As mentioned, we moved my dad from a MC to a SNF. I think this SNF is much much better and should have put him in in the first place. But even they get some things wrong. The first couple days they were giving him honey thick liquids, which he spit out, versus the nectar thick. The dietician claimed the orders said honey thick, but after talking to hospice, we confirmed it was nectar thick. Based on the advice of the hospice nurse, we have told the SNF we want my dad waken for meals. We do not want him to sleep through. Yet my brother was there earlier and once again they said if he is sleeping they let him sleep. Maybe there are good points for that. But there are two issues here. 1. What is better? I would think patients need to eat at times, and the hospice nurse said that. She said have him waken, then if he doesn't eat, don't force him but at least wake him up. I suppose the opposing view is if they are sleeping they are sort of at peace, and why wake him up and agitate him. They say if he is hungry he will wake up. 2. The other issue more basic. Despite what may or may not be better, I would assume it is ultimately up to the family. I have instructed this to them a couple times yet the word does not get through to all shifts. I know that has its limits. Like if we say we want him to drink coca cola, they can't do that. But the way I understood it from hospice was it's up to us. And the hospice nurse, who we have come to trust more than anyone, has recommended waking up for meals. Not forcing food down, but at least wake them up. My dad is somewhere in stage 7. I am assuming and therefore has limited life ahead of him in any event. But I would like him to eat to keep strength up as long as possible. Also, just feel these care facilities don't get their communications out like they should. Its like we have to train each new shift as they come on as our instructions are not passed on to them.
Can your dad still feed himself? Is dad bed bound?
We also were advised to let him sleep; if he awoke, then he could be fed. If not, there was the next meal. He was already seguing into sleeping more and eating less day by day.
What you can do is observe his sleep patterns to see if there's a schedule, and ask that his meals be brought at the average time he awakes.
Speaking from experience, this is much better for the patient than waking up someone who really needs his sleep. It shouldn't be that difficult to refrigerate his meals and reheat them to match his sleeping and wakening cycle.
It was also explained to me that eating can tire out someone on hospice, resulting in longer sleep times after eating. It's so easy for us that eating is nourishing, but after seeing my father struggle to eat, I realized how much effort he expended, and that contributed to his fatigue.
If you want your father to drink cola, and it hasn't been thickened, there are some different issues, although it may already have been factored in, depending on his DNR status. This is something we also went through.
If in a hospital a dysphagia patient drinks unthickened liquids, and is full code, the facility is obligated to resuscitate him if he codes. His eating would not be in compliance with hospital policies.
The last months of Dad's life were complicated, so I don't remember for sure if we discussed a no code status in conjunction with non compliance with a dysphagia diet, but it's possible that this could be the reason why they don't want him to drink something like coke, which really is an unhealthy drink for anyone anyway.
If he's not a full code, and wants to drink coke, typically the family must be made aware that he could choke, aspirate, and/or possibly develop aspiration pneumonia or have a severe reaction (cyanosis) from the choking.
Don’t panic, it’s early and you will get this straightened out.
I realized there was concern on the staff's part whether or not progress would be made by the earlier date, so setting the care conference for later gave the therapists more time to evaluate my father's progress, and to make a decision on whether or not he could remain on Medicare or segue into Palliative Care or hospice.
I thought was a good approach, i.e., to offer him more time for therapy before a decision was made.
I recall something else, then when he was first awakened to eat, he was so tired that he choked more easily and ate less, then often fell asleep while attempting to eat.
THAT took us about 6 months to understand.
Since your dad is on Hospice, there are a lot of players, each with their own opinion. It is REALLY helpful to get them all in the same room, at least by phone and discuss issues like "do we wake him for meals" and "should he be put to bed in the afternoon for a nap".
The most satisfactory yet infuriating care meeting we had for mom was one in which we got everyone, including the potential hospice organization nurse in the same room and I mentioned that mom had a collapsed lung.
Everyone started and said "who told you THAT?" (Um, her nurse, on the phone, yesterday morning).
No, Mom did NOT have a collapsed lung. But if I hadn't gotten everyone together, we never would have known that.
Ask, nay DEMAND and care meeting this week. Make sure the NH doc has examined dad beforehand so there's not that excuse. Come out of this meeting with a coherent, unified plan for dad's care.
Next day, ask the nurse on each shift to tell you what the care notes say and make sure that they line up with what you all agreed to.
Do the staff not read the notes? (often no, they haven't time)
Do they not agree with the notes? (sometimes. What has been agreed in theory may not be practical or may not feel right when you're standing in front of a sleepy elder trying to persuade him yes he DOES want his lukewarm chicken soup...)
Have they got the right resident? (don't start me..)
She entered a SNF for rehab, not mobile and with advancing Vascular Dementia October 2013. We all figured she had about 6 weeks left.
She died this past August, 2017.
Be prepared for the long haul. Don't burn yourself out.
((HUGS))
The nurses (whom I trusted and relied on very much), told me that as death draws closer, the vital organs shut down and focus on the essentials, similar to when someone is facing freezing temperatures, and the body needs to protect those organs it needs the most.
Dad's energy at that time was focused just on breathing, even with oxygen on. Anything else, including eating, and especially speaking, drew away from the basic breathing.
I sometimes think there's an analogy in a sinking ship, although that's not a particularly pleasant contemplation. Sometimes just to stay afloat long enough for a rescue, you have to scuttle what else is on board and lighten the load on the boat.
That's what happens when a person segues into the last stage of life.
There is nothing you could have done at that point. One meal wouldn't have made a difference, and as CWillie notes, he had reached the point of not being able to eat.
To have taken a position that encouraged him to eat would have been not only fruitless, but detrimental.
So, congratulate yourself on choosing the right path, at the right time.
And think rather as you've written elsewhere - he's out of discomfort, pain, anxiety, and is at peace.
You took the best care of him possible, right up to the end. I hope you feel proud of that.
Eating did not bring about his death. His reaction showed how close he was to death at that point.
It was the natural progression of the body shutting down.
You did nothing wrong.
As far as sleeping through meals, my dad is in this stage at this point and he is roused enough to see if he wants to get up for meals, and if he is not willing, they allow him to sleep. Important point no one else has mentioned though is they save his meal for him and at some point they reheat it and offer it to him again