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I'm caring for my grandmother. She's 86 years old and has dementia. She's usually a sweet lady but I've been struggling. She has this terrible cycle of not sleeping. She'll some days not sleep for up to three days then crash. Unfortunately sometimes she crashes during the day which is bad for me as I have things I do during the day.

On a side note, my mom has cancer so I became the primary caregiver with grandma's care. Mom was helping for a while, then grandma got shingles so she cannot be near her. So everyday I have to take my mom to get radiation and once a week to get chemo. It's an hour away (it was the best location for oral cancer). We have helpers for grandma that comes everyday so we can do these treatments. Between doctor appointments for both of them, these daily treatments and just daily housework, I'm not able to catch up on missed sleep.

So we spoke to the doctor about it and he said instead of giving her sleeping pills, he thought that would harm her, instead he said sleeping training. I have worked with many kids so I know all about sleep training. We found through trial and error that sometimes when she's up after 3, she will sleep at night. So we started doing this. The problem is she would like to sleep all day long and not at all at night. At night she gets real bored, starts talking, crying out, asking questions, going to the bathroom everytime her pee drops because she just wants to get out of the chair and be 'awake' for the day where as I cannot possibly do that. So I've been trying to wake her up at 3. It's going terribly. She gets so angry when she's woken up. She screams, threatens, calls me names, throws things and even says she'd rather be with anyone other than me. But if I don't keep her awake she doesn't sleep at all during the night and I'm a terrible caregiver. I'm at my wits end. Does anyone have any suggestions or is any else dealing with this? As soon as mom's treatments end, which is in two weeks, I have to think about going back to work. Mom said she will handle care while I work but the nights will still need to be mine as she needs her rest (totally understandable as she's going to be hopefully recovering from cancer and not being able to eat for 3 months). I'm really getting upset by the abuse and the word nursing home keeps being thrown around by everyone (including her although she doesn't want to go. Instead she compares me to the worst people in her mind which is those people.)

I understand dementia is hard on moods. We are lucky to have her so happy go lucky on the days we have her that way. I just wish there was something that to either make it easier on my grandma still allowing me to get some much needed sleep or something that I could convince myself that I'm doing the best for everyone. Help!

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I just want to offer my support and huge hugs for you. How do I deal with anger? I vent to my friends, my counselor, I write about it in a notebook, I scream in my car when I'm alone and I come to this website. I should be exercising, walking, but so far, I'm not. You are not alone. It is very stressful to have your world turned upside down. I have someone I care for who is not always the kindest person either, and it hurts a lot. If you can try not to take your grandma's words personally it will help. I know that is hard. I'm working on that philosophy myself. I'm sure you are doing the best that you can. Some situations are just too difficult for one working person to handle. You are a good caregiver. Don't question yourself, your intent is to be there for everyone, but you do have to try and be there for yourself too. You can't beat yourself up with guilt, what you are doing is incredible and generous. I'm sure others will chime in too. Keep visiting this site, you'll find it gives you strength.
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I feel the same, trying to start full time work again, but it is hard with constant interruptions, gaps to fill in and new solutions to find. A good full time caregiver is helping me and I shall delegate 100% of the care to her this month so I can try and get my life back. I was alone with my ill mother in the past 3 years trying to set her up and find the right caregiver so now that I found her I should be able to go back to my previous life. What makes me angry is still having to fill in and still not finding enough time to focus on myself. It obviously will never get back to normal, so I guess I have to live this with it, trying not to get angry.
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You are doing the right thing don't take comments personally she would be horrified if she realized how she is treating you
My wife Wendy I have to wake to take to toilet at 3 a.m.
Wendy never ever swore before she got her Dementia and was horrified to hear the F word C word and B word now at 3.00a.m she swears like a trooper
I know it is not my wife and just let her carry on.
Please give yourself a Big Hug and continue
Best Wishes Kevin Parken
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Dementia is basically the worst enemy to arrive in a household! Do not think anything is going to be "easy" about this disease, and your health is going to suffer because of it, unless, you put your grandmother in a care facility, so both your mother and you can deal with both of your challenges. Don't even think about going back to work. This would be a disservice to any employer. Give grandmother melatonin for sleeping all night - you can buy it at any drugstore, does not require a prescription, and is non habit-forming. You could take it too as well as your mom! There will be an end to this stressful time, and you will be stronger, as you have already shown you can handle much! Hang in there...
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Sometimes being a family member carries expectations that are not shared by hired caregivers. If the family can possibly afford it, I would suggest trained caregivers around the clock or at least overnight. You might also look into "memory care" facilities in your area. They have trained staff on duty around the clock. At one I visited when looking for a place for my husband, I was told, "We have people wandering around all night."
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littlemisskitty, anger is the easiest way for the ego to deal with having to face the fact that it is flawed and sometimes unstable. we all want to appear as though we've got it together, but the truth is that few of us really "have it together!" . society puts us in the position of having to prove ourselves and requires that we be "normal." (whatever that means)! it's not easy and most of us never get to a place of inner peace where we realize that we don't have to prove anything to anyone...especially when we get to a certain age. i think that our elders are struggling and simply don't know how else to deal with, let alone express their frustration with the changes that are going on with their bodies and minds. I think they feel out of control with the emotional and physical changes they experience with aging and its even more extreme when they have dementia or any other type of progressive cognitive condition. it doesn't make it any easier, but finding balance when and where you can has to become your goal each day. recognizing that their behaviors aren't personal attacks on you, its an attack on the circumstances and situation they are facing. You just happen to be in the line of fire unfortunately because you are the caregiver. I am learning how to set the boundaries emotionally to help shield some of the negative energy my mother throws at me. I have been the bad daughter to and accused of hurting her because i have taken control of the situation. I have emotionally dependent parents and for the first time in my life, I realize it and the negative impact that it has had on my life. I am learning not to take the anger personally because I know that I am not purposely doing anything to contribute to the frustration. The changes our family is experiencing due to her illness has everyone frustrated...she is angry because she no longer has control of a lot of things. she can't be in control because she is emotionally unbalanced and is mentally imbalanced to. All that I can do is make sure that she is not suffering to the extent that I can. I can only care for her to an extent emotionally to and I have to know when to protect my own emotional state of mind. Your mother doesn't mean anything that she is saying so you shouldn't take it personally. I am learning to stop the negative emotion when it comes my way because its not mine! God bless you and keep you both!
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I think that the doctor suggested sleep training to see if it would work, because if it had, it would have been a good, non-medication based solution. However, it didn't work. It's time to go back to the doctor and explain this to him/her.

Your mother needs her rest. You NEED to go back to work. I cannot see tasking your mom with cancer caring for her mother with dementia. It is the work of three shifts of young, rested caregivers at the stage that grandma is at. Talk to Grandma's doctor about this, and what the options are. Certainly her sleep needs to be regulated by medication if she's at home.
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Having cared for my Mother, Mother-in-Law, and wife over a 4 year period, I know the toll that it takes.

I have a saying, "anger and depression live in the same apartment"
When I was overwhelmed I tried to consider the care receivers emotional status. Imagine what your loved one is experiencing knowing that the disease is fatal.

I think sometimes you need to step back and view the process as a third party, in order to separate yourself for the turmoil and anger of caregiving. I must admit it takes a long time to shift gears and adjust.

During my wife's illness, she was lucid and alert through her 4-year battle. She confided in the visiting doctor, that she felt guilty and angry because I had to care for her. This is important to remember, the care receiver is experiencing the grief, anger, guilt, anxiety (I call it GAGA) as you are, but magnified many times over.

At one point, it occurred to me that my accumulated anger from past grief experiences were interfering with the present and my anger was misplaced I should be angry at the disease not my wife.

In addition, you are not going to be canonized and awarded for your 24/7/365 service and you need to learn when to let go and ask, accept and arrange (AAA) for outside help.

There is no higher honor than to be a caregiver for someone you love. However, you must learn self-compassion and learn to love yourself and take care of yourself during this challenging time.

I often found myself repeating the three Cs....I didn't Cause it, can't Control it, and can't Cure it .... Do the best you can and know when to let go.
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I felt this way as well. Placing mom in an assisted living facility for dementia patients has really lessened the stress and it is a relief for me to know that her needs are being met and that she is safe. It was the best decision I've made so far even though it was difficult at the time. I hope you find some assistance for yourself. Best of luck to you.
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If your Doctor won't give you some drugs to knock Granny out..... go to the chemist and get some RESTAVIT (Doxylamine Succinate) it's an Antihistamine- non addictive, that is used as a sleep aide. I live in Australia...so it may have a different name. I have sleep problems and take it myself..great stuff! Talk to the Pharmacist and change your Doctor if he/ she is unhelpful. Everybody gets cranky when they're tired! Try and get her back into some sort of sleep rythym and keep on top of it. (Take some yourself too if you can't sleep... lack of sleep is just THE worst!...Makes me nutty!)
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I get kind of crazy when I don't get sleep. Definitely reach out to the doctor and be pushy..The doctors didnt want to prescribe anything for my MIL at first but we had to keep asking. Also I have found writing my feelings in a notebook has been helping lately. I also feel if you can talk to someone about all of this it can unload some of the anger. I have a friend who also went through a similar situation that I can share with.
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It seems to me that you are trying to handle too much. I think it's time for Grandma to be cared for by other people so that your mom can concentrate on her recovery. You need a break from caregiving, as well. Whether that means going back to work and hiring care for your mom or you staying around as your mom's caregiver, only your can figure out. But you can't do it all.

Anyone would feel angry, frustrated and emotionally depleted with all that you are doing. Making changes is hard but it's often the only way.

I agree with the comment about the sleep therapy. It's been tried. It didn't work. Melatonin works for some people so that's definitely worth a try, but the doctor needs to take another look at Grandma's sleep issues. With assisted living (maybe a memory center if needed) your grandma would have around the clock people available and this sleep issue would be addressed. Also, you wouldn't be the "bad guy" when you are just trying to help.

I hope that you work on changing this situation before you, too, become ill.
Please keep us updated.
Carol
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Your doing the right thing coming here. Also chat with the counselors available at the Alzheimer's Association. The biggest issue Ive had is that nobody really talks about the anger and violence much. I went to the conference in Albany last spring and had a really rough night before. To say that my mom is angry is an understatement. She gets violent. Nobody could tell me what to do, how to handle it. All they can say is hugs and Im sorry your going through it. They are right because there is no real answer unfortunately. We got a anti-psychotic (low dose) but my step dad wouldn't stop lactating her with alcohol. I told him he can't do that but he wouldn't stop. I would suggest the melatonin as well and maybe try the low dose anti-psychotic to help take the edge off for her. They don't really want to be that way....well maybe my mom does. It fit her, her whole life. Good luck and keep coming back here. Even though Im away from my mom now (her request not mine) I still come here to understand the why's of this disease.
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Healthy to be honest about your situation, which is beyond what even a superwoman could do. I tell my Mom she MUST just lie there and rest at night instead of getting up going to the kitchen, watching TV, going to the bathroom, reading, etc. I tell her she MUST take care of herself and I MUST sleep. Like dealing with a 2 year old.

If I were you I would go back to work and let others fill in. If you leave, they will. Save yourself while you still can. When you get too old, no one wants to hire you. You are drowning and she has you in a neck hold pulling you under with her.
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You must take care of yourself first so that you can take care of your mom and your grandma . It will be hard at first, but once you get into a routine I think every one will be better off all the way around . Sleep is so important to our bodies just to do normal routines, and the added stress doesn't help. I would talk to your family doctor about this and pick his brain for suggestions.
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There is a category of short term care at nursing homes called respite care, where a person who is expected to 'rehabilitate' and go back home once things improve can stay for I think 4-6 weeks. The circumstance of caregivers that you have plus the fact that your grandmother's meds are not stabalized for behavioral issues might get you there. A short stay with a return to home care eventually might work out for your family's situation. I wonder whether you have a doctor who is interested in geriatrics? Some are, and others not as much.
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You must talk w ith the doctor again to get your grandmother to sleep at night. I know with my mother when she wouldn't sleep a t night it caused all kind of problems for both of us. You can't do a good job as a care giver if you don't get any sleep. The doctor has to work we ith you, maybe not a sleeping pill but rearanging when ahe takes her pills will help. Some pills side effects are sleepness so they should be tahen at night. Have the doctor review her meds to see if a change could help. In the mean time I find writing my frustrations down helps. It's like I can let go of the anger for a short time after I write it down.
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omg dearlittlekitty!!!! you reeeeaalllly have your hands full!!! Who wouldn't be angry and sleep deprivation sure adds to the stress!!! There HAS to be some safe medication for your grandmother...her doctor is craaaaazzzy!!!
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Carespeaker1, your answer is so helpful and wise. This 24/7/365 caregiving role is exhausting in so many ways that people who have never done it can never understand. But healthy boundaries must be in place and I love what you said about AAA and the 3 C's....that is a huge help to me with the decision I'm having to make (alone) about putting mom in a memory care at this time. Thank you!
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I'm going to answer a question you haven't asked, but one I think addresses a need. Almost every nursing home has something called "respite," where for anywhere from 3 to 30 days, they will care for your family member while you get some respite. This is covered by insurance. Please start visiting nursing homes. If you find a home you feel comfortable with, ask them about respite care. They can give you all the details, requirements, insurance info, etc. You have way too much on your plate. You need a break before you self-destruct. Please do this.
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Please please get night time help. We have it from 6pm-6am. Let the caregiver deal with gran., that is their job you go and get sleep. Some people going through this can be given an elephant tranqulizer and still remain awake its part of the diseased brain!! And remember....this is not your "loving" grandma this is a sick version. So do the right thing be kind but DON'T sacrifice yourself. Your mom needs you and you need to give yourself a respite from a situation that will not get any better.!
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The only thing I would add to Ferris1's excellent comments is to consider a Geriatric-Psych ward in a hospital if there is one nearby that has one. They can carefully try different medications to find one and the dosage needed to help without giving to much. When my friend for whom I am POA started to refuse care at her memory care unit in the AL facility I found for her and her husband, we needed to resort to that. We had to phone three different hospitals to find an opening because they were swamped with people needing this. It took 3 1/2 weeks for them to find the right combination of meds that would work for my friend and they worked well until her next big decline due to her fronto-temporal dementia.
Just another possible solution to consider. Best of luck finding a solution.
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To be specific, we deal with anger in several ways. One way is to separate yourself from the person who is making you feel angry--even for a half hour. Do not engage in a verbal confrontation, just move yourself to another room or go outdoors.Second, find a hobby or an interest you can pursue even for a short time
each day. Read a short story or a magazine, knit, sew, crochet, start a scrapbook. You may find you can think about it and turn your mind away from the anger you are feeling. Third, find someone you can speak with on a daily basis who can hear your anger and remind you that this too will pass, that there is more to life than caregiving, that you are worthwhile and are doing a wonderful thing for your family. We all need approval, and empathy from someone we know who knows us and cares about us.Fourth, get some exercise. Exercise in whatever way can help us get rid of those angry feelings in a healthy way. There are classes on tv, tapes if you cannot go to a class. Walking is a good way to start --try 20 minutes every day and try to increase your speed over time. Then increase the length of time by 10 minute intervals. I am concerned with your angry feelngs, not your grandmother's. She has dementia. Logic won't work anymore. Do what you need to do for yourself as long as care is provided for her.
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I don't understand why the doctor will not hand out the sleeping pills. My father drank everyday of his life...but he was not a drunk...he just liked to drink. And he started early in the day...didn't wait for 5. I went to the doctor with him when he was 90 and the doctor said...don't you think you should stop your father from drinking? I said...why, you think it's going to kill him? He lived in his happy world to the age of 96. Your gramma needs something to help her sleep so you can sleep. My husband of 62 years is bedridden in my living room. He kept me up day and night. I went into the bedroom, into the attached bath and walk-in closet and made a bed. I slept there with a phone and clock until he got his body clock working. Some pills helped. You are to be commended for what you are taking on, but you must take care of YOU!!! He got around to knowing that I was NOT coming every time he called. Find your "hiding place" and use it. It could even be a place with a key....lucky you....none here. Know that this site is the place to let it ALL hang out. Everyone here is battling something or someone. You are special. You are loved. Lots of hugs.
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As far as the sleep issue, has your grandmother's physician (or urologist) ever tried any medications that help relax the bladder?
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Dear Littlemisskitty, it is difficult, if not impossible to train someone with dementia. It has been said before, their brain is not working. I agree with Carol, it's been tried and did not work. It seems like it would almost be an assault to the senses to wake them up not on their own schedule.
Can you try keeping the t.v. on at night to entertain her while you sleep? A schedlued night-staff person? Keep checking back, someone will have a creative answer for you.
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Let's see, how do people on here deal with their anger? Me, I usually hold it in until I explode, then, if I am outside with the hose, I just squirt everything in sight, even on a non-watering drought day. There are, however, better ways to deal with anger. If it is someone else's anger, I run and hide. Most days.
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littlemisskitty: Well, you have to understand that your loved one is never going to be the same person that they were when they were in the spring and summer of their life.
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I elected,after tormenting over the decision but realizing that I had to be what was best for BOTH of us--to place my mom in assisted living. The place looked and smelled great. they advertised a "brain university" for residents with memory issues. it turned out that the facility was not equipped to handle her dementia or diabetes. The staff had no dementia training;and were't prepared to handle the 'potty mouth.--which mom couldn't help. The poor diet--eggs EVERY morning,high sugar canned fruit and processed foods, no fresh fruit or vegetables--all contributed to making her dementia and diabetes worse. I was
there 2x/day to monitor her meals. there wasnt sufficient activities for an 84 yr old so i arranged daily transport to a senior day care for 4hours a day. She was the only resident who left the building daily. it was good exercise and socialization for her at the day care. They had diabetic lunch options and a nurse. There were loads of activities and her favorite 'old school; music was soothing her the whole time. She loved it. It made her want to get up,eat and dress. She had a sense of purpose. After 3months of assisted living,i moved her to a nursing home with a dementia floor. I had visited this place several times;and other facilities. i chose this one because the staff really knew how to deal with the residents. I never saw any residents laying in bed or sitting in wheelchairs--looking miserable. they were generally smiling and upbeat.

I came the first morning after her first night and mom was beaming! She was in the dining hall enjoying the music and tapping her feet. i said;'you look happy.' she said: ' I am VERY happy'. I wished i had found this place first and never put her into assisted living.They didnt have a clue:nor did I,really--as to what to do for quality of life for dementia patients.

The head nurse explained that caregivers and family are frustrated and overwhelmed partly because we want our loved one to 'be in our world and do what We want.' she said that its best to live in their world and understand their wants and needs. The facility had 3 activity levels based on severity of the dementia. ALL residents were involved in something. My mom only live for 2months after--but she was happy. I asked her every day;and she told me every day
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Two things popped into mind when I read your post. Here in the US, some nursing homes/assisted living offer respite care, in which they will take your loved one and look after them for a couple of weeks to give you respite. Some people use this as an opportunity to go on vacation, for example. You could give yourself and your mother a respite while she goes through her treatment. The other thing is that you could schedule a specific activity for your grandmother which requires her to wake up at 3 pm. Something she looks forward to that requires little or no effort on your part. TV show or visit from a friend? My parent also sleeps much of the day because of he has nothing scheduled. Fortunately he does sleep at night. But because of the dementia, he has anxiety about missing appointments and will wake up in the middle of the night, shower and dress for the appointment hours in advance. Then he gets mad when I show up on time to take him! So we relentlessly discuss his daily schedule to alleviate his anxiety that he might miss something. Yes, he has a calendar with everything on it but forgets to look at it and time becomes abstract in dementia. Most of our problems are related to time.
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