My mom has been on hospice with advancing alzheimers. She had an incidence of aspiration pneumonia in 11/2010, which was quite severe and resulted in her physician suggesting hospice. She was eating and drinking very little, weighed about 65 pounds, incontinent, unable to walk.... I live in another state and she is cared for in her home by my 2 brothers - one of whom ( good brother....GB) is conscientious and does a good job of taking care of her needs. The other (Not so good brother...NSG) one has a long history of drug and alcohol abuse, dui's, jail time, etc. He loves mom...just not much of a help.
I spent the whole month of December there taking care of her. Her dementia was advanced, but sort of charming. She re-lived her childhood every day, which was nice because she had not talked much about it before. She would pretend to be involved in a surrounding conversation, only to turn to me and say " I have no idea what any of you are talking about" ....really cute.
Last month, NSG brother combined a lethal mix of drugs and alcohol and died in the home. GB found him, but it was too late. Although mom did not witness the dead body, she was aware that the police, emt's, and coroner were there. GB felt he needed to tell her what was going on, and told her NSG had died. For a few days, she was so sad...tearful and melancholy. Her hospice nurse let her talk about it when she wanted to, and was a comforting presence. After 2 days, she did not mention it again. However, she began to have some personality changes that were quite a difference from the sweet demented pt she had been.
Although weak, she started to try to climb out of bed and tangle her legs in the bed rails. She would tear off the diaper, try to
take off her nightgown. She even took a swing at the hospice nurse she had known for 3 months! A few more days pass, and my friend who had been visiting mom tells me that the right side of her face is drooping a bit. I arrive a few days later for NSGbrother's memorial service, and indeed, the right side of her mouth is drooping....also, the pupil on that side is dilated ( I made my husband and daughter come and see it to verify). My brother told me that the drooping " comes and goes" and that it had never been present when the hospice nurse came to see her. I was skeptical that the pupil dilation could be sporadic, but sure enough, the next morning, the pupil was normal and the facial droop gone! The following morning, the other pupil was constricted and the right one normal. Most disturbing to me , however, was the new and constant vacant look on her face. Since I had seen her a month earlier, she had slipped away. No more hint of her sense of humor, no more recognition, no more mom.
After she started acting out, her haldol dose was increased to 2 mg q 6 hours. She takes Ativan 1 mg prn, maybe once daily at bedtime.
So, I have a couple of questions...even though I know that for a hospice pt, we won't be treating these symptoms. I am interested in what experienced hospice nurses may think about this unusual situation.
-have you ever seen pupils dilate and constrict randomly?
- does the facial droop and pupil changes sound like tia's? Can the grief of losing her youngest child bring on these episodes?
- would you have told her that her son died ? Is it unethical to make a pts last days happy by telling her that her son has turned his life around and is elsewhere trying to do just that?
- how does a person in the demeted state process the death of a son? Even though she stopped talking about it, isn't that grief still in there somewhere?
Thank you for listening to this rather long story. I have been a nurse for over 30 years...never in hospice, though. Thanks for all that you do every day. When they say "out in the trenches" , they are are talking about hospice nurses and aides...
Feb 22, '11
i'm sorry about the loss of your brother.
in hospice, there really aren't any 'absolutes'.
if you feel that mom could understand the news, then there's nothing wrong with being truthful about her son.
that said, there aren't any predictable ways of grieving.
what is common however, is to witness some sort of deterioration in the pt...whether it is physical or mental.
your mom's agitation and restlessness, could be r/t grief...or, some other event.
demented people, most of all, don't have a clue as to the why's and whats.
somewhere inside, i believe their brains know, but it is usually not on a conscious level.
so for mom to deteriorate, is certainly not surprising to me at all.
i wouldn't mention your brother anymore, and would support any symptomology that presents itself.
and while often unspoken, treating the pt with tremendous love and compassion, goes far...very far.
prayers for faith and peace.
Feb 22, '11
The beauty of dementia is that sometimes that grief is truly gone with the forgetfulness. I had a pt whose wife had died and he did not remember. When told he would go through the entire grieving process.
It is not uncommon for hospice patients to have frequent TIAs. If they are really happening that frequently, that may be the cause of the personality changes. It is not uncommon that people with frequent TIAs will have personality changes, increased anxiety/agitation, confusion.
Make sure that your mom is having her symptoms managed- particularly anxiety and agitation. Sorry you are going through this.