Dear Judy,
My mother-in-law has dementia. She and I have never gotten along (I have been married to her son for 16 years). She fell and broke her hip last year and her dementia progressed very fast. She has lived with us since her fall.
Judy, I need help! I am her full time caregiver, I take good care of her and treat her kindly. She has entered a hospice service and they are wonderful.
However — my mother-in-law has all kinds of spiritual questions which are obviously driving her crazy. Questions like: Where will she go after death, how will she get there, what will happen to her?
I try to reassure her that everything will work out okay and that God loves her.
But my mother-in-law just doesn’t believe that she will go to heaven — and even the hospice chaplin can provide no comfort. She is now struggling with Terminal Restlessness, she screams and chants for hours.
Any recommendations?
Suzanne
Dear Suzanne:
You are an extraordinary woman, and I must say I admire you tremendously for caring day and night for a woman with whom you never got along.
It is not uncommon, as I bet the hospice nurses and volunteers have told you, for people with dementia and unresolved emotional issues to experience exactly the kind of symptoms you describe. Namely: fears about the Afterlife as well as the condition known as Terminal Restlessness.
Because of her advanced state of dementia, I’m not sure you can do much about her fears of going to Hell, beyond what you’re already doing: trying to reassure her. In her current state she might not even understand you.
But the Terminal Restlessness, the shouting and the chants can be caused by any number of problems: including urinary tract infections (UTI’s) and respiratory infections. You might mention these possibilities to hospice personnel.
If both are ruled out (or if it’s thought that she is so near death that these infections cannot be cured), sedation can be helpful in controlling Terminal Restlessness: especially such drugs as Midazolam, which is fast-acting or Lorazapam. Mention these medications to the hospice nurses and you all might see swift results.
I hope this helps.
Thank you for writing
Judy
There comes a point when even good Samaritans must face the fact they cannot do any more. It sounds to me like Suzanne is at that stage with her mother-in-law. Suzanne needs to have a calm conversation with her husband, have him face the situation and agree that the mother-in-law should be living in a facility. Regular visits, willingness to be called at a moment of crisis, but not having to cope with the current situation 24/7.
Judy, you were right on it with that answer. I question that the hospice is not being more proactive in this area…Staff need to be one step ahead, and this terminal restlessness is, in my mind a reason for true symptom managment up to utilizing continuous care or a general in patient level of care if needed.
Continuous care allows the agency to supply care for eight hours (can be broken up if that works better, ie 4 hours in the am and 4 hours in the pm). General in patient allows transfer to an in patient facility (with liberal visiting hours) to work on the sypmtoms that are causing the crises…..sorry I went so long, but if hospice is on this case, they need to STEP IT UP! Thanks for letting me vent.
Thanks Jeanne — I too was wondering what the hospice people were thinking (or not thinking…) when they allowed those terminal restlessness symptoms to go on for so long. The writer (not to mention the mother-in-law) need relief, and she needs it now!