Never ready for this

housefinch

Thinking of you and your beloved partner.

CindyBum

To have nothing left unsaid…what a gift.

M1

Yes, it is. But the rest of it is pure hell. The intake today was a non-event—uncomfortable though with the nurse asking her questions she couldn't answer. It was not the regular nurse who comes—was not familiar with the facility or with dementia, pretty obviously. But it got done. A hospital bed and "comfort kit" meds are ordered.

Honestly, this may sound shocking to some—but this would be easier if it were my dog or my cat because there's no question that euthanasia would be humane at this point. She can't walk without falling, she can't really handle her own elimination, but she's too mobile to put in a wheelchair and have her stay there unless she's sedated. If she were a dog or cat there's no question we would put her down. She is going to be combative as hell—that much has always been clear. She refuses all help with ADL's unless it's me. She fell again yesterday morning because she wouldn't let the sitter in the room. So I think it's going to be Haldol all the way in order to be able to handle her poor shell of a body. But then, if sedated she likely won't eat or drink (refused everything today except a brownie)—so maybe it won't last too long.

GothicGremlin

Man, I am so sorry, @M1 This is the really nightmarish part. Everything you say is true….

wose

Oh Dear God, M1. I’ve got nothing but extreme sympathy for you two. May something or someone step in to ease your burden. May you find a little peace and grace for yourself. I only hope I can be half the caregiver that you are.💜

Quilting brings calm

I’m so sorry M1. I wish there was a real system that could ensure that we could somehow make things easier and better for everyone involved. Our health care system isn’t set up to handle dementia patients medically, emotionally, financially, custodial care wise or any other way. Other than sedation and restraints, we’ve got no way of ensuring people in your wife’s condition don’t try to walk. And no way of making it better, no way of knowing how long it will go on.

Anna2022

I'm so sorry, M1. I'm sending virtual support and strength. From what I can tell, you have trudged this journey with grace and dignity and love for your partner and for yourself. You continue to inspire me.

One hundred years since Alzheimer's was first "diagnosed" and our health care system is inhumane to all involved. I am so angry and sad. My hope is that when this is over for me and DH, I will have the energy and interest to work toward positive change.

ButterflyWings

(((@M1)))

White Crane

M1, my heart goes out to you. I can’t imagine the anguish you’re going through. I wish there were some words of comfort to ease your pain right now. Know that my prayers are with you and I’m holding you close.

Brenda

ThisLife

@M1 I'm so sorry. No part of this journey is easy, but the very late stages are unbearable. But we do. What is humane and what is permitted are awful. Sending comfort your way. Rest when you can.

jfkoc

me too…

Phoenix1966

Hoping that you can continue to draw on that well of strength I know you possess during these incredibly difficult times.

hiya

You are always so wise and so strong. I pray for your and everyone’s continued strength on this journey.

fmb

Know that there are many, many people here who care about you and your DW and are walking with you in spirit on this heartbreaking journey. Prayers for you and all of us and our loved ones.

AnderK

I have little to add, but my heart is with you. Kathy

Rocky2

M1, You are in my prayers and thoughts this morning. I found this part of the journey to be very challenging. Our instincts are to protect, treat and seek a cure even when our intellect knows better. I pray for your peace as you continue to love your partner along her pathway.

Tom

Beachfan

M1,

I have been following your post and can only add that I am so sorry that you and DW have reached this point. I vividly recall how I worried constantly that DH would linger on for months, possibly years (think Crushed), knowing no one, physically strong, but emotionally gone forever. As much as I miss him every day, I am unashamedly grateful that his eventual passing, although somewhat unexpected at the time, was quick and painless. Praying for you that God’s will be done and that both of you, all of us, find peace.

midge333

I am so sorry for you and your DW. On this journey, it seems like things just get harder and harder. It is like our system of care facilitates suffering instead of relief.

mrahope

Feeling for you, too, M1. It's so awful that we can treat our animals more humanely than some of our fellow humans. My sister's friend (who's a veterinarian) always says "better a week early than five minutes late" about euthanasia for our animal friends. If only we could find a way to help everyone who needs or wants it. Meanwhile, trust that you are doing the right thing…may that thought bring some comfort.

ImMaggieMae

Wishing you peace and strength through this late stage. I wish the medical system could be of more help to you and your wife.

Jo C.

Dearest M1, I am thinking of you and am so very sorry for what is happening. Hopefully, a good MD will know a better drug to help than Haldol, and will be able to assist your partner into a more comfortable format.

With matters as they are, it is in all probability best to let her be the guide. If she refuses adequate nutrition, and only will eat brownies or other sweets, that is probably the most effective way to bring her comfort in that dynamic, especially since she is in Hospice. Sometimes, some good stuff can be hidden in the goodie stuff, but that would be up to you how much you would want to pursue that.

You have been a loving and caring partner and have stayed the course; she is blessed to have you by her side and understanding the dynamics as well as you do despite the deep and sad heartache that it brings.

Big soft hug and warmest of thoughts are being sent your way, please let us know how you are doing; we truly do care.

J.

psg712

M1, I am so sorry for what you and your partner are suffering. You have loved and continue to love her so well.

tigersmom

M1, I am so very sorry that you and your dear partner have wound up in this place. Everything about this disease is unbearably cruel. I am wishing you the strength to keep going in this incredibly difficult time. You are her North Star, and you are still lighting the way, however murky the road ahead may seem.

MN Chickadee

Ugh, those days of the facility calling all the time about falls were so hard. I was so on edge and always in amped up mode ready for the other shoe to drop (or like 20 more shoes.) I know how untenable that phase feels, and it truly is. It cannot and will not last, something will give. There aren't right answers or choices now, just getting by and doing your best. It does sound like she may be getting to the end soon, and I hope you can remember your own advice you have wisely given to others about safe passage. You are doing everything you can to make her final days as comfortable as possible. You didn't deal her this hand, you are just doing the best job you can with it, and it's been impressive what you have managed for her. I hope you take it the right way when I say I hope she goes soon and peacefully. There does come a point where yes, you wish they could just be released from this as we lovingly do for our pets as you mentioned.

M1

I take it completely the right way.

I have helped her manage pain meds for her back for 30 years. This morning she is in acute withdrawal because yet again, hospice wanted to change it-she’s in agony, and they’ve already decided to go back to what she was getting before. Such unnecessary suffering on all fronts. I told them, but of course they thought they knew better.

So now she’s too worn out to eat or drink. Yes I hope it’s over very soon.

Quilting brings calm

@M1- wow. Hospice is definitely not the time to swap out what is working. That was the opposite of comfort.

jfkoc

While I am a big advocate of Hospice I know first hand that there are stupid people who get employed by them. I learned the hard way. I switched Hospices after interviewing several.

You are still in charge of your partners care! Further you can continue to use a private Dr.

It sounds like it may be coming more possible to bring her back to you if you can find additional help.

housefinch

Oh, no, I’m incredibly sorry to hear that she’s enduring withdrawal on top of everything. And that you’re having to witness that and manage the emotions that narcotic mismanagement is likely eliciting in you. I hope they get her back on her regular regimen and use hospice meds on top of that (or whatever is needed to rectify this). (As a physician who previously had CRPS, I want to scream at those staff who disregarded your knowledge and did that. Horrible). Hoping somehow she is now comfortable and things move smoothly and peacefully to a rapid close.

Elshack

MI I too pray that the end for your Loved One is near. I think I agree with your children that it is best that she stays where she is and your bringing her home would not be best for her or for you. You have fought the good fight and have been such a warrior and caring partner. Your own health has been compromised and I wish you peace and acceptance of what lies ahead. I am in stage 8 and have been since Nov 24th.

Jo C.

I have been thinking of you and hoping that Hospice has restored the meds that work well and are working more closely with you, respecting your input.

Must be exhausting and I am truly sorry for all that is happening; my heart goes out to you and I send warmest of thoughts your way.

J.