Mom has recently declined quite a bit and is spending a lot of time in bed - she has been on risperdal for one year and is scheduled for her 6 mo visit with the NP at the neurologist Monday.
She has always seemed way more confused since she started the risperdal anyway, but I'm curious if others have reductions in these meds when they are no longer active.
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You all are heroes
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As far as being alone, I am in the same boat. The situation with my mom has put us siblings on edge. I was the sibling who was my mom's caregiver. Trying to make ends meet and tending to my mother's needs is a lot to bear. So, when my siblings made comments as if I was doing nothing, it sent me over the edge. Unfortunately, things boiled over and some unpleasant words were exchanged. Now I feel very isolated and depressed.
When I hear you mention that you are tired, I became concerned. Maybe I am interpreting this the wrong way, but when I get to the point where I keep saying to myself that I am too tired, it usually means my depression is getting the best of me. You need to look after yourself as well. But I will be the first to admit that I don't always take my own advice. Sometimes I get into a state of mind where everything seems meaningless. It's not easy being a careGIVEr because we GIVE so much of our lives. And that's something you should be proud of! Many people are not as generous. But even with that said, there are times where I still find myself feeling low and hopeless. And in those times, my perspective of reality changes to the point where I begin contemplating to put a swift end these feelings. It's easy to feel overwhelmed, and feeling overwhelmed is something everyone experiences. But it is the constant feeling of being overwhelmed that gets the best of us. I am struggling with this as well and I wish I had a solution. But, for some reason, it helps to know that you are not alone with this. So, for this reason, I wrote this reply. Take care!
While antipsychotics aren't my problem with my FIL, finding the exact formula of treating his pain, anxiety of being bedbound, and monitoring his poop schedule, so that things are "smooth and easy", and that he has a almost daily BM, is quite a feat in itself!
Thankfully the Hospice Nurses have given me an arsenal of medications, and an almost free reign of treating him, with them knowing my Medical background, and they are super supportive, if I vary from the schedule Rx's by the Hospice Dr. All they ask is that I run things by them, and they have yet to disagree with me, but I that is a comfort in itself!
Trust is everything in the care and management of a dying Hospice patient, and from all they have gathered in my extensive chart notes (they've told me that no other family takes chart notes like I do, Lol, that's the Medical Assistant in me) and the fact that he looks and feels better than ever, go figure, that they feel comfortable with any suggestions and requests that I make of them!
This Is the hardest job I've ever undertaken, as at least when our Mom was bedbound and on Hospice, I had 5 siblings, their spouses, and about 15 Grandchildren all completely invested in her end of life quality of care! Whereas here with my FIL, it's just hubby and I!
Another poster suggested that what would happen if he Graduated from Hospice, but I know that this isn't going to happen, as he does have advanced Lung cancer, and this is just an upswing in his health, before the real pain begins from advancing and spreading of the cancer to other areas, such as further spread to his lungs, diaphram and ribcage, and then possibly brain and who knows where.
We are 3 weeks in, and the Dr has just added Prednisone and Gabapentin, and of course, how he's showing signs of an itchy rash, which I've only just discovered, so here we go, back to the trial and error! Grrr!
I wish you great success in finding just the right course of meds, that keep her calm and comfortable! God Love You Sweetie!
I realize this response comes a little late. However, since my mom has been and is currently taking antipsychotics, I thought sharing this experience would help. My mom is having a tough time with delirium. First, I should say that not all antipsychotics work the same way and are usually classified as "typical antipsychotics" and "atypical antipsychotics." My mom was first given Haldol (an old but reliable drug) that is referred to as a "typical antipsychotic." However, the doctors discontinued the Haldol due to a common and very uncomfortable side effect known as akathisia. The older, "typical antipsychotics" are notorious for causing akathisia - a feeling of restlessness that makes you want to pace the floor or jump out of the hospital bed. Then, she was placed on Seroquel. Seroquel and Risperdal are newer drugs and are considered as "atypical antipsychotics." Of the newer atypical antipsychotics, Seroquel tends to be more sedating. My mother was on very high doses of Seroquel and it essentially knocked her out. But that was all it did - it just knocked her out. The doctors thought it was working since it put her to sleep. But when she woke up, her delirium did not subside. With my professional background, I was fortunate enough to come up with the idea to put her on Klonopin. After I did much researching and consulting specialists, I asked the neurologist to put her on Klonopin. As I mentioned above, Klonopin is a benzodiazepine and benzodiazepines are usually avoided in the elderly. Because of this, the neurologist would not do it. So there was a bit a friction between the doctor and me. This was not an easy thing for me to go through since my mother's well-being lies in the hands of this doctor. After several days with no success, he decided to try the Klonopin. The following day we noticed some improvement. Eventually, she came out of it.
The take-home message is this. I am not advocating the use of benzodiazepines as a treatment for delirium. But as care-givers, we know our loved ones very well. The difficulty in treating the elderly with some kind of mental dysfunction is that there are a plethora of reasons that can cause it. UTI, pain pills, lack of sleep, you name it. The elderly a particularly susceptible. What I have learned about being a care giver is to acknowledge your instincts. However, this is easier said than done. It can be difficult to confront a doctor as it was in my case. But look at how my mom improved. I could have been wrong, but sometimes it never hurts to try. I don't know how much of what I just wrote helps any. But sometimes information, as little as it may be, can make a difference. I wish you and your mother the best!
mom was tired and gurgling quite a bit - she still has weakness on her right side and needs a lot of cues while eating to chew and swallow -
it's slow spoon feeding her and she really needs help
I found her asleep at lunch after my care meeting at the facility -
Not sure how to get more private caregiver coverage for lunch now?
Nurse practioner didn't think we should lower the risperdal and risk having mom get more anxious when so much else is going on with her
While the ct scan in the ER didn't show a stroke I guess that's not always conclusive but I'm not going to try and put her through a MRI so we'll try to get a new urinalysis to make sure the UTI is gone and another chest X-ray and do a swallowing test
Sad that mom couldn't say when her birthday is today and she's always known that - she'll be 94 in two weeks
She cried the whole time in the van - it was a bit of a mr toads wild ride
God bless my Viking
I sure understand your reluctance to move her and gather her personality has changed. Tough times...
Mom hasn't been tested with an MRI to determine type of dementia and her neuro didn't seem to think it made much a difference at her age especially since my goal was to keep her anxiety down
The initial drug tried, seroquel, didn't help at all and just knocked her out
Since her move to memory care 18 months ago I've taken her out to her doctor visits and while I may have to switch from her PCP of 25 years now, I'm very reluctant to use the facility visiting psych
Since her move to memory care and more since taking the risperdal, mom has gained some 25+ pounds - side effect or being doled out cookies and ice cream
Of course, when she doesn't eat, she is really sick which was the case earlier this month - Mom's complete decline from being able to transfer to needing a Hoyer lift over the course of a weekend didn't prompt any notice from the facility staff until my insistence on getting an urinalysis done stat
On Monday I have a follow up care meeting with the facility
I'm also reluctant to move her now as at least she's in her own comfortable full size adjustable bed and staff has been more attentive since her return from the hospital but like everywhere it is often a function of how much family is there to stay atop of things
I recognize that even at 94, one could look up the definition of a berserker Viking and see her picture in the dictionary - of course, that's not her true self
Mom's Geriatric Psychiatrist tried her on anti psychotics at some point in the Nursing Home. Those drugs did not work for her. After a lot of tweaking they were discontinued.
Is your Mom's weight down a lot in the last year? If so has the dosage been adjusted? You would think it would have been caught but we all know stranger things have happened with meds in nursing homes.
Thinking of you and the Viking.
Mother has been on risperdal for about 20 months. Due to the progression of her vascular dementia she has become less and less mobile, is now in a wheelchair and spends about half her days in bed as well as nights. The risperdal did not make her confused but took away the delusions/hallucinations so the effect on her has been different than on your mum, but then it is a different disease.
She is on the same dose she started on and is way less active than she was - so the answer is "No" in her case. Can you discuss this with her doctor?
cwillie - that is an interesting article. It did not indicate necessarily an improvement in QOL unfortunately
My FIL isn't on any Antipyschotics, but his recent hospitalization sure zapped him of any strength whatsoever! Is it the post Sepsis, the Lung cancer, or generally just being in bed for well over weeks 3 week now that is doing it? I just do not know!
I am trying to force him to to some simple bed exercises, and also making him hold a fork when possible and his cup or mug, and now have sippy cups, so no spills! Also now that he is bedbound, when turning him, getting him to hold the rail, but that is about as much as he can still do, and Only when I force him as he is unable to turn himself in bed. Otherwise he would be perfectly happy letting me do Everything for him! It's use it or lose it type situation now!
It sounds like things are really rough for you and your Mom, I'm so sorry to hear that!
It seems we are both coming to the end now with our folks, and perhaps it's time. I cannot see how people do this for years on end, no way!
Please know that I am thinking of you! I hope your Mom gets better!
She is still very weak and doesn't seem to be able to move her arms or legs or be able to turn herself in bed - she is trying to use her left arm more but basically needs to be spoon fed although she is now off oxygen and swallowing better
www.medscape.com/viewarticle/781903