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Mom Back in Hospital - Not Good News

Apr 20, 2009 - 22 comments

Crazy week last week and likely worse this week.  We took Mom to the ER Saturday night as she was in extreme back and leg pain.  She couldn't even stand to go to the bathroom, feed herself or dress herself.  The day before she was positively diagnosed with blood in her stool.  

We had to pull a whole lot of strings to get her admitted as nobody believed she was sick enough for admission.  All hell broke loose when they got the intial blood work in.  Mom's hemoglobin was a 6.  Yes, a six.  That's not a typo.  She is bleeding out somewhere in her guts.  These people were ready to give her a pill and send her home to die.  Yeah, I had a few choice words for the nurse practitioner involved who was blocking the way to admission.

Gotta run to the hospital now.  Mom is having a colonoscopy and endoscopy at 8:30 and I doubt the news will be good.  She did the prep last night and reported it was nothing but old blood.  Now even Mom is scared and the gastro doc said it could be anything from ulcers - maybe even a small perforation due to a high white cell count now - to cancer.

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127124 tn?1326739035
by have 2 kids, Apr 20, 2009
I hope everything goes ok for your mom.

390388 tn?1279639813
by Me967, Apr 20, 2009
O my.  I had you strong on my mind yesterday.  Maybe this was why.  Who knows?  I'm sorry to hear the news; but, I'm glad you were there to "persist" in there being a problem.  You are a great daughter.  I hope the results are not bad and it's something that can be an easy fix.  At least that's what I will be praying for.  
I would imagine they will be giving her blood while she is in there to pick up her hemoglobin levels too.  Unfortunately hospitals want to kick you out very fast now, only to have you back in a day or two twice as bad, so that their profits are better.  Grrrr  

Hang in there sweety.  I feel so bad about everything your Mom and you are going threw.  I will be praying for healthy results for your Mom and strength for both of you.  I know the emotions must be wrecking havoc on your body too.  Take care and hang strong my friend.  I'll be checking in later.  HUGS

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by Red931, Apr 20, 2009
I am very sorry to hear that your mother is going through this. I hope there will be a quick diagnosis and a speedy recovery. I hope you get some rest as well. You must be very worn out at this point.

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by kiddthekatt, Apr 20, 2009
Please know that we are sending prayers your way. Hand in there kiddo.

gentle hugs

184674 tn?1360864093
by AHP84, Apr 20, 2009
I'm so sorry you're going through this, and your mom too. You're in my thoughts and prayers, and I hope things turn out to reveal good news and a quick, healthy recovery for your mom.

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by suzi-q, Apr 20, 2009
I am so so so very sorry to read this Jaybay...I will pray for her....please keep us posted.

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by April2, Apr 20, 2009
I'm sorry your mom has had such a rough time lately. I pray that she will get good news today and that at least they can find something that will help her to feel better.

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by HelpinUtah, Apr 20, 2009
I'm so sorry to read this.  It's so difficult when our parents are sick like this and so scary.  I will be praying for your mother and for you - and her doctors so they will know what is wrong and treat her to make her heal.  Lots of prayers and good energy headed your way.  Hugs, Janet

82861 tn?1333457511
by Jaybay, Apr 20, 2009
Mom was taken down for endoscopy and colonoscopy at 7:15 this morning.  I arrived just as she was coming out of the very minimal anesthesia they used on her.  I don't know why they didn't drop the hammer on her - maybe because of her age and the blood loss.  Go figure.

There is no sign of polyps or cancer in her colon, esophogus, stomach, or duodenum.  The stomach was pretty severely irritated, but no obvious bleeders were found.  While the doctor suspects that much of the blood loss was in the stomach due to the Advil abuse, he's now looking at the small intestines that are not reachable with the scope.

Around 9:15 they took Mom to radiology for a Small Bowel Follow Through test.  The patient drinks a bunch of barium and x-rays are taken periodically until it fully empties into the colon.  I tried to tell Mom it might take some time as mine took nearly 5 hours.  But no, she was convinced she'd be back in 30 minutes because that was how long Bill's SBFT took several years ago.  Time dragged on and Mom got more and more agitated.  When the barium stopped flowing at the cecum (where the small intestine hooks to the large intestine) she blew a gasket.  EVERYONE slows down at that point because there is a sphincter at that location and it takes a certain amount of pressure for it to open.  Tell it to Mom.  She went off on everyone in sight screaming that she was going to walk out of this hospital if they didn't take her back to her room immediately.  She hadn't had anything to eat and she had to eat immediately.  The techs jumped through hoops trying to knead her abdomen to speed things up, but that wasn't good enough.  It was finally done around 12:45.

The next fit was over having to wait a few minutes for someone to take her back to the room.  I could see the look on her face all the way down the hall and wanted to run for cover.  I got it myself for the next 15 minutes while she relived it all.  She demanded solid food RIGHT NOW and refused to even try any of the things on her liquid diet breakfast tray.  Frankly, I thought she was going to throw it me.  :-\

I told her the doctor had to give orders to the nurses for a diet change and tracked down the nurse.  I told her that if Mom had any orders for sedation, now would be a good time to get it going and relayed the story of Hurricane Verna down in radiology.  Five minutes later, here came the ativan.  LOL!

Mom thinks that she'll be discharged tomorrow.  I doubt it.  Her pain issues have yet to be addressed, and she's not in any pain right now because she's restricted to bed and not running around the house doing chores.  I told the doctor that she needs a pain specialist consult or we'll be right back in the ER in a few days.  I'm trying to reach one of the two pain docs affiliated with the hospital this afternoon.  If I have to call in my own consult, so be it.

The problem is that Mom had two units of blood transfused from Saturday night to Sunday morning.  On admission, her hemoglobin was a 6.  Normal is about 15, and the surgeon needs to see 12 and a hematocrit of 30 before operating on her back.  Yesterday, the hemoglobin was a 9.3.  This morning it was at 8.6 and hematocrit was 28.  She is STILL bleeding somewhere in her GI tract, and I can't imagine them discharging her until those numbers are stable and/o the source of bleeding is found and treated.  They're giving her two more units this afternoon and tonight.

Seriously, it's time for assisted living arrangements but Mom won't hear of it.  We're all running ourselves ragged on Mom's behalf and I honestly don't know how long we can keep her going in her home.  If she's in the hospital; she screams about wanting to go home.  If she's at home; she screams that she has to go to the hospital.  In the meantime, she's bleeding out and doesn't want to hear that she has to stay in until it's diagnosed and treated.

This afternoon Mom hung up on her sister and my brother because they dared suggest she shouldn't be living alone.  That prompted a round of hysterical and angry phone calls all the way around.  My husband called the family doctor at my urging and asked for a psych consult.  The dementia is completely out of control, and Mom's memory can't be trusted to where she can manage her own medications at home.  The doc says that the very low hemoglobin causes dementia and even hallucinations - makes sense with not enough oxygen getting through to her brain - and to hold off until this bleed gets sorted out.  In the meantime, she'll get sent home and I've got the bulk of the daily care of Mom, her house, her cat, and my house, my husband, my dogs, my birds, and maybe one day myself.

I've vented enough for one day.  Here's hoping for some kind of definitive diagnosis and treatment plan tomorrow...

675347 tn?1365464245
by ginger899, Apr 20, 2009
Oh boy, I sending prayers your way! May you be given extra strength and stamina to ride with this. It's hard, but my thoughts are with you. Blessings, Ginger.

547913 tn?1317359267
by jimi1822, Apr 20, 2009
I'm sooo sorry I will be sure to keep her in My evening Prayers. Please keep my cousin in Yours she is going in for surgury tomorrow.

                                                                                           Much love and Light....

                                                                                                            jimi (little wing)

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by Ghilly, Apr 21, 2009
Oh sweetie, I've got some SERIOUS prayers going up for you, your mom and your family!  I just can't imagine what it must be like to be going through this!  I wish there was something I could do to help.  I feel so bad just sitting here reading what you're enduring and not doing anything about it.  I know it sounds so cliche but hang in there.  

Love and big hugs to you,
     Elle  (Ghilly)

82861 tn?1333457511
by Jaybay, Apr 21, 2009
LOL!  I'm hanging all right.  From a noose.  ;-)  Heading back to the hospital shortly.  

Thanks to everyone for the kind words and prayers.  It truly does help.  :-)

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by Thekidsmom, Apr 22, 2009
You don't know me but....I read your extremely comforting words on from January, 2008 about when a dog has renal failure and what is and what is not reasonable about their treatment.  Thank you for those helpful words since I am in that situation now.  Please know that you and your family are in my thoughts since someone who has offered such kind words about a dog must surely be a wonderful daughter and friend.  Your "dog" friend Ruth Anne in Castle Rock, Colorado

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by Jaybay, Apr 22, 2009
Mom was discharged at 5:00 p.m. yesterday.  It was a mess finding someone who could immediately go pick her up, but my sister made the 30 mile drive and got it done.   The GI doc is certain that she is constantly leaking blood from the tiny vessels in her stomach lining.  Why?  Nearly 50 years of aspirin and advil use and abuse.  She stopped taking it a month ago, but the damage will take a good two months to heal.  Her stomach lining is so eroded that it's like one big ulcer.  

I'm very concerned that they labeled Mom's hemoglobin stable only on evidence of maintaining the levels for only 17 hours.  And that immediately after two more units of blood were transfused.  Of course she'll be stable for 17 hours!  She goes back to the blood doc on May 4, but I am not convinced she won't get dangerously low again in that time.

Mom's dementia has worsened considerably.  She has paranoid temper tantrums, her short-term memory is shot, and she doesn't fully understand what is going on.  Mom insists that me and my sister "take care of her" indefinitely, and we just can't keep this up.  I'm already 20+ pounds underweight, and lost another 5 pounds I can't afford in the past couple of weeks.  Since I can't work, and live close by, I'm the one elected to deal with most of Mom's daily needs.  She refuses to have anyone outside the family help with laundry or even the stupid cat pan that must be cleaned every day.

My paralegal brother checked with one of his lawyer cohorts about enforcement of the medical power of attorney.  We can do nothing until Mom's doctor declares her to be incompetent, and he thinks her dementia is only due to the anemia.  He has adopted a wait and see attitude.  Wait for what?  See if Mom wigs out or bleeds out first?  She's been going this way for almost 15 years.  Even with 4 units of blood pumped into her in 3 days she's gotten markedly worse.  Today she couldn't even remember where things were supposed to be in her house that hasn't changed a whit in 30 years.  When I walked in this morning I found her crouched on the floor in front of the open pantry rummaging through something on the floor.  When I asked her what in the world she was doing (she's not supposed to be bending at all) she mumbled something about needing more cat food.  There are at least 30 cans in there.  I just bought it yesterday!

There's more to write, but I'm done for the day.  Maybe I'll catch up on some badly needed sleep for a change.

I can't thank each and every one of you enough for going through this mess with me.  It really helps to know I'm not alone. :-)

675347 tn?1365464245
by ginger899, Apr 22, 2009
You are certainly not alone Jaybay. You got us, babe!!

I thought it was just in the UK that medical services were awkward when coming to terms with and facing the strain of an aged person with dementia. Obviously not. Stay-at-home carers (usually offspring) are saving the state billions! And no-one in the health service, or in government seems to want to reform this dire situation in realistic terms. Patients with cancer or heart problems get much more help. It is so unfair. It's as if dementia isn't regarded as an 'illness' ??!  In the UK there have been a few celebrities on TV in recent months, highlighting the problems they have with aged parents with dementia, in order to raise the profile. It seems Alzheimer's gets more attention, but you are left on your own when it comes to 'senile dementia' Hopefully there will be some good reforms soon, and care for these people will be automatic, much as care for cancer or heart disease patients is.

Thinking of you. Get some sleep.

390388 tn?1279639813
by Me967, Apr 22, 2009
Jaybay Hi.  You are so not alone by far.  I took care of my grandparents for close to 20 years that lived over 30 miles away from my home.  Toward the end, I went threw the same thing with my Gramma in which you were there for me last September.  I never forget my friends!

I also know that it drove me crazy trying to get "good" help for her, fighting everyone it seemed including her at times.  Of coarse I (was only the grandchild) that was always there for her none stop, while her children seemed more concerned about her passing in a business manor and what good care would cost.  Grrrr.  I was just plainly doing it out of my Love for her.

I also remember how worn out I was night after night (towards the end) staying up with her.  If I dozed off for a split second and she would make the slightest movement or sound I was up again right at her side where I slept with my head on her railing to the bed.  It took a major tool on my health!  I really do understand.

As for them having to claim dementia....I don't know.  My Gramma was totally with it mentally at 90.  She also did not want anyone but me or my mother to care for her though.  It was really hard at times mentally and physically both!  I remember being up for over 36 hours, came home and canned 21 quarts of tomatoes (to clear my mind and do everyday type stuff), drank a couple beers to de stress, slept for 12 hours and went back for another couple days.  The nurses where actually checking my BP and oxygen levels too along with hers.

If you can, you really need to get one of your siblings in there to either help out every other night, or talk Mom into going into a assisted living type home (even if just temporary) that has the ability to upgrade into long term care.  (Just don't tell her about the long term care part).    

Sorry I just realized I was writing a book and opening up on things I probably shouldn't even say over the internet.  LOL

PLEASE take care of yourself as much as possible.  Remember the caregivers rule.  I hope you get some rest tonight.
Sending ((((HUGS)))) your way and will be praying for you, your mom and your family.  ;~)

~just me......Amy.

793908 tn?1294708709
by Sandra_G, Apr 23, 2009
Hi Jaybay... After reading what you are going through, my heart goes out to you.  I feel like I am reading my own life with my Mom.  I know how stressed you feel...I was there with my Mom until she passed last October. Now, I miss her like crazy.
I was told that they take thier frustrations out on us...thier loved ones. It's awful, I was mad at her for taking it out on me, frustrated, hurt, going crazy, exhausted & couldn't believe that this was my Mom.  She halucinated, took the wrong meds, called me & said "the nurse" was committing her to a nursing home & I told her it's okay...huh???  She forgot alot & stayed demanding & arrogant to me & my sister. Never to the doctors or my brother. Did she pick n choose??
Mom lived 1/12 hrs from me yet I had to do it all for her. She lived alone. My son moved in with her for 4 months. That too was rough but better than nothing. She lived 21/2 hrs from my sister & I was the chosen one to do it all. Dear God, I don't know how I got thru it but I did & you will too. Now, I think if I only knew how sick she really was, maybe I would have had more patience with her. Than again, she never made it easy..she wouldn't tell us the truth. She tried to act as if she were okay until she no longer could.  She was misdiagnosed by the Gastro team with colitis & ulcers etc.  In the end, it turned out that the arteries from her stomach to the bowel/colin closed up totally=death to the bowel. She was on all the wrong meds & was told that she has so called turned out to be from the meds & such severe pain, not dementia.  She had every test that your Mom did & in & out of hospital 6 times...yelling about the food & nurses & going home, yet still sick as hell. The doctors all tried to cover for one other but couldn't in the end.  I truly feel so bad for you & I hope my story makes you feel not so alone.
Was your Mom always like this or is it since she got sick? Parents turn to children in thier older age & in reality they are so scared, but won't admit that to us, so we have to take what they dish out, because they can't deal with thier impending death either. Can any of us? It's so hard on you & I hope you can hang in there. Can you get someone to come to your Moms & clean up for her? Take care & you are in my thoughts & prayers.

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by Jaybay, Apr 23, 2009
Wow Sandra.  We appear to have the same mother.  :-(

Yes, Mom has always had a pretty big dose of paranoia.  Not so much in our childhood years, but around 1980 it was more and more noticeable.  One little harsh word from someone and they were on her Grudge List forever.  She has had no friends outside of family since she quit working in 1995, and became more and more of a shut-in by her own choice.  It's been nearly impossible to pry her out of the Sacred Hovel for so many years I can barely remember a time she wasn't like this.  

Around that 1995-96 time was the first time I became alarmed about Mom's rationality.  I telephoned her and it was obvious she had no idea who I was.  She tried to go along with the conversation, but it was more than clear she wasn't home mentally.  She's had such spells intermittently over the years, but it's coming hard and heavy now.

I really try to remind myself that Mom isn't really home these days and bite my tongue.  I understand she isn't rational and she's scared to death.  However... that doesn't mean I enjoy her verbal tongue lashings.  Letting her run down without engaging in her arguments is the fastest way to stop them.  My siblings haven't quite reached that point and still attempt to communicate with her as they would a normal person.  It can't be done.  Even if Mom is reasonable one minute, it can change in the blink of an eye.  Then she'll forget what was said in an hour or a day making it very difficult to communicate with her at all.  Since she's forgetting conversations with us and her doctors, she gets angry when we bring up such conversations and screams that we're making things up and lying to her.  

Amy, I don't know how you coped with your grandmother.  I have never been geared toward caretaking.  Obviously I'm not a natural at this sort of thing.  My sister is great at it, but she lives 30 miles away and has a job and children.  She's sacrificing a great deal to contribute to Mom's care as much as she can.  On top of that, my sister has bad back issues of her own.  If Mom takes a fall, there is no way sis can help her.  My brother has 3 young boys under age 6, one of whom has terrible epilepsy and is in and out of the hospital.  None of us is equipped to take over Mom's total care without some kind of outside assistance.

Ah well.  Today is a new day.  I'm heading to Mom's shortly to do cat pan duty and praying that she is mentally better than yesterday.

793908 tn?1294708709
by Sandra_G, Apr 24, 2009
Hi Jaybay...You said...."I understand she isn't rational and she's scared to death.  However... that doesn't mean I enjoy her verbal tongue lashings."  Oh how I understand your feelings.  I was always so upset at Mom for the way she acted to me & my sister too. I walked out on her one afternoon & went home....65 miles away... I had enough of her. Mom got so upset that I was so mad..she apologized up & down to me & made my sister talk to me to come back. Than of course, I went back.  
It's so hard on you Jaybay & never ending.  I pray that you survive this. Try to stay strong & know that this is not forever.

All of us treated Mom as if this disease would end soon. We never knew what she really had until the last 5 days of Moms life.
I watched her weight melt away..from 120 lbs to 95 lbs. Than I knew she was really bad yet there were no honest answers from the doctors.
She practically stopped eating. Only my homemade chicken soup & the last 2 weeks she wouldn't eat meats at all. She said it repulsed her & she didn't know why. (she loved meat before) This was one of the signs of dying..of the body shutting down. I never knew this.  The last 2 weeks of her life, I asked her what the awful pain in her stomach felt like. She said it felt like she was just operated on & the wound was open. Huh??? I was so upset & confused but I knew something was so wrong. I went up to her home to take her to the doctor & she was deathly sick. (my friend came with me ..thank god)  We couldn't get her to sit on the walker to push her to the car. I begged her to go to the doctor & she wanted to go but couldn't, than out of nowhere she had a terrable seizure, (I thought it was a stroke)  I almost died myself. My son & my girlfriend calmed me down or tried to, while trying to help Mom too. After she "came out of it" she says..."why are you calling Mom Mom Mom",
like it bothered her that I kept calling her. Even then, she was arrogant to me. She was scared to death.
I called 911 & that was the beginning of the end.  The EMT workers asked who's the or my Mom. I had to calm down & did, eventually.

I knew one day my Mom would die, & I dreaded losing her, but not like this & not so quickly. I never thought I'd be her keeper, her caregiver. It's extremely hard & stressful & something you never forget, yet I learned alot from it.  I learned about lousy doctors, hospitals, & HMO's, & my never getting off the phone, fighting for her rights with the HMO & why didn't the doctors all get it together & inform one another on her condition..& her reports. I had to call each one to do this.
I learned about the wonderful NURSES who all had the patience of a saint, with her moods & with me calling them so much.
On her last days I realized that it was the NURSES who pulled me through this nightmare & sat me down to explain everything & they stayed with me alot...until my family got there.  Never a doctor. Never.
God bless the wonderful NURSES in this world!! They deserve so much more than they get.
Lastly, I learned so much about death & dying. I also learned about empathy & about living.

Jaybay, you seem to see the overall picture of your Mom's actions & health & thats a good thing.
You need a big Huggggggg & I hope you get one at home.  Did you feel it...I hope so.

82861 tn?1333457511
by Jaybay, Apr 25, 2009
Sandra, you nailed it again.  I learned about the lack of communication amongst all the doctors when my dad died of gallbladder cancer in 1994.  The docs wrote him off and he endured terrible pain for the last 5 months of his life.  Why?  He assumed the docs would order pain meds if THEY thought he needed it.  He never opened his mouth to ask!  I threw a fit and demanded that the oncologist see him and discuss his pain.  She merely consulted the nursing notes and told me, "He's not asking for anything so he won't get anything."

As you point out, it's the nurses who do the heavy lifting in these situations.  I had a discussion with his nurse and she said one of them had to hear the complaint from him.  We worked out an arrangement for me to explain to Dad that he had to tell them about it, and as soon as he was ready to talk, the nurse would come in immediately.  She did.  She dropped everything she was doing and came in.  Dad, true to form, mumbled that "Well, yes it hurts, but it's not that bad."  Mr. Macho again.  Just like Mom he was his own worst enemy.  By then we couldn't even sit on the bed with him without a gasp of pain.  Guess what the beotch oncologist ordered for him?  Talwin.  That is precisely NOTHING in the face of cancer pain.  Despite our numerous complaints, he didn't get morphine until HE told the doctors to stop TPN and let him go.  That was the last two days of his life, and his final whispered words were, "More morphine..."  

I will be damned if any member of my family will ever endure something like that again.  The pain management speciality was in it's infancy back then, so we had to browbeat all the various docs.   In the end, it was the family doctor who came through.  He was the only one who made sure we knew that the end was near, and the nurses... I can't thank them enough.  They were the ones who kept Dad clean and comfortable and their assessments of when he would go were absolutely correct.

There is a reason that hospitals have Patient Advocate departments.  If the patient has no family or nobody to help coordinate what the individual specialists are doing or planning, that's when you call on the Patient Advocate.  Too many times people are unaware of that function and just how helpful a PA can be.  My brother used one when his son was having continuous seizures for day after day and all the docs could do was scratch their azzes.  The PA called a meeting with every one of the docs and my brother was able to get all his questions out on the table and got everyone on the same page with a treatment plan.  The PA doesn't just listen to and file complaints, so for anyone reading here, try to remember this information should you find yourself in a similar situation.

Mom is doing better in the past couple of days.  Her color is better than I've seen it in years, and at least she's behaving herself and not overdoing it.  She is slowly coming back to her old self mentally, but the paranoia is simmering just below the surface.  I had to laugh yesterday when I told my husband I feel like the Mom Whisperer.  Gotta laugh about something!  :-)

793908 tn?1294708709
by Sandra_G, Apr 27, 2009
Hi...I haven't been on in a few days.  I am glad that your Mom is doing better. I hope she still is as of now. I makes it easier for least for now.  BTW...I am cracking up over you being the "Mom Whisperer"  thats a great one!  lmao

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