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.
When a person refuses to eat, they are deciding to die. They are ready. Respect that he had a living will and he wanted this, even though the process of the dying is hard to see.
Allow yourself time to grieve, but do not let guilt feelings get in with it.
That his passing was difficult is what is troubling you right now, and second-guessing what else you could have done, but each decision you made, you believed to be the best one at that time. You did an excellent job of loving your dad. That is very clear.
I'm so sorry you're missing your dad now, but eventually, you'll remember less about his final difficult days and will remember the things about him that made you love him so much. Peace to you.
So sorry for your loss and the difficult passing of your father.
You were doing all the right things available to help him, including hospice.
It is unfortunate that he can no longer be with you.
You said he went to be with God this morning. That can bring you comfort in times you are missing him. Right now, you could be in shock, after all that has happened medically, but there is no guilt to be had.
Love,
Llamalover47
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.
They will use meds to keep him comfortable but not treat the disease process. For example my brother has a brain tumor and gets anti-seizure meds to prevent agitation--so he's more comfortable. Your dad has a lot going against him, that's for sure. But I would take comfort in knowing you are honoring your dad's wishes. You are thinking through everything with his wishes in mind, not yours. You are so fortunate that he told you what he wanted, so many people don't. If you haven't placed him in a hospice yet, check out the Medicare website. They rate them, not by stars but percentages of many criteria. Find one that is better than the national average. Good luck!
My dad was in his late 70s, very, very ill from sepsis, and had dysphagia and aspiration concerns when a G-tube was put in. He had very little QOL for years before that and even less since that happened. But after 6 months, the G-tube was removed, he regained ability to swallow through therapy, and that was 8 years ago. My dad also flat out refused any DNR measures so I didn't have to consider alternatives. If your dad's living will says "no hydration/nutrients," then I guess you have your answer for your situation. I still think starving the body is not the right way for anyone to go, unless they are in active decline in the weeks before death.
In my opinion, a feeding tube used as a TEMPORARY measure to strengthen a person to recover to a better baseline is NOT the same as “keeping someone alive by artificial means.”
We all know the scary scenario where someone is kept alive permanently attached to machines with breathing and feeding tubes- but helping your dad gain nourishment while he is temporarily unable to ingest sufficient nutrients due to low appetite and trouble swallowing-is not the same.
Again, my humble opinion.
Blessings.
Sending lots of wishes of support to you-been there, done that very recently. Hard to go through but we have to let go of our wishes we could control the end.
They usually evaluate every 6 months and that is what they did with my Mom, they kept re-enrolling her because she was on Hospice for 1 and 1/2 Years.
Hospice also does counseling for you and the family if you need it.... they recognize that it is a stressful time and there are a lot of emotions.
I would suggest softly that maybe you talk to them about it... they can reassure family members and make sure that they are taking care of your loved one in the manner everyone is comfortable with.
Having LBD can be very confusing for the person who has it... unlike other Alztheimier's they are aware that they have it and they get very frustrated at the smallest things.
It sounds to me like you have made the right decision considering your Dad's condition.
Sometimes a person refuses to eat because they want to die, as harsh as that sounds. I have seen it many times. They either lose the will to live or they just don't want to be here anymore.
It could be too that your Dad doesn't have an interest in food because of his swallowing issues it is hard for him to eat and so he just chooses not too.
I think when you get to the Hospice stage there is a sense on the family that they must prepare for what comes next... come to a peaceful place within yourself that your Dad has made his wishes known and your job is to just respect that, even though it is hard.
I remember telling my Mom, " I don't agree with what you are doing, but I will support you and your decision". It was hard for me to say to her.
Like I said, please reach out to the Hospice staff for guidance through this time and they are there for your loved one and the family....
God Bless.
It may take him a while to get over the anesthesia, he may not get back to where he was previously though.
I am wondering though why the doctor said rehab was not an option. While he is on Hospice he can not be in rehab though. IF he were not on Hospice would rehab be an option?
Rehab for someone with any dementia is difficult and for someone with Parkinson's it is more difficult. That may have been the doctors reasoning.
You are doing the right thing. Hospice will help you and your dad as well as the rest of the family. You are following his wishes. As hard as it is it is out of respect for him that you do so.
Where will he go when he is due to be discharged from the hospital? Will he go to a Skilled Nursing facility or home? You say he can not live alone any longer.
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!
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!
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.