no family support

Lgw

My DH has Vascular Dementia (diagnosed Mixed) and now Aspirational Pneumonia. After 1 week at the hospital, and 3 weeks at Rehab my DH will return home.  Knowing that he will probably have another bout of this I talked to him on whether he would want to return to the hospital or die at home.  He voiced to me that he would rather die at home.  This is along the same lines that he decided  to have a DNR at the beginning of this  nightmare. I thought I should warn the family. Big mistake.  The family acted like I want to kill him.  They are not visiting him 1-2 times a day, cleaning him, washing sheets daily, and the bathroom several times a day.  I'm the one who has researched this new problem and the bleak outlook on his life. I am the one wondering if I can follow through on his wished.  I won't look back with regret about not visiting him.  Anyway, I started out asking for advice, but I guess I just wanted to vent.  Must be nice to live away from this nightmare.

Pat6177

Lgw, it takes a lot of maturity to have the end of life conversation that you and your DH had and it will take a lot of courage to follow through. I’m sorry your family isn’t mature enough to hear about your DH’s wishes and that they are too full of fear to provide support to you or to your DH. Thank goodness for this forum. I do hope that when the time comes, you will call in hospice. They will support you as will the folks here on the forum. Poor substitute for family but…

My DH is in early moderate stage and has been very clear that he wants to be a DNR and hopes he doesn’t live more than another couple of years. Even though he’s been so clear, I worry that I’ll waver at the end. Only time will tell.

harshedbuzz

I am sorry you are not feeling understood or supported.

My dad died from aspirational pneumonia. It was not an unpleasant passing for him to die in his own bed at the MCF for which I am grateful.

I would bring on hospice if you haven't already.

HB

Ed1937

I fully agree with HB. Get hospice involved, if possible. You want to keep him comfortable. I'm sorry.

Lgw

I will contact Hospice as soon as he comes home and I've talked to the Home Health Care nurse.  I am not happy today because the Rehab put him back on liquids that were not thickened.  Not only that he was thirsty and no button to call for help.

MaryG123

Could he have hospice in rehab?

Lgw

I'm supposed to hear from his therapists on Monday.  I will include that with my questions.  Thanks.

Lgw

The nurse and physical therapist were all on board when I asked them about Hospice.  Of course Hospice was closed today because it is a holiday so I will go by there 1st thing in the morning.  Rehab is sending him home in 1 week so I have that much time to get Hospice done and a wheelchair sent to me.  Rehab is supposed to be arranging the wheelchair.. This is all so overwhelming.

eaglemom

Yes, it is overwhelming. Take a step back and get a deep breath. You can only do one thing at a time. Yes, I know we all like to think we can do 57 things at once, but alas, we can't.

My DH just had a brief stint in the hospital from aspiration pneumonia. Pretty scary indeed, but I also learned so much. Thankfully eating solids wasn't an issue, its drinking the liquids. Your DH indeed needs to have thickener. Why that didn't happen would have upset me also.

In my DH's case after he was released from the hospital he had speech therapy 3x's a week for 4 months. During that time very slowly he was able to lessen the amount of thickener needed. We also learned there are things he simply can't have now. Grapes, strawberries, oranges & tomatoes are ones that quickly come to mind. It's simply another learning curve for you.

You will get a routine and with Hospice on board that will be helpful also. As an FYI - not all thickeners are the same. You might try several before you find one that he doesn't really mind.

eagle

ImMaggieMae

Eaglemom, what did the speech therapy have to do with aspiration pneumonia and swallowing?  What did it involve? Does the therapy actually have more to do with swallowing rather than speech? Why were those particular fruits a problem? My DH didn’t have pneumonia but he could not swallow many foods, particularly meats and dry foods like bread, 8 or 9 months ago. Speech therapy was never suggested. But he is now eating most foods other than hard things like pizza crust without any problem as long as he chews them well. He ate a burger and fries last week, something I would have though impossible a few months ago.

Boebet

I learned years ago to never expect any help, that way if it does happen it's a welcome surprise, not a "what took you so long" less stress for everyone especially the care taker.

Lgw

I know that a speech therapist does the swallow study.

Lgw

I really missed Hospice this last week.  DH really needs a shower and I can't help him myself.

eaglemom

Somehow I missed this when looking over the boards. The speech therapy worked on repetition on how to properly swallow. To swallow then immediately another swallow - its called the 'hard and fast.' That way when your DH takes a drink the first swallow is to move or clear the food and the second swallow is to make sure the first swallow did indeed clear the food in the mouth.

The grapes, strawberries, oranges, tomatoes all are pretty much solids until you bite them. They then go from a solid to a solid & a liquid, two very different things to swallow. The juices from them seem to trip up my DH for some reason. The speech therapist said that is very common. Your expecting a solid to swallow & all of a sudden its a liquid and frankly their brains simply don't shift gears that quickly. And what happens is they aspirate.

We have throat exercise we should practice more often. I need to do that because the throat is a muscle and keeping those muscles strong also helps prevent an aspiration.

The only time my DH uses a thicken now is in his water beside the bed. He likes to have a sip or two during the night & clear water when he's not awake is simply too risky. So we thicken that water and he's not had a problem.

One other thing I failed to mention is dental hygiene. If you can have your DH brush, rinse and floss (kind of a crazy ask I know) after each meal and bedtime that will also lessen the germs in the mouth if/when there is an aspiration. I figure as caregivers if we do the best we can that's good enough! But do get the teeth brushed as much as possible.

eagle