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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.

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Karsten, I am sorry for your loss. I didn't realize when I posted my comments that your dad had passed. Your experience is quite similar to mine. Prayers to you at this difficult time. Just know that you did all you could with love and diligence.
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With my mom the staff would allow us to give her liquids but they would not give any unthickend liquids themselves because of the liability issues. 

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
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My mother was living in a SNF and was on hospice services from an outside organization. Both entities did their best concerning mom's care, but they didn't always see "eye-to-eye." The main issues were around food and oxygen supplementation. Hospice basically thought mom should be able to eat what she wanted at regular meal times. There is the danger of aspiration pneumonia, which is important to note because your loved one is on hospice. It is my understanding that aspiration pneumonia will likely make it impossible for you loved one to take medication orally and hospice doesn't introduce IV medications. So aspirating food may end their life, but so will not eating because one sleeps through meals. The first is a scenario that occurs suddenly and might challenge your commitment to hospice. If your loved one was at home, I suspect that hospice would rule and you would be fine with that. Hospice services in a SNF isn't as common and my experience is there are slight differences in approach that need to be thoughtfully reconciled. How? Compromise. If dad sleeps through breakfast, make sure he is woken up and fed lunch. In mom's case, I wanted to know that she was getting fed (if she wanted it) so I scheduled her hospice CNA to be with her at lunchtime. You get the idea. Get that care plan meeting as soon as possible, and remember compromise. They all wish the best for your loved one.
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So sorry, ❤️you were and still are amazing and so caring ..Hugs and peace Karsten
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Karsten, dear, don’t beat yourself  up nor feel that anything you did contributed to your father’s death. You did not.
It was the natural progression of the body shutting down.
You did nothing wrong.
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Karsten, ((HUGS)), I am so sorry for your loss. Please don't blame yourself, as cwillie said, it just meant his body was shutting down. ((HUGS))
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Sometimes our loved ones sleep through meals when they are in congestive heart failure they are very tired and usual have little or know appetite look for other signs such as swelling don't force feed just give some ensure it is very difficult I know my late grandmother went through that stage in a nursing home and she died 20 years ago of congestive heart failure.
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Oh, Karsten, I'm so sorry to hear of your loss. Cwillie's response is spot-on. If you are a believer, you know that he is now with the Lord. Please know that you did all that you could and loved him til the end.
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Condolences on your father's death.

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.
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Karsten, may I offer hopefully consoling advice on the issue of eating? As my father declined, he too ate less and less, not because he didn't want to, or because the meals weren't served at the times he was awake, but because he didn't have the strength to eat and b/c he was seguing into the latter stages of end of life.

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.
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Karsten, don't try and second guess yourself. Even though we hope we'll recognize the signs it doesn't always work that way. You had no way of knowing what would happen and I'm sure you didn't cause it. Sometimes they just fade away and sometimes it's quite sudden. My mom was a healthy eater up until 24 hours before she died. Up and walking around too. And then gone in what was likely just a few hours. I'm sorry for your loss, but please don't feel that your actions had anything to do with it. And certainly they were based on wanting the best for him.
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Karsten, I'm sure that his not eating wasn't the cause of his death but a symptom that he was transitioning, and the fact that he threw up just means that his body wasn't able to get any sustenance from food any more. They weren't holding him down and forcing him to eat, he opened his mouth and ate - he may even have derived some pleasure from his last meal. Stop beating yourself up over this.
((HUGS))
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Yes, I am afraid I blew it on this one. We got to NS yesterday midday and they had not been planning to feed him lunch. They said he ate well at breakfast. Based on our direction they woke him and tried to feed him and he threw up setting off a chain of events of laborious breating, etc, and died in the evening.
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If father is now palliative ( end of life) he should not be woken up to feed. I agree it could be kept in fridge & offered when he wakes. He should not e forced to do anything but just made comfortable & pain free. The body organs begins to shut down towards the end, so hunger naturally diminishes. Forcing food or drink at this stage can cause more problems ( RN, palliative care)
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I am satisfied that my Mom gets a good breakfast, sleeps through lunch, then eats a good early dinner at 4:30. She is not losing weight or I would insist on lunch.
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cwillie. That is my concern. Though the did tell me that last night after my dad eventually did wake up they heated up my dads food and he ate pretty well. While they scheduled a care conference for a couple weeks out, tomorrow I will be demanding one right away. Overall, however, the current SNF is so good compared to where he was before. I worry my decision to have him at the MC before took time off him, not to mention the added trip stressed him out. Wish I would have had him at this SNF to begin with. But still. I have to keep my eye on them.
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Perhaps it is different where you are but I will tell you something I have observed in the year my mother has been in a nursing home - food is not available between meals and people who consistently don't eat do not live very long.
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Karsten, check your PMs in a few minutes.
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Karsten, my mom had a stroke on July 1, 2013. She fell and broke her hip in a lovely AL in late September 2013. She had surgery that we thought she would not survive on what would have been my dad's 90th birthday in late September.

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.
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great advice Barb. I have had the same frustrations in talking to one shift nurse then finding out that info did not get relayed to another shift nurse. I am going to ask for some sort of meeting tomorrow. Of course I am in the mode of wondering, rightly or wrongly, whether my dad will even be around the next day. I have talked to others who told me they always felt that way only to have LO last many weeks, months. Always live in fear of a phone call from SNF. I should not complain. Regardless of the route, pretty much everyone has to deal with a loss of a parent and my dad is 93, didn't even get diagnosed until almost 91 and had a good life. Though it seems the last couple of months have gone downhill fast.
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Karsten, I feel for you on the having to be like a broken record point. But there's no way round it, you just have to keep on keeping on and try to hold on to your sense of humour.

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..)
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Karsten, my point is that you need to have a care meeting so that the orders in Dad's charts are changed. Talking to each shift results in THAT shift complying with what you want. It does NOT mean that it's changed going forward. For THAT to change, you need for the Doc, DON or someone in authority to change the orders in the chart. The day to day staff are not authorized to make those kind of changes.

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.
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Karsten, no burden; ask all you want. I always feel privileged when I can share personal experience that might help someone else. I think the others here feel the same way.
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Barb, by the way, I was just joking about the coke :). My point was that an SNF should not do WHATEVER a family wants. The SNF has a responsibility to do whats right and healthy. But I guess the question was on things like sleeping versus eating, can the family direct that? (plan to discuss this more with hospice nurse tomorrow, they are on duty all the time of course, but my dads own Case Manager hospice nurse works regular schedule. I read Rocket directed that her mom be dressed and at meals unless having a real bad day. Even though they suggested care conference in mid may (I guess reasoning is they want to evaluate dad before meeting) I am going to request meeting this week, even if just with head nurse. AS said, right now it seems word is not getting from shift nurse to shift nurse. However, also as said, this SNF is fifty times better than the MC he left. Garden mentioned her dad would choke if he ate while too tired. That is something to consider I am sure. It seems like the Barb, Garden, Rocket trio are sort of my online hospice. I guess I should not burden this system so much!
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Karsten, my approach was to decide if I felt the advice to let my father sleep was realistic, and legitimate, then I agreed to let him sleep through meals. If I felt otherwise, I would have expressed that concern, and if necessary, gone to the unit nurse or DON to ensure that it happened.

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.
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Thanks for the good advice from everyone. I am not against the idea of letting him sleep through meals., but the hospice nurse suggested he be woken up. Also, the other separate issue is who decides? If the family were into this case believe it is best to be woken up for meals, even if that is not the wisest course, whose decision is it?
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Rocket's post reminded me of another issue in our recent experience. The care conference wasn't set for a week after admission as was the conference for the previous admission, but was set for more like a week and a half.

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.
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I realize that the move to the SNF was very recent, but you should ask for a Care Plan meeting asap. It may have been more informal and rushed through in the hubbub of moving in. As I remember Moms 1st one happened bedside on day 1 instead of in a formal meeting. The subsequent ones are more formal and quarterly with Floor nurse supervisor, social worker, dietitian and therapy. Your wishes regarding getting up for meals and other issues like bathing/hair care are documented here and all shifts are in the loop. I have even specified that Mom receives Sleepytime tea at night as part of the care plan. All the protocols for her fall prevention are documented in the care plan. Right from the getgo I wanted Mom up and dressed in the morning and at all meals. Only if she is having one of her “very bad” days will the nurse tell the aids to let her sleep in the morning and even then the nurse will personally try to give her an Ensure with ice cream while she’s in bed.
Don’t panic, it’s early and you will get this straightened out.
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Karsten, I'm going to take gentle issue with waking someone for meals, especially someone on hospice. We went through that with my father. Sometimes sleep becomes more elusive as it segues into sleeping much, much more. Being awaken to eat disrupts the sleep pattern.

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.
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yes, a care meeting set up in three weeks though I am pushing for one sooner He is in bed or wheel chair, he ate great last night at table. But he needs to be fed.
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