What caused Mom's broken sacrum? - spread the blame...

Mom's flat on her back in the hospital, full of painkillers and unlikely to sit up soon - if ever again. Her prognosis is poor and my instincts tell me she will live a while but won't come back from this incident.  I've been racking my brain trying to understand the "one" thing responsible for Mom's broken sacrum and thus her excruciating pain and poor prognosis.  After days of guilt, I've come to realize that it's a combination of things  that caused this, though that doesn't make my sense of guilt go away.

The "fault"  lies with all of us who SHOULD have noticed Mom's increasing pain and thus her vulnerability and worked to PREVENT a break or fix it as a hairline fracture.    The primary cause of this break is Mom's age and physical condition.  She's 90 with has bad osteoporosis. This fact alone should make anyone more careful as they move her and more sensitive to her complaints of increased pain. For years she's refused to exercise, to take calcium or vitamin D and small estrogen supplements to maintain bone strength.  The brake could have occurred if she sat down too hard or was constipated and had to strain during a BM.   Mom asked that aides, my neice and myself rub her lower back to help her pain.  The location where she wanted us to rub was very near her sacrum.  We, in our attempts to help her, might have aggravated her break without knowing it. 

I feel some responsibility for her current state because I didn't visit for nearly two months. I live 7 hours away and didn't want to drive through snow and ice.   Had I gone there, I'd have listened to her; I'd notice her pain.  Had I asked questions, had I understood that her pain was increasing, I could have pushed for an MRI earlier.  Had I called the nurse at night instead of just calling Mom to visit, I might have known something was up.

I blame my brother because he lives in Mom's home town and got 2 calls about her being "assisted to the floor" after her wheelchair rolled out from under her as an aide sat her down. He didn't call me, he didn't call the doctor.  He just told the nursing home aides TWICE to fix the brakes. After the 2nd "assist to the floor", the nursing home used a portable x-ray to look at her hip but never looked further to her back. This is an elderly person with KNOWN osteoporosis - it's absolute neglect NOT to look at BOTH hips and her back.  I'd have insisted on an MRI then - 5  weeks ago when her pain was controlled with tylenol and rest.  Obviously the break was not as bad then and perhaps something might have been done that would cause her less pain and NOT cost her life. 

I blame the nurses and aides at the nursing home for their failure to simply pay attention.  I'm REALLY angry about this and plan to complain to the state after Mom passes away.  After learning of these "assists to the floor", I visited her. I spoke with the night nurse on 2/18 who told me that she's noted an increase in Mom's pain for 8 weeks - that's 2 MONTHS and no one did a thing.  The night nurse DID HER JOB; she wrote down her concerns so the DNS - director of nursing services - could see it and take action.  Yet, there are NO reports to her doctor, NO calls to family until something happens that might be a liability to the nursing home.   When something DID happen - the brakes on the wheelchair failed, they called the family to fix it when the chair belongs to the nursing home!  They KNOW this yet they called my brother anyway.

I blame her doctor for insisting that she be in this particular nursing home because "none of the others communicate with me as well."... Hmmm... I hope he'll reconsider THAT opinion NOW that they've caused my mom a painful death.   I blame him for a failure to act sooner, he waited two weeks to order an MRI and during that time her pain became worse. Thus the trip to the ER and the failed attempt at a, literally, heart stopping MRI.

I know I need to let this go.  I know that my regrets don't help Mom now but by talking about it, by making people aware, I hope something positive will come out of it.  My Mom is suffering and I am so sorry.  I want so badly to prevent this for someone else.  Listen to their pain and act to prevent problems as soon as you can.

Dead in the MRI and broken sacrum = long recovery IF mom can make the trip at all

In the past 5 days Mom’s died once, received 9 IVs and one epidural.   Last Friday, Mom was in so much pain that the nursing home insisted she go to the ER.  They called her doctor to meet her at the ER but he was too late to stop the ER doctor from attempting an MRI.  They did an EKG before the MRI but didn’t look at the results before giving her propofol (Diprivan) as a sedative.   Though they only gave her a small amount –about 1/5 the “usual dose” for an adult – it was enough to stop her heart.   If the ER doc had looked at the EKG, he’d have seen that she was in atrial fibrillation – her heart was beating erratically and not in regular sinus rhythm.    The technicians gave her epinephrine (also known as adrenaline) and did chest compressions to successfully restart her heart in normal rhythm.  

She was transferred to the ICU and hooked up to every monitor known to man and medicine.  I arrived in town to find her confused and begging for God to deliver her from such torture.  She was on a fentanyl patch and 2ml (milliliters??) of dilaudid (hydromorphone) every 2 hours.  The nurses in the ICU were great; they came in every hour to give her 1 ml and were quite attentive to her every need.  They even tried to feed her but she would not budge – she wanted no food at all.  On Monday she was in and out of it, she recognized us all but had a hard time focusing on a thought.  

The doctor developed a whole plan to administer certain drugs on Tuesday to complete an MRI to see exactly what was happening with her back and hip.  The results were poor – cracked sacrum, severe osteoporosis and arthritis that is compressing her sciatic nerve and causing extreme pain.  Tuesday was a rough day. She was terribly confused by the drugs and didn’t want to go into the MRI machine.   Luckily, she made it through just fine but the drugs she had to take made her feel awful well into Wednesday.   Every 5 minutes she repeated that “everything is backwards”.   It was as though she developed severe dementia overnight.  She told me that she saw God sitting next to her while I had some lunch.  All afternoon I had to share my chair with God.  It was the only chair so I had to sit on the forward part of the seat so that he had room to sit down with me.  If I tried to move back she’d correct me and tell me to leave room  for God.  She realized it sounded crazy and said she was embarrassed to tell me; she could not actually see God in the room but she was certain he was there.   As the day wore on, I wondered if it was metaphorical and if she really was trying to tell ME to become more spiritual; that I should make room for God...   What ever the purpose, we laughed about it a bit and she remembered it the next day on Wednesday.  

Wednesday morning Mom was less confused but still agitated.  She was scared and wondered why she had to suffer so; why they could not fix her pain and return her to “normal”.  She was tired of laying down and wanted to sit up but it hurt too much.   In the afternoon she went for an epidural and returned changed – more alert, more at ease and less agitated.  During the epidural, my brother and I sat nearby and heard her yelling out. We nearly cried, believing she was in pain.  Soon after the yelling the doctor came out and told us that she was yelling because they had to move her into a bath and it was cooler than she wanted.  On the way out of the epidural, again, she was asking “why” – “I’ve been a good girl, all my life… why must I suffer like this…”  It was hard to hear but she looked so much better that we still felt relieved.  

The “pain” doctor had good news and bad – the epidural went well but…. The fracture in her sacrum was worse than we thought, it was in pieces and healing was unlikely.  Generally, they could glue a crack with surgery but there is no way they’d put mom out again.  Given her osteoporosis, it might just break again soon anyway.   He said she’ll have constant pain for the rest of her life;  laying flat or sitting probably won’t hurt but moving up or down will.   So – how do we tell her that?  Having to tell her is worse than learning she had the break… dammit!  My poor momma!

Mom's heart stops in the MRI and now narcotics won't touch her pain

Since my last post Mom's been through a lot - the worst part is that, even with narcotics, her pain is increasing and she's often in great pain.   I went to see her on Presidents Day weekend and found her pretty uncomfortable.   I and the aides did what we could to help her and when I left town, she seemed fine.  Because the pain came and went, we thought it was her sciatic nerve; massage and change of position relieved the pain.   That changed after I left town.  By Wednesday evening, she called my brother to ask that he come take her to the ER. A call to the doctor and more pain meds helped.   By Thursday the Nursing Home called me to say that she's in such pain, that she's suffering so much that they must send her to the ER.  I agreed, of course I agreed.  Once there, the ER doctor ordered an MRI.  Mom died in the MRI tube before it could be completed.

They revived her quickly with some chest compressions and -"some shot" as my brother tells me.  Her doctor tells us that her heart beat was erratic - not in regular sinus rhythm - and when they sedated Mom is caused her heart rate to slow so much that it stopped.  They only resuscitate her because they did not know if she or her family signed a DNR (do not resuscitate order).   That evening she was resting comfortably.. but the next morning was hell..  Mom woke up in great pain.  She yelled, she asked what they were doing to her; she called them all devils and demanded to return to the nursing home.  The pain began again and they've increased her pain medications 3 times.   The nurse tells us that the amount of medication she's getting now could slow her heart or cause long term issues with her memory or cognition.   

So, now I'll rush home and hope we'll find something to make her comfortable or that she'll find some peace.   By writing "find some peace" I guess I mean that she'll pass away.  I DO NOT WISH THAT MY MOM WILL DIE!!  But, to see her suffer is so awful.  It's as excruciating for us as it is for her.  I'd gladly take her pain for myself if I could.  She told my niece - a CNA - "no tubes, no surgeries, leave me alone". She won't tell us because she doesn't want us to worry and get all emotional but she'll tell my niece  -perhaps it's just too emotional for her too.   I realize it's only a matter of time. She's 90, something will cause her death sooner than later but I'm not ready for her to go.   I've been preparing for it for 5 years but when the reality is right here, right now, I don't want it to happen.  Perhaps her suffering is for us - making it easier for us to let her go to find peace.    I can imagine life no visits to nursing homes, life without depends or wheelchairs or dentures on the bedstand but I can't imagine life without my Mom.   I miss her already.

Mom falls and I get no calls... guess what hit the fan..

Last week was pretty rough - in 2 calls, I learned that Mom's in a lot of pain; had 2 falls and no one's called to tell me what's going on.  I had to "put the bitch on" and demand that I get calls from now on.   I learned of these falls on Feb 8 when the transportation coordinator told me that Mom's doctor made an appointment for her the next day at 330pm.  "Why?" I ask.. "well, he just wants to check up on her.." is the vague reply.  Her regular check up is not until the end of February so I asked to speak with the nurse.  The nurse was also vague with details.  It was like playing 20 questions.  The nurse told me mom had an "assist to the floor" - it's basically where an aide has a hold of my mom but she still ends up on the floor.  The fact that she ended up on the floor is not the reason for the doctor visit.   The nurse finally said that she requested the doctors visit because Mom's "just not herself".   "What does that mean?"  I'm ticked now because I have to push for these details..  She tells me that Mom's had back pain, that she's not felt well enough to go to the dining room, that she's asking for pain pills in the morning before she gets up.

This is very distressing because  my mom has a high tolerance for pain.  She's not a baby, she's not a whiner; she doesn't do this for attention.  She's hurting and they've let it go on for nearly a month!  I called my sister in law to see if she or my brother could meet mom at the doctor and learned that Mom had 2 falls not 1.  The first was about Jan 10 and the second - the one the nurse told me about - was Jan 21.  Apparently the brakes on Mom's wheel chair failed and it rolled away from her as an aide was helping her to sit down - they both ended up on the floor.   It happened again two weeks later.  My brother went up to investigate and pointed out the bad brakes - they're fixed now but at what cost to my mom?   Sister in Law also told me that Mom has a bad bruise and open wound near her armpit  - no doubt a skin tear where the aide had a hold of my mom.  None of these details - requesting pain medication, refusing to go to meals, the would, the 2nd fall -were in the fax that the nursing home sent to the doctor.  I had to write a letter and fax it to him to ensure he gets the details.  I also feel it's necessary to point out to him that she's asking for pain medications - which she'd normally not do. I asked that he order an MRI or CAT scan - something to figure out if anything was broken or misaligned during these "assists to the floor".  ARGH!!

I have to visit the nursing home next week to discuss their failure to call me.  I was very pointed - nearly yelling -  when I spoke to the nurse - "CALL ME,  I HAVE MOM'S POWER OF ATTORNEY, I PAY THE BILLS.  MY LOCAL FAMILY DOES NOT COMMUNICATE WITH ME. YOU MUST CALL ME."  She wrote it on a post it and promised to put it in the file.   A lot of good that will do - post it's fall off, the glue goes bad.   She promised to tape it in place.  Right.  I'm not convinced.  I believe they'll blow it off - they'll blow ME off.   It really makes me distrust them and the kind of care they're giving to my mom.   I feel powerless to do anything - I need them to be good to my Mom.  I need them to keep her there or her doctor will insist she find another physician.  It's an awful situation and Mom suffers for all of it.  Hopefully, I can make it a little better during my visit next week.