Much too fast, much too slow

forbarbara · March 20

When we adopted our son as an infant, a wise friend told me that no matter how long we had waited and how hard we had tried to have a child, I was still allowed to wish he would just hush up and go to sleep!

I think that’s true for all of us with our PWDs. No matter how awful it will be, we’re allowed to sometimes wish for the end. We may not ever say it out loud but I think it’s okay to think about every now and again.

But then each time someone in this community loses a loved one, it seems like such a nightmare. My heart goes out to each one. Yet still . . .

Emily 123 · March 20

Well said, Barbara

GothicGremlin · March 21

@forbarbara ❤️

SusanB-dil · March 21

agreed. ((hugs))

harshedbuzz · March 21

@forbarbara

All three reflections are spot on.

mommyandme (m&m) · March 21

One of my deepest regrets during our journey was when my mom was grumbling something about a symptom she was feeling (she said plain as day… “Upper Respiratory”… she was an RN) and I told her to please just be quiet. (Unknown to me at the time, she was coming down with the Covid I had given her). She was very late stage 7, I was just getting up and getting things ready for the day, I was sicker than a dog myself and could barely handle anything. She’d also been mostly incomprehensible for months and months by then, it did surprise me the clear words that came out of her mouth. Yet, I shut her down! It pains me greatly as those were the last words she would ever mutter to me. I cannot forgive myself for that and tears fall now almost 1.5 years later.

Please don’t let your last somewhat coherent words be a mistake like this.

edited: this is the first time I’ve told about this painful event and probably the last… I’m so ashamed.

SusanB-dil · March 21

oh @mommyandme (m&m) ((hugs))

We cannot know. I'm so sorry.

Sometimes we have no way of knowing what's real and what isn't with a LO. and you being so sick on top of it, trying to deal with everything... no shame.

forbarbara · March 21

https://alzconnected.org/discussion/comment/202912#Comment_202912

Thank you so much for sharing this. It means a lot.

There’s no shame in being human - please put down the heavy burden you’re carrying and be gentle with yourself.

harshedbuzz · March 21

@mommyandme (m&m)

I am so sorry you are carrying the pain of this. You were human and struggling. Of course, you wish it hadn't happened, but don't let one incident of being a mere mortal detract from the reality of the ongoing tender care with which you treated your dear mother.

HB

M1 · March 22

Agree entirely. What could you have possibly done differently? Nothing to be ashamed of. It happens. Respiratory infections--whether covid are not--are frequently the last final common pathway. Urinary, falls, pneumonia--the things that actually take us out are pretty easy to name.

I am sure what you are grieving at base is that you wish the end could have been different. But you have to remember that there was no good outcome....if it hadn't been this infection, it would have been the next.

I still pray every day that I will get the phone call that my dear partner has died in her sleep.

forbarbara · March 22

@M1 , thank you for saying it out loud.

mommyandme (m&m) · March 22

https://alzconnected.org/discussion/comment/202994#Comment_202994

Thank you… I’ve figured out that Covid wasn’t anything to shame myself for… it’s the fact that instead of listening to her as she tried to speak to me, I shut her down instead and in turn, never heard her sweet voice again. That is haunting me.

mommyandme (m&m) · March 22

Thank you kind friends. The regrets are hard to reconcile for sure. I have a couple of them, including the one described above. I believe saying it “out loud” has already helped. Thank you for this forum being safe to do so. I expressed it to possibly help alleviate some regrets for others as we travel this horrendous path. I do understand that our LO dying from something else prior to the final breath of dementia is a blessing…thanks mommy…I say thank you a lot to her these days. I also wished for a peaceful death while sleeping for my ma. It is only natural and human to want our love ones and ourselves to be released from the pain and suffering.

I do want to apologize for my dramatics. Sometimes my thoughts pour out like a broken dam. Someone on this forum responded to me awhile back that they had been following my “productions”. I never mean to be theatrical with my thoughts, shares and support. I’m not sure anyone really wants attention for their plights with this painstaking journey, well I don’t anyway. Sorry if Ive ever come off as annoying.

I do know that when mom was in her last days I vented deeply here about what I was going through. Thank you again for all your support and wisdom, I’m humbled often here. And…thank you forbarbara for putting out here that we often wish for…just rest… Please care for yourselves too.

Anonymousjpl123 · March 22

Thank you all for this.

GothicGremlin · March 24

@mommyandme (m&m) I'm so sorry you're carrying this burden. I understand why you feel this way, but we're not superhuman, and we don't have powers of precognition. You couldn't possibly have known.

Daily dementia care wears us down. It's only now, just a couple of weeks since my sister passed away, that I realize just how worn down I was - and Peggy was in memory care! You had your mom at home.

You were an amazing caregiver, you always did your best - and I learned so much from you. I always admired your creativity.

ButterflyWings · March 24

(((@mommyandme (m&m) ))) Adding my hugs and encouragement to please not beat yourself up for doing the best you could while yourself suffering from COVID. It is hard and maybe human (at least how we are socialized) not to focus on what seems like "fails" more than our "wins". There is so much angst anytime we don't do things perfectly and we too often overlook or undervalue what we ARE doing.

Just imagine how many, many minutes, hours, days, weeks, and months of caring moments that she fully understood you were providing throughout the years including pre-dementia. And we know you were a truly amazing caregiver dealing with this terrible disease. I'm glad I did not see that comment about "productions". Maybe that poster had a language issue. Dementia is full of drama that is for sure. Sharing here should never be judged, not even subtly. Anyway, I am sorry for your pain over this. Please try to let it go as others urge.

It may be that through no fault of your own, not understanding the meaning of her words may have been the blessing she needed at that time to escape this terrible prison of a disease. I am actually hoping that I don't later regret giving oral antibiotics again - as we are currently doing for my LOs suspected UTI and to help clear up whatever is triggering his asthma exacerbation. What if not knowing (as you did not), and not treating would actually be the kindest way to help him right now? Thanks @forbarbara for posting.

LisaLH · March 25

I say to people all the time...I wish he would fall asleep and not wake up. This is my father I'm talking about. He would hate hate knowing he is living like this. I do not feel bad about it at all.

SusanB-dil · March 26

@LisaLH Understood. My MIL would hate this shell of herself. 'this' certainly isn't her.

mommyandme (m&m) · March 26

Thanks again you kind and supportive people!

Much too fast, much too slow

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