BTW quotes should have been added on above....." A caregiver's bill of rights......thru ......recognize the limits of my own endurance and strength".....want to give the credits.....originally from "Caregiving, Helping An Aging Loved One" by Jo Horne, Washington DC; AARP Books, 1985, page 299.
From: A Caregiver's Bill of Rights, I have the right (1) to take care of myself....(2) to seek help from others even thought my relative may object. I recognize the limits of my own endurance and strength.....there's more.....for now tho'! I encourage you to make that appt and why do you even need to tell her......just say you going to see the Dr for your own health. That is true and she doesn't need to know any more. Also there are books out there.....I got them from the library.....that helped me with this very issue.........realizing I needed to "take care of ME" or I wouldn't be any good to anyone else.....it's definitely a process.....so I didn't do it perfectly either........hope this helps some.
I sadly don't get the chance to see a doc on my own. Because we can be kept waiting I just couldn't guarantee I could stay long enough and they get pissy if you leave before you have seen a doc.....like it is only their life that matters! As for Mum letting me see the doc on my own .... aint ever gonna happen. We even tried me seeing the doc while she had a blood test - nope she demanded I went with her. Sighs dependency can be a b*tch
One tho't for ohJude.........someone suggested we talk to our Mom's DR at separate appt (called a consultation) so we could get the help & med's we needed! I didn't know that was an option! The DR was great and caring AND was always in-out within 10min's or LESS when we saw him WITH her. We always had to MAKE a list of Qs ahead or NOT get the help and answers we needed! THE consultation helped greatly BC we were the ones who needed support and help to not only DEAL with her anxiety and behavior issues but to make our caregiving more EFFECTIVE too! SADLY the medical field is not there to assist the caregivers......and YET it really is a TEAM effort. Not sure the medical industry realizes that yet!? Bottom line......we, as caregivers, are left to find the resources and strategies that work for each of us in our given situation. I can only offer this now from hindsight.......because my in-laws (mom and dad) are now safe in the nursing home that is needed for them at this stage of their "dementia's".......and they BOTH are adjusting better than we expected! This was a long road (5 plus years--lost track) of me being the KEY support/caregiver for my SO/sig-other who was the primary/live-in/caregiver for his mom and dad 24 /7. I have my own place 1/2 hr away.....and would not have survived this emotionally or mentally any other way. I was there 5-7 days a week for the last 2 yrs. for 3-8hrs at a time. AND we had medical home-care AND hskpg-home-care the last year and a half....which helped enormously. Social workers, I found, are the best sources of help for listening to me and directing me as a caregiver's-caregiver-in-crisis to the info/sources we needed......hope this helps some.
As far as i know Neither I nor my husband suffer from dementia but we never had the normal sleep patterns of the average worker.both of us worked shift jobs where we had the night shift 10:00 P.M.or 12:00 to 8:30for so many-years or the after noon which all most all the new people who worked where we did were put on ,a 3;00 P.M. to when ever depending on the time of the year how much over time was needed. Even the so called day shift started at 4:00A.M. till noon and during the rush times we could be expected to come in as early as midnight. Saying that neither if us has ever had a normal sleep schedule. So I am not surprised to be wide awake at all hours, as long as we are both safe and not falling down or burning food or water we should be fine. Each person on this list needs to find ways to help their family member with out burning out themselves. Medications can help but some times it is best to have a second person with you at night , whose job is to be with your loved one , so you the main provider can feel safe to sleep.All it takes is your loved one to get out of bed at night and fall to change their life forever.
I think those patients who don't sleep should be medicated. I don't want to cat nap all day. More concern should be given to the health of the care giver. In all reality, the patient's healthy days are gone. Keep them comfortable, be kind. Do what you can. But they need to sleep at night when I do. So hang me!!
Maybe if you Don't turn the t.v off but suggest to her to lower the volume, that might help, she obviously feels comfortable in front of it and I know for my mom she doesn't like to be alone, no matter how tired she is if she's by herself in her room she'll get up to be wherever someone is. So the tv might give her a feeling of not being alone, she does sleep with it on you said.
Mom tilts over and snoozes in a CHAIR (ugh) daytime. AND is UP every 35 minutes or so at night...to calls me and forget why...to grunt and moan, cough and choke...it's been 5 months now...
HI Jo I know the doc aint the caregiver but he acts like god most of the time. The conversation goes like this. We are all in there together Mum me and the doc. Doc ...How are you Mrs XXXXX Im fine Doc looks at me Actually Mums sleep pattern is very disturbed and because she is awake a lot at night I am not getting the sleep I need At this point all looks on track Right Mrs XXXX lets give you a little help to sleep I don't want to go to sleep But these tablets will help you relax I don't want any tablets I take too many now But they would help you get some proper rest Judith (now that means trouble) we are going now - we haven't even been offered coffee and obviously not wanted here.....erm where did that come from But Mum the doc just wants to help you Then perhaps he will kill me I want to die At this point the doc writes a prescription to increase Mums anxiety tablets strength - and says we will come back to the sleeping next time
My Mom goes to bed around 10 and is up sometime during the night. She is in a lower part of the house and is gated in so she won't come up the steps. I live in a 4 floor split level. Since she is safe, I sleep in till nine. Sometimes I find her up when I go down or laying in bed. I don't sleep well so hate being woke up. If Mom got her days and nights mixed up, I would get her a sleeping pill. The doctor isn't the caretaker.
My problem is that my husband sleeps to much unless we are actually out doing things. i.e. Out for lunch, playing golf, shopping, a movie, etc. If we are home he seems to get bored and sits and sleeps a LOT. He does sleep most of the night now though. The sedatives only make the brain signals worse for his Parkinson's. He has more hallucinations and nightmares. Best that he is not on them at all but I am surprised he can sleep 15 -18 hours throughout the day on some days - not all.
I've been having same problem. Dad calls us at 3, 4, 5 and then its 6, which is pill time. I have had a total of 3 hours a night of broken sleep. FINALLY...it took 3 visits to get the neurologist to increase his clonazepam. The first two following days he slept most of the day too. It is working...now on day 4 he isn't sleeping all day. I'm praying this keeps helping. Keep asking there should be something that won't effect other meds. Good luck and tslk to your doctors. Merry christmas!
There is no right out wrong answer. My 86 year old mother would go through Cycles where she would sleep almost all day to staying awake all day. To minimize the peaks and valleys, she was put on trazodone 50 mg which made her sleep 16 hours which was way too much. The dose was reduced to 25mg and it helped. I only gave it to her if she was still awake passed 10pm. However, everyday and long-term use is not recommended because it can cause medication induced Parkinson's Disease. My mother was taken out of it 3 month before she passed away.
Mom didn't sleep well at night, got up about 3 am and sleept a lot on and off during the day. At first she was up all night, they tried giving her something for agitation, but then she was lethargic. I guess the answer is they will sleep when they need to as much as they need to. My mother is in the end stage now. She sleeps a lot more. In a way, it is merciful that sleep gives them some level of peace and escape from the anxiety they must feel.
I have to say I am in the same situation with my husband but I do try to keep him busy and awake as much as I can. He does still get out and about and physically doing pretty good. Some days he sleeps as much as 15-18 hours a day but usually stays in bed at night (except for bathroom calls). His dreams are pretty active and that is difficult on me but I haven't put him on any sleeping drugs,yet. All of this stems from his Parkinson's and some sedatives he was put on when he was in the hospital for a cardiac pacemaker in Oct. However, the sleeping habits have been building for several years.
My father is in bed about 10 hours a day and for the other 14 hours, he is asleep at least half the time. You could play a band around him, and he won't wake up. But, if the phone rings, he pops right up! It's almost always a solicitor he doesn't understand.
Oh if only you were my doc. Mum has anti anxiety meds already which are supposed to calm her. Hmmm well not really.
She never has been a great sleeper but we have gone from a 1pm bed time and asleep I might ad to now a childish tantrum if I dare suggest she turns the bloody tv off at midnight and is often still watching/doze watching at 1.30 - turn it off I hear you say....the second I do she wakes up and turns it back on. Then we go through whats on this station that station the other station - How I never say I don't $%^&ing know I will never know but I stay calm deal with it and then remove myself to my room and scream into the pillow .
My mom would do the same thing. Cat nap off and on during the day and be up all night. Since someone has to be watching her 24/7 and that someone was me, I was becoming delirious, impatient, depressed, wanting to just melt down. The Doctors could see it was destroying me and without me there is no one to watch mom and no money to hire. Mom would be relatively calm during the day but at sundown she started getting tired which made her more demented which made her more anxious which made her more busy. The Doctor gave her a script so I could give her a Xanax at bedtime. I told her to lay on the couch and watch tv with me cuz it's quiet time and we don't want to wake everyone up. Once she started to fall asleep I would take her to her room and she would gladly get in bed and fall straight back to sleep. Since we started that, she sleeps 8 to 10 hours in the night and doesn't cat nap during the day. I know people hate medicating and I was one of those people but the caretaker needs to get sleep or they are no good to anyone.
I know exactly what you mean Bonnie but I have a sneaking suspicion that nobody gives a damn as to whether I burn out or not - until it happens of course then everyone will care - not for me but what on earth are we going to do with your mum? SO I learn to live with no sleep and learn to cat nap when I can
It would be nice if out older family member could or would sleep when you wanted them to, but each person is sleeping when they become tired. Do we as the caretakers force medication on them just to have their sleep patterns fit our lives? Yes it would be nice if they slept when you did and yes care takers need to be aware of the wakefulness at night. Think of these sleep patterns like that of a baby, just the reverse, newborns sleep in very small amounts and as they grow sleep longer but not as often by two or three they sleep over night. For our older ones it is the reverse and each will sleep as the body slows down.Worst case you will have to sleep to their schedule or get a person to be with them at night so you can sleep. Maybe a college student who needs a bit of cash and doesn't sleep much at night might work for some of you.If I come up with other suggestions I will add to these suggestions.
Sleep? Whats this sleep you all talk about? Mum dozes - a lot - it isn't sleep. She does sleep but probably only about 2 hours at a time and not always at night. When I spoke to the docs they all said let her sleep when she needs to we would prefer not to medicate. So although obviously they CAN medicate it is just not a given that they wil.
My mom sleeps 12hours a night unto napping during the day. This started a few months ago. She was one1200 milligrams of gabaprntin during the day for years which made her droggy during the day. It took me a year to slowly when her to 300 once a day after dinner thats when her Bp starts to drops and she is tired. So she goes to bed with her 2 antidepressants her sleeping aid and her abilify. The combination of ssriS restoril and abilify will lower Bp but laying down for12 hours brings it up. Wakes up with HBP but within45 minutes she is normal. Off of HBP medicine and when it gets low we put on her compression socks and recline her a bit and she is Ok. I guess it's different for everyone.
Someone is always wondering about this, it seems as though they are either sleeping around the clock or never sleeping at all. The ideal of course is the normal sleeping patterns of any adult, 8 or so hours, but as the body wears out it is common for them to sleep more. Those who are up all night are hard on their caregivers and can often be helped with medication.
Doc ...How are you Mrs XXXXX
Im fine
Doc looks at me
Actually Mums sleep pattern is very disturbed and because she is awake a lot at night I am not getting the sleep I need
At this point all looks on track
Right Mrs XXXX lets give you a little help to sleep
I don't want to go to sleep
But these tablets will help you relax
I don't want any tablets I take too many now
But they would help you get some proper rest
Judith (now that means trouble) we are going now - we haven't even been offered coffee and obviously not wanted here.....erm where did that come from
But Mum the doc just wants to help you
Then perhaps he will kill me I want to die
At this point the doc writes a prescription to increase Mums anxiety tablets strength - and says we will come back to the sleeping next time
Cycles where she would sleep almost all day to staying awake all day. To minimize the peaks and valleys, she was put on trazodone 50 mg which made her sleep 16 hours which was way too much. The dose was reduced to 25mg and it helped. I only gave it to her if she was still awake passed 10pm. However, everyday and long-term use is not recommended because it can cause medication induced Parkinson's Disease. My mother was taken out of it 3 month before she passed away.
My mother is in the end stage now. She sleeps a lot more. In a way, it is merciful that sleep gives them some level of peace and escape from the anxiety they must feel.
She never has been a great sleeper but we have gone from a 1pm bed time and asleep I might ad to now a childish tantrum if I dare suggest she turns the bloody tv off at midnight and is often still watching/doze watching at 1.30 - turn it off I hear you say....the second I do she wakes up and turns it back on. Then we go through whats on this station that station the other station - How I never say I don't $%^&ing know I will never know but I stay calm deal with it and then remove myself to my room and scream into the pillow .