dad has passed

[mattb]

Re: Terminal Wean from Ventilator

Well my dad passed peacefully at a local hospice house on Monday April 16, 2015 at proximately 11:30 AM after ventilator withdrawl. He was given an IV of Fentanyl and Verced (these drugs are supposed to be faster acting than morphine and ativan). Once he was non-responsive his ventilator was removed and the circuit was disconnected from his trach. A nurse was on standby with additional meds that could be injected directly into his IV if he stirred or showed any signs of discomfort. After about 10 minutes he stirred slightly and more medication was administered. Every 5 minutes or so, the doctor would check for a heartbeat. About 10 minutes after the additional meds were injected the doctor confirmed that the heart had stopped and he has passed. It took about 20 minutes for him to pass once disconnected from the vent, which was a bit longer than we had anticipated, but he did not show any signs of distress and passed peacefully with our family and his priest present.

A few things to note upon reflection. My dad was admitted to the hospice house for "respite care" on Friday with sedation and vent withdrawl scheduled for Monday morning. The "respite care" admission status prevented him from getting very much medical attention. No doctors, respiratory therapists or anyone other than the shift RN and CNA stopped by his room. He was administered the food and meds that we provided, usually by us. The hospice staff was was very nice, calming and available if we needed anything, but they were not familiar with ventilators or trach care. We had to remain present the entire weekend to ensure that his respiratory and trach care needs were covered. Had he been admitted for "general inpatient care" they would likely have had a Respiratory Therapist (RT) visit a few times to handle the things we did to ensure his comfort and respiratory health prior to sedation and vent withdrawl on Monday. The weekend staff seemed to be less skilled than the weekday staff which includes a doctor on premises.

We requested a "ventilator wean" after sedation to minimize the risk of air hunger while waiting for medication to take effect. The hospice house had a policy and protocol that they followed which did not allow them to turn the ventilator back on once it was removed. They made us get a double lumin PICC line inserted into dad's vein prior to admission to ensure rapid drug delivery, they also used fast acting drugs to accomidate a rapid "vent withdrawl" versus a "terminal wean". We fought them over this and wanted an RT present in case distress was evident, and vent wean had to be paused or reversed to ensure adequate sedation and comfort prior to withdrawl. Initially they agreed, but then changed their position when the contracted RT company (or person) would not support a vent wean or withdrawl. They assured us that it would be done quickly and without distress, I was very skeptical but did not fight their protocol. I considered trying to get an RT from the ALS clinic to be present, but decided againstf it. Deviating from their protocol would have shifted the blame to us if anything went wrong. In the end things played out as they told us it would and dad passed peacefully.

Once he passed they were very comforting and respectful. This was obviously their strength and expertise. I am happy that we let them handle it and very glad we did not try to administer end of life measures at my home.

Dad has a tracheostomy and ventilator for a little over 14 months. He died at 72 with only limited use of his hands and facial muscles. He had a G-Tube, Foley catheter and was virtually incontinent of bowel when he passes. He said he would do it again. The extra 14 months gave him and us time to prepare and let go. Nothing was easy and I would not recommend this route for everyone. In fact, I would not recommend it for most PALS and CALS, but we made it work for as long as we could with no regrets. To God be the glory now and forever, Amen!

 

[Vincent]

Very sorry for your loss. Peace be with you.
Vincent

 

[kingsaustin]

Re: Terminal Wean from Ventilator

Hi Mattb. Amen! God knows what He does for He has a plan and His plan is the perfectly timed plan.

I am happy your dad has a renewed life in heaven with an able body that no longer hurts and the thought of him with loved ones for all eternity is literally beyond this world. My husband, Rick, is also in heaven now. He went home on March 3, 2015. He, too, had a trach, was on a vent, had hospice and his family (me and the kids) with him when he passed into eternal life. That being said, it's been a struggle for my selfish being. I miss him and so long to see and hear him. It's been very difficult in that we miss his physical presence here. His humor/wit, kindness, and love made me and our kids so happy and complete. He was the most giving, caring and compassionate person I have ever known. It mattered not whether he knew you or not, if you were in some sort of need and he knew about it he was going to do whatever he could to help you.

My saving grace is knowing God is with us and HE is the ONE that WAS, IS, and ALWAYS WILL BE and for that I am most grateful. I SO look forward to the day I am welcomed by my Rick and all my loved ones as they guide me to meet Christ Jesus our Savior .

Congratulations to your Dad for enduring his cross and completing his journey. And I commend and applaud you and family for all you did to comfort, love, and help in whatever way you did to ease your Dad's and his caregiver(s) journey.

 

[vickim]

Wishing you peace and comfort for you and your family during this time of grief.

 

[skipper66]

I'm so sorry to hear of your great loss. Praying for peace and comfort for your family.

 

[JimInVA]

Our condolences on your loss. Our best to you and your family.

Jim & Darcey

 

[affected]

I'm so sorry for your loss but thank you for sharing how well the trach withdrawal was handled.

 

[Janie H]

Thanks for all the information, God Bless you and your family.

Janie

 

[mattb]

Re: Terminal Wean from Ventilator

Hi Mattb. Amen! God knows what He does for He has a plan and His plan is the perfectly timed plan.

I am happy your dad has a renewed life in heaven with an able body that no longer hurts and the thought of him with loved ones for all eternity is literally beyond this world. My husband, Rick, is also in heaven now. He went home on March 3, 2015. He, too, had a trach, was on a vent, had hospice and his family (me and the kids) with him when he passed into eternal life. That being said, it's been a struggle for my selfish being. I miss him and so long to see and hear him. It's been very difficult in that we miss his physical presence here. His humor/wit, kindness, and love made me and our kids so happy and complete. He was the most giving, caring and compassionate person I have ever known. It mattered not whether he knew you or not, if you were in some sort of need and he knew about it he was going to do whatever he could to help you.

My saving grace is knowing God is with us and HE is the ONE that WAS, IS, and ALWAYS WILL BE and for that I am most grateful. I SO look forward to the day I am welcomed by my Rick and all my loved ones as they guide me to meet Christ Jesus our Savior .

Congratulations to your Dad for enduring his cross and completing his journey. And I commend and applaud you and family for all you did to comfort, love, and help in whatever way you did to ease your Dad's and his caregiver(s) journey.

Thank you for your condolences and for the Truth about everlasting life through our Savior Jesus Christ!

 

[anderkling]

May God bless you with peace during your time of mourning. One day you will be united with your Dad again in that land where all tears will be wiped away. May that blessed hope comfort you and your family.
- Charlene

 

[hjlindley]

Your dad is free now and he will be laughing, walking, talking in the next world. It sounds like your family was very brave for your dad and honored his wishes. I hope as the time goes by your days get brighter and there are more smiles. Remember him as he was not the way he left this earth.

 

[MaxEidswick]

> dad passed peacefully

our condolences and celebration for his peace!

 

[Augustmoon]

Matt
I stayed up late last night reading the posts you made about your Dad and the vent. I got up this morning, had a cup of coffee, and read your post about your father's passing. I'm so sorry for your loss. It is a month now- and I hope you read my post.
My dad, aged 78, was diagnosed with ALS in August 2014. He was totally stooped over, experiencing weakness,- also had left foot drop. The diagnosis was made in 2 weeks- fairly fast, like your father. Within in few months, my dad went from walking fairly normally, doing chores, climbing stairs- to becoming breathless and unable to use his right hand as well as he used to, and dependent on a rolling walker because he was so bent over and out of breath. He also has lost about 40 pounds in 9 months, but he turned down the feeding tube.
Now he uses a BiPap at night, and a few times during the day. A power chair has been ordered for him, and he has a loaner chair. At his visit to his neurologist yesterday, a ventilator was suggested. He has an appt with a pulmonologist next month- but, apparently- he is first on the cancellation list.
Something you said in one of your descriptive scenario posts- really struck me- that if you don't like the care at your ALS clinic- go to another one. This is so true- but hard to do. My parents are snowbirds- half the year in Delaware, and the other half in the Florida Keys. Late last spring, experiencing the onset of symptoms- my parents stayed in the Key Largo until my dad got his diagnosis through a Key Largo neurologist, which was confirmed by the lead neurologist at the Miami ALS clinic. If you have ever been to the Keys- you know that time slows down- things happen on Keys time. Luckily, the neurologist down there was on top of her game- she wasted no time.
So after the diagnosis, my parents drive north, and market and sell their seaside Delaware home. They go to an ALS clinic in Salisbury Md for 5 months. This clinic is the warmest fuzziest environment one could ever hope for- in such a dire situation. The staff makes house calls. They send out the pastoral care worker- she is a hoot! The respitory therapist comes by several times. The nurse who runs the clinic is on my moms speed dial- and she calls her back very time. My parents go to support meetings- they meet other PALS, they get gadgets that help my dad with daily living. We are given as many books as we can carry, lunch, snacks, drinks. But my parents need to sell the house. It is large, and there are too many stairs, and way too much maintenance. And they need the money. The house sells- it is excruciating for my dad to empty the house of his lifelong personal effects as the disease bears down on him. But there are 4 of us siblings- and we all pitch in.

Finally, they are off to Key Largo- to live in their tiny one level home- 1200 miles away from family, but- in a tight community with many real friends. They plan to continue seeing the Keys neurologist who made the diagnosis, their own primary care doc- a gerantologist, who also happens to run the local nursing home and hospice chapter. And they plan to go to the Miami ALS clinic. But here is where things start to unravel. I make travel plans so that I can accompany my parents to the first Miami ALS clinic.
The Miami clinic- though technically a center of excellence, is not user friendly. It is urban and very clinical. We don't know where to park- or where to even go in. No one greets us, there is not a sip of water offered, nary a crumb. No directions are given as to a vending machine. We are there for over 4 hours. We don't even know when to leave- there was no closure. A cleaning person comes in, and we are still sitting in the small room- waiting for someone to tell us what to do next. When the neurologist finally came in- he didn't think my Dad had deteriorated much in 6 months since he had last seen him- just going by notes- but my dad got much worse. He struggles to breathe. He can not stand up straight. My dad walks a little bit for the neurologist- but since he had been sitting for 3 hours before the dr came in, my dad wasn't as exhausted as usual. The respiratory therapist was down right rude, never introduced himself- and acted like it was an imposition to look over the Trilogy machine my parents had from a Delaware Company and lugged into the clinic- as had been requested by the nurse co-ordinator of the ALS clinic-who, incidentally had no active role that day at the Miami clinic. After a quick breathing test by the therapist- no pulmonologist present- the neurologist director said my Dad didn't even need the BiPap. Instead- he writes a script for Zoloft. Absolutely clueless. When we ask about getting a power chair, an appointment is given for 2 months ahead. Hello? The only support group is Spanish speaking-- my parents do not speak Spanish. We drive home- confused. Phone calls are not returned. My poor mother gets in the middle of 2 rival companies trying to sell her a power chair, and she feels torn and STRESSED! No house calls are paid- obviously. The day of the clinic- the nutritionist and the occupational therapist are missing- the 2 people my dad needed to see the most! We notice a lot of averted eyes as we ask questions- as though we are supposed to know how things go, and accept a sub standard level of care. I get really angry and call the director of the ALS foundation of Florida- and she actually returns my call the next day! Slowly things start to improve. A power chair shows up 2 weeks after my call, the new BiPAp shows up too- because we had to return the one from Delaware.
Anyway, in this situation, my parents can not switch ALS clinics-the other one is in Fort Meyers- 4 hours away. Obviously, my parents chose to live way down in the Keys- so they take what they can, but Miami is only 60 miles away- but 6000 times less friendly than the ALS clinic in Maryland.
So this wasn't a quick reply! I guess what I'm asking is why the ALS clinics are so different- yet they fall under the jurisdiction of the ALS/MDS assoc. I'm also worried about my parents being so far away- wondering how long they will make it without help. Wondering if they are better off moving back to Delaware to be around family, and the friendlier ALS clinic.

 

[lgelb]

Dear Augustmoon,

It is easier to respond to posts like yours if you would kindly start a new thread each time you have a new question or concern, which also helps keep threads clear, so, for example, Matt can more clearly discern the well-deserved words of comfort that have come his way.

First, I'm very sorry to hear about your dad. My husband Larry was diagnosed when we lived in Wilmington, so I know where Hockessin and Salisbury are.

The answer to your question is simple. They want to stay in the Keys with their friends, and that's a desirable location w/ lots of elderly residents so I've no doubt they can find home help if the time comes that they need it. It's a lot warmer in FL than DE when contending with a power chair (one major reason we moved from DE to WA). You also mention hospice and a nursing home in the continuum of care available. So...

They don't need to go to the Miami ALS clinic. There is no reason for them to be exhausted and frustrated there, when there is a fatal illness to deal with. They have a neuro and PCP they like. Those two between them can order anything they need, and do the progression exams that ALS clinics do (better ones, likely). I imagine they could also refer them to a local pulmonologist (this may've happened already, from what you write?) who in turn can recommend a DME locally for any further respiratory needs, like a suction machine or vent if they go that route (I would read threads on here about that very serious choice). The power chair order was the one item that might have challenged the two of them somewhat, but from what you say, it is on order.

The MDA's clinic's staff don't report to them, nor do the ALSA's. It's just an affiliation based on things like money, politics and territory. It is not a guarantee of quality control. My husband stopped going to the ALS clinic years before he died, and others here have made similar choices. If your parents were back in Salisbury, we'd say, "Go as often as it helps." In Miami, it doesn't. There's no reason to go.

This is not the first "night and day" tale of two clinics I have heard, and I feel that newbies should understand that P/CALS have to be in the driver's seat, to have the life and death you want, apart from the disease. No one else can do that for you. So hang with the people who help you and leave those who don't alone. This is one of these times that we say, "Life is too short."

 

[Green Queen]

Matthew, I will be honest, sending my condolences to you and your loved ones does seem a bit strange as I've never corresponded with you before. Be sure my words are sincere.
Many people don't like using the word 'die' but without it there is no eternal life. Praise God there is no more suffering for your dear dad. May the Lord remain in your hearts, keep you strong and guide you with grace as the coming weeks create new daily routines for you all.
Your dad is finally free as he takes his place beside Our Father.
God bless, Janelle x