My mother got a debilitating series of urinary-tract infections that basically shut down her brain. First it was assisted-living, then an adult family home, then nursing homes–all the while, in and out of the hospital. It got so I dreaded getting phone calls at night. The last few months, there wasn’t really anything there, and when she finally died, there was no doubt in my mind that she was better off. There were only two good things about it: She had decent medical insurance (HMO), and there was never any shortage of money, so we could go for the assisted living, etc., without worrying about how to pay for it.
Oh, and this is exactly how it is. That realization, that they’re not going to get better, is enormously disheartening; American culture is full of happy endings, and it’s quite a shock to realize that there isn’t going to be one. And then you start to say goodbye in your heart, and you start thinking that maybe death…
It’s not necessarily that you want your dad dead Otto, it’s that you want his suffering and the suffering of the entire rest of the family to stop.
My husband’s grandmother has advanced Alzheimer’s, diabetes, and is generally in exceptionally poor shape, but somehow holding on. She doesn’t recognize her family, she doesn’t know anyone, she doesn’t know who she is, she doesn’t recognize caregivers, she doesn’t realize she needs regular blood sugar checks and insulin injections - she thinks the people are torturing her. She honestly believes it. She isn’t getting better - there’s no chance she can get better. The family is hemorraghing money they don’t have to pay for care for her. Everyone in the family is stressed out, her only child (my husband’s mother) is one thin inch from the edge.
My husband is racked with shame and thinks he’s a dreadful person because he occasionally thinks she would be better off if she just passed.
He’s not a bad person, and neither are you. Death would be a mercy. It’s not shameful to hope for mercy.
Reading back over that this morning I think you may be correct. Apologies, Rigamarole!
In the last two years I lost both of my parents.
I didn’t have to go through what you are experiencing now, but the specter of it did hang before us for a while. (With a doctor, a nurse, and two other medical professionals in the family, we knew all the bad news well before the doctors told us.)
Now one of my clients is in very long term recovery of one of the three things that are killing him. The other two are still killing him. It sucks so badly, because he doesn’t get to make his own decisions, and the doctor is going to save his life no matter what. That means he gets to die away from the only home, and the only friends he has. Everyone thinks I am cruel and crass because what I say (although not directly to my friend) is “I wish she would stop saving that poor man’s life!”
Dying is a part of life. It comes to every family, and every person. Seeing it coming for years is a dreadful misery, not just for the dying person, but for everyone who loves him. I hope your father’s passing is eased, for him, and for you.
Tris
“Being deeply loved by someone gives you strength; loving someone deeply gives you courage.” ~ Lao-Tzu ~
Otto, I can so relate! A year and a half before she died, my mother was diagnosed with inoperable lung cancer. A few months after that, she was diagnosed with congestive heart failure. She was only 59. Her last few months were so painful that the doctors had her liquid morphine. You can believe me when I say that had she, at any time, asked me to pour her a 6 oz. glass of the stuff, I’d have done it. She was also losing blood internally for reasons that were never discovered. She had to have at least one blood transfusion each week. Finally, she got so weak she couldn’t sit up for the ride to the hospital. Her doctor said she could take an ambulance to the hospital, and my mom asked what would happen if she just stopped gettting the transfusions; the doctor said her heart would work harder and harder to circulate what little blood was there, and she would go into heart failure and die. Mom said “Let’s do that, then”. She died two weeks later, and it was a relief for all of us.
When the final months are like that, our loved ones are not living, simply prolonging death.
It won’t be up to me. He and my mother are doing all that. They both have all the paperwork they need so they can shut off each others’ machines and what-not. Last night was the first time it was bad enough that DNR discussion came into it.
Thanks for the good thoughts everyone.
Honestly, I wasn’t trying to be anything. It was the first thought that popped into my head, and it even seemed callous as hell to me, but upon a brief introspection it was the way I really felt, so I posted.
You can attack me for it if you like, I’m not debating, but I just feel like I would never want people putting that much effort/energy into a losing battle to prolong my own life for just a short while longer when I’m at the end of my rope anyway. It would be a burden to the ones I love, and what’s the point?
Jesus, do you do that in everyday conversation, too?
Sure, sometimes. When I feel strongly enough about something.
FTR, I was kind of shocked by Rigamarole’s first post but upon reflection I get what he’s trying to say. I bear no ill will.
**Otto **- I am so sorry you are going through this. Your wanting him to die is a sign of your compassion.
I did a few weeks of constant DNR decisions when my mother was in intensive care and it was hell. That was easier than what you are doing - she had a slim chance of a recovery, which she managed.
When the only option is prolonging suffering, I wish they would just let us be kind, as my father begged me to do when he was dying of cancer at only 54. That is my only regret - not that I wished for his death to come as fast as it could, but that I couldn’t help him go when he was ready.
All the very best to you and your family.
Lynne
I sympathize, Otto (and everyone else). My great-grandfather is 88 and the past decade has been slow, painful torture for him. He’s going to hold on until the very last moment though, for my great-grandmother. She is 84 and has Alzheimer’s, as well as the MS she’s been fighting for 30 or 40 years. If he goes before she does, I’m not sure she’ll even be able to remember that he’s died since her short-term memory is non-existent.
They’ve been married since 1938 and before they were moved into their assisted living facility I suspect they had a plan to kill themselves together when they felt the time was right. I hate feeling this way, but sometimes I wonder if that might have been the most merciful thing. They’re both in so much pain, so helpless. That’s not living.
Otto I can understand how you feel. I’ve been through this with my own father. Eve said it best:
My thoughts and prayers are with your father, your family and you.
I, too, feel your sorrow, Otto, and extend my best wishes for a speedy and satisfactory resolution.
I run a small charity for two rare autoimmune blistering diseases. One sub-type is 95% fatal because it always comes with cancer, which means if you treat one, the other kills you.
One of our volunteers is a survivor–so far–of this type. He councils other patients facing this deadly dilemma. Recently he lost a patient with whom he had grown unusually close and he took it very hard.
To help him deal with this loss, and to help this hero deal with his on-going mission, I searched Google for “for hospice workers” and found a number of helpful website and books. As a starting point, I offer these webpages.
http://www.americanhospice.org/griefzone/articles/hospicestress.htm
http://dying.about.com/od/index.htm?terms=hospice+workers
Maybe now would be a good time for each of us to make sure we’re prepared for the inevitable since one never knows when it’s time to go.
Myself
My good thoughts and wishes coming your way, Otto. When my grandmother was dying from lung cancer, I felt the same way.
It is a shitty situation for all involved. You are not alone and you are not the first to walk this path. The reason, yes there is one, that you have to walk this path is to learn something. Whatever it is you learn might not show itself immediately, but the lesson is there.
The sick won’t get better and slowly get worse in very small baby steps. The medicines and their contraindications are more than likely worse than the illness itself. It is an entire cyclical world of WTF and WTH and OMFG WE ARE KINDER TO ANIMALS THAN HUMANS!!!
All you can really do is take the whole thing into your hands and say, " Well, I am in this for the long haul. This is my job and my job to do with dignity. Some days are going to suck beyond my comprehension, but there isn’t anything I can’t handle. Help is always available. My job is to help this person find peace, comfort and contentment. I don’t know how long this task will take, but I will promise to do my best."
That’s a nice thought, but there is no “reason.” As Mr. Mike used to say, “There is no moral, Uncle Remus. Just random acts of meaningless violence.”
What have I learned from my mother being horribly tortured to death for years? That the universe doesn’t give a fuck about us, life can be damned cruel, and when my time gets close, it’s a lead aspirin for Baby.
Otto, I was talking about something like this with my best friend last night. Her grandmother has Alzheimer’s and we talked about how it would be better for everyone if she died in her sleep before it got much worse.
When my great-grandmother had it we moved in with her so she didn’t have to go into a nursing home. It was a year of agony for her, my mother and brother. Dad and I were at least away a lot (he worked long hours and I was a senior in high school in our old house until summer/college freshman on campus later on) except during the summer in my case, but they were there with her all day every day since my brother was home-schooled. I wouldn’t wish the disease - or the caretaking - one someone I hated.
Sure, you can learn that you are capable of hating someone you loved your whole life because they’re hurting other loved onesso much; the only way a lot of us can deal with it is to think of Alzheimer’s sufferer as being completely divorced from the person you loved. Over here is great-grammy, over there was the bitch. Great lesson. I’m sure I’m a better person for it. :dubious:
Eve is too often right. This isn’t Tuesdays With Morrie, this is real life, and in real life terrible things sometimes wash over you without leaving some sort of grand epiphany as a consolation prize.