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PK1111 Asked December 2019

My Mom is doing nothing but screaming constantly!!

Mom is in a LTC 3 weeks ago she came down with a UTI and after 5 days on the antibiotic they took her to the hospital. After a 5 day stay they released her back to the hospital and she was fine for 4 days then she started screaming Mama Mama Mama and just loud screams at the top of her lungs. They found that her urine culture was showing another strong bacteria and they put her on Zyvox which is a heavy duty antibiotic for 5 days. This is day 4 and we see no improvement in her demeanor. All she is doing now is screaming bloody murder, won't eat, won't drink so they put her on an IV drip to keep her hydrated. She keeps complaning of pain down in her groin area so they gave her a med for bladder spasms and one to control the burning, also she is on a catheter. Instead of getting better she seems worse with the screaming and calling out. I know she can't help it but it's the worst trying to sit there and listen to this constant yelling out...has anyone else dealt with a UTI so bad all their loved one did was scream out? What did you do??

Isthisrealyreal Jan 2020
Oh PK, I am so sorry for your loss.

May God grant you grieving mercies and strength during this difficult time.

It is a blessing that her suffering is over, she will always be alive in your heart.
PK1111 Jan 2020
Thanks so much! Yes she will always live on through my love and memories of her!
PK1111 Jan 2020
Sadly, Mom passed on Thursday evening (Jan 2). I am so sad and emotional as I was very close to her but at the same time I am relieved that her pain and suffering is over and also relieved to go back to my life. It is just so sad that my life will not include living on this earth without her! Thank you everyone for your answers and support!
lilhelp Jan 2020
PK1111, I'm so sorry for your loss.  I've been praying and so worried about you and your Mom.  I, too, am relieved her pain and suffering is over.  May you find peace knowing that you were able to be with and help her, and keep a lifetime of precious memories close in your heart.

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MsMadge Dec 2019
Pk
so sorry for the difficult journey for your mom and you - be at peace with your decisions and no regrets
as your mom quiets down with the pain meds, you will be able to sit quietly with her, talk to her and hold her hand, pray (if inclined) and play music

MAYDAY Dec 2019
MAKE SURE THE ATIVAN IS ON BOARD... !!! IT HELPS THE BRAIN...\\

ATIVAN IS SO IMPORTANT...WITH THE MORPHINE.

Your mom has IV drip... my hospice doesn't believe in IV DRIP, so I was shown by a hospice nurse, the one on the weekends apparently... how to smash morphine pills into a powder and spread it in my mom's cheeks, every hour....She did not even mention ATIVAN. So, mom was suffering a few hours with morphine powder etc. When I got another hospice nurse on phone, he said he would be over ASAP to help me. He got her comfortable, and asked for the ativan which was in the ER packet in refrigerator... so he got her comfortable the rest of the time...

PK1111 Dec 2019
We met with Palliative and Hospice today and all involved agreed that Hospice was the way to go since Mom has stopped eating and drinking and has a very hard time swallowing. I signed the papers today and she is on a continuous morphine drip now until her time comes. Today was a very bad day for her as well she was screaming at the top of her lungs in pain and we just can't figure out where the pain actually is. The Dr has given her all kinds of tests too. It's in God's hands now and even though I am crying, upset and already missing my Mom I know in my heart this is the right thing to do. She has lived a wonderful 89 year life and I know she would want to die with dignity and be comfortable. They say it only takes 3 or 4 days when someone stops drinking so we shall see how long before God takes my Mom but I truly believe and almost everyone at the hospital including my Mom's Dr has assured me I am doing the right thing. Not making it any easier because I love her with all my heart. Thank you all for your input and stories of your experiences they have really helped me!
MammaDrama Dec 2019
It sounds like you made the loving choice for her.
It was 4 days for my dad to pass after they stopped IV fluids. Talk to her and play some soothing music. God bless.
PK1111 Dec 2019
Thank you all for your input. Because it was a holiday weekend no one from Palliative care is available to meet with us until Monday (12/30). I have told them all NO feeding tube and the Dr. was in the room when my Mom was a bit more lucid and we asked her twice and both times she said NO to the feeding tube as well. The Dr. said that was enough for him. I am her Medical POA and I have been advocating for her through all of this. They told me today that they stopped the meds on the UTI as they feel based on her blood work that the UTI is gone but she still is doing the Mama Mama thing and screams out in pain from time to time but when you ask her specific questions she answers but is still very out of it. Today she took her meds and drank almost a whole Ensure which is probably the best shes' done in the last 10 days. I have no idea what direction we are going in but on Monday when we talk to Palliative care I hope we get some guidance on our next move. Mom's vitals are excellent as well, her blood pressure, heart rate and oxygen rates are all within normal so it looks to me like the dementia from the UTI is just not going away...I am so sad for my Mom but I also know this is not the quality life she would want. I am trying to come to terms with whatever comes next at this point but I still sometimes can't believe that this all started at the end of September when she broke her hip that it has spiraled down to this.
lilhelp Dec 2019
I'm sorry for what you're both going through.  Praying for you both.  Please let us know what they say.
gladimhere Dec 2019
PK, think very seriously about tube feeding. Had my mom tried that at any point, she would have taken it out.

I support your decision of meeting with palliative care 100%!
PuffandMochi Dec 2019
Gladimhere I agree with you 100 percent. My mother would have done the same. We opted for in home hospice and no feeding tube.
ML4444 Dec 2019
So I am wondering how you think you CAN help your mother? When you say you feel she would not want a feeding tube, what would SHE say? Do you have an advanced directive for her? If she doesn’t eat, she will starve to death eventually...this has to be worse than a feeding tube. Is this what you want to see? Palliative care is mostly for end of life pain.. so I surmise the Dr. is telling you either a tube or this is the end...that is what “another option” means. Because what is your plan if no tube?
I don’t mean to sound harsh, but I”ve been thru the wringer with both parents in the last 2 years, and I’ve has to become hardened to having to make difficult decisions, but in the best interest of my parents. These have been the most difficult 2 years of my life, and I am sorry for you... best wishes..
PuffandMochi Dec 2019
So what did you ultimately decide to do with your parents? Feeding tube or not? Can a psychotic dementia patient keep a tube inside? My understanding is that they are so agitated and confused that they take all tubes out being susceptible to infections.
PuffandMochi Dec 2019
I forgot to ask you if your mom is urinary and bowel incontinent. Also, how is her mobility ? That will tell you
if she is at the end of late stage dementia.
PK1111 Dec 2019
Mom is incontinent and has absolutely NO mobility since she broke her hip. At first the pain was too much for her then she developed other ailments that held her back in therapy so she is totally unable to walk or care for herself sadly.
shad250 Dec 2019
Sometimes, sadly, screaming could mean death is near.

PuffandMochi Dec 2019
My mother passed away about 15 days ago. She has struggled with LBD for about 8 years and my sister and I cared for her till the end. She had reached what seemed to be a plateau in the progression of her illness but then all of a sudden her agitation, incontinence, aggression, paranoia all became amplified. She ended up in the hospital with a UTI like your mom and like her she spent her 15 days there screaming her head off extremely agitated and upset. I caught that she was not even recognizing my sister or me. I know first hand the stress you are going through..... in the midst of our confusion and stress while she was at the hospital we requested a Hospice assessment and that was the best thing we did. It turns out that she met criteria and we took her home under their care ( in home hospice). It could be that your mom’s condition may have progressed to the point of qualifying for Hospice. Hospice has many alternatives to ease her anxiety while her body starts shutting down. The fact that she is calling her mama if her mom has passed away is very telling. My mom spoke to all her dead relatives during the time she was approaching her death. Looking back ... she was ready to go. She passed away painlessly and peacefully at home. My heart goes out to you and I will keep you in my prayers.
PK1111 Dec 2019
Thank you for your input...today the Dr. told me that my Mom either needs a feeding tube or to go towards another option...in other words progress with the tube because she's not eating or just make her comfortable. We are meeting with Pallative Care tomorrow and then will make our decision but I truly do not want to put her on a feeding tube as I feel she would not want it. She is still screaming Mama and moaning loudly even though her tests are showing that she is getting better with the UTI...hardest thing I've ever faced in my entire life! :(
myhouse385 Dec 2019
https://www.alzheimers.net/2014-04-03/connection-between-utis-and-dementia/

GardenArtist Dec 2019
What I would do  is immediately (a)  ask to meet with the attending, or a urologist or other specialist treating her, or (b) the charge nurse if neither doctor is available, and (c) ask either or all of them for more detail, a plan of care, what lab results are showing, if there's another appropriate med, and what other treatment can be considered.

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