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I've been struggling the past few days with sheer exhaustion. Between the two jobs and never feeling like I have any "me" time, I've been a cranky mess. Yesterday I took the day off to take Dad to two doctor's appointments, and it's the same old thing... he's getting sicker, add more pills, repeat. Then I got a sad call from an ex boyfriend who informed me that his mom passes away from a heart attack. As I tried to console him, I couldn't help but think how lucky he was to not have to be a caregiver. How terrible is that? I've had a few friends whose parents had the same lifestyle as my Dad that have passed away and I get ... jealous? It's not that I don't intrinsicly love my Dad. I just hate to see him in his current state. He can't see, he can hardly hear, he can't breathe, he can't remember things, and most of the time he can't even poop on a regular basis. The smallest things tire him out and when he realizes that he's forgotten something simple, he has a panic attack. How miserable! Granted, he's been a jerk most of my life, but he used to be strong. Now there's this shell of a man that used to be my Dad that just continues to thrive on ... (another bad thought coming) at an ENORMOUS expense! Here's the thing. I have it pretty easy. Dad is in a facility. Lots of folks must keep their loved ones at home and take care of spouses and kids. Here I am whining about visiting the ALF a couple of times a week. Caregiving has made me a horrible person. I don't want to get old. Seriously... as I look at the folks in the ALF, I often think "God, please take me before I end up in THAT state" I don't want to be some miracle of modern medicine that lives to a ripe old age if I'm seriously incapacitated. This is a disgusting side of me. It's not like I'm willing the man to die (or am I?), but in the spirit of honesty, life would be a lot easier once the end happens. I REPEAT... I'M A TERRIBLE PERSON!!!!

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My shrink has been real helpful at making me reframe "bad thoughts" like not wanting people to tell me what to do and wanting my husband to die. Not liking to be told what to do is not an authority problem. It's that I want freedom.

She pointed out that I don't actually want my husband to die now, because he is still having an enjoyable life, mostly. What I really want is simply not to have to take care of him. That's a much more non-bad thought. I feel much less horrible when I reframe it that way. Even mothers of perfectly lovely children sometimes wish they would disappear for a while.
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I'm thinking of a scene in Grumpy Old Men where the two neighbors are told that a mutual friend has died. How did he go? He died in his sleep. And they reply, "Lucky stiff!" I'm not afraid of dying, but I sure am not looking forward to suffering. I think we all want to go suddenly, all at once, in our sleep. And that is what we want for our loved ones, also. And this sure doesn't make us terrible people.

It was sad to see our mother with dementia. But once her pain was managed and she had round-the-clock care in a nursing home, she was mostly content. She had her kids visiting and she made friends there. And then one day one of my sisters visited and then called all of us and said, "There is something wrong with Ma. The NH is thinking of sending her to the hospital. I'm going there too." And less than 2 hours later she called again to tell us Ma died on the way to the hospital.

And we were all glad that she died suddenly, within a few hours of the beginning of the end. Yes, we would have liked to have her a few more years (she was 96) but not at the risk of a long drawn-out prolonged period of shutting down and being miserable. Like the guys in the movie, we thought "Lucky Stiff!"

To those who haven't been through it, it might seem terrible to be glad when your loved one dies, or to wish they would. If you've been through it, you are not judgmental!
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I truly understand Rainmom.

Isn't it interesting how those viewing from the outside seem to know EVERYTHING?

I remember echoing my thoughts one day, somewhat cruelly... but I said that keeping an animal alive in such a compromised state would be considered inhumane, but we will keep humans "barely hanging on" indefinitely.

It is my only hope that when the time does come, he does not suffer. He's doing enough suffering now. One day at a time...
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My biggest problem is that my mother isn't actually dying of anything. I mean, despite diabetes, high cholesterol and high blood pressure, her numbers usually look pretty good and nothing is actually killing her. She is probably more likely to dies form sepsis once one of her chronic UTI's finally do her in. In the mean time, she constantly complains about back and neck pain (she was just diagnosed with arthritis there), she can barely walk, can no longer reliably feed herself, cant wipe her butt, shower, get in and out of bed.

Every UTI seems to knock her mental abilities back farther and farther. She can't hold a conversation, does not seem to find pleasure in anything. Sleeps 20 hours a day.

So, Mom is dying but she is not dying _of_ anything
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Bravo! Great post and excellent replies. Bravo! Especially Churchmouse and Blackhole - as usual, spot on!

When both my parents crashed at the same time six years ago and my joy ride through caregiving began - I began to think about the pros and cons of which one passing first and who I'd be left to deal with. I felt bad for thinking it and the hits just kept coming from there.

I've never really felt guilty - I know I did my best and every decision I made for my parents was in their best interest. But I've felt bad - a lot.

Much of what I feel is anger. Being angry most of the time can gut you, inside and out. Angry at my do-nothing brothers. Angry at every friend and relative - both mine and my parents who said "you need to...". Seriously? I always wanted to reply "I'd like to see you get her to..." but I squashed it down and got more angry. I'm mostly angry at what this has done to my thoughts of what old age will hold for my husband and me. Is he going to stop showing and wiping his behind? Am I? Will we recognize when it's time to leave our house to move to somewhere "safe"? Just yesterday I told my husband I dont have the energy or enthusiasm to start the work I planned to do on our house when we moved here seven years ago but had to put on hold to take care of my parents. I actually said "but we have to do it so when we sell to move to assisted living we'll have enough money". And yes - that makes me angry - thinking like that. We are only in our early 50's!!!

I too, wished my mom would pass. Seeing the strongest, most driven, most intelligent woman I have ever know turn into a helpless, dependent shell who couldn't even read a magazine or wipe her own behind made me so sad - and it made me angry. I thought that after my mom passed some of my anger would subside- and it has - just a little bit. Unfortunately, it has been replaced with just more sadness.

How do we un-see what we have seen? Un-know what we now know? I don't have an answer for that - and it makes me angry.
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So true, Amy Grace. It scares the bezeesus out of me. So far, my parents don't have dementia and they are mid to late seventies, but, there is still time. I think about some of my friends who have parents, uncles, aunts, siblings with AD. I don't know how I would handle it. It's a lot to deal with it.
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Tinyblu. You are echoing my feelings exactly and no doubt most of us on this forum. I went through the same with my mother last year. Going to the NH and watching her turn into a vegetable was the worst thing I have ever experienced. The reality of our own future is like a slap in the face. You agonize seeing your loved one in that situation and know there is nothing to stop it happening to you. I can't get it out of my head since Mom passed. In the dark of night the fear of helplessness, illness and lingering death hits me. Your feelings are normal.
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THANK YOU SO MUCH EVERYONE!!! After typing that post, I literally "lost it"...crying until no more tears came out.

I really think I'm just very, very tired which leads to being emotional, impatient... all the bad stuff.

I'm glad to have folks here that understand my struggle and don't judge me -- more than I can say for the super judgmental "family" members that spout negativity at every turn but feel that they've done something by visiting about every six weeks to take Dad to lunch for an hour and a half.

I'm a bit better today, and I've learned SO much about aging and how I will handle myself as I age. I don't have children (spent my life caring for others and didn't have time to date, marry, reproduce) -- nor would I place the burden of caregiving upon them. I will look into Long Term Care options, invest wisely, and seek out ways (if possible) to keep modern medicine from interfering with the natural life process.

To quote the movie Forrest Gump... dying is a part of living, and I wouldn't want to simply exist so the medical community and pharmaceutical companies can benefit from my calamity. It's truly sad...

Thanks for listening.
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This points out why I had such a big issue and QUESTION about the Alzheimers's Association latest tv ad. The theme is how with research ONE DAY WE WILL SURVIVE ALZHEIMERS! WHAT? I'm still not sure why they think that surviving with Alzheimers is something that anyone wants. In fact, it's scary. What dementia patients want is how to AVOID brain damage and how to PRESERVE brain function. NOT survival in a state where you cannot function for yourself.

I honestly don't understand how that organization puts out a message like that. It's almost like they have no concept of what it's like to live with this condition.
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Dear tinyblu,

We can all identify with so much of what you are writing about. There is so much stress on your shoulders. Its only natural to feel the way you do when you are working two jobs and caring for an elderly parent. Its certainly not easy. Year after year it would wear any one down.

Please know you are not a terrible person. Only human. The raw emotions all us caregivers go through is overwhelming. I hope you can take a step back and try to find a better balance for yourself. Must take care of yourself as well.
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With ya. And I had it easy compared to many of you. My mom was not a (deliberate) jerk; not a toileting disaster; etc.

But in the thick of it, I envied anyone who had lost both parents. The longer ago, the better.

Oh, to not have the constant worries. To not get those phone calls. To not watch my own life slip away while helping someone else live theirs. To not hear a constant stream of "why don't you..." from the peanut gallery.

In the context of my own family, I am the elder-care pioneer. My parents did not endure protracted deterioration (and bizarro-world "independence") with any of their parents. This was foreign territory for me. And it wore me down.

My caregiving stint is in the rear-view mirror now. Time has not smoothed all of the rough edges. Perhaps it never will.

The past is behind me. As for the future....the thought of my own (someday) feeble, irrational old age fills me with despair.
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Tinyblu..thank you for posting this and thank you to those who responded. I have often felt this way with my dad. I know I am not a bad person but have felt this way many times. It's good to know this is truly a human and real emotion.
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Tiny; I think these thoughts every day. My boss lost both of her parents when they were in their 70s; she tells her siblings at least once a week how they "dodged a bullet"--the one that most of us here are dealing with.

Get hold of a book called "Can't We Talk About Something More Pleasant?" by Roz Chast. It will make you laugh and cry at the same time. Don't drink anything while you're reading it or you will be snorting wine or cola through your nose. She hits all of the high points of the trip we are all taking down dementia lane.

Be well sweetheart. Please take care of yourself.
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Tinyblu...

Every so often, I get brochures and emails and so on from dementia support organisations - Alz Soc., of course, but several others too.

Or there'll be some GreatAndGood person on the radio, lobbying for - well, you know the type. Magic Formula research. Better Funding For Tena Pads. The Here's Hoping! campaign (I made that up, sorry).

There was one in particular, a leaflet called "Living Well With Dementia", though, which I didn't make up. Say what? For every Mr Gibbs (Jeanne's husband, who after all had her on his side), there must be a hundred people who are living in dread and pain with dementia. What's the good part of that?

And I can, alone in private, get driven to physical violence by this kind of bull. I shout, and throw things. I particularly *despise* (as in, long to throttle) beautiful mellow-voiced highly-salaried ladies banging on about the positives as if, if you really really really care hard enough, dementia is nothing more than a wonderful sunset journey.

I want these people rounded up and obliged to work a minimum of 2 days a week in a memory care unit. And no slacking in the activities room, either. Understaffed night shifts with the screamers and biters, that's what they need.

I wouldn't have gone so far as to say to your ex "Lucky break!" or anything crass like that. But when my dad died very suddenly, a wise friend of my mother's said to me: "better for him. Worse for you." Which was some kind of comfort. Your ex's mother will never know suffering again.

You're being realistic. What's happening to your father is horrible. What's happening to the people around him is worse. You wish it weren't happening, for all kinds of perfectly good reasons. The only upside is that he's not having to do it alone.
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You are not a terrible person. Your feelings are normal. I would question the person who looks at their loved one who can't see, can't hear, can't breathe, can't poop and say "I hope s/he lives this way for decades more to come." Anyone with any love in their heart would want that misery to end.
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Tinyblu, you are not a terrible person. You are a human person. You sound like me and a thousand other people on this forum. If you asked anyone at random if they would want to live this way, they would say absolutely not! These are not the good years for your dad. But he did have good years. Sounds like he had many, many good years. So don't stress over your VALID and HUMAN feelings. They are normal. In a way, you are grieving over losing the dad you knew. And you are grieving the life you had before he was so needy. Did your dad have this kind of stress when he was your age? Did he care for someone in this state? Chances are probably not. Someone else here told me that medical science is allowing people to live far beyond natural death. Their bodies and their minds wear out but chemicals and machines keep them going. I don't know all the answers. But I know that you are not a terrible person. YOU ARE NOT. We have all been there and said the same things.
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You are not alone.
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If your are a horrible person for thinking those thoughts....then, nearly every single caregiver here is in that same basket with you.

I do not have it anywhere near as bad as most people who post here, but I think those same thoughts.

I wonder if Mom would really want to live on like this .... if she was really cognizant of all this. I wonder if my entire senior life will be consumed by taking care of her. Would she out live me? Wow...that is a depressing thought!

So..read here for a while, you will discover you are very far from alone. What you are experiencing is pretty normal.
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NO, you are not. I feel the same way!
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