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Mourning my Wife, who's still here...


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I came across this site and decided I needed to share & unload & if nothing else to just get my thoughts & emotions in order.  This might be a bit long, but so is the ordeal that I'm sure many others have gone through too.

My Dear Wife and I are pushing 60 and have been together for 30 wonderful years.  She was a fit, vibrant, active, beautiful woman until about 8 years ago, and has since become disabled.  It seems she's been stricken with a couple of rare progressive diseases that leave her in constant pain, have led to a couple of spinal fusion surgeries, and now her feet have collapsed so she can barely walk.  She's on many pain and nerve medications that have affected her intellectually, emotionally, and this whole burden she must bear has drained her spiritually too.

Finding medical help has drained her emotionally because not many Doctors are familiar with her condition, so they write her off as seeking drugs or they say she's "Depressed".  Of course she is because her life has been taken from her and these dip$h!+s don't know how to help her so they have to put something down.  When she finds a new Doctor with hopes of some help, she goes through the whole cycle again of explaining her condition, and they end up dismissing her. Again.

She doesn’t even want to talk to her friends because as well meaning as they are, they just keep telling her to eat this, do this exercise, and to see this Doctor.  That’s worn on her too, but she does have new friends though some online forums of people with similar conditions.

It's drained her intellectually because first, the pain just sucks whatever clear thought she may have right out of her, and the drugs leave her somewhat dazed and confused some days.  I try to be patient, but sometimes it wears thin and I come off as being irritated that I have to explain things to her so much.  I feel guilty that I do this.

I'm not without problems either, as I have heart and lung issues.  I've had heart bypass surgery - although I'd like to think that like a car with a rebuilt engine, I'm good for another 200,000 miles.  But my lungs are a problem in that as a former smoker I have COPD, so it's getting harder and harder for me to take up the slack in our home getting all the chores done, caring for her, and still working full time.

This affects our sex life too, because sometimes when we try to be intimate, I just run out of steam.  So our sex life is almost non-existent because she's either in too much pain, or if she's in the mood, it's very hard for her to climax because the nerve medications numb her in more ways than one. Then I just can't finish some days so we both end up frustrated.  When we do have a good night together, she feels aches & pains for a couple days after as most physical activity can cause her pain for days after.  I can't even touch her arm or give her a loving rub on the back as the nerve pain causes her to recoil as if it were a hot match.  This gives me more guilt that I contribute to her pain.

She's had days with so much pain, that she looks at me through tear filled eyes to help her, and I can't.  It tears my heart out.  I wonder sometimes if I might come home to find her peacfully in bed with a suicide note on her chest.  She has enough meds to do the trick, and truthfully, I would be relieved that her pain was gone.  She has a brother with Parkinsons who keeps getting worse too, so I wonder if they might have a secret pact.  This also gives me guilt that at some level I might wish this on her.

So I realized I've been in mourning because my beautiful, intelligent life partner has been taken from me - and she's been mourning her old self too.  I also realize much of this is probably normal as people age, so when we said in our Vows many years ago, 'through sickness and health, 'till death do us part' this is probably what they meant.  But I don't know which is worse - seeing your partner slowly succumb to disease and watch them be miserable the whole time, or to lose a partner suddenly through a heart attack or accident.  They both suck.

She does have periods of getting stronger and better in her problem areas, but then she has a setback in another area and she's back to square one. I wonder how much worse I will get, and my ability to help her.  One day while shopping I saw an older man with an oxygen tank slung over his shoulder pushing his (presumably) wife in a wheelchair, who was pushing a shopping cart.  I thought, damn, that's us in 20 years.

I don't know what the future holds, but I do think today is the best day of her life.  It'll only get worse.  And me too.  So I just wanted to get this out.  Thank you in advance for reading this, and sharing any insight, comfort, or advice.  God Bless.

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I am so sorry!  Could you maybe heads up to your wife's friends to NOT suggest things to try to HER, as helpful as they're trying to be, it's wearing, I know.  My sister is severely disabled, blind in one eye, going there in another, and has dementia.  I have borne that burden and taken care of her since her husband of 50 years died a year ago this month.  Now she's turned against me, fights everything I try to do for her, it's very hard and the last thing I need is her neighbor/friends constantly telling me what I should do!  It's been a barrage of it, so I understand how this must be frustrating for you both.

I can't imagine how hard it is going through a little known debilitating condition with the one you love, as your heart is being shredded in two each moment each day.  My heart goes out to you both.  My own husband died all too soon 16 years ago, he had just turned 51.

The only way I know to do life is one day at a time, anything else is too much, I've been practicing this for 16 years now.  I try to look for good in each day, no matter how small, and not compare it to what "used to be" as that diminishes whatever good exists today.  My puppy keeps me going.  Literally.  

13 hours ago, Bob2 said:

I don't know what the future holds, but I do think today is the best day of her life.  It'll only get worse.  And me too.

Oh my gosh, I relate to this!  I wish I could wave a magic wand and make it all better, all I can offer are words and they seem valueless in light of all you're going through.  Adding you and your wife to my prayers and sending you wishes of comfort and peace as you continue this journey. :wub:

Anticipatory Grief and Mourning
Anticipatory Grief and Mourning: Suggested Resources

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Welcome.  you've covered a lot of territory in your post, and much of it is familiar to us in one way or another.

On 9/6/2021 at 7:23 PM, Bob2 said:

I try to be patient, but sometimes it wears thin and I come off as being irritated that I have to explain things to her so much.  I feel guilty that I do this.

This is a real thing, a real concern, never to be dismissed with any platitudes.  We are human, we get weary of the same futile conversations, routines or actions, and we find our patience shorter, or nonexistent. 

I'm sorry you're both caught in this situation.  Just know that many of us here "get it" and we are here to support, having been through it already.

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Thank you all for your comments. As I said, I just wanted to unload and get my thoughts and feelings down.

And I guess some validation too that these thoughts and feelings are normal. We all have our burdens to bear, and to share them makes the load a little lighter?  I always liked the line in the movie "Crocodile Dundee" when he says '...if you have a problem, tell Wally. And he tells everyone in town -- brings it out in the open -- no more problem."

But it's hard not to think of what used to be.  Our living room wall is loaded with family pictures over the years, so every time I sit in there I think about the Yesterdays.

But you're right...One day at a time...because that's all we have. Thank you all again!

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Our hearts go out to you, I hope you'll feel free to come here, post, vent, whatever you need in the moment.  We're here, listening...

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