Topic: Dad keeps falling...

Just wanted to share my experience this week -

Dad has now been in the nursing home for over a week.  He, with the help of his family and doctor, have decided to switch from aggressive treatment to hospice care.  It was a difficult decision, but we felt it was time. 

He has deteriorated to the condition where he simply can't stand, or hold himself up, and has no balance whatsoever.  Three times he has fallen out of bed trying to get up, the last time being this morning, where in his state of disorientation, pulled his foley line out.  He was sent to the hospital, where they checked him out, and he was able to return to the facility.  They are planning on moving his bed closer to the nurse's station to further keep an eye on him, as well as lowering his bed closer to the floor, surrounded by padded cushions.   

I and others have tried and tried to explain to him that he needs to call someone for help - that he must not stand on his own, but it's just not sinking into his faulty mind. 

With hospice care, I envision dad having a comfortable, pain-free, and peaceful demise with loved ones at his side, but the way things are going, I wonder if it will be a fall that will meet him at the end of his time.

Re: Dad keeps falling...

Dear Jan,
             I am so sorry to hear about your dad's falls. Do they not have sides that they can put up on the bed to prevent this? At this point, as you say, the very best you can hope for is that your dad is able to be comfortable, pain free and peaceful so that he can rest calmly with his loved ones around him. This is what I so wish my husband, Anthony , had experienced but it wasn't like that at all. Your dad is clearly not able to work things out for himself at the moment. He sounds agitated and confused which is the way people often are towards the end with this disease. It is the hospice staff who need to do all in their power to give him the medication and care that he needs to help him to have the end you envisaged. Talk to them until they get it right. My darling Anthony was in terrible pain and suffered so badly and this haunts me all the time. I sincerely hope it will be different for your dad. Thinking of you,
                 Pauline

3 (edited by marions Mon, 13 Oct 2008 09:59:15)

Re: Dad keeps falling...

Jan

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Dad keeps falling...

Jan,  I am sad to hear about your father and his falls.  Can I ask if his doctor offered any opinion as to why he falls?  I ask because about a year ago my Dad started falling once in a while.  He was not able to help himself up, so would call my husband or I to help.   We discussed this with his doctor, and were told to be careful.  (???)  This past December Dad could not stand at all.  And he was never able to again.  He felt that he should be able to, so I asked for tests to be done.  He went to the hospital...big joke...I was told that my dad should begin physical therapy.  I asked if they took any tests, they said they didn't feel it was necessary.  Then they sent dad to a nursing home.  I can't even begin to tell you that story because he was terribly mistreated.  My hubby and I took pictures of the bruises, scratches all over his body.  Suffice to say...Golden Living  (or Golden Crap as my husband called it) was shut down last week.  YAHOO.  But I digress.    Because of the neglect  that dad received from "golden #*&% ", dad was transported via ambulance to ER near death.  That was when I requested tests for the second time.  Because of my 'hissy' fit, and my husband's perserverance, they ran tests.   That's when they returned singing a different tune.  Seems they were wrong that dad was simply refusing to want to walk.  Seems like he is full of tumors pushing against his lower extremeties.   "We'll take more tests."  "Yup, we better do a biopsy."  "Ok, maybe you should see an oncologist."  "I'm sorry to say, your dad has cholangiocarcinoma."   "Your father won't live  past 6 months.  He's got 4 months tops." 
What???!!!   You said he just didn't want to walk...you said there was no reason to take tests, it's all in his head.  You people put my dad through holy hell, refused to listen when I told you this was not normal, accused him of fraud if he returned saying he couldn't walk...etc.   YES, THIS ALL ACTUALLY HAPPENED TO MY FAMILY.   (but my daddy has been a busy boy in heaven:  golden crap was shut down, and the hospital social worker who would not listen to us when dad was first brought to the hospital by me, has been fired by the hospital.  And while I wanted to write letters of disappointment, I was busy with dad, and didn't have the time.   So, I can't claim responsibility for either demise.  Karma or daddy.)

>Jan, I apologize for my ranting...I haven't shared this on my entries at all.  I guess it just needs to come out of me.  So I won't delete, as I have been prone to do before.<

Further MRI's showed that the cancer had spread so much, that it was eating out of the bone of his femur.  This was the reason we ceased PT, because really, dad would never walk again.  That was so difficult for him.  He was such an athlete.  So independent.  To have lost his ability to be self reliant, was really hard for him to accept.  Harder than the death sentence he received?  "Sometimes" is what dad told me. 

As far as rails on beds...in our state of MN, "standard" rails are not permitted on beds in nursing homes or in intermediate care facilities (ICF).  My husband and I have a small business primarily for persons with developmental disabilites  (group homes, ICF's before they became assisted living facilities, etc), and personal care services.  You'd think that for safety reasons this wouldn't be an issue.  However, the feds were finding out that patients would get entangled in them, and after several deaths statewide, the feds took the initiative to not allow them.  There are ways, however...soft rails, or smaller rails.  When we moved Dad to the other nursing home  (there were no openings before)  I was insisting on rails, even though I knew there was nothing they could do.  They did bring small rails, acceptable to the state, for him.  But that was the best they could do regarding rails.  They do have sensor pads, which monitors  movement and sets off bells and whistles before the patient falls out of bed.   But that is all relative.  It depends on the quickness of the available staff, and like marions said-  patient to staff ratio.   I don't mean to be negative...just being realistic.  Even though this nursing home was hands down a superior facility, I still stayed with dad into the wee hours of the morning, and returned around supper time for my "shift".  When dad's medicare 100 day rule was up...I brought dad home with me.  We never had a chance  for hospice.  It was on our end-plan.  But an infection shook all our plans.  His body couldn't fight it.

I apologize, again, for this rant.  I really just wondered if they offered any reason for your dad's fall.  Is it because of CC?  Dad's doctors held on to the premise that the two were not related.  Common sense tells me differently. 

Peace be with you and your family, and thank you for listening.
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Dad keeps falling...

Thanks for all your experiences and opinions. 

Daddysgirl, I feel for you and your horrid experience with nursing home care.  I have heard other nightmarish stories similar to yours, and fortunately most of the really bad facilities have been closed down. 

As far as tests to see why he is falling, yes, we could have more tests done, but we've made the decision to begin the hospice program, and feel that he has been poked and prodded enough.  He began falling on occasion at home months ago, and this has gotten worse as the cancer has progressed.  The cancer has invaded his organs, his platelets are low, chems are out of whack, and we are definitely beyond any PT to be of any use.

Federal regs do not allow restraints including rails on the beds.  He has a sensor alarm, but as disoriented as he is, he somehow manages to remove it.  He was moved yesterday to a room nearer the nurse's station.  I know it sounds unbelievable, but other than this issue of falling, this nursing home is the best of any I have experienced, and between my parents and my inlaws, I've experienced many.  I sincerely believe that if they can protect him, this facility is a good match.  I do not want to move Dad again, unless it is to the hospice inpatient center during his final days.  I met with the nursing supervisor and the hospice nurse yesterday, and they have assured me they will do all they can to give him the attention that he needs to keep him safe.  God, I hope so.

Re: Dad keeps falling...

Jan...you have certainly done a wonderful job by finding a great facility for your Dad.  Having moved him closer for observation certainly, is proving their commitment to care for your Dad as expected and the promise of providing extra attention should allow you to be more at ease.  Thinking of your and your Dad and sending good wishes your way.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Dad keeps falling...

Jolene,

What my husband Jim & I experienced was no where near as bad as what you explained, however, he also was told in the beginning that he was depressed & needed to eat & drink more, get up & get going & do PT. At that point they thought he just had a kidney problem & blood clots. We went through some similar experiences to yours with the ER, hospital etc. After he passed away (7 weeks later at the age of 62) I called the head of ER & told her exactly what had all happened & that he had passed away from CC. Hopefully something was done about it.  I know that CC is hard to diagnois as it is a silent disease that sneaks up on you & then hits with a vengence, but no one deserves to be treated badly & told there is basically nothing wrong when in reality everything was worng! I know this is no help, but I just wanted you to know that you are not alone.  There are others of us that also experienced some of what you & your Dad did.  I guess I needed to vent a little, too!

Jan,

I am glad that things worked out for your & your Dad with this facility.  I too am thinking of you & wish you & your Dad the best.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.