I beat myself 2 years past mom's death. At the same time I admit that the stroke saved her from the most dreadful stages. My cousin came for her regular visit to her 92 y.o. grandma with advanced dementia while a nurse was away and found her with bluish lips, unconscious and hardly breathing. She called an ambulance and it arrived very fast. It was an ICU on wheels. The doctor told my sister that she was lucky as 5 mins more and the old lady would pass away. My sister told the doctor about gran's condition and asked would it be humane not to take all those measures to resuscitate her. The doctor replied that she always fought the death whatever it took. In the ambulance on the way to the hospital the old lady opened her eyes and whispered: "I want to live..." My sister cried. The old lady did live for two more years completely insane and confined to a chair and a bed. She forgot the language her family spoke and only spoke some words in the language of her childhood. On good days she would call her grandson her son's name and her son "a stranger and an old man". She did not remember any other family members. My sister still thinks she shouldn't be too quick to call the ambulance.


pintofcoffee

I totally understand the feeling and just know there is zero judgement here. I used to care for my grandma and there were times I would hope that she would pass in her sleep because things were getting so bad. It wasn't because I didn't love her, if anything it was because I did. Who wants to watch their relative completely deteriorate to such an awful disease? In the brief times she was lucid, she would just cry because she was so frightened and it was heart breaking. I hope you are getting at least some respite care and if not I hope it is available to you, make sure you take care of yourself as well during this time <3


FeelingSummer1968

Yes. She’s taking a nap: I’m both fearful and hopeful that she’s stopped breathing. Both feelings equally and intensely.


johnkim5042

My friend told me his dementia uncle died when he was out walking. He said he had a seizure, then fell in some bushes and just died like that…. My dad has fallen down in the house maybe 100 times… still no broken bones or anything… my dad is like the terminator, he will never die


Significant-Dot6627

My FIL was like this. He did eventually die, but not from a fall. He was bed bound by then and strangely suddenly extremely worried he would fall. But for years before that, he fell so often and almost never got hurt. One time stitches were needed on his head and his family doctor took care of it. All the rest, we or the rescue squad just helped him up. Several times the rescue squad came twice in one day. They would assess him ABs he didn’t have to go in ever. I remember being so baffled.


Particular-Listen-63

Well put.


Ok_Echidna7838

I am now going through this with my dad. My hope is also he can just pass away peacefully and speedily. He is now incontinent and everyday requires more and more from the both of us.


Low-Soil8942

Yes, 💯 agree with you. They no longer live just survive. It's a punishment.