I'm beyond caregiver burnout!
By Carol O'Dell, Caring.com contributing editor
My mother has severe Alzheimer's. My sister helps out financially, but Mom lives with me. I have a home health aide, but Mom just screams nonstop and won't let anyone touch her but me. How can I go on?
I'm so sorry it's come to this. It's heartbreaking for you and for your mom.
You're facing the darkest of roads -- so what I'm going to suggest isn't mean or cold. You love your mom. You're committed to her care, and you're doing all you can. But now it's time to turn off some of your emotions. If you don't, you'll make yourself sick. Sadly, all you can do will never be enough. Your mom feels lost and alone because of the disease, and you can't take away that fear.
I realize that she may not be in full control of her faculties, but perhaps your mom is a bit like mine was and is using her situation to manipulate you into doing what she wants, without being able to understand when it becomes too much for you. It's time to reign in your thoughts and steady yourself. When we corner ourselves and refuse to offer our spirits any options (to quit, to take a break, to let go for even just a little bit), we set up our bodies and spirits to rebel. That rebellion may come in the form of an illness, accident, or depression -- and when it hits you, it’ll be bad.
If you really feel like you’ve slammed into the caregiver-burnout wall at full speed, then quit. For five minutes, quit being a caregiver. Quit listening. Quit caring for everybody else. You may be able to manage this for a few minutes or for a few hours, but you need to let caregiving go completely.
I remember this day in my own caregiving journey very well. My mother would have latched onto my hip if I'd let her. Her demands were relentless, and my nerves were beyond frazzled. But I realized what I had to do. I had to feed her, provide for her, give her the medications she needed, make sure she got all the medical care she needed, but do it in a way that was less emotional. I learned to stay inside my own head and heart, and any time I felt her pulling on me in an unhealthy and uncontrollable way, I'd tell myself, "I've done all I can do." Then I went on autopilot, if I might put it that way. This numbness kept my heart (and sanity) from breaking.
If you have a care aid you can trust, force yourself to get away -- even if just to your bedroom. It's hard, after such intense caregiving, to figure out what to do with yourself when you're not in that role, so be prepared for some boredom, lack of engagement, and floundering. Don't worry about that; just make yourself leave your mom's care for a little while each day. Take a walk. Pull weeds. Flip through an entire magazine. Clean out a closet, or take an extra-long shower. Call an old friend and don't let yourself talk about your mom for more than five minutes. Or just light a candle and watch the flame. Get back to yourself. You're not who you once were, but you're more than just your mother's caregiver.
When I was in your shoes, I stopped listening to everything my mom had to say, meaning I stopped trying to reason with her or argue with her. I stopped answering her incessant questions, because my answers didn't comfort her and they got on my nerves. Try some of these tactics instead: When you do your mom's chores (change the sheets, clean up her room), put on your iPod and do it as if you were the maid, humming along to the music. Smile and act as if you're being paid to care for her -- and paid well. When she tries to push your emotional buttons, put down what you're doing and leave the room.
I also had a few motivating tricks for myself, such as a treat of dark chocolate when I'd handled a tough situation, or gold stars (yes, really) that I'd put on my hand or hers whenever one of us was sweet and changed how we were behaving. I had the best-weeded mailbox area you've ever seen, because I'd let myself avoid going back inside by doing a bit a weeding. I turned it into a game: How can Carol sneak away for five minutes?
You'll see -- just five minutes can make a world of difference. Then when you step back into caregiving, do it because it’s a choice. It may not be a great or a first choice, but it’s a choice.
One more thing: If you feel an emotion bubble up -- rage, sorrow, panic -- let it. You've been stuffing down everything you can, but you need to feel it. Don't be afraid it will consume you. Slam a door. Cry and scream and moan. Write yourself a letter and tell yourself what an amazing person you are, and how courageous you are for even trying. Honor your body and your heart by recognizing what you're going through. Whatever you're feeling, it isn't bad. It's natural. Acknowledging it is downright necessary, and it's the only way you'll be able to go on.
DeSigns-We all have to cope in our own ways. Caregiving takes a huge toll emotionally and physically.
I feel for you. Becauce my situation is a bit diffrent. my mom in law has late stage dementia. she cant do eany thing for here self.She needs to have her dyper changed, her body washed, and all her personal needs done for her. I just last week had to give her a baby bottle cuz she can no longer use a straw. she has to be turned every hour, and I am the only person to do this. She is on hospic in her home, and my husband and I moved in with her last year, cuz we could no longer afored the care giver we had for her for the last 4 years, the econemy hit us hard. so we have been living with her, for over a year, and im with her 24-7. because my husband has to work 2 jobs. I dont know a word strong enough to exspress how much of a drain, mentally, finacialy, and physicly caring for her these last 5 years,has been, the last year and a half has been the worse. My husband has developed high blood preasure,and lost weight. I have carpel tunnel and nerve damage in my hand, also a pinched nurve in my back. I had this condition befor I became a care giver, but the physical toll of her care is making it worse. we dont have the means to place her in a home, and she let it be known she wanted to pass in her own home.Well she no longer knows whare she is, and rarly speeks, but we are keeping up with what she wanted. I honestly dont know how much longer we can live in this preasur cooker. my husband and I feel like elaphants are siting on our chest. I know my mom in law dosent have another year, and when I am constantly told by hospic, and friends, and familey thay our job is to make her comfortable, I understand thats all that can be done for her now, but friends, and fam, are no whare to be seen not now not ever, oh sorry once a year on her birthday her sister, and brother visit. thay both live 10min away. I guese im just so so so so so mentaly and physicaly, tiard, and worried about my husbands healt, and concerned about my daughter who is gona have our first grand child in dec. my daughter also lives with us. The price we have paied in taking care of my mom in law has been higher, then we ever, ever thought it would be.
This is exactly what I've learned to do. You've stated it better than I ever could have. Initially I had a battle with myself about being cold and unfeeling. But I learned that I have to protect myself emotionally and mentally or there wouldn't be anything of me left. I also discovered that if I didn't do that I might say or do harmful things to Dad. I never did, but I don't like the thoughts that came into my mind sometimes. It's best for you and her if you take care of yourself. Many blessings to you!
Marly, the decision to send mom to a nursing home was verry difficult. We considered moving her into our home, but we have small kids and my wife and I were both working full time. There was no way we could do that. My sister-in-law was a speech therapist at the home where mom was placed, so we were much more fortunate than most. Also, it was five minutes from my home, so I was able to drop in frequently. When dad was diagnosed with an aggressive Lymphoma he wanted to contionue to care for her at home, but he got very sick (intensive care) and doctors said the stress of caring for mom would kill him. We all have tough choices to make in life. I agree with Marly, in that nursing home should be last resort. There were people in the memory-care section with mom that were there for years with no family visits. It still breaks my heart.
Your reply wouldn't have been any different than my own. After looking after clients that I had during my years as a Caregiver, one with Dementia/Alzheimers' it certainly isn't the easiest route to go. However for the most of us we dont' like to send our parents/IL's to a Nursing Home, it not somewhere they wantt be nor someplace that you yourself would wan t to put them in. As you said questions being repeated, turn up that sound as we would say. We are only people ourselves with no hope from help from family, at least this is what I found out. You basically have to go with the flow, dont' argue as much as you would like to, your not hurting them you are hurting yourself. Stress is an alltime factor and we all need to vent. We need help in looking after caring for our IL for a family member. Thiis is why it is so important to have "me time" or as we say time out. You cant' go at something 24/7. "Burnout is definetly the word. Stress causes' so many factors' in our lives' in and we dont' even know it. My heart goes out to the Poster and I do hope she gets help through the Government funding, via the Access Centre and her Physician. Again big, big hugs, lots of caring and undertanding. One cannot do this alone, it a family affair. Thank you again for your support youhave said some remarkable things,I'm sure you will be blessed for your support, in the meantime I am sending you a Big Bear Hugs and lots of love and happiness, Take aare:)
My dad went through this with mother. It was really bad because she thought he was her helper, but not her husband. She wanted him nearby, but wanted him out of her house and her bed at night. It was very stressful for dad. We would stay with her for the weekends, so he could take little trips to visit other kids and grandkids. We would get sitters for mom and take him to dinner. Any little break makes a big difference for the caregiver, but you MUST find a way to take a break. Hang in there!
I have a friend whose husband is in late stage dementia and Parkinsons. I am going to read this to her tonight.
Thanks Emily, sometimes I don't know how to get through the days, but knowing there are other poeple out there who suffer from this, well it both helps but also saddenns me, I would not wish this on anybody!
Hello Anonymous, Thank you for your comment. I am very sorry to hear about your stressful situation. Here are some resources that you may find helpful: We have a wonderful area on our site for Alzheimer's support here: ( http://www.caring.com/alzheimers-support ), and resources about coping with caregiving and caregiver health are here: ( http://www.caring.com/just-for-caregivers ). You also may want to consider Adult Day Care ( http://www.caring.com/local/adult-day-care ) or contacting your local Area Agency on Aging for additional assistance ( http://www.caring.com/local/area-agency-on-aging ). I hope that helps. Take care -- Emily | Community Manager
I am suffering from burnout right now so bad just reading this is making me cry because noone including my father seems to get just how serios burnout can be. My mother also has severe Altzhiemer's and I am her paid caregiver, my father pushed me to move in because he can't handle her by himself, but I also have 3 kids, ages 13, 12, and 9, and I am head coach of my son's football team. Just in the last week I have been in tears almost constanly, and I can't help but feel guilty all the time, even though I know I shouldn't! My mother also suffers from chronic pain and is at a constant falling risk. I have NEVER been so miserable, nor have my children. My dad's expectations of me are unrealistic, to say the least, if I'm sick or down it just does not matter to him. At this point I seriosly don't know what to do!
In addition to the many great tips that have already been shared (from both Carol and the anonymous caregiver in the previous comment), it can also help to talk to others facing similar challenges. Here are some online support groups for Alzheimer's caregivers that are available at any time: http://www.caring.com/alzheimers-support
You really have to at times pull yourself away from a situation. Yes you may feel guilty "BUT DONT". In the beginning of caring for my father in law I bent over backwards. That started 5yrs.ago. I find now if he knows' I'm going somewhere its' "can I come" and I say "no". When I go out of course I worry somewhat but I really know that my FIL isn't going to do something out of character. Its just like he always liked spaghetti, now if I cook spaghetti, make a macaroni casserole, his reply "are we broke", the first time he said that I started laughing. I said "no" we do enjoy this meal very much at times. He will say he is being made to eat something he doesn't want to. At the end of the meal, guess who's plate/bowl is the cleanest? You got it, his. I have caught on to so many of his pranks that I'm ahead of the game and smiling going out of the door. I as well have a Caregiver twice a wk. During the course of the wk. it is only 5hrs. but I honestly can say, either I'm going out or I'm lying down with a very good book. Dont' ever feel guilty about what you have/haven't done. You have basically given your life over to your loved one, and I for one know what that feels like. Always and I mean always, look in the mirror and tell yourself I am a wonderful person, I'm caring, I am always here day/night, I am loving, devoted and I deserve attention myself. If you keep repeating this over and over again, it will finally kick in like "Hey" I'm only one person, that one person who has given up everything to take on this responsibility. This is so true. Make plans for yourself the day your Caregiver is there. Go visiting, shopping, have a nap, just pretend that you are the only one and dammit I'm doing this today. Go girl "Go" You dont' need that burn out so take advantage of that so very precious time. I used to stay in day after day, worried that something would happen and then the light bulb went off. Why do I have a Caregiver who is educated in this field, can do whatever you yourself do. Give her a pat on the back. Caregivers' dont' get paid what they so deserve in our real world, and they are steady going usually from 7am. to 7pm. daily with every other wknd. off.Trust in what others' are telling you but most of all "Trust You". You can be that person you once were prior to it just takes a little time. Really think of how much time you yourself have put into the caring, meals, changing clothing, the list could go on. It will be real quiet and you pull the vaccuum out to vaccuum, all of a sudden somebody wants something, am I right? Keep doing what your doing and then tend to them unless it is impairitive that you have to stop, I am you, only in another home but with the same rituals each day. Take the break you so much deserve. Reward yourself or tell your family that you need to be rewarded even if it means you have to get downright grumpy!! Take care hon, those who take care of others will be taken care of themselves, only on a much higher level. Hope your week is going wonderfully well, Enjoy every minute of solitude you can get or whatever puts that beautiful smile on your face daily, even when you dont' want to. My heart goes out to you.Sending a Huge Hug and saying a Prayer for you as well as so many more who are both of us!!