Life was kinda, well, Normal, there for a while - what happened/

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Date Joined May 2008
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   Posted 11/3/2009 6:40 AM (GMT -7)   
"Somebody"]Socrates; maybe. Anyway "The only difference between Heaven and hell, Horatio, is thinking makes it so".
I was tip toeing through a not so bad period where I was living in my own little apartment, visiting my Dad at least, say 2 times a month in the Nursing Home (200 miles away), going to flea markets to try to sell a few of my items I've collected over the years, reconnected with a couple old friends, had my refrigerator raided by my indigent son 29 or so times, caught on, if I buy Soya milk and black beans and stuff he doesn't like, my food lasts longer. Things were ok. I was de-stressing and not nearly having the pain and anxiety I'd had for the previous three years.
I got "the call" from the Nursing home. Dad has very aggressive cancer on his tongue and has between 2 weeks to 4 months max, to live.
So, I got busy. Last two weeks seeking Palliative Care here in our area as opposed to 400 miles round trip, away in a facility where they work wonders with dementia patients but cancer/palliative care, maybe 2 weeks of training ten years back for most of them. Now I have a problem. Care coordinator says "he's got a nursing home bed, we have no reason to move him. Well I sure as heck do. He has two brothers one sister, nieces, nephews, friends, me, his POA and caregiver, etc. etc. here in this area and they need him here. They are (the sibs) too old to drive 400 miles to visit their dying brother. I am everyday, almost all day on the phone or awaiting a call about the latest "no", about what will and will not be possible.
So, against all advice, my son's (the fridge raider), and many others, I say, two weeks to 4 months, I can do this. palliative care, Peritoneal Care, VON, can all come here. As long as he's around his loved ones, his dog, me, his brothers and sisters, my sons etc. I can do this. If he survives 4 months, which he won't, but should he, well then we'll re-evaluate. At least I can sit by his bed and hold his and while death comes roughly through the dark, dark, night.

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 11/3/2009 7:07 AM (GMT -7)   
Bless your heart, you are a loving, compassionate daughter trying to do the best for
her dad. It is very hard when your loved one is so far away and you know there isn't
much time left. I know how much you want to be with him. If you are able to bring
him to your home is it possible to have help from hospice? Hopefully you can get the
help and support you need.
I am so sorry that you are going through this. Sending gentle hugs and prayers
your way.

Veteran Member

Date Joined Nov 2008
Total Posts : 2858
   Posted 11/3/2009 7:27 AM (GMT -7)   
So sorry your family is going through this, Tyno.  I have a friend that is going through the same thing right now with her parents...both are dying of Alzheimers and its complications and the only people they recognize are each other.  They took them out of the same facility and moved her mother about an hour away...why?  Just because she is worse than her father and they want his bed for someone else.  The family is driving back and forth...he wants to know where his wife is...he has gotten violent and has been put in restraints because he is so confused...why do they do this to dying people???
My prayers are with you.
fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium

Veteran Member

Date Joined May 2008
Total Posts : 1081
   Posted 11/3/2009 7:45 AM (GMT -7)   
Sometimes you have to wonder "what are these people thinking?, when it comes to care of the elderly. Do they think they will live forever? Never get old? We have to work with the crumbs they give us. So we do. Got limes, make margaritas. Thank-you for your kind words of support.

Veteran Member

Date Joined Feb 2009
Total Posts : 844
   Posted 11/3/2009 8:23 AM (GMT -7)   
Tyno, I'm sorry you and your family are going through this.  I was one of the caregivers for both of my parents.  Against all the "professionals" advice we kept Dad at home and family gave him 24/7 care.  He lived 6 months and none of us regret what we did.  Mom was with us for 6 years.  That was harder but again, none of us regret what we did.  We all were with both of them when they died.   You and your family know what is best for your dad.  Bless all of you.
Fibromyalgia, arthritis in spine and hips, IBS, Raynaud's syndrome, hypertension
On the eighth day God created Golden Retrievers.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17524
   Posted 11/3/2009 10:31 AM (GMT -7)   

I moved my mother from one nursing home to another because it was a 30 minute drive each way...nothing like what you are having to do.  If they have a Medicare bed and your Dad has Medicare, there shouldn't be a problem.  But, you might have to do the moving.  I moved my Mom myself.  It was well worth it and she was close to me the last six months of her life.


Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Regular Member

Date Joined May 2009
Total Posts : 447
   Posted 11/3/2009 2:09 PM (GMT -7)   
I feel for you, I am lucky nieither of my parents are in that place yet also here they would not need to be so far away my father in law was only put into care the last day because he was cared for at home until that last day. And then only because the doctors did not want the pressure of it on MIL. We have never regreated having him at home for that last few months. Yes he had quality of life and he lived at lot longer then they believed he would but the grandchilren had that time with him. I can only say bless you spend that time with him you will never get it back. My grandmother spent her last 3 months in a home and the family where so sorry that it happened but we lived 5 hours away and my mother and I could not look after her as we had young children and she became quite disruptive in the end. Love your Dad.


FMS, CFS, IBS, Migraine

Veteran Member

Date Joined May 2008
Total Posts : 1081
   Posted 11/3/2009 5:28 PM (GMT -7)   
Thank-you all so much for your words of support. this is going to be incredibly hard, a feeding tube, possibly a tracheotomy, nurses in three times a day, but I am already lining up my support system, friends and family to relieve the stress. Also, by having him home instead of in that nursing home, he gets moved up on the list for a palliative care bed. So, despite what we are facing, it seems the correct decision. Thank-you again.

Veteran Member

Date Joined Jul 2008
Total Posts : 1495
   Posted 11/3/2009 9:40 PM (GMT -7)   
Wow Tyno.  Your dad is fortunate to have you.  I hope this works out and they find him a good place to stay or at least get you some help while he is at your house.

Veteran Member

Date Joined Mar 2009
Total Posts : 599
   Posted 11/3/2009 11:38 PM (GMT -7)   
Tyno, I feel your struggle and pain. Your Dad is so lucky to have you. The end of life is a reamrkable time between a parent and child, and I am blessed to have taken care of not only my Dad but my Mom. Only you can say what is right, and I'm so happy for your decision. Your fibro family is here for you!

Veteran Member

Date Joined May 2008
Total Posts : 1081
   Posted 11/4/2009 12:06 AM (GMT -7)   
The way fate fell into place it was a "no brainer". Thank-you again.

Regular Member

Date Joined Jul 2007
Total Posts : 43
   Posted 11/4/2009 12:21 AM (GMT -7)   
You are a wonderful person!
I worked in nursing homes for 10 years and so many times I would see NO one come and visit until they died.
To tell the truth.. I am at this moment crying for what a wonderful person with a great heart that you are. Keep us updated on how it is going with your father. I wish you both the best and you will be in my prayers.
Love & Soft Hugs,

Dx with: CFS '09...Fibro '02...Myofascial Pain '02... Gerd '03...Migraine Headaches...
Restless Leg Syndrome '08...IBS '99...Depression '99...
Early Menopause from Hysterectomy '00..removal of gallbladder '00 and appendix '08

Meds: Fentanyl Patch 75mg,Lidocaine Patch 5mg, Ropinirole 1mg, Zoloft 50mg, Aciphix 40mg, Darvoct as needed to help with RLS, Aleve & Tylenol as needed

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