How do you deal with caregiver burnout?

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My mother is 85 and suffering from dementia. I'm the only daughter and my brother lives 1400 miles away so it falls to me and my husband and our grand daughter to talke care of her. She is extremly mean to our grand daughter and talks at her under her breath calling her names, etc. She also talks about a boyfriend she had a few years after my dad died and cries over him but seldom mentions our father. This is upsetting to me. She also constantly reminds us that this is her house even though we pay all the bills, buy all the food, maintain the house and yard, do the cooking, cleaning, and the laundry. We take her to the doctor and beauty shop, etc. We recently got a home health care giver to come four hours a day, twice a week to give us a break and she threw a fit and refused to let her come anymore. One of us was always in the house with them so we know she wasn't mistreated. I sometimes feel guilty and think that I'm a horrible person for saying and thinking these things. I'm venting here but would like some advice about how other people deal with difficult situations like this.

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If caregiver have burnout it their fault, I have had ALS for 3 years and have never had a caregiver. I am the only person according to the ALS Association, in Eastern Iowa and Western Illinois that does not have a caregiver. And I am also healthiest ALS patients, many believe it is because I have done everything myself or with little outside help. Caregivers take way too much on to themselves and can leave the patient feel helpless. Of course this doesn't mean patients needing advance care, should be left to do things on there own. Some caregivers feel sorry for their loved ones and try way too hard to make their remaining days as easy as they can, when they should just continue with there day to day lives until they are truly needed and not when the loved one makes the caregiver feel guilty for not helping them. Doctors and hospitals are the best places to ask for guidance as to how much help the caregiver should give and how much their love one needs. Many caregivers in my support group have thank me because they see how I have dealt with my illness and have taken a step or two back and thus have made their lives a little easier.

If caregivers would remember to care for their loved ones and don't over care for them
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Dear Matuse: While you're laid up and recuperating, ask someone to get the book "The 36-Hour Day" by Nancy Mace. If you type in "pdf free" after the book title, I think you can even get it for free. It has helped me SO much in dealing with my narcissistic Mom (who lives with me), w/no help from my siblings. The chapters are short and very easy to read, in layman's terms, and you don't have to read it in order, like a novel--just look at the Table of Contents and choose which chapter title jumps out at you that day. It really helped me differentiate between the disease and Mom's own "quirkiness"--which only gets worse, I'm afraid to say.
As with every bit of incredibly helpful advice I've gotten from this site, there are some days that nothing works; it just sucks! But I found this book to be very helpful in "choosing my battles" and learning how to live in HER reality.
I'm so glad that you have a husband, daughter, etc. to take care of YOU. Please take this time to really stay off your feet and HEAL--inside and out! Blessings...
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I am overwhelmed by the support and understanding shown to me and my family on this forum. You all have good and sound advice and caring hearts. My husband and I and our granddaughter are taking a two and a half day vacation thanks to ouepr daughter coming to look after her grandmother. She is a teacher of special needs kids and since school is now out she has some time to help us between her summer temp jobs. We will tackle the home health care aide issue when we get home. Sometime in the next two or three weeks I have to have cervical spine surgery so we will need the extra help. Thank you all for taking the time to help me.
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Ditto on everything said here. When I first started bringing in caretakers mom wasn't bad. She never really liked sharing me with anyone but she was stuck here all day while I was at work. A very painful memory for me. Regardless of what she wanted I got the caretakers any to act as companions. I had them operate the t.v. play games with my mom, do word puzzles, go for walks, fix lunch, take her out etc etc. Of course, I wanted them to do the things mom wanted to do. I had a least 4 wonderful caregivers that did these things and more and my mom grew to love them! One care giving did art therapy with mom and mom liked it. It didn't help me much because i had to take over when i got home from work and mom really missed me and wanted my attention; i had to cook dinner, mom helped with the dishes and try to get some sleep for work the next day. Whether your mom likes it or not get the caretakers in. I really support the idea of "doing things" with your mother so her mind stays active and stimulated. If you really want to know what's going on between caretaker and your mom, they sell video baby monitors. I don't know how they work or if you can record the day or not. My mom also loved the enquirer magazine so i kept a supscription going for her. i also got lots of books from the library esp lady dianna books cuz mom loved reading those. I also got every week movie for mom; i got travel, hawaii (mom loves hawaii), blue hawaii (Elvis) and others that I thought she would enjoy. I would turn on a movie and she'd watch and I'd get a few things done. Good luck to you.
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My mum veers between being pleasant and cheerful with me, and accusing me of plotting against her and doing all sorts of sneaky things to undermine her and make her look bad with the neighbours. At first I got very upset, and we had terrible arguments. When I tried to discuss it a day or two later she had forgotten all about it and said that I was suffering from an overactive imagination because I read too many books! Now it still hurts because it's my mum and I still need her approval, but I just let it go. She can't remember the tantrums, and I realised I was trying to force her to apologise and make it better for me. The crosser and pushier I got trying to get her to rationalise her thoughts the more determined she became not to give in - she's a tough fighter! I take her out as much as possible (I live 70 miles away and work), and we go away - always to the same place and hotel - now and then, and as others have said, distractions and involvement work best.
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gladstone offers excellent advice. My Mom left her house of over 45 years, 6 years ago to come and live with me. She talks about "when she goes home" and tucks things away (newspaper articles, magazines, recipes, that kind of thing) for "when I go home". I just smile and say ok, tell her that I'll put them with the rest of her things, and let it go. I try to shrug off when she talks about going home, and she doesn't push it too much. The girls that I have stay with my Mom when I need to go out get along just fine with her, and she's as pleasant as can be with them. I know that she enjoys the change of pace, even though she complains, telling me that they "didn't do a darn thing the whole time they were here". I smile and tell her that they weren't here to do anything but keep her (and the dogs) company. She thinks it's silly, but goes along with it. Once they're gone, she seldom brings it up again. Do what you can to keep your sanity, keep the caregivers coming, shrug off what you can, and vent about the rest. Call her out about being mean to your granddaughter. She may not remember it later, but you'll know that you did the right thing for your granddaughter. My Mom likes to "break the rules" when it comes to my grandsons (saying things that they're not allowed to say, tugging at toys with them, etc.), but I call her out every time. She told her doctor last week that I give her a "time out" just like I do the little boys. He said, "Good! The rules don't change just because you've gotten older." We all do the same things; please understand that you're doing a wonderful thing for your mother. Try to remember that she's not making a concious choice to be mean, ungrateful or difficult; this disease is so unpredictable and she might not even remember acting this way towards you or anyone else. I believe that those of us that are closest to those who are suffering with the disease are much more affected than even others who are living in the same home. It's because we care so much, and we give so much, and we want our loving parent back again. One last suggestion: try interacting with your Mom doing something that she might enjoy. I gave my Mom a seed catalog that I got in the mail, because she loved gardening. Even though I didn't order the plants from that catalog, she really enjoyed talking to me about what she saw there. We do activities sometimes with my grandsons (4 and 5 yrs old), because all three of them benefit from hand/eye coordination and finger dexterity. When boredom sets in, we stop. But it breaks up the routine. Almost any activity that engages her mind and possibly her hands will distract her for a while and maybe even make her happy. Good luck.
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I also agree you should try to have a plan in case it does get so bad you are at wits end. If she would move in your place though, you would most likely have to listen to 'I want to go home, my home". My mom says this at least 20 times a day and she moved here with me 9 years ago voluntarily. As soon as the dementia hit her 6 years ago all she thinks about is going home. I took her to her old home and she didn't recognize the house she lived in for 45 years. I am afraid whatever you do your mom's personality now just isn't what it was before. It's a hard thing to believe but as the disease progresses it's probably going to go even further down hill. Hang in there and be sure to keep your caregivers coming even if you mom doesn't like it. Give them the needed instructions and leave. You will probably find when they are one on one the conversation will go better. Chances are your mom will not remember much of it shortly after the help leaves and you return.

Good luck and God Bless You for being the strong person you are. This will make you stronger.
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I am in similar ordeal, and you should give your self a big pat on the back for all you do for someone who feels entitled that your giving up your own life to be there for them, and do everything. Take all this good advice posted, but making time for yourself, and family has to be one of the best tips. Moving out, and leaving mom with dementia just hasn't been a easy option for me, but my mom is so young with this awful disease, and well your mom will probably only be around another short while so I praise you for all your effort, and relentless love under not easy circumstances. Believe me I know exactly what you mean and how you feel. You will get your life back, just hang in there. Love and Light.
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Matuse, I think that JaneB gives some good advice, but if you are like me and are determined to stick by your mom's side until whatever, I know that stepping away isnt' going to work for you, unless it is incremental.
I think that when our older loved ones suffer from dementia, mental dysfunctioning diseases et,al, we are left to battle the demons of reality with tools that often may help the loved one, but leaves us feeling like we are out in the cold. I've heard it said more often than not, the journey is worth the effort. I don't think this means that we should accept demeaning treatment, but learn to discern whether it is the disease or if our loved ones are taking their losses out on us. I can't tell you what to do, but I can praise you for being the loving caretaker that you are and I pray that you find relief and some solace before it takes a negative toll on you. Best Wishes, Mimara
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Was your Mom always this way? Was she always "difficult"? If not, then I'd suggest visiting a gerontologist (a specialist on aging) and have him evaluate her. This is always one of the first steps that I recommend to people, because it made such a big difference in our lives, both for my Mom and for the rest of my family. Mom would cry at the drop of a hat, and medication helped to stabilize that situation, taking her back to being her "old self". It's so normal to feel resentment when you're in this situation; you feel as though you're being robbed of a part of your life that you'll never get back, and you're giving it up to someone who is ungrateful and hostile. One of the most beneficial pieces of advice that the gerontologist gave me was that it was every bit as important for me to take care of myself (and to sometimes remove myself from the daily routine) as it was to care for my Mom. My Mom wasn't going to get any better; there's no cure. That didn't mean that I had to burn myself out in the process. A good gerontologist will not only serve your mother, but he'll serve you as well. The right medications could get your Mom right back on track. It still won't be easy, but it will make it easier to bear. Good luck.
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