Oh my goodness. I can sense your despair and fear and certainly understand it. These strokes are particularly hard to take when they come to younger people with young children. I, too, have often wondered how one person can endure so much and still live. It sounds like you both are taking things as they come and trying to make the best decision in that moment. There is little we can do but take one step at a time. Listen to your best instincts and do what seems best. None of us has a crystal ball to see into the future so we can only try to make decisions as they present themselves. I do wonder whether you might benefit from speaking with an elder law attorney. My conversation with one was so very helpful. They will help you take a look at your finances with a long term perspective and help you make decisions that will maximize your benefits. They know the state laws around long term care costs and Medicaid eligibility, etc. They can help you with the financial preparation and give you a sense of direction. Preparing to be alone, if and when necessary, is the tougher part. Many of us are on that journey. Perhaps we can lift each other up in the process by sharing it here. You are in my thoughts and prayers. ~~Donna

Broken- I liked all of Donna's advice, but especially liked her idea of your seeing an eldercare attorney because doing so can go a long way in reducing  your anxiety.

   2 other things: At their ages, your children don't have the ability to fully understand , so, my advice is to wait until they ask you questions, and answer only the question they pose, without volunteering any additional info, as this will only confuse them more. Ex.: Child asks,"When's Daddy coming home?" You say, "When the dr. says he can." Don't volunteer that he has an aspiration pneumonia unless they ask because they will have no clue what you're talking about, which will confuse and scare them even more. Stick to short, easy-to-understand, honest answers.

 My question to you is that if he keeps aspirating, is a peg being considered? It may be a good option. Best, Becky 

I am just so sorry. Yes, a nightmare to be sure. I agree with Donna and Becky. I would also talk to his Speech Therapist and ask for a swallow evaluation. Why is he aspirating?

Please try to go easy and get some rest. Update us when you can and know you are in my thoughts and prayers. Debbie

I know there are different levels of dysphagia, like 4 levels, maybe.   Bob was sent home on the first or second level with a paper print out saying what he could eat and describing the types of food not to give him (like soup with stuff in it, because it was a mix of liquid and solid and he wouldn't be able to control it in his mouth....   like no small cereals for same reason - so we went to oatmeal)    He did well with casseroles of all kinds, mashed potatoes, ravioli, oatmeal, scrambled eggs, mac & cheese, sandwich spread (bologna version, like ham salad, but not so salty) spread thinly on soft bread, applesauce.

Donna,

Thank you so much, I will certainly look into the elder law attorney. I never had an idea that such a thing existed so this will help tremendously.

Becky,

I have made the decision to not tell the boys anything. I can't even begin to prepare them and I have been advised by my son's doctor that when the time does come that I need to be honest with them, speak plainly so they do not misconstrue what I am saying to them.

As for the PEG. He already has one in place and is currently on thin liquids and a mechanical soft diet. He adamantly refuses to have nutrients provided via his PEG. Even after speaking to speech that I wanted them to thicken his liquids they wont and still cleared him for thin. I would like to have him 1:1 during meals but again, not enough staff so this can not be accomplished. The other key issue is if he becomes ill and vomits. There is nothing we can do to prevent aspiration during this process which does not make me feel comfortable at all.

Debbie,

While eating he is aspirating for numerous reasons: he wont tuck, he wont slow down, he gulps, he drinks from a straw knowing that he has issues with the splash and the topper is that he refuses to sit up properly while eating or remain sitting up afterwards. He is still so creative but the logical side to do what needs to be done to take care of himself or at least the thought process to follow the rules to do so is gone.

Sandy,

Thank you, those are all great options and I will be sure to use those when he comes back home again.

Thank you all for your comments, your insight is very helpful to me on this journey.

Bob used to have a problem with vomiting, and he wasn't ill.    He could be sitting there eating and suddenly throw up right into his plate.  He also would choke on his coffee if he was laid back in his chair relaxing. What I'm doing to prevent this, is to place a pillow behind him in his wheelchair so that he is upright and can't lounge backward.    I also have to watch him from just eating and no drinking.   He is perfectly willing to choke down an entire meal and not touch his water at all.   So, every 3 bites I say, 'take a small drink now'.   He vomited because he would just keep eating until it stacked up in his throat and gagged him!   So, he hasn't done either since I put the pillow behind him and watch him eat, nonchalantly.    Before his stroke, I used to get him to eat things he didn't like.   But now, he knows that if he feels a little yucky about something to stop eating because that, too, can bring on the gag reflex, for him.

PS - I meant to comment on the straw thing, his therapists said to be sure no straws, because it delivers the drink further back in the mouth right away and makes it easier to choke.    I have been surprised to see other people say their therapists recommended straws!    I can see where it might help a droopy mouth syndrome, but droopy mouth don't choke you, where the straw drinking would.

PSS - if I used yogurt, it would be the custard style, as the thinner style might hang around in the throat.

Sandy, you are awesome!  What a great caregiver and source of knowledge and information for me.  Thank you so very much and when he comes home I will make sure I do these things. I do stop Kevin while eating to drink but was always curious about the vomiting. The rehab that he was just at was under the impression that he my have polyps. He went into the hospital so we missed that appointment and will need to reschedule once he is back home again.

Thank you again for sharing, you are very insightful.

Shannon