My 68 year old father fell and broke his hip last Wednesday. He had a partial replacement the day after. He suffers from Lewy Body Dementia, Parkinsons and Celiac disease. He is 6.2 and was maybe 125 lbs when he fell. His overall health has been declining this past year and has lost weight within the last few months. The day after surgery they got him to eat and he seemed very groggy and confused due to the anesthesia. The next 2 days he seemed more confused and agitated. They ended up putting him on a dysphagia diet because he was having a hard time swallowing. He has had issues with this for awhile. He has always been an extremely picky eater but the LBD has made it worse the last year. Over the last few days he has refused much of anything. A few bites of pudding here, a few bites of ice cream there. He flat out refused mashed potatoes, applesauce etc. I spoke to his doctor and she asked "how aggressive" we want to be with him. He has been extremely agitated and yelling alot. As hard as it is for me, I made the decision to put him into hospice care. Per his living will, he does not want to be kept alive per artificial means. His doctor basically said his body is in feed me mode and his nutrient level (not sure what it's called) is 2.2. I feel lost. I don't want my Dad to die but he is refusing to eat himself. He has not been up out of the bed since the fall. He refuses everything and fights with everyone and says he can't do it. He is cognizant at times and then other times he's yelling stuff that doesn't make since. I don't want to live with regret when it comes to putting him hospice but even when we did my Dad's documents he said he didn't want artificial means of being kept alive. To me a feeding tube would be considered artificial and his living will States he doesn't want hydration or nutrients. He says he's hungry but refuses to eat much. He also failed 2 swallow tests and is coughing alot after eating or drinking anything. I would just like some reassurance I'm doing the right thing. His LBD wasn't terrible. He knows who we are etc he just wasn't able to live alone anymore. His doctor said rehab was not an option for him. He was also seeing psych in the hospital and they tried different meds to help manage his aggression but they were not working.
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Your dad is disoriented and possibly delusuonal due to anesthesia, surgery and being in an unfamiliar place.
Let him eat what he wants--ice cream, thickened shakes, puddings. Get them to order protein powder added.
He can come off hospice if he starts to improve.
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I was by his side when he took his last few breaths. This is the HARDEST thing I have ever had to do .
Please be kind to yourself as you process the grief of losing your dad to such terrible diseases.
Hospice has changed and isn't an indicator that a patient is about to die. They will make sure your father is clean and comfortable. And they will be available to help you as well. Hospice staff know very well the stress and second-guessing a family member goes through when they finally decide to bring them on board. They can help you.
In your post you mentioned your father has LBD and Parkinson's. He has been failing for a while. And on some level he seems to know that.
You said you did not want to regret your decision down the road. Remember, it was HIS decision, not yours. As a loving daughter you have taken the actions HE wanted. There is nothing here to regret.
Best of luck to you.
Her issue is whether to consent to artificial feeding on his behalf. Her father has given directions that he is not to be kept alive by artificial means; but before she therefore rules it out she should also ask whether artificial nutrition in the short-term, with a view to reversing a PEG in due course (which certainly can be done), could reasonably be expected to deliver a major and potentially lasting improvement in his physical condition and his quality of life. If so, this becomes not about "keeping him alive," but about offering him appropriate treatment.
So I'd ask. If the chances aren't good enough she can still decide against it.
" You" have to be in the place of working with Hospice every step of the way. "Refusal to eat" can be normal in certain circumstances. But your Hospice nurses and Medical Doctor should be communicating expectations to you.
My FIL had no feeding tube at any point. I fed him by syringes. Then he refused all intake the last 5 days of his life. Per his wishes. His wishes were " pallative and then comfort care".
I feel completing " unfinished business".... telling him it's okay to go home was important. That his son, my husband, will love and take care of mom and he need not worry about her. His wife released him to go home. He passed away 7 hours later.
Our goal was to ensure he was comfortable. The last 2 years he was miserable.
When preparing a living will it is important to really have a deep conversation. If someone says they don't want artificial means to sustain their life, ask how they feel about those means on a temporary basis. If there is a decent chance for recovery, a temporary feeding tube or ventilator or other method may be acceptable to them. It's an important discussion to have. And a tough one.
Sadly, Salass, from your post it doesn't appear your father has a decent chance of recovery. Follow his wishes and don't have regrets. You are a wonderful daughter!
Love,
Llamalover47
God bless him for making his wishes known and taking all of that burden off of you. That is one of the greatest gifts we can give to our loved ones. He did well, be sure and tell him.
May The Lord give you strength, peace and comfort during this difficult time. May HE help your dad pass peacefully and be with him.
He is very blessed to have a daughter that is willing to honor his desires for his end of life. God bless you!
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