Caregiver Stress Syndrome: Who's Most Stressed?

How about caregiver to children/toddlers with early onset bipolar/autistic traits with severe ADHD 1 and 2. And the rest are there but minor

I find it interesting that at the point of absolute burnout and being beyond stress (my sig other who I live with has ALS for almost 30 years, is vented, a full quad, can't talk and must always have someone with him, also has terminal cancer. I am his primary caregiver) that when you ask for help you only get a couple of things. 1) Here's what you need to do, blah blah blah 2) dump the responsibility on someone else, also called put him in a home of some sort (this truly is NOT a solution because his flat-line needs outweigh any homes ability to care for him and most won't do it 3) just hang in there...I am here to say all three choices are garbage and not what you want to hear. What you want to hear is someone to say, "How can I be of assistance?" "How can I help ease your load?" "Give me a task that I can do that would make your day easier!" Something you NEVER, EVER, EVER HEAR. If you hear me, and I am asking for help the by GOD offer help and not some empty words of useless empty encouragement.

Is there a diagnostic code for a professional caregiver, such as a staffer caring for the MRDD in a group home?

I live and take care of my mom and dad. I'm 53 years old and feel stressed and overwhelmed. I'm an RN and about a year ago I was attacked by a patient. Which left me with a herniated disk in my neck and back. My moms always giving me the guilt trip by sating, " you said you would take care of us." She has extra money to pay for extra help, but refuses. Acts like she doesn't have no money. What should I do? I'm just so stressed out.

With the questions on gender and children, I get the sense that it means women versus men in married couples who are caretakers together, and young children among those who have children. As a 34-year old single man who took care first of my mother until her death after her heart problems surfaced and is now taking care alone of my crippled father (who turns 80 next month, doesn't drive, and has decided that returning to alcoholism is a good hobby), I don't even know how to score things. The irony is that, as a guy with nasty fibromyalgia & neuropathy, I should probably have a caretaker of my own, but it was decided by my family that I was the single one, so I got drafted when both parents took ill -- therefore, back to the hometown where I had to give up my field of study and start over with barely-minimum wage part-time labor to support myself and scrape by basic medical insurance for my own medication, I went! The actually worst thing is the creeping realization that, as I spend the whole of my youth taking care of the parents who made my childhood hell, I won't actually have anyone to do the same for me as I age (my brothers are married but opted to not have kids, despite their high incomes -- I'll end up in a forgotten corner of the local Catholic charity home more than likely, if the situation with my parents is any indication)...

I answered this question a year ago & altho I was 5 for 7 (no kids but didn't think about not having a choice--see my comment below) then, I'm pretty much 6 for 7 now. I have been feeling as if I don't have a choice about what I do for my husband vs. what his professional caregiver does for him. For a long time he was able to do pretty much all his daily routines, e.g. dressing, eating, & so on and always knew me and where he was and would ride in the car & give accurate directions to everyplace, no language problems, but in the last year especially the last 6 months he has declined a lot. The general pattern was: when he was terribly sick we had 2 caregivers & they did everything for him, he couldn't walk, talk in any intelligible way, even stand, was incontinent, they literally slept in our bedroom so as to catch him & keep him from falling when he tried to get up to pee (couldn't learn to use a urinal in the bed even if somebody held it for him), change his diaper & bed when necessary, clean him up if he had a bm in his pants at home or if we were out somewhere, etc. But he gradually got better, threw them out of the bedroom, learned to take his own shower, went back to bike riding, even driving until we stopped it--I thought this is my miracle husband! He will be the one who recovers! It was all a mistake! But recently he's increasingly shadowing, more persistent with repeated questions, more &more in need of minute directions, & I kept doing what I'd been doing but it's increased to the point where I'm starting to dread it. He needs so much! I didn't think I'd ever consider placing him but it has started to seem like a really good idea--I just can't be with him every minute & be both a wife/companion and a physical & dementia caregiver & think up stuff for him to do--but I'm also thinking wait a minute, he likes being at home & I can afford to pay for help--I'm going to "convert" our caregiver back into a caregiver. I worried he (caregiver a man) wouldn't want to do it or would think it better for my husband if I did it--one of the things he's done, and rather well, is to try to preserve my husband's feeling of independence, and let him do whatever he can & just keep him safe, & the cg helps ME with laundry, shopping, cleaning, &c as well as driving & so on--he's said "anything I do to help you helps CJ". I floated the idea w/the caregiver this morning, thinking he'd argue with me (CJ says he's a know-it-all and I think he's correct--but CJ & I are both know-it-alls so that's why it bothers us haha), but he said "I just want to do what you want me to do!" Now the only thing is to figure out exactly what that is--and then to implement it, given that CJ rejects almost ALL help from him with personal stuff. And our caregiver can't bash him over the head & drag him in the shower by the ponytail--and most of the personal care is either done by me or cajoled by me now--he'll take a shower if I want him to but won't stand it from the caregiver. But--I NEED this, and if I placed him, well, that's the stuff they'd do for him (in any place I'd be willing to put him, that is!) Maybe I'll give my doctor this article & ask her what I should do & see what she says. I met her through a lecture she gave on "caring for the caregiver" and she is a geriatrician--I just haven't had time to take MYSELF to her because I've been so busy taking CJ to her...

Very useful information and well written/explained. Sometimes it's just too late that you realize you've become a caregiver. When you reach your breaking point, then that's only the time you start taking a hard look at yourself. You are just stressed and irritable all day and you don't even know what's causing it, you just feel tired all the time. By being able to detect signs around you and taking an objective look at your situation, I think you can deal with caregiver stress more promptly/properly before it's too late. Thanks for writing about this topic. iWilliams http://www.freeltcquotes.com/

I'm 5 for 7--no kids and I of course "have a choice", but have been married to DH for 35 yrs and can't imagine not caring for him. I was struck by the last paragraph of the article regarding the people who don't know they are caregivers--most notably WIVES: DH had several infections resulting in a diagnosis of vascular dementia 2-1/2 yrs ago, which made me realize that he'd been declining cognitively for about 10 years but I couldn't or wouldn't realize it, just kept taking over more & more of what he used to do. But much more recently I realized that I started being a caregiver when he started having physical problems over 20 yrs ago--a kidney cancer (removed, no recurrence, but a BIG surgery), a mysterious progressive lower body weakness which took 19 months & 22 doctors to diagnose as a spinal dural arteriovenous malformation interfering with the blood flow to his spinal cord (again, surgically corrected but with sensory alterations from the waist down), a small bowel obstruction requiring emergency surgery to remove adhesions (uneventful recovery), all between 1990 & 1993. Then a few years of relief before the spinal curvature/back pain started in 2000 or 2001, and once more an insidiously progressive gait alteration now clearly a result of his increasing dementia. So, I've really been a caregiver since 1990! Most of our 35 - year marriage...and yes. I had two severe episodes of major depressive disorder, in 2003 and 2007, didn't know why then but it's obvious now. Lots of therapy but neither I nor therapist could see his dementia...spent all our time digging around in my childhood.

Dear anonymous: you did not cause this disease in your spouse, you did everything possible to find him when he got lost. You did not fail your husband. You are forgiven for being human. Do not continue to beat yourself up, for the past can not be changed, but the future is that your spouse still needs you even while at the end of their lives. They would want to take your pain away and they would want you to live a happy life not one filled with sorrow. Keep using the antidepressants. try not to dwell on the past. Sit and make a list of what you can do for your loved one now and what you need to do to plan for the next hour, the next day, the next week. I can see how deeply you love him and I know that you are very strong to get this far. You are still the rock that he needs at this time.

Thanks a lot.This was helpful but unluckily I can no longer care for my husband at home because he has been in hospital for 3 weeks now and has become bedridden and is fading away fast. He used to go out walking for about 45 minutes and I had been trying to stop him from going out by himself and on the 5th of February he did'nt come back as usual and he spent the night in the cold and was found the morning and taken to hospital, but a few days later he started dederiorating. I have not stopped crying since then and now I am on antidepressants. I hope that no one has to go trough the same experience as me after failing my husband. I had been stressed that week as I was sick and I had to take care of him and do the chores as usual though I was ill with a bad cough for a week. I wish that I can be forgiven because I feel that this is the worst mistake that I did through my whole life.

Might add caring for more than one individual with disabilities to this list!

Hi "I failed" are you the "anonymous" poster from earlier? If so join me on Alz.connected under caregiver forum and click the link to the chat room and we can chat, if you want. Lisa

To know there are others in the same boat. To know I am not all alone. It's like meeting with other parnets when my child was in school and hear them talk about the same problems and situations. Plop, Plop, Oh what a relief it is!

Hello Anonymous, Thank you for sharing your caregiving challenges with our community. Please do not hesitate to seek help offline. Depression (and/or thoughts of suicide) is a serious health problem that requires attention and care from a doctor or licensed medical professional offline. This is not a problem that can be resolved in an online forum or in the comments section of articles on our website. The Alzheimer's Association 24/7 Helpline provides reliable information and support to all those who need assistance. Call us toll-free anytime day or night at 1.800.272.3900. You can learn more about the Alzheimer's Associate at http://www.alz.org/we_can_help_24_7_helpline.asp You may also find help offline by calling 911 or a toll-free crisis hotline, such as 1-800-784-2433 or 1-800-273-8255."¨ "¨

To anonymous: Hang in there, I know it's hard but try to forgive yourself. If you asked your husband for forgiveness that's all you can do. Try to find some sources of support, an Alzheimer's support group, an on-line blog, keep coming here, physical exercise can also be very theraputic and help you to get "out" of yourself. My mom has not wandered yet, as she isn't stable on her feet and I think also is afraid of the "people" that might be outside. I will pray for you and your husband's recovery from all this. May God give you rest.

My breaking point came when I let my husband who is 64 ( I am 57) and suffers from a late stage of alzheimers go out as usual as I used to let him go out by himself . I taught it was still early to stop his outings as he was only diagnosed 8 months ago. He went out on 5th of feb. and he did not get back we looked for him during the night and in the morning he was found by a fisherman lying down next to a boat and they took him to hospital and he had two cuts in his head and bruises as he had fallen and he spent the whole night lying on the floor wet and wounded and at the hospital he looked normal. he had eaten for two days than he started pulling off the drip and things that were stuck to him and he even kicked at the nurses and tried to bite them as well. He used to get agrassive even when he was younger. Now he is with a catheter a tube for feeding and a tube for oxygen and he is all stiff and with his hands wrapped in bandages so he can't pull at the tubes etc. He is in a sorry state and I am in a worse sorry state than him as I can't stop blaming myself for not being able to control him and take better care of him as was my duty to do as he was not responsible for himself . I have been crying constantly and talking to every person I meet even strangers about what I did and I am wishing I would die. I am scared to ask the for some sedatives as I may not be able to go and visit him. I have been taking care of him by myself and I taught I could handle him but I failed. I am living the memory of that moment constantly and imagine how I could have easely stopped him from going out but I failed . I have lost the chance to see how his illness was going to progress by my action and I can't forgive myself even though everyone tells me that it was destiny, and something else might have happened if I did not let him go out. I even cried and asked him for forgiveness but I don't know if he heard me and he can't talk . Before this happened he was only speaking short phrases. last August we had to stop him from driving, I used to bathe him and he could not chew his food properly and I started to give him soft food . I have been to lot during my life but this is the worst nitghmare for me.

Aceman, Tell your wife to hang in there. This is not an easy journey. Be sure you get plenty of help for yourselves and give yourselves breaks. I hire a caregiver for 2 days a week to stay with my mom from 9 to 5, she has the resources to do that, but if you don't there are other resources that can help you. I stress getting time to yourself is a must. I didn't do this at first and ended up spending 10 days in a pych. ward for depression because of it! That was a year ago and now I'm coping much better. But it wasn't until I realized I "couldn't do it all" that I got better.

How do wwe cope with this my wife is about to go nuts!!

What do I do now that I know

This was a very helpful article because it gave a name to the type of stress I'm experienceing, "caregiver stress syndrome". I was told about this when I first started taking care of mom, by a VA nurse and I had forgotten the name of it, been looking for it ever since. The other thing that was helpful about this article was "How stressed are you?" This helped me gage what I need to do to help myself. I am in the sandwich generation (I have a teenager) and I care for my mom in my home, mom has Alzheimer's, and I am in a position where I feel like I have no choice, but to care for her, because in August 2011 I put her in the VA home after we'd been waiting a year and a half for her name to come up and I finally put her in a home, only to have to take her out again in November of 2011, because I wasn't able to find a job in the two months she was in the home and the VA Aid & Attendence that I was getting to care for her started going to the VA home, so I had to bring her home to have an income. I am currently working on starting my own home care business so this doesn't happen again when she passes or her name (which went back on the VA list) comes up again in two years (how long the waiting list is now).