Yesterday my almost-ninety, dementia-ridden, & narcissistic mom left the hospital after pulmonary edema treatment and I signed Hospice at Home paperwork. She is back at the ALF on oxygen, off Eliquis, on aspirin, and has a care team. It sounded like an answer to prayer when the hospital nurse, doctor, and Hospice coordinator ask us about it, but now I'm wondering if my mom REALLY knows what she wants. The dr said she wants this end of life treatment, says she's a believer, and is ready to go. We've heard those words many times, also. As I signed paperwork, they were so methodical, direct, and finalizing that I began to feel like I was giving my mom a death sentence. I am appalled that I haven't slept all night & have worried about this, especially since she's been so miserable the last decade and has been so mean to me as her POA. Has making such a decision had this effect on anyone else? Hospice said this doesn't mean she'll die in 6 months; she may live for 2 more years. We can make her comfortable, offer additional things that ALF cannot. It sounded great, so why am I second-guessing myself? Will talking with my mom with dementia, solidify the Hospice decision? Prayers appreciated & any personal experiences are welcome.
You describe your mother as a narcissist. If that is true then you are merely manifesting what she created you to be, an uncertain person who believes she can never do it well enough to hear the words "I love you".
Saints are here for us so that we can do our bow and arrow practice. When they are full of arrows and dead we will continue to pray to them forever to fix everything for us. It is a very unpleasant job description.
Why would you equate signing to have more loving care for your mother and yourself with signing a death warrant? Please consider asking hospice folks if they can provide you with some loving counseling to support you during this end stage of your mothers life, to support you in wanting her relief from this torment. They often have licensed social workers who are trained in life change problems that can and do and will eventually come to us all. Trust me, you DO deserve this help.
As to the question "Why am I second guessing myself". There's quite a simple answer. It was what you were raised and trained to do. I doubt that this is the only situation in which you are plagued by uncertainty.
We are all human beings, not Saints. We all have our limitations. When people force us into positions where we cannot love them, cannot even LIKE them, in fact often secretly wish they were GONE, we, as decent human beings take ourselves to task in the worst ways.
I wish you nothing but luck in this. And, again, if Mom survives hospice 6 months of care they will not issue a death warrant.
As for Hospice.
Give it some time. If after a month you still feel unsettled about this decision you can reverse the decision and she can go off Hospice and return to her usual medical team.
I felt my Husband was getting better care and attention from Hospice, he was at home though. Once a week there was a Nurse that would come and check him. Several times a week there was a CNA that would come in and help with things like bathing, dressing, ordering supplies and teaching me how to use equipment.
In a facility the Hospice team will be another set of eyes on your mom they will notice any decline probably faster than the normal staff.
Now I will say these are unusual times and the Hospice staff might not be what typically would be at the facility. Many facilities are not permitting Hospice staff in and the facility staff is documenting and doing the Hospice role. This is to minimize outside contact for both residents and staff.
But the main goal is to keep mom comfortable, that is the goal of both Hospice and facility. Hospice will respond probably faster than the facility doctor in the event your mom needs anything urgently.
Again give it a while, you may not even notice a difference, if you are still uncomfortable you can reverse the Hospice decision.
I think there are many psychological aspects in your situation from the act of signing important and thoughtful paperwork all the way to the unthinkable of having anything to do with our parents death. Such a strong taboo.
That thread of thought skips right over the equally compelling knowledge that without the proper paperwork, the parents life is left not to end naturally but to be caught up in medical science where your mom is allowed to almost die and then pulled back by the interventions she recently experienced until finally, she succumbs.
My mom was on yet another rehab for which she was too tired to do, when she developed aspiration pneumonia, went on pallative care and died. All this happened within hours from rehab to death. I was exhausted, not sure how it all happened so quickly, which of course it wasn’t quick at all. She was, after all, 97 years old and had been battling CHF for seven years.
I have an aunt who is now on hospice for three years. She has Parkinson’s and dementia. She has been on no medication for all this time. No, I think she is on one that helps with the tremors. She is pleasant, has always been and her daughter is full time caregiver to both mom and dad. The cost to keep a person alive when they are worn out in body, mind and spirit is huge. Medical resources, the lives of loved ones caring for them and the ripple affect on the extended family are in many cases beyond exhausted before they are allowed to pass on to the next dimension.
Many people are surprised at how they feel after they follow this logical next step in medical care. Good and bad feelings. We aren’t prepared somehow.
There is a book that really helped me called “Being Mortal; Medicine and What Matters in the End” by Atul Gawande. You might want to read it. My wish for you is peace.