Total and complete basket case

mommyandme (m&m)

This is the only place I can come right now. I don’t even know where to begin. I’ll be all over the place but hopefully saying it “out loud” will keep me from panicking further or having my own heart attack.  

I didn’t come prepared to this gun fight. Totally thought I would be when I signed up for taking care of mom and having her die at home with me still being her primary F’ing everything. This feels so wrong to vent especially since I’m sitting vigil with her trying to make her comfortable, round the clock meds. etc…. She’s the one dying after all. I’m not sure how much more I can endure. Hospice might stop by today but didn’t yesterday. Yes they’re available but… I just wasn’t prepared. If this darn website loses this post I don’t know what Ill do. anyway…This is raw real time for me. I’m so nervous because I just don’t know how to finish this when I’m about to LOSE it. But how can I feel this way when my sweet little mommy is… whatever she’s doing right now next to me. I’m like, “JC woman, cmon already!!! , I know you’re a stubborn woman but OMG! “  Hospice people say, “oh tonight, “”by tomorrow, “”we won’t be back Monday. “ I think we’ll be here all week and then the crumbs of the human I am will hopefully get mopped up. 

Shoulda thought about the hired health nurse. nope didn’t think of that. cause this wasn’t going to be so physically draining on top of every other emotion under the sun. Not enough sleep or much food. The meds I’m on for the darn bronchitis i got from the darn Covid that I’ve killed my mom with are making me a jittery vibrating mess. 

I begged palliative and hospice when I was quite sick. this has been going on so long!!!! that sounds so pitiful. I had no idea this would be so hard. Shes choked so many times when I trying to give her meds, now one of my main duties is riddled with anxiety. and it’s CONSTANT meds…. CONSTANT. I need the F’ing meds. i’m pathetic. 

Would I have it any other way…. nope… I’m an idiot. and… I hate losing my mom. I don’t know how to lose my mommy. And it feels premature. She wasn’t ready.  

When I helped my sister pass, she was actually in a hospice facility with people taking care of her comfort. I just got to hang around and be the great human being I am talking to her and telling her lovely things. It took less than 48 hours. Her cancer killed her first. moms just dying of no sustenance.  This is horrible. I had no idea the tremendous physical and emotional strain Id be under. Still responsible for her everything!!  I can only apologize over and over again and love on her. I’m basically doing this completely alone, except now I guess. Hope I don’t regret writing. hope it helps me. Wish I could ask my mom what to do. Oh mommy!!! 

mommyandme (m&m)

nope… still panicking…

jfkoc

We would come and be with you but all we can do is be with you here.

Personally I think every emotion you are having is reasonable as is being a basket case.

Is there anyway you can bring in some hired help at least for the night hours? An agency like Home Instead?

If your mother is activvely dying the the meds have likelyoutlived their usefulness. Check to see if you can stop giving.

One last thing...the shower is a great place to scream.

Hold tight...write often and please know how much we care.

Ed1937

mommyandme (m&m) wrote:

the darn Covid that I’ve killed my mom with 

Knock it off! That kind of thinking will not do either of you any good. I'm so sorry it's so darn hard, but you had nothing to do with killing your mom. She's not even gone!! You have gone way beyond the call of duty for her. You have done everything right, and nothing wrong. You are a loving daughter, and she knows that. She also knows she's very lucky to have you in her corner. 

I wish there were some way for me to make it easier for you, but the best I can do is support you and say a prayer for both of you, which I have already done, and will continue to do.

loveskitties

Watching over someone who is dying is so very hard...I too was by my sister's side as she died of cancer.

Fortunately my dad was in MC on hospice when he passed peacefully in his sleep...it was the early morning phone call with the news that was hard to take.

Dying like all else in life is different for each person.  Some seem to hang on because a loved one is there, but as soon as they go for food or other break, they pass.  Some seem to like the comfort of a loved one who tells them how much they are loved and that it is ok to let go and that others are on the other side waiting for them.

No one can really predict how long the process will be, but your own emotions may be transferring to her...keeping her there.

For my dad we stopped all meds...only authorized pain and comfort meds...fortunately he didn't need either.

Hope that you can come to peace with the situation, knowing you did all possible for your dear mother.  You did not kill your mother...regardless of what you might think.  It is her time.

Wishing you comfort and your mother a peaceful passage.

MN Chickadee

We're here with you. I was in your shoes 8 month ago, watching my mother die from the covid/late stage dementia combination that is just too much for a body. Even though she was late stage Alz I wasn't ready to let her go. 

First off, you can do this. Have your freak-out, feel all the things. That is normal. But you can do this. Just as our mothers did, you will get through saying goodbye to the person that brought you into this world. I spent much of the active dying time feeling like I would jump out of my skin. The adrenaline feeling is so gross. But try to remember what you are going through and feeling are normal, even though nothing could feel farther from the truth. This will be the hardest thing you do. You will get through the next 24 hours.  Minute by minute. You will be stronger on the other side. I found myself playing solitaire on my phone while holding her hand, listening to the rattling breath. Mind numbing solitaire kind of in a trance. It passed the hours. Make sure you get up and stretch and move and get food and water. Tell her what is in your heart. Think about what you will wish you would have said and say it. Or don't. Do whatever gets you by, whatever feels ok. There is no one right way to do this. But there is no way out except through it. Don't fight it. I have always had a hard time with death, dying, any form of mortality. I did not think I could get through it. But I did, and so will you.  

What meds do they have her on? My mother was able to get the medication (it wasn't morphine....some other opioid that slips my mind) in a liquid form that could be given through a dropper and sit in the mouth to be absorbed, it did not require swallowing. Give her all the meds they offer, ativan and whatever. Something to help with the rattling. It will make you both more comfortable. 

I'm sorry. I'm thinking of you. 

Ed1937

M&m, I hope you didn't take my post above in a way it was not intended. Maybe I shouldn't have posted that way -- or maybe I should have. I don't know. I just wanted to get your attention on something that was not in your best interest. I know your nerves are all over the place, and that's normal. I went through that in June of this year. Again, I'm sorry you or anyone else has to endure that kind of pain. It's about all you can do.

Quilting brings calm

LicketyGlitz is really needed here.  Her blog talked about her moms actively dying stage and she was just as honest as you Mommy.  You can’t be awake and attentive 24/7.  My aunt tried that with my uncle and fell asleep anyway and that’s when he passed.  My FIL died  in his sleep without my MIL realizing he was actively dying ( she didn’t even  tell her sons about the ER visit earlier that day until later), and my MIL died unexpectedly in bed watching game shows. 

You are doing your best while mentally, emotionally and physically drained.  You are still recovering from Covid yourself.  You didn’t give your mom covid on purpose.  It happened because that’s the reality of being a caregiver and being the only one available to care for her.  If it wasn’t that, it could have  been anything or nothing.  She could just be dying from the dementia even if she didn’t catch covid. 

Some people die so quickly that loved ones don’t even know they are ill.  Others take a couple weeks through the actively dying process,  That’s hard on people who are mentally, emotionally, and physically well.  They end up in the same  place you are- praying for peace and relief.   Just tell your mom everything you want to tell her, and do your best,  That is all you can do.  If she  passes while you are in the shower, or asleep, then that is what was meant to happen.

Edited because Lickety replied below and I realized I had gotten her name wrong. 

Ci2Ci

#ISeeYou ...wishing you both peace.

Ci2Ci

"Sometimes I'm the mess.
Sometimes I'm the broom.
On the hardest days,
I have to be both."

CanyonGal

Hospice should be able to help, 24/7. I would call the home office and request they send assistance because you need a break.

 When my stepfather was dying of cancer, I had to have my mother call hospice to come because she could NOT take care of him on her own. Hospice had a nurse sent out there and the nurse said he needed the 24 hour shifts. (He was with the VA hospice.)

Most hospice organizations have a facility where people can spend their last 2 weeks of life. The facility allows family some respite while they handle the medical side. I don't know if your hospice group has a facility, but you should have a nurse, social worker, chaplain, and home health aide. THE NURSE should step up to help.

We didn't get my stepfather into the facility in time, and so he passed at home. But it was really rough, and I was extremely grateful for the hospice nurses being there. It is extremely difficult to watch someone pass away that is in your family.

Just know you are doing everything that you are able to do, and more, and you will somehow make it through.

sunnydove

Oh M&M... my heart breaks reading this. I will be a mess when my mom passes as well. For all the times I have thought how unfair it is for her to have this hideous disease and I worry about the end extending on and on to where she is unable to enjoy any aspect of life - I will still be a basketcase. 

First though, you did not kill your mom with this. Covid finally got you. After several years. And like the protector you are, you shielded you mom from it but the bullet went through you and still hit her. And you have no idea about what would have happened otherwise. Maybe her dementia would have gotten so bad and her condition worsened to where she was miserable for months or years. Maybe another illness or cancer would have taken her in a more painful manner. You never can know what would have been. She is so lucky to have had all the time with you and to have you by her side. It sucks that you are sick as well and you could use a caregiver to dote on you until you get better, but you will never ever regret being there with her until the very end. 

I wish for you both healing, peace, relief and love. 

Jgirl57

My heart is breaking for you. Thank you for 

telling us how you are feeling.You need to write as often as

you need.  Now it is just 

one minute at a time during this very very very 

difficult time.

LicketyGlitz

Hoh boy, m&m, everything your feeling is same as my sister and I were feeling, and chickadee, and everyone else here who has gotten their loved one to the end. It was so much rougher than I thought it would be, especially as it sounds like your mom, like our mom, stalled out on the dying process. Our hospice called it a death plateau and said it was common in dementia people, the process just stops and takes it's darn* sweet time to start back up again.

We couldn't do anything for her to hurry it along, all we had was the morphine to help ease whatever she was physically and emotionally feeling. And that forever gasping, we had a full 2 days of that. The horror that we just had to wait, that there is nothing in our power to help her along, I thinks that's what your feeling too?

In hindsight, I honestly feel like for whatever reason Mom was not ready to go until she went, and I find that thought comforting.

And... we too had a little gallows humor to help us get through, like you, telling our mom to "wrap this up, Mom!" She didn't. She never did pay much attention to our myriad of entreaties throughout our lives, not sure why we thought this would be different, but it did make us smile  and even laugh to try and get some last bit of bossing her around in.

Unlike you, I had my sister, MotherMinder, lots of wine, and a bit more attentive hospice crew. Is there no one you can call to come over and sit with you? Any chance you're in the Portland, Oregon area? I would come over in a hot minute if you are. Can you get hospice on the phone just for some company? You should be able to insist on a visit tomorrow, but make 'em talk you down tonight on the phone if that's all they can offer.

If any of this helps, even as a distraction, here's the post about our journey at the end. Starting with Dementia Exiled Part 1, and all the posts above it: https://www.stumpedtowndementia.com/blog-1/tags/dying

Email me at [email protected] if you want a phone call, I will listen.

M1

M&m is it steroids you're taking for the bronchitis? Those will make you jittery as all getout. Maybe consider backing off? It just adds insult to injury and you don't need anything else rocking your boat right now. Please call your own doc, they may be able to help.

I'm so sorry.

ninalu

m&m, you've done everything right. I'm so sorry it's so hard. wish I could stop by and help, or just give a hug. {{{}}}

mommyandme (m&m)

Ok sooo… first I want to apologize for my language… please forgive me there. Second, oh my… thank you for being here… EVERYONE! Ed, no offense taken ever. I appreciate the realness of this crowd, even dayn2nite2’s harsh wisdoms in this place are fully appreciated by me!  Can’t get enough of the realness of what’s truly happening in all our lives. My “killed my mom with covid” statements have some form of  humor in them for me now although I have been quite pained. We really do want something to take them before dementia does, right? 

Mom is still with me.  Whats giving me peace right now is that she wasn’t going check out til I got my act together!  I’m no longer the “parent” in our scenario, which I’ve been for years. She just yanked that role back, I’m now just her daughter helping her through what she’s got to go through. But she’s in charge!! She’s the mature one right now. I gotta let her be my mom again and I’ll just do what mom wants me to do, as it should be. 

I think i got some kind of idea of how I wanted her last days, moments to be. I was looking for a Kumbaya experience (to be similar to my sisters passing which was in Boulder, CO [some may understand that reference]with her girlfriends spreading incense and fairy dust around after she passed).  

I was also quite confused by moms transition. I think I placed her farther along in the process and couldn’t understand why it was taking so long. Since she’s shown me my truths now, I’m no longer scared. She has actually moved to the place I thought she was already.  i’m helping her but I’m not trying to direct and do everything for her. We’re just hanging out. I’m on my phone, talking to you while I listen to her rattle and talking with her. listening to music. finally I have her comfort surrounding me again and she can leave peacefully knowing Mom knows best. I am so honored to be with this amazing woman as she moves on to her next journey. 

Thank you so much! 

Edited: I do have to say that I really dislike doing all this mental and emotional work on the fly… exhausting. 

Ed1937

M&m, thank you for being understanding. My heart hurts for you.

Joydean

M&M, I love when you said you are no longer the “parent “ and your mom’s in charge now! I believe in your first post when you said “Oh mommy “ , this is just my opinion but I believe she could tell how much pain you are in so she let you know she’s  doing this! Again it’s just my personal opinion. 

Hugs and prayers for you and your precious Mommy! 

Jgirl57

I also love that you are now the daughter again.

That is really beautiful. I am glad you are finding

a bit of peace as your mom “travels” on her time.    

Rest if you are able to.

LicketyGlitz

I am so happy to hear from you! As I would guess we all are. This made my heart soar...

"I’m now just her daughter helping her through what she’s got to go through. But she’s in charge!! She’s the mature one right now. I gotta let her be my mom again and I’ll just do what mom wants me to do, as it should be"

It is so hard to go through this, and everything you were feeling last night was spot on, but this too is spot on - you found your solution but you had to go through the nightmare first. You did better than me on this one!

Prolly more nightmares on the way, but I'm proud of you. One down, successfully navigated.

Peace and love to you and your mom.

Lickety

​fesk

m&m, you are both in my prayers. I am happy to see you are now in a better place emotionally. Please be kind to yourself.

AdultOrphan

If you were given prednisone for COVID stop taking it now. It sent me to the psych ward.

I am so sorry your mother is getting ready to pass. I was with my mother through everything until the end. Never second guess what you are doing to help her. She knows you are there.

Anonymousjpl123

Just adding a reply that my heart is right with you. This was beautiful of you to share and so generous. For those like me that are just beginning to live with this hell your post gives me something to aspire to. Meaning. I hope things are smoother for you and you are both able to get some comfort and rest.

abc123

Dear M&M, My heart goes out to you and your mother. Five months ago I was where you are now. There were times when I thought I would not make it, times when I felt I was failing my mother. It's so hard to explain. I told her I loved her so many times. M&M you are a strong and courageous woman. Your words of support and encouragement have helped me many times and I thank you. I wish I could make this time easier for both of you.