I think I am anticipating .... grief.

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I think I am anticipating .... grief.

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But sometimes I find myself thinking of my Mom's slow but inevitable march to demise in a cold calculating fashion. It's gonna happen. I don't expect a miracle. There's never any good news in her treatment, not even when she sees a neurologist.

Her Parkinson's is so bad now that any moment now I am expecting that phone call saying that she's aspirated, caught pneumonia, fallen, complications of chronic constipation etc.

Each time she's pulled through. Each time she's significantly weaker. Its tiring. I do the best that I can for her...but I can't cure her.

I would smash all the prizes I got in med school if it meant I could get my parents to have a smooth aging process and die of one shot heart attack ...instead of this prolonged suffering.

Sometimes I don't even feel like praying about it...because my clinical sense tells me that my mother's suffering is never gonna improve.

I dunno how to express it. I feel myself....slowly detaching emotionally from the situation. Each time my mother has a crisis and pulls through, I react less.

It's not that I don't care....its just that....the past 5 years of rapid onset Parkinson has just been a speed train of worsening symptoms.

The queen of the house is ....long gone. What's left is a frail shadow.

Depression Grief Parkinson's Disease

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My 65 year old brother is in a hospice in a nursing home with a terminal glioblastoma. It was exhausting dealing with doctors, neurologists, hospitals and nursing homes from 1600 miles away before he got to where he is now. Throughout this year the grief has dropped in unannounced at the weirdest triggers, as it does for my 23 year old niece—daddy’s girl. He was a great guitarist, very intelligent and had great wit, with wonderful counsel for his daughter. To watch him go from there to a person who is not well oriented to time or people, can only stay present for about an hour and has significant aphasia has been horrible. Placing him in hospice was one of the most difficult decisions I’ve ever made. His niece and I had to face his death. No treatment would work. We’re already grieving because we know it’s coming up shortly. That’s anticipatory grief. The best thing is to just let the tears come when it’s an okay time. They’ll let up.

Recently I suddenly thought of what life would be like after he passes. I felt sad but peaceful. Your clinical knowledge is correct. She won’t get better. I don’t really think it’s a bad thing to be detached. I think it’s a coping mechanism for right now. Your writing tells me you care very deeply. And you are worn out. Your bandwidth is getting overloaded.

But this is sooo draining. At one point my brother was in a horrible nursing home. I pretty much expected a phone call in the morning to tell me he had died during the night. Keep your obligations besides your work to a minimum. Get plenty of sleep and rest. Listen to your body when it just wants to lay down—other stuff can wait. Caregiving is one of the most difficult things a person can ever do.

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I lost my son at 22, and that was unbelievable. The pain of it unbearable. After that my husband after caring for him after stroke for three years. I did not cry except a few tears when I heard taps being played. Did not cry when my father died. I probably have no tears left at all for my mother when her day comes or anyone else again. ( also lost 6 members of my family in a car accident at once)
I think I am numb to it all.

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Oh Shari49 I am so sorry for your loss of loved ones.

"For even solace can be sourced from sorrow." by Amanda Gorman

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The way I used to look at my Mother being sick and her demise, is that God is slowly taking her away from me (in such a fashion that I can better adjust my life when she passes.) In other words you are not detaching emotionally, you are getting used to the inevitable situation. You will still love and miss your mother when she leaves you. It only natural that you have difficult feelings, and sometimes conflicting feelings about your mother's condition. She still loves you, but cannot show or tell you anymore.

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My mother is 95 next month. She has been 'dying' ever since I was a kid, really, or at least claiming to be. She's been living near me since September of 2011 and has had every imaginable thing wrong with her ever since the end of 2011 when she was hospitalized with ulcerative colitis and almost died. Then on Christmas Eve, at midnight, an IVC umbrella filter was placed in her aorta after she'd developed a DVT in her leg right before she was to be released from the hospital. Then came the PEs (in spite of the filter), and the severe depression, then my father falling and breaking his hip, the discovery of his brain tumor, then the emergency move into Assisted Living and me having to break down their joint household and consolidate it into a tiny AL apartment, move mom in with him, kicking and screaming. And on and on and ON until today, where we're 90 falls later, with no serious injuries as a result, with advanced dementia at play, pulmonary hypertension diagnosed, CHF, about 20 more trips to the ER, rehab, hospital admissions, and mom in a wheelchair, on hospice now, clinging mightily to life, thought to now have another PE with oxygen levels down to 68 at times, gasping for air but saying NO to oxygen. To say I'm exhausted is a gross understatement.

I have times where I'm certain she'll live to be 100 and outlive me.

The past 10 years has been a speed train of one issue after another for her, with me as the only child, trying to hang on for dear life but nearly falling off the track at every hairpin turn.

I've just recently emotionally detached myself from the situation as much as humanly possible. I think I've finally put it all in God's hands, where it should have been all along, really. But I've wanted to be her advocate and her savior all these years, and to some degree I've succeeded, but for the most part I've failed. We can't play God, whether we're doctors or just ordinary laymen. We just sit back and watch what happens to our loved ones and hope for the best. But above all, we hope for a painless end to all the endless years of suffering for ALL involved.

God bless you and help you navigate this emotionally exhausting journey you're on. It's not easy, that's for sure.

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Remember those stages of grief from Dr. Kubler-Ross:
1 - Denial
2 - Anger
3 - Bargaining
4 - Depression (seems like you are here)
5 - Acceptance (seems like you are moving into this stage)

Seems like everybody goes through these stages. It is a process and a journey. Most folks don't get to acceptance until a year (or more!) after their loved one passes.

In the meanwhile, try to make mom's current life as pain-free as possible with little moments of enjoyment. Seems like this is a goal for all of us in a caretaking/caregiving role.

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A physician should never see any of his/her relatives with a clinical eye, because of the loss of objectivity. Either too optimistic or too pessimistic. As you know, Parkinson's is an incurable and progressive disease that kills the patient in the end. You're the least indicated person to be her caretaker, because you're too involved emotionally with the subject and cannot apply correctly your clinical knowledge. She has an advanced stage of Parkinson's and there are a lot of worse things to come. For all realistic purposes she is terminal, but not necessarily right away. She belongs in an assisted living facility or nursing home. There is no cure for Parkinson, only medicines to try to relief the symptoms. However, they have tons of very serious side-effects that can even make her psychotic or delirious. This is the opinion of an old retired physician.

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Please, don’t feel guilty. Parkinson’s is a terrible disease. Your Mother is not the person you once knew her as. Your grieving has already started. You have already experience loss of the person you have always known her to be prior to the disease.
Your mind has started to prepare you mentally for the the final loss of her. It is a necessary human step in preparing. It doesn’t mean you care any less.
It’s so much different than experiencing a sudden loss.

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“slowly detaching emotionally from the situation. Each time my mother has a crisis and pulls through, I react less”
This describes exactly where I went with my mom. Her decline following strokes was both dramatic and painfully slow. It was soon obvious that there would be no improvement, just a long goodbye. And I visited and cared, but I also grew numb in many ways. Grief, both while I had her and after she was finally released from the nightmare, came in waves. I have no good answers, just know I can relate. And I wish you and us all peace

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You're doing exactly what I did. By the end, I had to make an conscious effort to tell myself that the odd little lady at the memory care place was actually MY mother, because the mother I knew died a long time ago. The lady with dementia kind of looked like my mom, but her behavior, her health, and her detachment from ME told me that she wasn't my mom. It was an endless internal struggle with myself.

I'm warning you now, when Mom finally goes, you're going to feel like you lost two people -- the mom you knew, and this shell person you've been stressing over for years. I realized after Mom died that I'd buried my grieving for the mother I knew because at least I still had the physical version of her, but once the physical Mom was gone, I got a real one-two punch to the gut that still has be reeling five months later. I never expected to be grieving two people.

One of the toughest things to do is to turn off your "radar," that tendency to have one ear cocked for the phone call with the latest crisis. I realized a monthtafter my mom's death that I had all the phone ringers turned on high so I would hear it ring across the street if need be. I finally turned everything down, and somehow that helped me begin to unwind a bit.

You have my sympathies. You're on a long road with no shortcuts.

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You are so right in every way. I just lost my Mom yesterday and this is exactly how I felt but couldn't put it into words. It was sad when I recognized my mothers sweater at the nursing home but not the poor lady hunched over wearing it. Yes it is awful because there was nothing we could do to help them.

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You are in the right place here.

There are so many of us that are standing with you with the Anticipatory Grief.

Maybe picture us all with our arms around you, and each other. We are a HUGE group that GETS IT.

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I know I hardened myself. I was afraid to show any emotion or I would break down. I am one of 3, the oldest and a girl. My brothers were not around. Decisions were left up to me. I could not be emotional. Decisions should not be made on emotions. I had to be the strong one.

Parkenson's is an awful desease. I just lost a classmate to it at 72 years old.

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Anticipatory grief is so common among those of us who care for an elder that it is almost inevitable. Once my mom was in her 80's I began to wait for the fatal heart attack that we all felt would take her from us but despite her health history it never came, instead she got a whirlwind decline into frailty and dementia and died at age 99. Its hard: physically, emotionally and spiritually.
This article (and the comments) might resonate with you

https://www.agingcare.com/articles/grieving-before-death-terminally-ill-116037.htm

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Thanks for the read. Yes ...the word I'm looking for is tiredness. Its exhausting maintaining this constant feeling of dread

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Sorry that your mom has Parkinson's and isn't doing so well.

I think that your view on this is very realistic. I don't think it is cold and calculating. Being a doctor, you KNOW that this is not going to improve and it is a horrible disease that just keeps marching forward.

Don't be hard on yourself. Your reaction and experiences seem pretty normal to me.

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I think I am anticipating .... grief.

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