My 84 year old father is the late stages of Alzheimer’s and also has Parkinson’s. Over the last 3 months he’s struggling to swallow. We’ve been in and out of the hospital battling aspiration pneumonia. Neurologist just put him on carbidopa/levodopa to hopefully help gain some control over his motor skills and we’re going to speech therapy getting e-stem treatments. He is under palliative care but every time we go to the hospital they always talk to us about hospice and have we considered that option. I’m the sole caregiver with 2 other siblings. They are looking to me to make that decision. Mentally I can’t get there and feel like he still has some fight in him. I keep looking for signs to tell me otherwise but curious how others came to that decision.
Shes in the hospital now so we cancelled it. If she ends up coming home we will start it up again.
She is actually in Hospice, which is a step up (or down, I guess depending on how you look at it)--she's not in imminent danger of dying right now, but she's always one fall away from that changing completely.
Have an eval done for Hospice. It's not been the death sentence we were led to believe. MIL has hung in there for going on 9 months and will almost assuredly be around for 'the holidays'.
I would talk about "extra help" and "no more emergency rooms".
Also consider palliative care. It will allow you to refuse transport to the ER.
When I saw that ER visits and hospitalizations were doing more harm than good, we called in Palliative Care.
When you call Hospice tell them that your Loved One does not want to hear the word "Hospice" as he thinks that means he is dying soon.
Tell him that it is another medical service.
Tell him he does not have to pay for it.
Tell him they are going to come in and see him and see if they can provide more help.
When the Nurse and CNA come thy will not mention Hospice. Most Hospice employees drive their own vehicles so they do not have "XXXXX Hospice" written on the side.
They are used to not mentioning Hospice to patients.
In order to determine that call the Hospice of your choice and ask that they evaluate your dad.
My Husband was on Hospice for almost 3 years. I could not have taken care of him the way I did if it were not for the help of the Hospice Team.
As long as there is a "documented, continued decline" a person can remain on Hospice.
Please call. the worst that can happen is that they say he does not qualify at this time.
Ask them what would make him eligible for Hospice. Then as he declines and you see that he has reached the eligibility then you can call again.
What I would suggest is that if one Hospice thinks he is not eligible contact another and see if they assess him the same way.
When my mother's dementia and CHF had advanced, I prayed daily for God to take her out of her misery and make her whole again. The last thing on earth I wanted was to keep bringing her to the hospital for useless poking and prodding sessions. Her body was exhausted. When she was accepted into hospice, I rejoiced. She passed comfortably a little over 2 months later and for that I was grateful.
We all die at some point. The question is, how much suffering should a person endure before we put an end to it?
Wishing you the best of luck with all of this. It's never easy to say goodbye to a parent, but it's worse to watch them suffer.
The options will soon be whether or not to insert an NG tube or a PEG tube for nutrition and hydration. The continuing to try for a swallow means constant bouts of aspiration pneumonia which is not an option.
If your father wishes to continue to live he will have to let you know if he wants to do the tube feedings. They will not sustain forever, but will for quite some time, but they have complications of infection and of diarrhea and bedsores.
If your father opts NOT to have placement of a tube then you are looking at Hospice care. Without supplemental tube feedings and hydration, the final exit will begin. Even small amounts of fluid will sustain an elder and this may take as long as 30 days. Without ANY hydration 7 days in somewhat more realistic and on Hospice medications will be provided. As nutrition leaves the body and as basic electrolytes (sodium, potassium and et al) leave the body there will be a time of confusion, picking at bed covers, some hallucinations and etc. The Hospice will recommend more medication at that time.
This is now a choice by your Dad or by you for your Dad. I am so sorry. I hope you will be at peace that this disease has run its course and had its inevitable effect on your Dad. He is likely very tired of this battle now, and would like peace. Only you can know that.
He is on IV fluids at home and puréed meals but his appetite fluctuates. We’ve discussed PEG tube. I just don’t know how much more he can take. I’m hoping the new meds along with e-stem will give him some swallow control back.