Nursing home just called me about a feeding tube? - AgingCare.com

Nursing home just called me about a feeding tube?

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I originally posted my issue a while earlier. Here's a link to that: https://www.agingcare.com/questions/mom-needs-relocated-to-another-state-162029.htm?cpage=5

I informed the nursing home on Oct 30th that I wanted to be removed from ALL responsibilities regarding my mother. They started the process of removing me financially from any/all liability almost immediately.

Today, I received a phone call at 3:09pm from one of the nurses telling me that my mom is refusing to eat. I called back at 3:19pm, and was told that the nurse I needed to speak with was in a meeting and to call back in half an hour.

I called back 45 minutes later, and was told that *someone* at the nursing home let it slip that I was moving and now my mother is depressed and refusing to eat. I'm unsure what they want me to do about that, as I'm not a doctor.

When I asked what could be done, the nurse tried to guilt me into taking care of my mother and how dare I be moving. I officially went off on her. I informed not so nicely that I worked 3 jobs (prior to getting pregnant) just to afford her dental appointments that are NOT covered by medicaid, and that while I may be her child - I have gone above and beyond MY call of duty.

The nurse's response was: well you're her kid. Well, what would you do if she had no relatives at all? It is not MY call to make if she needs a feeding tube or not. I had to threaten her with APS (Adult Protective Services), and I wasn't very nice about it. I said that this is the reason she is in a damn nursing home to begin with, and it's about time they started doing their job.

Harsh? Yes. But, I'm actually REALLY angry that I am once again being told to "step up" by someone and being lectured/guilted into taking care of her.

Was this the appropriate response? I have been begging the nursing home for over two years to just do their job. What if they call back and want me to make a decision again? Should I just ignore their calls?

PS. I was diagnosed with SPD (Symphysis Pubis Dysfunction), and my doctor said under ZERO circumstances should I be walking or stressing. We already had one scare where the baby almost fell out (Halloween Day) uterus and all. My ligaments/pubic bones have shifted so badly that the baby can actually do that now. I can't even sit on a couch or drive a car anymore.

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Fool me once shame on you, fool me twice shame on me.
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Alysrian~I am sorry about your difficult pregnancy. I can relate to that right now as my daughter is pregnant with twins and she is now 30 weeks. She has been diagnosed with preeclampsia and was hospitalized for 4 days. As soon as her blood pressure was up and there was protein in the urine they ran a test for gestational diabetes and a liver function test. When that came back negative...they put her in the hospital. After 2 days, the protein had risen and so did the uric acid...but on the 3rd and 4th day, it stayed stable so a specialist said she could go home but has to see her ob 2 x's a week for bp checks and once a week for blood work and an ultrasound. She is now 30 weeks and has been home one week and everything is staying stable. She can no longer work until after the boys are born. It is a week by week situation as to whether they will deliver her early depending on her blood work and the ultra sound regarding how the placentas are functioning. I am so sorry you had to miss so much time. Yes your ob should have followed through at your regular ob appt. when bp was up and protein in the urine. This is why they do a urine test at every appt.
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Also, one of the main reasons my mother wasn't really "speaking" was because she had pneumonia for well over a month before being admitted. She was never diagnosed either. She was originally diagnosed with bronchitis, but I was told she was getting better. That is obviously not the case. By the time I was finally allowed to see her, she couldn't speak and had to lift her hand up for yes/no questions. She speaks just fine now, and her attitude isn't so nasty anymore. She stopped throwing things at people. :)
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Grr... I forgot to mention that a lot of the issues I was having DURING my pregnancy, was related to not being diagnosed with eclampsia. If I had been diagnosed, I would not have had a lot of the water breaking, pre-labor, and other issues. I have since changed my OB doctor, as this is something I feel she should have easily diagnosed within 9 months. She didn't even bother to run a test....she had the samples, but didn't run the test.
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Wow...so it's been a long, long time. Lots to update. And...lots to make everyone smile! Hopefully.

After writing on the 10th, I was admitted into the hospital on the 12th for early labor. My water had broken, yet again, and we spent the night in the hospital (until about 3am) trying to STOP labor. I was stuck in the middle of a hard place. 1) I was scheduled for induction the next day at 6am (3 hours later...) so the hospital itself didn't want to waste an appointment (their words, not mine), and 2) the hospital is currently being swapped over to Obamacare - which as some of you know, requires ALL patients being induced to be 40 weeks on the dot unless it is dangerous for the patient. I was 39 weeks 6 days at the time I was admitted, and according to them not in any danger.

I gave birth on the 13th. I was medically induced at 6am. I was actually released with a sedative at 3am, and wound up getting about an hour of sleep. My mother in law was fantastic! I had no issues with the birth - at all. He was out in maybe 2 pushes. He was so fast that even the nurses and doctor were trying to convince me it wasn't "time yet". (Any mother knows WHEN it's time to push, you really have no control at a certain point...) I didn't tear or have ANY issues until later. The delivering doctor actually told the nurses that they didn't want me to go into labor until 5pm, because they were busy at the golf course until then. He also made sure all 3 of us giving birth that day did so within minutes of each other.

My hip knocked back into place about an hour after delivery. It sounded like I broke my back and the nurses freaked out. I thought their reactions were hysterical. I was laughing so hard that I started to cry. I was bouncing around the hospital room within 4 hours of giving birth. My children and mother in law were NOT allowed to see us while I was in the hospital due to a FLU ban. Thus, I pushed to be released within 24 hours. I jumped through a lot of hoops to get this done. I even was harassed about paternity of my child (?? I've been married 15 years...) before being released. I jumped through hoops that weren't hospital policy, just to get out and back home. (My mother in law flew back home the day I was released)

WHILE I was induced AND during my epidural (great time for a phone call!), I received a phone call from the ER. My mother was being admitted again. They wouldn't tell me much other then that my mother was REFUSING treatment (again) and I needed to come down right away. Uh huh. Like THAT is going to happen!

I will readily admit that I lost my patience. I told them to put me on speaker phone. I yelled at my mother that it was not an option, she is getting treatment and I couldn't come down. I didn't fall for her fake tears and didn't let her try to manipulate me into coming to babysit her. I told her that I was her POA, and currently in labor. I was NOT going downstairs mid-labor to babysit her and she needed to suck it up. (I know, not very smooth)

This actually caused the nurse in the ER (that called me) to call social services. They were concerned about "elder abuse". HA! What about these nurses, do they NOT understand...the #1 time NOT to annoy someone with bullshit, is WHEN they are in labor! Yes, the nurse calling AND my mother KNEW I was in labor - as that was the first words out of my mouth. Insanity!

To make things even worse, while I was bouncing around after labor, they went through my POA and tried to claim that it was NOT valid. The heck they say! According to the nurse, same one who called social services, my mother was completely 100% mentally competent. My mother's doctors called (all 4 of them - including her psychiatrist) on their DAY OFF, to tell the nurses and head of the hospital that she is NOT competent and my POA stands. Her main doctor actually came into the hospital FOR ME, to watch over her while I was in labor. Supposedly, the hospital staff placed my mother in "lockdown" until they could decide what to do about my POA. (Obviously it was real, and obviously social services couldn't do a damn thing about my telling my mother to accept treatment...they might not of liked how I said it, but it was said...so tuff noogies for you!)

I didn't hear back from them AFTER I told them to admit her and do whatever was necessary to make her feel better. My sister stepped up hardcore on this big time. She even went so far as to record every single phone call she had with them, thus according to what I was told later...sent up "red flags" to the hospital's lawyers and locked my mother down tighter then a triple knotted shoe string. So basically, no one knew what was going on or what was wrong with her. Even my mother's doctor was supposedly barred from my mother. (Sadly, he only sees her once a month - and this was his day off...so...he had no idea what was really going on...)

The day I was being released from the hospital, I felt VERY sick. My husband actually wound up getting the flu while he was there with me, and yes, I had to fight for him to be in the delivery room because of their "flu ban". (I also had to fight with them to let my husband hold my son first, but that is a whole 'nother story) I figured it was probably the flu that was going around, and we sent my mother in law home. Turns out, I had gained a brand new disease! Spinal meningitis AND postpartum pre-eclampsia hit with full force (plus a lot of other issues).

I went to the ER on the first day being out, after a seizure in the bath (my husband saved me from drowning after my puppy was going NUTS - his words, not mine). They diagnosed me with a "hormonal headache". (I knew it wasn't a hormonal headache, and this was definitely NOT one) I was released, but then quickly started having more seizures, vision fading to black, headaches, backaches...the whole 9. It was rough. I cried in massive pain that first night and a half. I couldn't have lights on anywhere near me. I was dying, though I didn't know it at the time.

My pediatrician scheduled me for an emergency appointment on January 15th (~2 days after giving birth). She took one look at me, called the ER and made sure they knew I was coming. Told me not to drive myself, and basically put the fear of God into me. Ripped my kids out of school, and I went in immediately. They took over an hour to see me, placed me near a public bathroom that ECHOES (ouch...) and then fought me about why I was there. Duh, I am here because I am REALLY sick and my doctor sent me..?

Once again, they tried to turn me away. According to the ER physician on duty, "google doesn't have all the answers. I found that odd, as I didn't mention google nor did I diagnos myself. (I was literally just hiding in my hooded sweatshirt trying to avoid sound and light). Also, my doctor is the one that called ahead to make sure they ran the tests on me...so...wth...

After my husband caused a stink, he made sure that they ran a few tests AND called the pediatrician. I was officially diagnosed with spinal meningitis, postpartum pre-eclampsia (I was never diagnosed due to not being considered a "risk factor" - not over 30, not overweigh, etc), and a slew of other issues (I forget the others, but some were low iron and stuff). Those first two weeks are a massive blur to me. I was told the nurses stopped counting my seizures after 27. Two weeks in, and I remember being really sick and wondering how my mom is doing.

Turns out, my mom was actually next door to me, THE WHOLE TIME. No one had told me OR my husband! (He is also on the POA and they obviously had both of our phone numbers) When I found out, I hit the roof. I demanded to see her, know what was going on, and everything else. Did you know they asked my mother if it was "okay"? Funny. My mom said it was fine and was surprised they were asking, as she KNOWS I have POA for exactly this reason. She was completely out of it, so I'm surprised she even said it was okay or remembered who I was.

The condition she was in - was pretty much death. She had yeast infections, fungal infections, loss of body weight by 30% (which is a lot, because she was WAY overweight before), her blood pressure meds were no longer working, she couldn't see because her eyes were covered in bacteria...and a slew of other issues. The doctor assigned to her was even surprised that I had not been made aware of her condition, when I was right.next.door.

Before I was released, I set up a treatment plan for her and went home myself. I mainly just remember her doctor going on and on about what was wrong with her, and how she wasn't responding to ANY medications. The doctor also said they were hand feeding her (this was news for me), as she couldn't physically lift her hand to feed herself. I basically just listened to him rattle off her issues and leaning against a wall (bad lactation nurse was sitting in the ONLY chair). I was really just trying not to pass out.

The only bad nurses I had were actually the final two. One was a male (turns out he was new), and he was the one that was refusing me to see my mother. He actually told me no, when I asked if I could see her (this caused me to start bawling like a baby, and freak everyone else out...because I had never once gotten emotional that entire time). The other was a training to be "lactation consultant", also new. She was trying to push me to pump, but when you have meningitis...you could easily infect your child that way...obviously, I wasn't going to do it and she wasn't understanding that. This same nurse also forgot to take out my IV from my arm when I left, thus making me have to turn around and go back to have it removed. She also never informed me when I was actually released, and I spent an additional 2 hours in the recovery ward until I asked if I could go.

I actually had to be quarantined for a good month (a little over a month and a half total) after I was released from the hospital a second time. During my recovery in the hospital, no one was allowed to see me at all. I was stuck in the bed/bathroom that entire time covered in sticky notes (I couldn't remember ANYTHING for 4 months). My girls would poke their heads in the room every once in a while, and I basically just slept an entire month. (I slept a good 22 hours a day back then)

During my stay in the hospital and at home, we used skype to watch cartoons with the kids and just hang out. We used the phone an awful lot. I was miserable, but I didn't let it show to the nurses. I was the life of the hopsital. Nurses would come into my room just to "chill out" or listen to my jokes. I was an easy patient. Never hit the call button unless it was for my medication. Told them during shift changes exactly what I'd need (soda, ice chips, no light, close the door), so they wouldn't have to check on me every hour. I basically wanted to be left alone, and I think they all understood that. My hubby was denied paternity leave, but I threatened a law suit (I was an attorney after all...)...and they finally gave it to him for two months. He did FANTASTIC while I was sick! (Though he'd never admit it, he was really worried about me and still is. He also cried when he saw me the day I was released. When I got home, he held me for a good hour in bed - then he de-germed himself)

I didn't get to see my son but for 2 days for the first month and a half of his life. I am angry about that. You cannot imagine how difficult it was for me to KNOW I have a son "somewhere", and not be able to hold him or take care of him. Yes, I got to see him on Skype or hear him crying or listen to stories about him...but it was definitely not the same. I cried every night, even when I got home and no one was allowed near me. (My husband had to wear surgical masks and gloves just to enter the room...then wash himself off completely after he left... We wound up having to buy the mask, gloves, and a blood pressure monitor from walmart after I was released. I was also on about 50 different medications that needed to be filled immediately.)

It also turns out that all 3 of the mothers giving birth (myself included) got spinal meningitis during our epidurals, due to a nurse having bronchitis and coughing on us. That same nurse killed one new baby boy, almost killed me, and the final mother only had a mild reaction. (We all had boys by the way, and we were the ONLY ones delivering. No, she didn't even wear a face mask...and yes it was ALL traced back to her via doctors and tests) The mother that lost her son is suing the nurse specficially. I am not sure of the outcome of that, and I'd rather not keep tabs on it...as it reminds me just how close we were to something so devestating.

My mother wound up recovering, and it was acknowledged that the nursing home wasn't feeding her OR cleaning her. She didn't have the strength to feed herself, so the nurses were giving her "protein shakes". My sister and I pitched a fit about that, and MADE SURE they were hand feeding her at EVERY meal. My sister has also taken care of EVERYTHING in regards to my mother. I JUST visit now, and (like next week) I occasionally do the care conferences.

I also called adult protective services. They did an investigation (I almost transferred her to another home an hour away). Immediately after the investigation, my mother's health dramatically became better. I saw her yesterday, and while she is still in la-la land, she is completely recovered from her near death experience. I do NOT know if anyone was fired or what happened with the investigation. I DO know that I was a brat on the phone when describing my mother's situation. The person I spoke with was appalled at what I told them, and immediately looked into it all.

Side note/Funny Story: My mother thinks there is a hole in the floor leading to the basement, that is filled with water. She claims my youngest daughter will fall through it and is constantly telling her to MOVE or me to pick her up. It's also the reason she won't get up in the middle of the night to go potty. Uh huh.

Also, while in the hospital...I made up Pokemon personas for every single nurse. I'll have to find my list at some point. It was really funny.

As per me, I am recovering VERY slowly. I had a lot of memory issues for MONTHS. I would do things like put candles in the sink, but really put them in the dishwasher (this cost me $500 for a new dishwasher...). I also put toys in the washing machine, instead of the tub, and now my washing machine sounds like a plane is taking off (we had to completely take it apart to remove the toys). I survived on sticky notes and calendars for MONTHS, until I could remember enough to SURVIVE in the real world. I wasn't allowed to drive until about a week ago. My doctor, husband, and I were terrifed my vision would fade with the kids in the car.

I do still get the headaches, backaches, light issues, and stuff. I am still on hydrocodone, managing my blood pressure (I still get vision issues), and taking sumatripten. I don't have daily issues, but when I get a cold (even a minor one)...I am sent right back to square one for at least a week (sometimes my hip knocks out of place still too). My pediatrician is actually helping me cope with all of my issues. I also require at least 16 hours of sleep now.

I started driving and taking care of the kids full time about 2 months ago. I love every minute of it. I came out of this entire experience with one key thing: I don't have the time or the patience to put up with the bullshit anymore. My husband reminds me daily that I almost died and to take it easy (he still worries about me everyday). But, no, I am here for my children. THEY are the reason I am alive. Without them, I would have easily given up.

Yes, I was unsurprisingly diagnosed with postpartum depression. But, I am managing that too. No medications for it. I look at my children, and that's all I need. I keep myself 100% busy 24-7, and don't think about being sad. I take it one day at a time.

My son was born healthy and happy. He is what you'd consider an "angel baby". Rarely cries, but when he does - it's for a reason. Always smiling. Very happy. My girls LOVE him to death and like to play at being "little mommy". My mother keeps calling him my brother's name though. Sigh. Some things will never change.

My son knows me now, and his first words were "mama" when he was upset. He also does a weird crawling backwards thing that is absolutely hysterical. He did NOT get spinal meningitis from me. Phew.
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Wow! Folks, You can't make this stuff up! Nurse Cratchett needs a huge attitude adjustment Every communication regarding this nurse needs to be made in writing to the director of nursing AND the NH administrator. I am sure she documents everything you and your family does/says ..By the way.... how did the delivery turn out?
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It sounds to me that a guilt trip put upon you by a professional nurse in very poor standing and possibly unethical behavior. Although a complaint would probably be ineffective. However, I would be sure to explain to said nurse my situation and reasoning behind why you did what you did. A food strike is unlikely to last and that responsibility is not yours. You must, above all, maintain your health and mental comfort for your future and the future of your child. I would steer totally clear until you are clinically safe and revisit later when the situation is better for you.
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Notenoughtime. This has been so difficult for you but you have no guilt to worry about.
A feeding tube would not have helped your Dad in fact it would probably have made his passing even more difficult. Although he seemed healthy at 91 he was in fact already slowly dying from his cancer. He had been loosing weight and contracted pneumonia plus he had difficulty swallowing all signs that something was wrong. he did not know and nor did you so again there is not need for guilt.
It is always very difficult to watch someone pass with the terminal secretions you describe but you were there to comfort him. Nothing helps at this time, trying to suction just makes it worse . The fear you saw in his eyes was very real but probably not because he was dying but because he could not breath which is always terrifying whatever the reason. the Dilaudid was given for sedation to try and calm the fear not for pain relief and it was a very compassionate action. When someone is dying artificail feeding puts more stress on essential organs. Letting Mother Nature take it's course is the kindest action so the body can slow down and finally stop essentail functions. In retrospect you made the right decision and were there with your Dad which was the most important action you could take. Dad is resting in peace so give yourself permission to relax and and grieve for the loss but also celebrate Dad's long life and let his final hours fade from memory. They were tough at the time but far better than suffering from long months of treating the cancer and finally having a similar end. Blessings
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Notenoughtime, you did what you could - you DO NOT deserve to feel guilt. If your dad was a much younger man, fighting for a feeding tube might have made some sense, but with cancer and pneumonia (even though he recovered from the pneumonia) at 91, I'm sure the doctors did what they felt was in his best interest and you (rightfully) listened to them.

I'm so sorry that your dad had a somewhat difficult passing, but with cancer of the esophagus, his ability to eat food and recover were probably just not there at his age. If he couldn't have a feeding tube put into his abdomen, he was in a very bad physical shape. You did what you could...please, please don't beat yourself up about it. I'm sure your dad wouldn't want that for you.
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I hope someone can help me with the extreme guilt I'm feeling over not insisting on a feeding tube for my father, and the trauma of watching him suffocate from water in his lungs 3 weeks later. He was originally admitted for pneumonia and difficulty swallowing food. After the hospital gave him a "swallowing test", he aspirated and then was given a ct scan and the hospital said he had cancer of the esophagus, a!so weight loss and ascites. I was with him 24/7, except to go home and shower every few days. The Dr.s had him on an I V for hydration and medication. My Dad did get over the pneumonia, also he told me he had no pain and didn't believe he had cancer. He was in good health prior to the pneumonia, except for losing a lot of weight. After the aspiration incident, he was sometimes lucid, sometimes not, but always believed he would get better. I repeatedly asked for a feeding tube, but all the Dr.s told me that it " would only feed the cancer", get infected, or pulled out. They left the saline IV in for 3 weeks & I saw my Dad slowly starve/waste away. Also, they did nothing to improve his condition in the ICU, pushed our family to move him to palliative care (one Dr. even said to me just as we were moving him"you do realize now we won't be doing anything to help him recover" when they hadn't done anything in ICU anyway to help him swallow or tube feed him. ) After we got to palliative care my Dad asked me "what happened", all he could say through the dilaudin they gave him, even though he said he was NOT ever in any pain from the cancer. He only lasted a week in palliative/comfort care, no feeding tube, just salt water IV and so much dilaudin he slept constantly. Now, I feel tremendous guilt over not demanding a feeding tube, every night I just am in emotional hell over not getting one for him. He wanted to live and never gave up. I also can't get over him struggling all the last night of his life to breathe and then slowly suffocating, with terrible gasping sounds, as he died while looking into my eyes. I'll never forget the breathing noises, or the look of fear in my Dad's eyes. If there is anyone who can tell me if a feeding tube would have helped or if the Dr.s were right when they said " it would only feed the cancer and wouldn't help" please let me know, because this guilt is awful and I feel I let my Dad down so badly. (By the way, he was 91, but still active, still drove his car, and very healthy until all this suddenly happened over a span of about a month, and was even planning a vacation with me). I feel I failed him and need to know if a feeding tube inserted into his upper thigh would have made him recover.
(He was too weak to have it directly inserted into his abdomen. Sorry this is so long, just trying to describe the situation clearly. This guilt and seeing him die is getting worse every day. Would a feeding tube have helped build his strength/recovery? Any helpful information would be very appreciated. Thanks
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