bette_kaffitz posted:
Linda R's post has got me going again. During her BIL's illness they went through all the doctors, hospitals, home care, and the whole mess that happens when someone has a terminal illness.

Hospice can help. Hospice is set up to cover the paliative (easing of pain, better quality of life) care for anyone who is not expected to live for another year. They bring in all the durable equipment you may need whether it is a hospital bed, a commode, a walker, a wheelchair, or any other aid for your loved one's care. They arrange for a visiting nurse, home visits by a doctor, home health aides, and any other necessary help you may need. They supply your sterile dressings, medications, IV supplies. In short, they give you anything you need for your loved one to stay in his own home.

If skilled nursing in a medical setting is needed, whether for respite or for longer term care, they supply it.

They work with your insurance. For most of us, their services are FREE.

Yet, all too often, hospice is called in only within the last few days or weeks. This is such a shame. Families are left to struggle alone with the difficult tasks surrounding 24/7 care.

Why does this have to happen. Sometimes it is a matter of communication. The doctor never tells the patient (or the patient decides--for whatever reason) that he is terminal. Sometimes it is a matter of a family seeking some miracle cure long after this is still an option. Sometimes it is simply denial.

But what if your family is faced with this dilemma, but the patient is still mobile? Hospice can work with you, increasing services as necessary. What if the illness lasts more than the one year you were originally given? Hospice can be extended.

When you talk to friends at their end, the biggest worry they have is the toll this illness is taking on their caregiver(s). When there is someone there to help with the daily bath, the changing of dressings, the I.V., or just being there so the caregiver can do some shopping or just get out for an afternoon it makes a difference for the patient's peace of mind.

We all feel the pain of Linda R.'s loss. Most of us have experienced something like this in our circle of family and friends. Anything that makes this horrible time a little less of a burden is a Godsend.

I know when my mother's multiple mylenoma was ending, we had hospice. But this was only during the last 4 days! What a blessing it would have been to have this extra help for the last 6 months--when I was doing the 600 mile round trip ever other week and cramming in 60-hour work weeks so I could manage those long weekends and my sister and sister-in-law were doing the same.

During my mother-in-law's bout with lung cancer, my husband, son, or I was with her at all times. But for the last 6 weeks, we had help from hospice. The home health aide came every morning to help with bathtime. The nurse came at least twice each week and daily at the end. She was the one who pronounced Mom dead. We never had to pay a penny for all of that loving care. Hospice helps.


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rudyandirmouse responded:
Betty, FYI my BIL had less than 5 hours in home hospic. He did not see lots of doctors or go to hospitals. You are way off using him as a base for your post.

Linda R
bette_kaffitz replied to rudyandirmouse's response:

What would your family's life would have been like if hospice had been called in months ago? Would there have been any difference in the way your BIL spent those last months? I realize that the reports you finally saw were not good. What if those reports had been open to you in a more timely manner? IF you had gotten a second opinion at that time, and the prognosis had still been the same, having hospice as one more source of care would have made these last months easier for your BIL and your whole family.

It seems that what your BIL had been receiving for these last months was just palliative care. It could have been furnished at home with less stress on everyone if hospice had been involved earlier.

Doctors seem to wait until the last few days to even mention hospice. And the family does not have the tools available to make end-of-life care easier.

Perhaps your family had a different experience. No one got overtired. No one had to do more lifting than she felt safe doing. No one was unsure of what to do next because there was no nurse there to ask.

I sincerely hope that your dear family had nothing but the best possible memories of your last times with this much-loved man. For many families this is not the way things were. For them, a service like hospice is a gift that turns those last memories into ones of quiet talks--not backbreaking work.

I have been told that our county has one of the best hospice networks in the state. Perhaps this has colored my judgement.

You have been through a very rough time these last few weeks. You have lost a very important part of your life. You have watched a vibrant man full of humor and love become wracked with pain and fade away. It is a very great personal loss to you.

I understand this loss and wish that the paid and sadnes could be taken away. You are such a loving, giving person that it hurts us all to hear of your pain.

I sincerely apologize if I have offended you in any way.
I would never have intentionally added to you grief.

rudyandirmouse replied to bette_kaffitz's response:
Please stop! You have offended me.
rudyandirmouse replied to bette_kaffitz's response:
Never reply to any post of mine again. Dont refer to anything I say here again. You don't know me. You aven't the right to assume things about my life or time with this family event. Your soap box rant about home care and hospice, doctors and hospitals by using our family's heart breaking event is disrespectful and offends me to the core.
booch007 replied to rudyandirmouse's response:
Dear Linda,

I am sorry to read of your loss. It is so hard to say goodbye to people. I have been around alot of loss in my life and career and I have learned some things but one thing is,
"Never let anyone tell you it is time to stop greiving". It is a personal time a deepseeded emotion of loss.

I wish all the best for you and hope you have such good memories of him to lean on during this time.

Nancy B
booch007 responded:
Good morning Bette,

This is a good piece on Hospice and is lacking little. It is true people called us way too late in the process but sometimes it was the attending that held up the admission, or they even at the time of my admission didn't want the word to be said.......
Like the patient doesn't know anything*. Those homes were tough. We always said we don't lie, if the patient asks we speak.

Hospice has a joint agreement with VNS if a case stabilizes and they do, they pass the case back and forth. We have had cases longer than a year at times.

When pain is managed and DON'T WE KNOW THIS. Life is better and the body chemistry changes and some processes of shut down change and improve.

If the case is on program and seems stabilized VNS will care for it until the conditon at hand is an issue again. Always consulting for symptom relief. They are amazing people, with spiritual help and different home therapies. We sent people to Florida hooking up with a company there to care for the case so he could be in his home there for a bit.

You are so right, there is so much available. For medicare it is all covered under the Part A (hospitalization) part. No extra costs....Other insurance you need to see what time is covered for care and again all is covered etc. What is not covered is meds not involved with the admission diagnoses. Like if you have cancer but you have a heart condition. Your heart meds are received the same way you always did, with copays aetc. The RN monitors them but they are not part of the coverage.

I also had hospice in for Mom who had COPD and it was time...I drove 6 parkways to get to her over and over or triaged on the phone. So she is in the hospital, I get hospice for the discharge, we meet their admissions coordinator at the house and she leaves, I leave and go home.............mom cals me at 10pm to tell me she wants to go back to the hospital and I just said."I'll be there in the morning" I just wanted to see my Cherry Tree*she says and **I said goodbye**. The next call was Dad in the night to say (and you will get this) Mom got into an attack and couldn't breathe, I called the ambulance....

They put a non rebreather mask on her. (A do not intubate pt)
So she got to the ER and was unconsciuous. I spoke with the ER doc from my home and asked to put dad on the phone and I just said. "Dad love her enough to say goodbye this time". (tough words to tell him) I left and drove like a maniac.....she passed in the moring.

So....NOT EVEN ONE DAY on hospice. I was an admissions coordinator for our hospice. See how it happens........
No chance with Dad...a rupture thoracic aneurysm, maybe had 6 hours with him.........hard to say goodbye and to talk when you what is coming. This was a tough goodbye.

I hope your post is helpful for some to understand the assistance that it gives the patient and the family to get through the dying process. They are so good at it.

I am so sorry Linda is hurt. I don't know of the post of his passing or what has been said before. I took this as an informative post for the fmily, to help us. Not looking at his passing as an example. So sorry Linda's feelings are hurt. I didn't take it that way.

Linda sorry you are hurt. Once we hit post it is there on the page and at times it doesn't look the way it is meant or said the way we feel. This looks informative, not judgemental. Both Bette and I are hard core hospital nurses who have seen such suffering for the patients or the families and at times it is education and learning ,the availability of services that makes all the difference. That doctors at times fall short of using the system to help a family.

Again sorry for the bad feelings here.

Hugs to all, Nancy B
rudyandirmouse replied to booch007's response:
Nancy, thank you. I appreciate your well wishes at our time of loss. We had hoped he would be able to get another dr's opinion but way to late for that.

He was a very private man who keep most of his medical condition to himself and let never let on how truly sick he was. We found out 3 weeks ago he had been given 2-8 weeks so family fly in to visit. He was cheerful and alert at all times. Almost felt like we were concerned for nothing. Then he slipped badly the last 3 days and left us early Friday morning.

His leaving us so shortly after all of us getting home. 2 days, was a heartbreaker. Dear Rudy/ DR is heading back to Los Angeles Monday for the services Wed. I just can't do that. It's not in my DNA to see those I love in a coffin. Instead I will always have those happy memories of his laughing, talking, being together and enjoying our company. For me I paid my final respect to him while he was able to hear and see it.

Again thank you for your post, it means so much to have the support of so many here when I need it most.

Gentle hugs, Linda R
ajnsmom replied to rudyandirmouse's response:
Linda, I'm sorry to hear of your loss!

Linda S. (Jax, FL)
rudyandirmouse replied to ajnsmom's response:
Thank you. Taking deep breaths and trying to be reflective. Gentle Hugs, Linda R.
Anon_2912 replied to rudyandirmouse's response:
I don't think it was a soapbox rant....

I have dealt with hospice with my mother, FIL, & neighbor.

Many don't know about hospice.
Anon_2912 replied to rudyandirmouse's response:
One quick suggestion..

If you don't want people to reply to your post don't post your life on the internet for millions to view.

Not being mean about this, but you are going to get reply's on people offering opinions, suggestions , and advice.

If you don't want to know what other's are doing nor do you want to know others to know what you are doing,

don't post on the internet... That simply.
rudyandirmouse replied to Anon_2912's response:
@ANON_2912, true enough. Will remember that from now on. Thank you for reminding me . Gentle hugs, Linda Reyes