I, too…was put in this situation. My Father when dying of cancer asked me to care for my Mother…being a R.N….I decided this would be the course of my life. It is a big sacrifice but I have worked in nursing homes where I walked into a room and an elderly patient had a window wide open in the middle of winter and NO BLANKET!!!!!!!! Is this what you want to do to your parent? Do you know how many elderly I treated for pneumonia while working in nursing home?…how many patients I saw fall because there were NO nursing assistants on the floor…SHORT STAFFED? I think a family member trying their best is better than these conditions!!! My Mother was taken off of Risperdal for the same signs/symptoms…she also had decreased appetite, depression and head shaking…pill rolling, etc. Luckily I had a good Psychiatric Dr. who listened to me. I have been taking care of her for over 2 1/2 years while caring for a 3 1/2 y/o as a single Mom…if I can do it…you can too.
She also went Bipolar after my Father died. She also is a small woman and cannot handle a lot of medications. For extreme agitation and sundowner’s at night I have given her 1/2 of 0.5 klonipine for EXIT SEEKING…this seems effective. I only use it when absolutely NECESSARY. Sometimes if I want her to get some sleep and she seems restless…I just giver her TYLENOL PM. This works like magic…and NO doctors will recommend it because they are not making any profits. She is also taking 2 Namenda 10 mg twice daily and depakote 125 mg twice daily. Since I have tapered her medications…she seems to be doing a hell of a lot better. There is no depression and her appetite has improved. Her Aricept was also discontinued and I think this might have been causing appetite loss. I am going to look into the possible use of marrinol in the future.
But good luck and god be with all of you that are having to deal with this horrible/nightmare of a disease. My sympathy goes out to all of you. Be assertive with your Doctor’s…they are busy and some of them are know it all bullies that need to be reminded that we are all ONLY HUMAN…I had to give up my job and learn to shop at thrift shops…this fight has made me a stronger persona and possibly a BETTER NURSE…one day when I am back in the field…oh, DID I EVER LEAVE? Also, there are respite programs that allow caregivers time off during the year. They allow 30 days of stay at the They are staffed very well and accommodate about 10 residents at a time.
I hope this information helps someone out there.
I also have started giving her 2 cups of coffe in the morning and decreasing her sugar intake…seems to be working. Music, gardening, sunshine and aromatherapy, pet therapy…all seem to work miracles, too. Also, a visit to her favorite church!!!!
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You are the friend I needed today.
I am in the EXACT same boat but i am not a nurse….I was an event planner….I am KIM and you can reach me at queenofevents@yahoo.com should YOU need support (just type sundowner friend in subject line)–Ill be there for YOU when YOU need it-Thanks for your tips–KIM
They want to use them as guinea pigs.
Risperidal is something that was first
recommened for my father. He pasted 6 years
ago. Now I totally refuse to let/put my mother
into a nursing home.
Thanks for sharing your story caregiver. Mom was diagnosed with
schizophrenia in the 1980′s and was on Haldol at the time this gave
her terrible palsies, where she constantly looked like she was gagging.
They switched to Risperidal eventually when it became available.
She is 69 now and recently had to be hospitalized. She had been
complaining about back aches for months now but neither her MD or
Psychiatrists did anything about it. Two weeks ago we noticed her
body became stiffer and she walked with a shuffle and would lock up
unable to step forward. We had to take her to ER where they ran blood
tests, CAT scans and X-rays. She was diagnosed with “Parkinsonion Syndrome”
not the disease itself. It is speculated that it was most
probably brought about by long term use of Risperidal – which IS
known to cause this and is very dangerous for elderly patients.
She is in an nursing rehab facility which is really another modern
name for a nursing home. IF she show walk on her own using a walker
and move adequately she will be released to independent living with an IHSS provider to visit and
help with basic assistance. We were told she would exhibit aggressive
and irrational behavior after being taken off of Risperidal and it
took less than a week for her to show this. My last visit in the
evening with her she brought on her first nasty Sundowner episode in
front of my toddlers – her grandchildren. I kept my frustration in
check by reminding myself, it’s her mind pulling out the worse in her
due to the physical chemistry. We believe through experience that
holistic organic care along side limited pharmaceuticals is effective.
She assured of our love and help but I also firmly stated it was up
to her to get better. It is trying to talk to your parent as a child
having a tantrum, but one can remain lovingly firm and be an enabler
to their helplessness. I will try the Tylenol PM for her, they where
giving her Ambient and Celebrex for sleep and pain killer. Yes, even the best of
doctors are caught in this BIG Pharmaceutical drug pushing. Don’t accept it.
Sorry, NOT be an enabler is what I meant to say.
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