RSS Feed Print
Denial and Anger
AmyJo5
Posted: Friday, January 18, 2019 8:46 PM
Joined: 7/28/2017
Posts: 176


My mother passed end of November, fairly quickly, after hospitalization for an ulcerated esophagus and hiatal hernia (10+ days in hospital, where we almost lost her). She rallied, went into temporary rehab and was soon in full blown delirium psychosis. The rehab was neglectful, we got her to memory care where she was aggressive and terrified. One dose of Seroquel and she just went to sleep. Could be roused for meals but didn't eat. Just went to sleep and in a few days died. While we are glad her suffering wasn't long (the delirium/psychosis was horrible), I'm still struggling. If she hadn't gone to rehab, could she have bounced backed? So I'm in a terrible denial: that her underlying dementia was brought out by a series of unfortunate events and a lack of personalized care in rehab; that she could have had more good years in Assisted Living. Even as I write it, I don't believe it. But still. And I'm angry I haven't felt her: I felt my Dad when he passed. Why haven't I felt my Mom? We were so close all our lives. I called her everyday. Thank you for any insights.
Wgonzo
Posted: Saturday, January 19, 2019 6:35 AM
Joined: 1/8/2016
Posts: 365


AmyJo,

My heart goes out to you. I think we can all identify with unanswered questions with our LO. And, sadly I don't think we will get the answers we're looking for. We can make ourselves crazy trying to figure out what things could have been done differently. And, we doubt ourselves, but we did what we thought was right with good intentions which is better then doing nothing at all. This disease and what it puts them through as well as us leaves you in limbo without total closure.

Yea, you tell yourself their in a better place and no longer suffering. But, we're still suffering...

I too yearn to feel my mom or talk to her in a dream. I'm sure she's around and I'm sure there have been signs but I haven't felt her the way I did my dad.  I don't know why, but I feel if I had just a minute it would help me have better closure.

We're in it together. Healing one day at a time....

Wendy


Rockym
Posted: Saturday, January 19, 2019 9:51 AM
Joined: 1/17/2016
Posts: 934


AmyJo, I have spent a lot of my life with the what ifs.  I know this is how our brains try to make sense and sort through things, but at some point you will have to shift to the silver lining stage.  My mom also went fast.  What started as a small fever ended up with 3 nights in the hospital, then a dx of possible cancer and internal bleeding and then back home in Hospice for 6 days.  Each day she went downhill and then passed.

Mom was stage 5 and also physically disabled from a previous stroke, so I thank the heavens she passed quickly.  She was also 86 so there's that.  As for your mom bouncing back... they don't.  They can improve a bit over time, but after a hospitalization the disease just goes wack.  Also, after a psychosis, there isn't the best chance for "good years" in AL.  Maybe stabilization in MC, so as much as I know you miss your mom terribly, perhaps this was better for her.

Lastly, I also lost my dad a number of years back and my brother.  There is something about both parents being gone that can cause even more grief.  My suggestion is to listen to music you both liked.  Listen to songs that remind you of her.  Go to places you both visited.  Maybe if she knows you are trying to find her "out there" she will show up.  Okay, I just gave myself chills.  When my brother passed I felt him for a short time.  When dad passed, it was a little here and there, but he took me on a strange journey went I went back to my childhood home a few months ago.  When mom passed, it was non-stop for a while.  Heck, I made a thread on here because it was almost scary.  When you start to let the anger go and have some acceptance, your mom may pop in.  My fingers are crossed for you.


dolor
Posted: Saturday, January 19, 2019 6:19 PM
Joined: 11/9/2017
Posts: 305


I'm not able to post much right now but I sympathize. I'm so, so sorry for what you and your mom went through. 
My mom had a very similar situation. 
This is why I speak out about anti-psychotics for dementia patients all the time. But I didn't know enough when I needed to know enough. 

Many doctors suck. You are right to be angry. Just don't blame yourself--you aren't a geriatrician. You'll still feel guilty.

I'm still angry, and guilt will hang always like an albatross around my neck. 


AmyJo5
Posted: Monday, January 21, 2019 10:02 AM
Joined: 7/28/2017
Posts: 176


Thank you, Wendy. I do feel we are in it together, and I'm grateful for your perspective on the unanswered questions which come with this horrible disease. I'm so sorry for you for what you too are going through: I send a hug and gratitude.
AmyJo5
Posted: Monday, January 21, 2019 10:11 AM
Joined: 7/28/2017
Posts: 176


Thank you, RockyM (my husband's name is Rocky: is that a good sign?). I saw the thread you referenced about loved ones hanging around and I read through the posts and I may have even posted there: probably something about envy and longing to feel my mom. You provide important reality checks which I know rationally (even if I don't yet feel them): the silver lining that she didn't suffer long, the likely fact she wouldn't have bounced back. I am grateful, and grateful for the compassion and understanding on this discussion board. People outside of Alzheimer's Disease and its horrible kinfolk cannot understand the particular horror of dementia in the same way people here can, so I thank you thank you for your presence during a tough time. Wishing you continued visits and peace, and saying thank you again.
AmyJo5
Posted: Monday, January 21, 2019 10:16 AM
Joined: 7/28/2017
Posts: 176


I sense the pain in your words, Dolor. The issues with doctors and rehab and meds overwhelmed us and we didn't know. Why do you think you are different and SHOULD feel guilt? I understand you may be going through a lot right now: I hope you are as compassionate with yourself as you are with others.
jfkoc
Posted: Monday, January 21, 2019 1:30 PM
Joined: 12/4/2011
Posts: 19625


Hard stuff to get your head wrapped around. What happened...why?

Your mother was very ill. There was no way to avoid a hospital stay or rehab or MC and the seroquel was likely a blessing for her.

The choices are not always our first ones but they are the right ones as difficult as they are to make.

You may or may not feel your mother's presence. Who knows how that happens...it has not happened here.


MissHer
Posted: Monday, January 21, 2019 11:30 PM
Joined: 11/13/2014
Posts: 2365


I am so sorry for the sudden loss of your mom. I lost mine suddenly, also. I too have questions  and doubt I will ever know the answer. It still hurts to really talk about my mom and her struggles with the monster disease without crying.. So so sorry.
Skittles412
Posted: Tuesday, January 22, 2019 7:33 AM
Joined: 5/14/2018
Posts: 259


Hello AmyJo.

Please accept my heartfelt sympathy for the loss of your mom. I lost my mom in June and it just sucks. Your situation sounds a little similar to mine. My mother died 9 days after hospice came to her house to take care of her.  It seemed like we put her in a hospital bed and then she began to die. I wonder (as do my father and siblings) if that all accelerated her dying process.  What if we didn’t call hospice?  What if we kept pushing her to do more?? What if, what if what if…. The What ifs will kill you if you let them.  I am trying to come to terms with the fact that mom was going to die anyway; regardless of what we/hospice did. She went very quickly and I wasn’t ready for it (even though in my heart of hearts I knew it was coming).   

Bottom line is; it wasn’t going to get better, this disease only gets worse and there was nothing we could do to change that…..maybe we could have delayed the inevitable somehow but not much more than that. I (and you) have to let go of the what ifs and start dealing with what is.  It’s time to heal and pick up the pieces.  Come back often, we all need to let it out every now and again.  Thank you for giving me an opportunity to realize that I still have a lot to deal with in my healing process.

Sending you lots of strength and support.

Xoxoxoxo -Kat

 


AmyJo5
Posted: Tuesday, January 22, 2019 4:25 PM
Joined: 7/28/2017
Posts: 176


Thank you, jfkoc. Your strong voice and presence was and is a comfort, even if we do not have answers or visits: even if there are things we can't wrap our heads around. I can't describe the comfort this group gives me. Thank you again.
AmyJo5
Posted: Tuesday, January 22, 2019 4:29 PM
Joined: 7/28/2017
Posts: 176


I'm sorry for you too, MissHer. I can feel your hurt in your brief words. I hope you take some comfort from this forum. I do. I'm so sorry again for your loss.
Rockym
Posted: Wednesday, January 23, 2019 9:27 AM
Joined: 1/17/2016
Posts: 934


So after posting the other day, I ended up having a couple of what ifs pop back in my head.  I can say they are hard to erase and I actually have a picture to go with mine.  Hospice wanted to give my mom morphine.  Mom was not in pain.  Hospice said she really needed something.  I compromised and discussed it with my mom (day 2) and we gave her some Percocet.  Well, then they decided we should take away her Tylenol and she started to go down faster.  Next the doctor pushed for a steroid.  The doctor told me that if her bones were hurting the steroid would help.

I again compromised and was a tad selfish thinking it could give her that last boast/buzz to make her feel up.  They gave it to her in the morning and when I saw her a few hours later her eyes were wide open and she was looking at the light in her room and the light in the bathroom.  I could tell she was high, but there was nothing I could do.  The fact she was so alert (in her own head) was freaking me out.  I knew it would wear off, but I felt so bad for allowing it.  I didn't know it would effect her in that way.

I can still see her face and her eyes as blue as the sky.  She was looking every where and I couldn't even tell if she knew I was there.  The day before, she was mellow and dying, but this day was just plain crappy.  So, the what ifs... it was a crap shoot I am now trying to convince myself I had a chance to see her eyes before she passed and there could have been a little rally.  Oh well, she was going to pass soon anyway so the silver lining was that I had 3 nice days in the hospital with her, 6 not too bad days with hospice and then my beautiful mom was gone.

I write this with tears, because just when you think you are pulling it back together (8 months for me) something is going to bring you back.  Okay, I am off to have a little cry, listen to some music and maybe mom or dad will come around.

 


Skittles412
Posted: Wednesday, January 23, 2019 10:41 AM
Joined: 5/14/2018
Posts: 259


Rocky I'm right there with you.  7 months for me and many of the same what ifs you have.  I try so hard not to think about them though for my own sanity.  You're right, there was nothing you could do to make her well, and anything we did to keep them alive would only be prolonging their suffering and the inevitable. Sending you big hugs and strength.

xoxoxoxo -Kat


MissCory
Posted: Friday, February 1, 2019 6:31 AM
Joined: 6/14/2017
Posts: 144


My condolences, AmyJo.  I lost my mom Dec 27, and have some of the same "what-if's" in my heart, even while my head tells me that I did the best I possibly could.  I, too, could feel my dad when he passed in '96, but can't feel my mom. So I've made up a story that after years of schizophrenia, then ALZ and Parkinson's, she's now so busy souring through the clouds she loved and having a spirit free of confusion, delusions, and pain, that she doesn't see a need to "visit" me yet. 

One thing I know:  Since I did the best I could, even though others might have done better or differently, I don't have the guilt of family members who did nothing at all. I wouldn't trade places with them for the world. 


Skittles412
Posted: Friday, February 1, 2019 7:09 AM
Joined: 5/14/2018
Posts: 259


MissCory I am so very sorry for your loss. I'm hoping you find peace and solace in the fact that you did the best you could and your mother had you there with her till the end.  It's a tough job; probably the toughest one there is. I hope you are taking care of yourself now that your care giving duties are complete. It's time to focus on you. Your mother is resting in sweet peace now and soaring with the angels now (as you said). Please take good care of you.

xoxoxox -Kat


AmyJo5
Posted: Tuesday, February 5, 2019 8:09 PM
Joined: 7/28/2017
Posts: 176


Crying with you, RockyM. I'm sorry I brought up the What ifs. I'm glad you feel your loved ones close. I don't yet, so if your mom visits, can you tell her to tell my mom, ok, enough fun in Heaven, give me just a little sign, please? I need to feel her. I miss her so.
AmyJo5
Posted: Tuesday, February 5, 2019 8:15 PM
Joined: 7/28/2017
Posts: 176


Thank you, Miss Cory. I too hope my mom is busy in Heaven catching up with everyone.

One strange thing: I had always thought my mom and I were 1000% good in our relationship: that we had said everything we'd ever need to say, that we knew how much we loved each other and were close. Lately I've been worried though, almost interpreting her silence as if she is angry at me. If I had stayed longer with her at the Rehab, or got her out sooner, and been more vigilant about which doctors were describing what, would it have made a difference? So I guess I'm caught in a vicious circle, and I'm not sure how that circle will be broken. One of the stages of grief? A visit from her would be reassuring. Sending love to all in pain.