I am not a monster

PlentyQuiet

DH, age 62,has EOAD diagnosed in 2021. Currently in Stage 4 and doing okay. 

His PSA was elevated and an MRI showed two areas that were suspicious for prostate cancer. The biopsy results came back today: benign.

When I share the results with family and the wider world the reaction I most often get is one of relief and congratulations that he does not have cancer.  And I quietly agree.

But to you, my community of caregivers, I can be more open and honest. I'm a bit sad that there will be no shortcut for him, no bypassing  the worst of this disease. I had a hope of an end that would come in the mid-stages. Now he, and I, will need to endure the long slog of erasure of self and abilities that is Alzheimer's. My children will continue to lose their dad in an agonizingly slow decline. With cancer he would have been more of himself at the end. 

There is no other group who would understand this ambivalence to the otherwise good news of a cancer free test result. I am grateful for a place to be honest.

Otis2424

Thank you. Thank you.

Ed1937

And that is quite understandable to everyone here. My wife passed last June, and I've thanked the Good Lord many times that she didn't have to experience the final stage because she passed peacefully from internal bleeding.

ghphotog

Sometimes I feel uncaring and evil for hoping my wife will die before the worst of it but she is in very good health that she will probably be held prisoner by this disease until the very end.

W.L.

I had to come here today, not to read of others sadness and despair, no not at all. I needed assurance that I'm not alone in this.

I visited my wife today and it finally hit me, she is gone and not coming back. We are in this journey together yet alone. 

She has been in MC for just over a year and the slippage is stunning. She now believes I'm seeing/ dating/ living with another woman. Nothing could be further from the truth but in her mind it is the truth.

My emotions are runni9ng amok today and so hard to control. I cried on the drive home as I tried to make some sense of it.

I finally came to this heart breaking conclusion; it's not her speaking, she is no longer there, she has been replaced by dementia Jane and my Jane is not coming back. She has no way of knowing or understanding the heartache this terrible disease has brought me (and you). I hurt because I remember each word yet I hurt even more because she cannot remember anything. It wrenches my heart to watch her trying to form a thought, the confusion in her eyes, the frustration when she cannot.

So, yes this is hard and yes it is painful for me but it has to be worse, far worse for her.

I miss her terribly. 

In a lucid moment she said; "it just isn't fair"

M1

PQ and WL, your posts both resonate with me.  I spend many return trips from MC in the car in tears.  and PQ, I wish frequently that my partner's lymphoma would recur and take her sooner rather than later.  So I totally get your ambivalence.  Not many other places I could say that, but here it's fair game.

Ed1937

W.L. wrote:

She now believes I'm seeing/ dating/ living with another woman. Nothing could be further from the truth but in her mind it is the truth.

I'm not sure if you know this or not, but that is very common. One day while visiting my wife in the hospital, she said "I probably shouldn't ask you this, but how is your girlfriend?" We had been married for 64 years, and she never had reason to think anything like that before. But now I had a girlfriend. It's hard, but it is common.

Quilting brings calm

PQ- I’m dealing with parents with dementia.  I know it’s different for you than me.  However, I had sort of an epiphany today. I realized that part of my overall negative view of my life recently is because of something like this.  I’m just hanging out waiting for  something to  come along and take them sooner than the dementia will. Mom is fairly healthy, nothing life threatening - just qualify of life issues. Step-dad has all sorts of things that could be life shortening- yet he just continues on.   I know they aren’t happy being this way because they tell me all the time.   The fact that I’m hoping for them to go quicker makes me feel like that monster you refer to in your subject line 

Anna2022

I totally understand this. And I agree.

Just Bill

What a weird cross wiring of emotions. I hope she goes quietly in her sleep before it gets really bad. So I am both sad she didn't pass every morning and happy she didn't pass every morning. I think that is long term grief. I have prepared myself that she will die soon. Kinda like waiting for a bus that you don't know when it is coming but you are packed and ready to get on. Sometimes you are glad the bus is late, other times you want to be on that bus and down the road already. Hopefully when she is gone I won't feel guilty for having these thoughts. They come from a place of mercy for a person I love very much who wouldn't want to be where she is right now when she was whole.

Buggsroo

I get this in many ways. I look at my husband who now has a bushy beard, stinks to high heaven, bites himself, makes weird noises with his fingers and leaves me turds. Yes I hope that he goes in his sleep with no suffering. No, I can’t say this in public. So this forum is a god send. When he was 60, he had prostate cancer, I prayed to God nightly to spare his life, which happened. However, I had a feeling I would pay for this intervention, and here we are. I am so thankful for this forum, where I don’t have to be a frigging saint.

Gig Harbor

In my support group there are some of us who pray for pneumonia or sepsis which we would not treat except for Tylenol and morphine. We can’t say this to a lot of people but it is how we feel and what we would want for ourselves.

Pat6177

Nope PQ, you are not a monster. And, no one knows what lies ahead for any of our PWD. Your DH may yet die of something other than dementia. My DH has chronic kidney disease and I hope that he dies of that and does so before hitting the advanced stages of ALZ. And he does too and often tells me he hopes he doesn’t last more than a couple more years.

RobertsBrown

Thank you.

toolbeltexpert

Here is my experience. I do talk with folks about this, my dw has a few family members left. I have talked with her sister, she really doesn't grasp how soon this could end or not nobody does!

This topic has been brought up before and it's good to be able to say what we really need to say. My wife has bronchitis and it got pretty bad last week. We did antibiotics which seems to have done the trick again. I know left untreated it surly could lead to pneumonia. I guess I am not ready to let go as much as I talk with others as I think I am. I have prayed thst she might die in her sleep, of a heart attack. She is a dnr. I am greatful to be able to say it here, it gives me courage to have this conversation with others. 

I wouldn't judge anyone for having the thoughts we all think. We may be just brave enough to be honest. 

Stewart

Another Day

OMG, I never realized that my thoughts are not out of the ordinary. I've had thoughts of "what if" and then felt so guilty for having them. Another eye opener this morning.....I've been accused any number of times of seeing someone. My response to DH, how can that be, we never go off of the property.

M1

FWIW, I am also accused of infidelity.  I think it must somehow be what makes sense to our LO's.  They can't understand any other reason why circumstances have changed.

ghphotog

Not sure about everyone else. I do hope she goes before stage 7 and all that entails but I'm not the kind to just let some other disease that is treatable kill her. It goes against every fiber of my being. It truly is a an impossible situation to want to see her go and at the same time keep fighting a battle that can never be won.

RCT

I am so happy that you can be totally honest here.  I do understand. My husband just entered mid stage I think so a long road ahead but I hope another physical problem will take him before end stage arrives. Sending prayers.

Joydean

I too have prayed God would take him before we get to stage 7. Every day I see him progressing, and I know he is dying from this horrible disease and it’s a slow and degrading death.

No you are not a monster because if you are so am I!  It’s because we love our PWD that we are asking for some dignity for them. 

harshedbuzz

It is not monstrous to wish to spare your family-- your DH, yourself and your young adult children-- the pain and indignities of the final stages of this disease. You are not alone in this.

That said, you might want to think proactively about how you approach preventative testing and procedures in the context of this terminal diagnosis. It can help to ask yourself what you intend to do with the information gleaned from testing. This is especially true of conditions, like prostate cancer, which would not be likely to impact him in his lifetime. This could spare you the weight of making a choice for him and spare him potentially unpleasant treatment.

HB

[Deleted User]

The user and all related content has been deleted.

mrahope

Oh, my goodness.  It is so good to know I'm not alone in this.  My DH is 84 and has suffered, and survived (with my help) heart attacks (angioplasty and bypass) and two serious cancers (sarcoma and colon).  Now he is suffering from dementia and I wonder if I did him a favor by helping him survive these things, only to die a lingering death from this.  I am so glad I didn't know then that the dementia was coming, or I might have allowed him to forego treatment, which he sometimes threatened to do.  Hindsight is 20/20 for sure.

Kibbee

I've had these same thoughts as well, and my friend who cares for his mother with Alzheimer's feels the same way.  Neither of us want our LO to linger on and on, perhaps in fear or experiencing discomfort or pain, while their quality of life declines, diminishes, and disappears altogether.   We speak freely about this, and acknowledge that if our LOs just didn't wake one morning we would be sad, but also relieved that their difficult journey is over.  You are not alone in these thoughts, and you are not a monster for having them.

  

Lgw

Thank you for your thoughts.  My dh has vascular dementia and late stages.  No longer moves, I change his diaper 5-7 times a day.  With Hospice I can no longer leave the house for any length of time.  I pray daily that I will wake up and he will have passed.   I know the loving man I was married to for 41 years is no longer here.  His body is still breathing but not thinking. Thank you so much.

MaryG123

No, we are not monsters.  Far from it.

Paris20

Plenty Quiet—I get it. My husband had a prostatectomy in 2010, because of cancer. He is probably in late stage 6 AD and I’ve recently posted about my latest challenges. Two weeks ago his doctor called me to discuss an upcoming visit to DH’s skilled nursing facility. Among the blood tests she said she’d order was the PSA, a test to detect recurrence of prostate cancer. I was thinking, why? There’s no way he could have surgery. In addition to AD he had a massive stroke 10 months ago.. Well, she forgot to run that test. I’m not going to call her to remind her.

Dio

Thank you for this thread! I've been feeling like a vile monster with these awful unkind thoughts. Thanks for setting me straight. In touring MCFs, I literally said to the administrators, "I'm not here to prolong his life. I'm here to help him transition with dignity and comfort." On a special Dementia Advance Healthcare Directive, it states clearly no hand-feeding, no tube-feeding. Relieved that I'm not alone.

GothicGremlin

Yeah.....

It's been painful watching my younger sister decline.  This last month has been especially rough as she slides from late stage 6 to early stage 7. Two months ago she was walking on her own and sleeping well. Now, she's being assessed for a walker and/or a wheelchair (tbd), and she's moved to a hospital bed so that she doesn't fall out.

Like Arrowhead's wife, Peggy whispers most of the time, and is mostly incoherent. She's stopped using utensils for eating with the exception of periodically using a spoon for soup (but that's going to end soon, I fear).

The thought has passed through my mind more than a few times recently that it wouldn't be terrible for her to pass away in her sleep. And then I try to banish the thought before I go any farther with it.  And of course I feel terrible that I even let that thought in for even a moment.

I don't think I'm a horrible person, nor do I think anyone here is horrible.  What I think is that we want to spare our loved ones from more pain and indignity.  I know in my sister's case if she knew what I was doing for her, and what her close friends are doing for her, she'd be mortified. She'd also probably burst into tears. So I take some comfort in knowing that at least she's being spared that bit of knowledge.

W.L.

PQ

I just realized I kinda hijacked your post. I thought I was starting a new one so I apologize for that.

As to the subject of your post, I too have and in fact still do pray for God to call her home. Do those thoughts make us monsters? No, not at all, if I didn't love her as much as I do I would maybe be selfish and want her to stay around but instead, when I see the combination of fear and confusion in her and know she has no quality of life at all I just want her to be at peace and she will never know it here.

God bless you and may He give you  peace.

sawn

OMG, I though I’m the only one having these thoughts.. I really want him to go.. can’t see him like this.. I feel like he should go before I start hating him. I can’t say this to anyone but here..