Joy & Austin 28: loss and mourning

[Four is Enough]

I don't fear death as much as I fear living, trapped in a body that doesn't work properly any more; needing to be cared for by others, loss of independence...

[nausicaa]

22 minutes ago, Four is Enough said:

I don't fear death as much as I fear living, trapped in a body that doesn't work properly any more; needing to be cared for by others, loss of independence...

Same. And a loss of dignity. 

My greatest fear is actually getting a TBI that completely changes my personality and strips me of my dignity. I'm terrified at the thought of acting out, shouting racist garbage or nasty things to my family members, or having no sexual boundaries. 

[viii]

If I’ve lost my mind and I’m happy just sitting in a room with a doll, that’s one thing. But when your body fails you and your mind understands everything that is happening around you... good god no thanks. 

[feministxtian]

2 hours ago, Four is Enough said:

I don't fear death as much as I fear living, trapped in a body that doesn't work properly any more; needing to be cared for by others, loss of independence...

This is pretty much where we're at right now. We have a week that has doctors' appointments every day, including chemo. He says that he will make a decision about continuing treatment vs. hospice then. 

His body doesn't work right anymore. He has dementia-like symptoms due to the brain tumors and radiation treatment. He has seizures. I can say (and hope I don't get shit on for this) that I hope his end comes soon and peacefully before this goddamn disease robs him of more. 

[Beermeet]

5 hours ago, WiseGirl said:

The only thing we are guaranteed when we come into this world is that we are going to leave.

I have no fear of dying, I'm just not in any rush.

My fear is Alzheimer's. As Seth Rogan said "I think until you see it up close, you have no idea how brutal of a disease it is." In my experience watching a person slowly die from this terminal disease is awful.  That said my nephew has clear directions to give me whatever "medicine" I need if I were ever diagnosed with it. 

My doctor actually told me to have my papers in order and give her a copy of the "No heroic measures" papers. 

I'm torn on this.  I was a primary caregiver for two grandparents.  One was a horribly painful death that lasted too long due to cancer and she was lucid the entire time exceptat the very end.  The other had Alzheimer's.  Physically fine, just losing his mind. He seemed happy mostly though.  Idk, if I could choose, ime, I'll take the latter.  I can't imagine being in full body, tons of morphine barely helping pain.  

What I'm going through with my son's diagnosis is pure evil. Slowly losing his ability to use his muscles.  Knowing he will pass young.  It's a nightmare.  Unless a cure or way to halt is discovered......it's pure evil all around. And, my husband and I are expected to go to work, pay bills, keep life going like this isn't happening.  It's really hard.  I have a hard time working.  But, no one cares. There is no safety net for us. We have to just keep swimming.

[WiseGirl]

5 minutes ago, Beermeet said:

The other had Alzheimer's.  Physically fine, just losing his mind. He seemed happy mostly though

It affects everyone differently. The Sundowning, fear of water, toilet issues,  rages, anger, violence, loss of dignity, and running away is the manifestation/version I can do without. 

Oh yeah, the loss if dignity...that's not something I want either.

[Beermeet]

Just now, WiseGirl said:

It affects everyone differently. The Sundowning, fear of water, toilet issues,  rages, anger, violence, loss of dignity, and running away is the manifestation/version I can do without. 

Oh yeah, the loss if dignity...that's not something I want either.

Grandpa would forget to eat.  Meals on wheels was a life saver!  Dad and I tried to work in shifts, they filled in.

I'm going to bow out here. I should not be talking about this subject right now. I just found out 2 hrs ago a mom in my small support group for my son's condition passed suddenly due to an aneurysm.  Leaving her husband and disabled daughter behind, at 43.   It's not a good day and I shouldn't be here on this subject.  Be well, all. ❤

[raspberrymint]

I was developmentally delayed and I was educationally neglected in fundie type culture, and when I came of age I had a serious illness and TBI.  That plus the concept of the SAHD movement meant I had to break free to have any type of life.  I recovered from my illness and injury enough to be independent (bittersweetly, even more than most people, as I don't have a real relationship with my parents), work full time for going on five years, own my own home in a city, find love that lasts, and at this point I'm trying to start a family.

I'm not documented as disabled and thus couldn't be a ward of the state.  Sometimes parental means of control backfire as loopholes to independence.

I'm not afraid of losing my dignity because I've been there and many from my childhood would say I was born without it.  At least now I would be with my wife, someone who won't martyr herself and abuse me over it.  Heck, my body still can act like it's held together by duct tape.  It's only a big deal if you make it a big deal.

So yeah, I'm afraid of dying.  I've been sick enough to be threatened with institutionalization and come out on the other side.  I've looked death in the eye and gave it a black eye.  I'm too damn young to go down without a fight.

 

[Sairrr]

On 7/20/2019 at 9:43 AM, viii said:

I admire and have so much respect for those who walk with the dying. Death gives me such bad anxiety. I can’t even fathom my parents dying, and I hate that they’re getting older. Maybe it’s because I’m single and don’t have a family of my own, but I dread the day I’m alone on this earth. 

I don’t really have strong feelings about my own death but I, too, am single without my own family and the prospect of one day no longer having my parents around is awful. I just hit 30 and intend to remain single and the reality of my parents getting older has just been on my mind a lot more these days. I don’t know what I’ll do when that day comes.

[viii]

1 hour ago, Sairrr said:

I don’t really have strong feelings about my own death but I, too, am single without my own family and the prospect of one day no longer having my parents around is awful. I just hit 30 and intend to remain single and the reality of my parents getting older has just been on my mind a lot more these days. I don’t know what I’ll do when that day comes.

I’m coming to terms with never having children (I’m 33 with no prospects so I feel like the decision will be out of my hand soon) but I still hope someday I find someone so I’m not alone. 

[SportsgalAnnie]

11 hours ago, viii said:

If I’ve lost my mind and I’m happy just sitting in a room with a doll, that’s one thing. But when your body fails you and your mind understands everything that is happening around you... good god no thanks. 

Exactly, I saw my grandpa become a shell of his former self due to ALZ. My last memory of him is hearing him scream in pain and confusion. 

[allthegoodnamesrgone]

17 hours ago, feministxtian said:

This is pretty much where we're at right now. We have a week that has doctors' appointments every day, including chemo. He says that he will make a decision about continuing treatment vs. hospice then. 

His body doesn't work right anymore. He has dementia-like symptoms due to the brain tumors and radiation treatment. He has seizures. I can say (and hope I don't get shit on for this) that I hope his end comes soon and peacefully before this goddamn disease robs him of more. 

No shit at all, because this has to be miserable for you, and I'm so sorry.  A friend of mine talked about her friend who had brain tumors after years of caner and treatments and all that, he was 38 when he used Washington's death with dignity law, and ended his own life when he had reached his end mentally, but his body was still kicking. I wish that was a broader option for everyone in situations like you are in.  

I don't want this to sound like I think this is something you should do, I know this is a very sensitive subject for people, and many are horrified by the idea of assisted suicide, and it is a personal choice that again people need to mind their own business about, no matter what route they choose.  HUGS and prayers to you for a quick and peaceful end to you and your husbands suffering. 

[Sullie06]

I think more than the fear of my own death, I have a fear of leaving my children and not being able to see them continue to grow and prosper. Because I believe in reincarnation in a spiritual sense I don't know that my own death will be tragic to me, but the idea of losing my parents is terrifying so I worry that someday, obviously, my children will have to go through the same grief of losing me. If that makes sense. 

[FluffySnowball]

19 hours ago, WiseGirl said:

Oh yeah, the loss if dignity...that's not something I want either.

Years ago, my grandfather passed away after years battling Alzheimer’s. While this particular illness, like countless others, sucks and essentially causes a steady loss of memories, character traits and mental clarity, I disagree with the idea that some illnesses might lead to a “loss of dignity”. Yes, becoming seriously sick and dying can lead to symptoms that are horrendous (his passing from Alzheimer’s wasn’t pretty but without pain and with good medical treatment, I don’t think it was torture), but one doesn’t lose one’s dignity. At least that’s how I see it. Acting undignified and/or in a socially unacceptable way cause of an illness isn’t anyone’s “fault”, it’s just the consequence of a medical condition. Thus, it’s the job of care takers, doctors, nurses, family members and friends to still treat people in such situations with respect and to keep in mind that illnesses, medications, side effects, etc. lead a seriously sick patient to deal with especially difficult circumstances. Their dignity, however, remains intact. 

ETA: This doesn’t mean I oppose so-called death with dignity laws or downplay the horrible death sentences some diseases entail. On the contrary, I’m absolutely in support of allowing people medical assistance when it comes to dying peacefully and without pain. Instead, I’m trying to highlight that because a patient is severed affected by an illness, I’d never say “he or she has lost his/her dignity”. That seems wrong to me. 

Edited July 22, 2019 by FluffySnowball

[Four is Enough]

((((((((((  @feministxtian ))))))))))

[catlady]

22 hours ago, feministxtian said:

 I can say (and hope I don't get shit on for this) that I hope his end comes soon and peacefully before this goddamn disease robs him of more. 

i sincerely hope no one does; they are not in your shoes, so it's no one's place to tell you that how you feel is somehow incorrect.  may you both find peace.

[lumpentheologie]

On 7/21/2019 at 5:17 PM, nausicaa said:

My greatest fear is actually getting a TBI that completely changes my personality and strips me of my dignity. I'm terrified at the thought of acting out, shouting racist garbage or nasty things to my family members, or having no sexual boundaries. 

This is my biggest fear.  I used to be a caregiver for people with traumatic brain injuries, and although they can improve, especially with family support, the ones I worked with mostly lost their personalities, the ability to clearly formulate thoughts, and the ability to know what was or wasn't appropriate.  We were constantly having to deal with really inappropriate sexual advances, but you couldn't really be upset with them because they couldn't understand that what they were doing was wrong. Some of them were still strong enough to be dangerous though. Completely tragic. 

[feministxtian]

5 hours ago, allthegoodnamesrgone said:

No shit at all, because this has to be miserable for you, and I'm so sorry.  A friend of mine talked about her friend who had brain tumors after years of caner and treatments and all that, he was 38 when he used Washington's death with dignity law, and ended his own life when he had reached his end mentally, but his body was still kicking. I wish that was a broader option for everyone in situations like you are in.  

I don't want this to sound like I think this is something you should do, I know this is a very sensitive subject for people, and many are horrified by the idea of assisted suicide, and it is a personal choice that again people need to mind their own business about, no matter what route they choose.  HUGS and prayers to you for a quick and peaceful end to you and your husbands suffering. 

I am in favor of assisted suicide and euthanasia. I wouldn't make my cats go through this, why should "they" make my husband? I settled the debate with myself during the mother's last couple of months on earth. I have no problem with it whatsoever. 

[nokidsmom]

On 7/20/2019 at 12:47 AM, feministxtian said:

When both my parents died, I was actually thankful. I think I will be thankful when hub's suffering ends. He has brain damage and almost like dementia from the tumors and radiation, his body doesn't work as it should, he can't walk on his own anymore (he can't even use the walker). For all intents and purposes, he's bedridden. I mean, what kind of life is it when all the things he loved to do he can't do anymore? His hands shake, he forgets things no matter how many times I tell him something, his speech is slurred. 

@feministxtian my heart goes out to you.  I understand fully what you are saying regarding your parents and also your hubs.

My mother passed in 2015 and my father followed in 2017, it will be two years come October.   I miss them but the overwhelming emotion I felt when both of them died was relief.   Both died from completely different causes but in the end, honestly, their quality of life was terrible.  It was surviving and in the barest, most functional sense, but not living.    It was especially hard for Dad as he was the more active parent in his old age and he felt the limitations very keenly.  For him his suffering was not just physical suffering but mental as he was fully aware of things up until the last week.  I was with him when he passed and felt an odd sense of peace (relief perhaps?) at what was happening.   

[Daisy0322]

I use to be an aid for Home hospice care I loved it but it was just too hard on me. By far though the ALZ patients were the most heart breaking. They lost themselves and everyone they loved slowly and passed away scared many times. I would always try to make things feel familiar for them but when everyone is a stranger it's just hard to ever feel at home 

[lumpentheologie]

20 minutes ago, Daisy0322 said:

I use to be an aid for Home hospice care I loved it but it was just too hard on me. By far though the ALZ patients were the most heart breaking. They lost themselves and everyone they loved slowly and passed away scared many times. I would always try to make things feel familiar for them but when everyone is a stranger it's just hard to ever feel at home 

Bless you for that.  When my grandparents passed, Hospice was the only thing that made it bearable.  I'm so grateful to those nurses and aids and so is my whole family. I imagine it really takes a lot out of a person to see that over and over again. 

[MamabearSS]

I'm mostly a lurker but this topic hits so close to home. My wish and hope is that by the time I'm in my 60's or 70's that assisted suicide for Alzheimer's patients will be legal and accessible. There is a very strong genetic predisposition in my family. My great grandmother had it though cancer took her before the final stages, my aunt is showing signs, as is my mother after a stroke. My grandmother is close to the final stages. My family traumatized me by forcing me to care for my great-grandmother on the weekends so that my grandmother could go get drunk at her husband's cousin's house. I was 12 and the person I loved most in the world would sit in her rocking chair telling me how much she wanted to throw herself into a canal because she had stopped loving everyone. That everyone was evil, trying to kill her or take her money. She became an angry violent mean spirited person.  

[onekidanddone]

My grandmother lived to 103 and was pretty much completely out of it for the last 10 - 15 years of her life trapped in her body after Alzheimer’s took away who she was.

My mom is 95 practically blind and mostly deaf. Her life is reduced to sitting in her living room blasting CSPAN or being in bed blasting CSPAN. She was a librarian, taught citizenship classes, read the New York Times every day and worked until her early 80s. Now she is diminishing bit by bit each day. 

Is this what I want for my future? I doubt I’ll last as long as my mom and I sure as hell don’t want to end up like my grandma. 

12 hours ago, Sullie06 said:

I think more than the fear of my own death, I have a fear of leaving my children and not being able to see them continue to grow and prosper. Because I believe in reincarnation in a spiritual sense I don't know that my own death will be tragic to me, but the idea of losing my parents is terrifying so I worry that someday, obviously, my children will have to go through the same grief of losing me. If that makes sense. 

My kid was in first grade when I had cancer in 2011. My biggest fear and motivation to get well was that I didn’t want to leave her.  She already had the trauma of losing  her birth mother. she couldn’t lose her mom a second time. 

Edited July 23, 2019 by onekidanddone

[Sullie06]

13 hours ago, MamabearSS said:

I'm mostly a lurker but this topic hits so close to home. My wish and hope is that by the time I'm in my 60's or 70's that assisted suicide for Alzheimer's patients will be legal and accessible. There is a very strong genetic predisposition in my family. My great grandmother had it though cancer took her before the final stages, my aunt is showing signs, as is my mother after a stroke. My grandmother is close to the final stages. My family traumatized me by forcing me to care for my great-grandmother on the weekends so that my grandmother could go get drunk at her husband's cousin's house. I was 12 and the person I loved most in the world would sit in her rocking chair telling me how much she wanted to throw herself into a canal because she had stopped loving everyone. That everyone was evil, trying to kill her or take her money. She became an angry violent mean spirited person.  

I'm so sorry for your experience with your great-grandmother. It is so hard, especially at such a tender age. Your family should not have put that on you. My grandmother had dementia but not Alzheimer's. In the end of her life she became very mean as well. It was so hard watching my Mom and Aunt deal with basically loosing their mother even though she was sitting right there. She rarely knew who they were and she would be so mean to them. Which was so different than the woman she had been. She was an Army Nurse, she spent her life caring for others and raising her 5 children (two of which were not biologically hers, my grandfather was a widow with two children when they married). In the end she lost her life to a stroke and I know in some ways my Mom was relieved that her suffering was over but it's sad to think the last memories my Mom carries of her mom are such negative ones. 

10 hours ago, onekidanddone said:

My kid was in first grade when I had cancer in 2011. My biggest fear and motivation to get well was that I didn’t want to leave her.  She already had the trauma of losing  her birth mother. she couldn’t lose her mom a second time. 

I hope you are doing well now. What a scary thing to go through both for your child and yourself. 

[Glasgowghirl]

Joy posted a picture of her Austin, one of the Duggar boy's and a friend cycling to get food at a Sonic a few miles away and someone commented that she needed to cycle more as if she needed to lose weight, she just recently lost Annabell the last thing she needs is people saying things like that.