How do you deal with caregiver burnout?

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

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...

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.

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.

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.

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.

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.

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.

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

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.

I agree with Jane about at least looking into another living arrangement. Like you said you are all doing everything but being abused for it. What about moving elsewhere and giving her the option to come live with you? It would change the dynamic? Maybe just the discussion would make her think what she would do if you were not there. If her dementia is that bad it may not work? Since I have been reading the forum I see so many people who have lost or ceded all control of their lives while trying to help someone. There has to be some sort of middle ground where you can help someone or be a caregiver but not end up utterly powerless in the situation.

It's completely ok to feel resentful and frustrated with your situation. And good for you for reaching out to this community to share what's going on and ask for support...that's not an easy thing to do! You may want to find a support group in your area (call either the local Alzheimer's Association or your Area Agency on Aging for a list); support groups are a great way to hear from other caregivers what's worked for them and to get support.

Dealing with someone who has dementia can be extremely challenging, especially if they don't understand how much you do for them and why you need a break. Talk with her doctor about her mood, learn as much as you can about dementia, and maybe try some new ways of talking with her (there are a lot of good guides on dementia). But you still need a break and, even if she doesn't like it, try home care again. Tell her the doctor requires it or it's a friend coming over, anything to make it work. She may not like it, but may get used to it (and as long as she's not physically aggressive to the worker, she can complain about them all she wants). Maybe an Adult Day Program would be another way to get a break too. Try www.alz.org or www.caregiver.org for more tips too.

Visit our special caregiver burnout section to help you manage your stress and emotions from caregiving. https://www.agingcare.com/Caregiver-Burnout

Matuse, don't be thinking you are a horrible person at all for thinking or saying how you feel - caregiving in many instances can be the hardest thing some of us have ever had to do. We are all dealing or have dealt with so many versions of dementia/alzheimers and to different extents; many worse than others. Venting is good and you came to the right place. Jane had some good advice. This will not get any better, only worse with time. Hugs to you and take care.

Is there a possibility, an actual possibility, that you all can move somewhere else away from her? I'm not talking about what is best for her, but what is possible for you. Can you move elsewhere? If so, if you have an "out," think about using it.
Now, I'm not saying TO use it. But what seems so hard for most of us, at least in my view, is that we feel trapped. If you can financially afford to live elsewhere, KNOW that. Maybe even figure out where and how that would be.
Then be prepared to tell Mom that you have a plan to leave her to paid caregivers because you and your family are being treated unfairly and I lovingly. Which is the truth. That you do not need to put up with it, because you have other options. And that SHE has other options: paid care in the house, or a facility where she will get the care she needs.
I can't believe I am even suggesting this, but it so seems that this mom needs a reality check, and a big fat one at that.
She is likely acting out on you all because she has lost things that matter to her: youth, desirability, freedom, physical vitality. That's a hard place to be.
But it's not an excuse for being a jerk to you. Is this behavior new, or have you seen it before? It feels like old news, and if it is, you need to know it won't get better short of something that forces a change. And change looks like all kinds of things...including that she no longer lives in her own home.
Why does she get to decide whether a paid caregiver is there or not? I'd bring them back and LEAVE, so she doesn't feel like you are wasting her/the money for the caregivers.
Breathe. Listen to music. Garden. Find something that grounds you. Find ways out of being trapped, even little ways. In fact, start with noticing all the ways you feel trapped, and see what you can do to turn that around.
Sending you good vibes.