What do you do when you hit caregiver 'burn out'?

I am a 24/7 caregiver to a 98 year old man with dementia and I have to say that I am very lucky. Prior to him coming to live with us, he was a hateful old man, full of self pity and now he is mellow, smiles, laughs full of compliments and not a problem. He is on NO precription medication. The DR I took him to could not get over his blood and urine test.. The Dr was amazed. He is my signifcant others (20 yrts) Adoptive dad.. My SO twin brother brought him directly from a hopital in Covina CA to us right before Christmas last year.. We live in AZ. I didn't have to take him but I always told him he wouldn't end up in a nursing home. Besides he was a hoarder and his home was a disaster. I wasn't able to take of my parents and I hope this helps me deal with some of my guilt.

Since finding this site, just talking about issues has been a great relief for me. The people on this site truly understand. They don't BS giving you the academic answers. They give real advice and love here. Use this site to vent and ask questions.

My mother can be verbally abusive during meals. She always loves to talk about my weight gain while we dine. LOL! I simply tell her to look in the mirror herself sometime. ;) I also have modified our diet to vegan for a few days in effort to eat healthier, so when she complains I tell her its for my fat a_ _!

Ha!

Note: My mom's health is fragile and all the medical problems cause her mental health anguish. I have home mental health coming out to see her every 2 weeks. It allows her to talk about her feelings and problems and she also is on an anti-depressant. Lately, she's turned even more negative and I've taken steps for greater mental health involvment in her care.

Sundancer2, you may find respite care for a little less if you take her to an assisted living. Many of the assisted living in my area don't advertise respite care but when you call them, they have maybe one or two rooms set aside for this. If you can find a faith based facility, sometimes they are much less per night for respite. I even have one facility that will keep her for the day. They said they had never done this but would do it. I have learned that it sure doesn't hurt anything to ask.

This was the first opportunity I've had to read all of the amazing-wonderful posts that everyone gave on my 'burn out' question of March 29, wow -- really -- almost a month ago? Well, we have made some changes and I'm looking into committing to some respite care goals. I'm setting up my non-used savings account to make it happen, every dollar I can put in there will be to give us some respite time. My hope is that one weekend a month I can pay to have someone come on a weekend and spend most the day Saturday and Sunday with her as more of a companion than a nurse, she's fully functional and we give her pills in the morning so hoping to find someone closer to standard baby-sitting charge than home nursing charge. Then my goal is to be able to pay for respite care every other month or every two months for two or three nights, it's about $200 a day from what I've researched so far so that's a pretty big expense but if I can find a way to carve some expenses around here to offset it, I think that would be just the ticket and well worth it!

I am just so thrilled with this site and the people here, I've got to put a link to it on my desktop so that I make more of a point to pop in here daily with my cup of coffee!

Wow!!! My heart surely goes out to you. Most certainly and most assuredly, I, and certainly most of the folks reading this can attedst to the fact that it is IMPERATIVE that we caretakers take BREAKS!! However, and WHENEVER you can...for the sake of our own physical and mental health!!! God Bless You!!!

I don't think there is an absolute answer. I know exactly how you feel. I think the best thing you could do is declare yoursself on a home vacation. Spend some money on a caregiver service. Go get a manicure, pedicure; go to the library, go for a walk around a mall. Do whatever it takes to get away from her for a while. Is there an adult daycare you could use at least a couple of days a week.? Use any and all resources available. Let us know how you do.

Deep Breathe..!!! Sounds like from what little you posted you could be in "burn out" mode, which can make you feel like you continue to make bad decisions and then think you messed up. You sound tired, depressed and needing a break. Take a walk, go get coffee for 20 minutes, call friends and ask about them and their life. Contact your local Area on Aging for support for your loved one as well as YOU..!!!! Locate a support group, so you will believe that YOU are not alone. Bless you my friend!!

Find a local United Way adult day care agency in your area. this has saved our sanity. My 95 year old mom goes every day and they dote on her. She loves it and it's very inexpensive. I have been able to keep my job and have my life because of this. Hang in there. It's hard and there are lots of us out there.

Oh mercy...I know what youre going through. I'm there with you.
Wish we lived close to each other we could just sit and vent. I cry a lot and no one ever ask if they can help. Only how good he looks and how neat and clean I keep him. He is in the severe stage of AD. He cant hear well or see well and does not like change, tried getting out yesterday believe it or not the sun was shining her. But he gets confused at the store even though I get him to help me push the buggy. Guess I'm just in for the long haul. Talked to Bayada nursing they sit for 16 dollars an hour with a minumin of 2 hours. Who can afford that?
Any way I am praying for you and hope you will for me. This too will pass I have been told.
God Bless

My mom had a stroke 2 years ago and does the same thing and I have no help from family, my poor husband and children are tired of her being so mean. When my husband comes home from work she comes out of her room and sits right in between us as we talk about his day at work because that's what she did with my dad and when I tell her we need a couple minutes alone to talk about our days, she accuses us of not letting her be part of the family and then gets mad she doesn't have a life and the pity party begins! So we have no time alone. When I make dinner she says she doesn't like , chicken, hamburger, grilled cheese, etc..... she always ate these things before! I used to make her a seperate meal but now I say I'm sorry that's what I made for dinner you can make a bowl of cereal and she ususally eats what I've made after that! I know I haven't helped with any answers to the problem but it is so nice to know that I'm not the only one that's feeling this way. When my friends do stop by, which is less and less because I'm always busy with dr. visits and making her food and giving her pills 4 times a day and my personality is just not the same. But then she acts pleasant and they don't see when she yells at me because she thinks I changed her pills or she wakes me up at 2 am because she having anxiety and wants an anti anxiety pill, which is in her pill box on the kitchen counter!!! Thanks for sharing your struggles, hopefully it will get better soon.

hey sundancer,
i hear ya and i am in your shoes. the burden of being on lock down and isolated is overwhelming. if you are like me, you cant find anyone willing to help or trust anyone who would do it if they were paid to be left alone w/your mom. So, heres all i can offer, my garden and my dogs as well as my work on the computer help me get through the long 36 hour days! Gardening has helped ALOT! go out, just be 'away' but yet still there. My dogs offer that unconditional love and acceptance that gives me that added feeling of being able to get through a few more hours. Reaching out to the world on my computer by connecting with facebook friends, writing a blog, looking at pictures friends post and interacting will help you feel less isolated. Helpful hint, friends are not the ones you want to complain to about your situation. They love you but no one wants to talk to someone who depresses them and reminds them what life might turn into for them. Use forums like this for the venting with people who understand. First and foremost, I spend quiet time with God several times a day, not questioning WHY I am in this situation but asking for the strength to continue and be a blessing to everyone. Hang in there but dont be afraid to ASK someone to help (other family) trust me, I know how it goes. The one who is the most responsible is the one who gets taken advantage of. Stand up for yourself and DEMAND help & relief...do it for yourself! Hugs!!

I believe you have taken the first step--you realize you need help. You are reaching out for support--thus, the e-mails. I found that a support group of people sharing over brown bag lunches for an hour in a quiet setting does the trick. We met every other Monday at a church. At first our support group brought our loved ones with us and provided for activities (slide shows, etc.) in another part of the room for them with some substitute caregivers. We were still in full view and they knew we weren't far away as they periodically could hear our voices. As our loved ones began to advance more in the disease we discontinued that practice. We now have a new Adult Day Care center opening in conjunction with a Nursing Home that has a dedicated Alz. Care Unit. We definitely need more of these!!!! Check with your Area Agency on Aging. There are many programs that we have here that people can tap into for help. At first Mom was only approved for 8 hours a week at no cost, but we could have had more if we wanted to pay. We just didn't need more than that at the time. We started caring for Mom in her own home with some outside help about 2005 ish. Then she moved into a personal care home for 3.5 years. Just this month (and I can't believe it is a month already) she was admitted to the Alz. Care Unit of a local Nursing Home upon recommendation of the personal care facility and her family doctor. It's very different for both of us. I continue to visit every day, usually being the only visitor in the unit at the time I visit. There are only 23 residents in this unit, so we are beginning to visit with them too. I must admit some of the pressure and the burden of her care and the finances/medication has been definitely lifted with this move. I'm not sure yet that it is the right move, and I still feel guilty for not taking her into our home. But that was not an option. Hope this is helpful, send me a note. We all definitely need each other when we are in this "job" we were not trained for.

SUNDANCER:

Lucky for you Spring is just around the corner. Here in NYC temperature is still hovering around the 30s, but trees are beginning to bud.

Here are some suggestions: (1) prioritize and manage your time accordingly, (2) increase the physical distance bet. you and your Mom while you're in the house, (3) stop taking s__t and respect yourself, and (4) seek emotional support from all those pets in the farm.

When I was growing up in the Amazon, the animals in our farm were my best friends. They understood and comforted me in times of grief. Come to think of it, they were a lot more evolved and civilized than my brothers, sisters, and extended family.

In a nutshell, make a list of what you have and what you need in terms of relieving burnout. Relief is right under your nose, but it's difficult to spot when you've someone in your household buzzing all over the place, flapping her gums, and getting on your nerves while you're trying to bring home the bacon.

So take a walk around the property, caress, and talk to the animals. Even if Mom wanders off, she can't go that far.

Wow. Looks like you are stuck in the country with a crazy woman. Sounds like a scary Kathy Bates movie!

My guess is your mom knows what she is doing even through her dementia fog. She knows you are isolated and can't get away from her so she torments you for pleasure.

I'd get somebody to stop by now and then just to show her that you have other people on your side. Also try your county area on aging or human services as they may have some suggestions.

You must get away....they tell me if I don't take care of me...I will not be here for her/him....guess what and when you and I are gone, they will get by...Take Hope....Pray....Listen to uplifting, Christian music.

I have a neighbor, that sits with me Dad for a couple hours and then just do anything weither it be a facial or whatever. Just sitting at the beach and reading a book. He normally sleeps the whole time I am gone but it's good for her to sit and watch TV for $10 an hour, since she is on SSI and it gets me away. I know if I go too long between outings, I start to get angry feelings towards my Dad and I don't want to do that! : ( You have to have a little time to yourself! love and prayers, Kathi

My first thought was the reason you're having such a hard time, is that you're not saying anything when your mother is inappropriate. Maybe it's time to take back some of the power you have since it's your house and correct her. I know she has Alz/dementia and will probably do it again and again, but at least you're sticking up for yourself. If it were my mother, I'd tell her that if she can't act civilized at the dinner table, then she can have all her meals in her room. See how she likes them apples. I read your profile about the cold weather, and I hear your pain. I'm so stinkin' tired of this rain we've been having in Oregon I could bite the heads off nails. ha.