This was posted by MomsBuddy in another part of the forum.

((It gave me great relief, and I thought it might help others!))


"People with dementia etc. need to sleep a lot, which is why I let mom sleep in etc. Because their brains are already being taxed to the max, more shuteye time is needed for them. Unlike normal adults, I have not noticed that sleeping a lot during the day has much effect on how late they stay up at night... lack of sleep, however, makes them a LOT dingier and more prone to staying awake because they don't have sense enough to sleep. I think sundowning lessens when Mom is well-rested. Remember to increase the light almost to the point of needing sunglasses in the evening (late afternoon - don't wait until it's already dark). Close the curtains so that the reflections from the windows do not confuse or agitate her. While trying to keep a schedule is important, I have found that manipulating sleeping/waking cycles to match our "normal" schedules is much harder on Mom than it is for ME to adapt to Mom's schedule and cycles.

It is scary how little activity is required to wear them out! This is the time to let her follow her natural cycles more... even getting up into a chair requires a nap sometimes! Sometimes a long bed bath, cleanup and wound treatment is exhausting to Mom and she takes a nap after. I cannot emphasize how important the sleeping and rest is to them!! Remember how when little kids are overstimulated and overtired, they can get all wound up and refuse to sleep? Hello. Same with patients with profound dementia who are bedbound. Mom has frightened us several times because she was interrupted during her "sleeping off" a several-day awake period and was so exhausted she seemed like she was dying. She scared the nurse yesterday with just that phenom... Although good nursing practices dictate moving the patient every two hours, you have to balance that with their level of pain and comfort. This is what makes hospitals so hard on my Mom - she cannot stand to be bothered every hour or two!! It annoys her, wears her out and causes her a LOT of confusion and pain. Balance the nursing care with the patient's individual personality and needs."

Thank you sooooo much MB! Phew!!!!

I found out that so many meds work different for differnt people.My mother did not respond to any of the meds that are generally given for her problems.We were prescribed so many to try to help.Each time i had so much hope we had found the right one only to be let down.Hope for her and some relief for my self.
I was guearenteed certain placew were experts in dealing with her problems only to discover she became worse at a high cost to her emotionally and expensive for the insurance companies.They new nothing .
When we finally found the neurologist who diagnoised her and prescribed the right meds another wanted to remove it from her.
That is when I began to see you have to stand up to these professionals when you know they are wrong.
These doctors who are GP usually know so little about gheriatric medicine.I learned this after having such a good gheriatric doctor from the VA.Even to the end I had to stand up for my husband when it came to meds.Moms Buddy informed me of many medical terms and conditions I was not well informed.I blast these doctors and some nurses for not seeing you understand every medical term they describe they are experiencing with your loved one.
I actually printed out what Moms buddy told me and kept it with me when speaking to any medical person at the hospital.They talk you in circles.
I fought with so many of the doctors that cared for my husband , except for the ones at the VA.
I could not believe some of the statements that were made and the lack of common sense.
I have had so many nurses tell me that so many men doctor have bad egoes and actually do not like women.They will not listen to a nurse when she shares her concerns about certain meds and treatment.
I also have discovered that when you have one doctor for so long they become assuming.They assume everything is in your head and not worth paying attention.Comes a time when it becomes necessary to make a change.Meds can be the worst thing or the best thing for anyone ill.As caregivers you have to be the one who watches the afflicted after any new meds is given.They do not tell you what may happen.They just write the prescription and send you on your way.
I saw my aunt react to changes in meds, my mother and hubby.You have to know the norm for the person you care for and that allows you to notice changes right away.
I never had anyone on this forum play doctor.What they did is give me information and their experience with the problem I was facing.
I wanted to be informed and continue to want to be informed.Once you deal with a person with any type of illness you never loose the interest in learning more.Also you continue to get informed about doctors, hospitals.I want to know all that is available so I can help others.Also to discover if something , better , could have been done to have helped those I cared for.
I did it for so long that it is in my blood

quote:

Never, EVER be afraid to research and voice your concerns to the docs and if they will not listen, find someone who WILL.

Amen to that!

MB and ec, for both of you, and all who read here. Docs all to often resent us (advocates) as interferring and know-it-alls, (Mom's PCP is a rare bird, that hates to bother Mom, wants her on minimal drugs, and tells me she thinks I take good care of Mom and will see Mom at short notice anytime I think she needs to be seen.) Her old doctor was a jackass. I had a list of problems with him even before I had any say about whom she would see.

While we must be careful not to "play doctor", who better than we, watch everyday and can report our experience, fine tune care, make it personal.

I read a "caution" not long ago about dispensing medical advice, but I take that with a grain of salt. We share our very real experiences here, including the medical walls we confront. I welcome everyones experiences. Sometimes we have to find new docs. Our LOs can rarely speak up for themselves anymore. We have to watch out for them as we would for ourselves.

Depakote wasn't evil in my Mom's case - it helped her particularly when she was having the pre-dementia highs and lows so similar to bipolar disease. Without it I might have had to place mom in a facility because the highs were so unmanageable. BUT this was a phase of her disease process and the drug itself coupled with the other meds she was on were zombifying her. Medications are so TOUGH with our elders!! Sometimes it's a damed if ya do, damned if ya don't proposition. Docs are often unwilling to be flexible in what they will try - that's where it's so important for our loved ones to have GOOD advocates who can force the issue if need be to make changes for our LOs to insure the quality of their lives. With dementia-producing diseases, just because something worked for the past 6 months is no guarantee it will work in the future and may even cause more problems than the patient had to begin with!! Never, EVER be afraid to research and voice your concerns to the docs and if they will not listen, find someone who WILL.

Just a note:

I see the word 'depakote' and I see red. I see the trust placed in the doctor and I ask folks to please trust their choice to choose another doctor when the doctor won't listen and make medication changes so that one's loved one is not sleeping all the time.

My mother's, now very much former, psychiatrist changed her medicines a few years back while I was out of town. When I got back I could tell something was horribly wrong with her.

Of course, I spoke with her doc about this. He ignored me.

My mother's continued decline - not eating, sleeping so much of the day that I could not even take her out to eat or shop nor anywhere because she was constantly falling asleep - I again brought to her doc's attention.

He made no medication changes whatsoever, and was utterly not bothered by her sleeping away almost all of her life.


Long, long story short - and after I get fed up with her, then, GP (who also would not change her medicines and who sent her away with ' see you in a month, you have gout, here's a toenail care prescription for a podiatrist' - a story I've written in detail here before) -

her new GP which I got for her over her objections hospitalized her, ran all sorts of tests on her, and switched all of her specialists (including that psychiatrist) found that -

Depakote caused her platelets to drop so horribly that she was half dead, and caused a great deal of her sleeping so much. Especially at the doseges her, now former, shrink prescribed her, along with the high doseages of other medicines he switched her to while I was out of town.


I later learned that what happened while I was out of town is she, essentially, pissed off that shrink with her bizarre thinking and behavior so much that he got her drugged up to shut her up. (And she certainly could not be controlled by the caretaker hired to be with her while I was gone. My mother is an extremely stubborn and strong willed woman.)


So, I suggest with anyone worried about their loved one's excessive sleeping, go over those mediciations, talk to the doctor, and if the doctor will not listen to your concerns,

Find Another Doc!

MB replied wisely!!

"It's a FINE line, Dochka... When mom was first bedridden, she was on a lot of other drugs - depakote, zoloft, excelon, etc. She was sleeping like 18 hours a day!! The doc gave her ritalin for a short time in the AM so she would wake up enough to eat, take meds, etc.!! It was then that some research led me to believe that Mom was overmedicated and I slowly withdrew everything but her thyroid meds and macrobid. Sure enough, she "woke up" over a period of a few weeks and was MUCH improved! **I would not suggest anyone doing this without consulting with their doc as it could cause disastrous problems in some patients,** but in Mom's case, the meds were causing her dementia to be FAR more profound and her over-sleeping. She suffers from vascular dementia which is characterized by plateaus and even some improvement here and there...

Tired brains do very screwy things as we all know and too much sleeping can be debilitating and leave one very foggy, too. There's a fine line to find with each individual."

Thanks for clarification MB. And always, always check with your doctor, folks.