Hi, I'm in college, living at home, and am a caregiver for my brother who is autistic and has TS and my mother who has physical and mental problems. I'm trying to find a place where I can talk to other people who have similar situations. I'm 24 and my brother is 27. I have more hands on care with my brother b/c he needs 24/7 supervision. My mother's care is a bit more low level. I get frustrated though b/c alot of boards I've tried are older people taking care of older people but nobody my age. Is there anyone out there who can relate? Also, I'd like some advice about dealing with caregiver burnout and anger issues related to caregiving. Thanks alot.
I am 37....if that counts?? I take care of a difficult to please mother and now my older hubby has gotten ill (well hurt very bad at work and almost died from brain aneurysm) so he's kinda not the same...and he has terrible back trouble..(the work injury well 2nd one) he's had two lower back surgeries and one neck, 2 brain ops, four legs ops for first injury. He can't function at all sexually now because of that dam* back problem...and is slower mentally....I can't deal..at all..and I can relate to burnout big time honey..I'm way past it I think.....cinders....maybe....God bless you for all that you do...I can't even work....I've tried but someone usually ended up in the hospital....they were tag teaming me at one point, now I have to handle both our business and my mom's....it's not easy in the least....the hardest thing I've ever done...and I'm tired.....I want to stop....but I can't....your not alone....by no means...hang in there...
I honestly have to say I don't know..I just keep plugging and I have gotten into some issues with addiction to pain pills...I'm trying to quit...my long story is posted on addiction and recovery if you care to look it's Cold turkey or dose down:
anyway I do love my mom despite her problems..I just try to think of her as she used to be, and I made her a promise..there may come a day when I'll have to break that promise and put her in a home. I pray and ask God for his help in this..he must have a purpose for me to have gone thru all this. I had even tried to commit suicide in 97 (right after my dad died) when my hubby's then drinking got bad, didn't faze him, so for three years we fought and he had his clothes in a Glad bag more than the closet. Lost his liscense alot more than he's had them. But now we're fine, he's fine as regards his drinking..I think his meds help some craving in his brain ..I hope....there are so many many people out there doing this...because they can't afford a home or don't want to. We're not alone....but hang in and whatever don"t self medicate...like me..it only makes things a hundred times worse.
With Loving support to you Please reply to me anytime....I'll help you as best I can...just listening is sometimes helpful.
Don't know how much advice I can offer, but I definitely feel for you...
I was raised by my grandparents, my grandmother died when I was sixteen, then my grandfather got cancer (terminal) when I was a sophomore in college. I was his primary caregiver. It was one of the toughest things I ever did. It was so hard to deal with school on top of providing care for him. I was so physically and emotionally drained every single day, I am not sure how I did it. Your situation is a little different, as mine was temporary, due to the nature of my grandfathers illness. As awful as it was, I am proud of the fact that I was able to do it somehow, and I am glad that I was able to provide care and some comfort to my grandfather who I loved immensely. I know what you mean by feeling burned out...I basically just wanted to crawl into my bed and hide on a daily basis. Do you have someone who can relieve you for a little while? Sometimes you have to get away and have some time for yourself, it does help a little. Sorry I'm not being too much help here, I just wanted you to know that you're not alone. I wish you strength...and good luck.
One more thing...
Don't know if this would help or not but I kept a journal and when I was feeling angry or resentful or whatever I would just pour out all of my feelings into the journal and it did help. Sometimes I would just feel so resentful that all of my friends were out having a good time and I was having such a tough time, that it was good to be able to vent all my frustrations and whatnot, and I could write whatever I was feeling, it was very cathartic.
One day, when I have more energy, I'd like to share my story because I experience much of your frustation as a full time caregiver. When I can't manage day to day, I concentrate on managing minute by minute ... and then things change. Most times this really helps me.
The journal idea is a great one too. I am a caregiver for my husband and we are also not in the "elder" catagory. I'll try to give you more input when I can but hope it will help that I know you are doing something that can only be understood by others that have been through it. One step at a time and I believe that you can find a way through this.
I'm a little older (27), but still working on my degree!
I am the primary caregiver for my husband, who has a long term disability, with no end in sight. The thing that is the most difficult to deal with is the anger I feel towards him, the situation, his family for not helping more, etc, etc, etc. Basically I am just always angry. And then I feel guilty, because I know it's not his fault.
The thing that helped me the most was joining a support group. Look hard to see if you can find one in your area. It has really helped to have other people who understand what I am going through. My family and friends try, but only people who have actually been there really get it. Also, it just helps to have a few hours a month were I can complain and whine without feeling guilty.
I am currently looking into getting some respite care. Having family help on a set schedule helps too. When I know that there will be a block of time coming up that will just be for me, with no worries about him I can make it a little easier. Just knowing that (even temporary) relief is in sight really helps.
I agree ... the toughest thing is that people that haven't been there do not understand. Friends and family try ti care but after a while they seem to get bored with long term problems. They have their own lives, I understand, but don't realize that our problems are constant. No vacations for us. Sometimes it feels okay to know that I am doing good by helping my wonderful husband but sometimes I just want to rest.
Angerfillsme...how are you doing?? I'm hanging in....doing a little better I had a blood test to check for arthritis..it was negative YEAH! So now I have to wonder if my friends right and I have fibromyalgia....anyway....I sure hope our support can help...and it can if you can find a group like someone said...shortly after my dad was killed (hit by a car as a pedestrian) there was one started, I was with people who'd lost their teenage son, one woman who'd lost 2 sons, one had lost a father, one a husband....it was very helpful and ironic that it came at that exact time...they don't have it anymore...my dad's been gone 7 years now...so it's been awhile.
Caring for your husband at such a young age..I am wondering what happened to him...mine got hurt at work..not once but twice and he's had 5 surgeries total from that, 2 on his lower back..it's messed his back up good, I am just wondering if your like me going along happily with your life together and it gets thrown in the blender...the man I married is long gone and never to come back..and he can't help it...the only anger I have towards him is when he wants to give up and let them win and not fight....so I fight for us, along with the other mess I got on my hands...at least we don't have any children....not that I didn't want any...just never could..and now it seems to be a blessing in disguise...I couldn't handle anymore demands on me, but then again I wonder if I wouldn't rise to and above the "occassion" as they say. I'm 37 and he's 50..so he just kinda turned into an old man overnight...the age thing never bothered me, but once he's went down hill it shows more, I find myself mourning what we had, crying my eyes out to have him hold me and be able to do things like he used to, and to top it all off he almost dies on me last year from a ruptured brain aneurysm, he lived and is fairly o.k. only one in 4 live and are anykind of normal....guess he's that one....but it was he** on earth..I thought I'd lost him.....he has some memory (short term) problems, but as I can tell that's about it from the mental part...the rest may be due to brain damage, or his heavy pain meds?
I have to do all the paperwork for and fight with workers comp and lawyers and doctors for him, for us. I never expected all this to happen, but as some song I've heard goes, you life can change in a moments notice. or something like that...
iam 38 have been taking care of my grandfather for 13 years as the years go by the care gets harder at least he doesn't require that iam there 24/7 but iam there 4 times a day 7 days a week and take him to many many appointments is memory is bad really shouldn't be living a lone but wouldn't won't go to a nursing home tried it for 2 weeks at a time on 2 occations but that didn't work out either time i also have a son with severe depression attempting to help him worried he might hurt himself and worry about his missoury and all so 2 other childern that require attention to and a husband that has depression too and can't or won't offer much support cause he can't handle any stress well and a full time stressful job in healthcare so i understand your stress and feeling a lone in your battle of needing to care for your loved one hang in there i keep telling my self someday my reward will come and so will yours
i was a paramedic for a number of years and eventually found myself getting angry with patients. this was followed with a cascading effect of other mental health problems. i know the anger had nothing to do with how much i cared, or how compassionate i was. but it sounds like you may definately be headed down that road to burnout. we can only give so much of ourselves before there is nothing else to give. i guess my advice is ,just be careful and remember to take care of yourself. if you dont you wont be able to take care of someone else.
i am in the same sort of situation as you too...im 22 and taking care of my 20 year old sister who is a quadraplegic. it was very hard for me because we were about the same size and i started having back problems. it got mentally and physically hard for me and i felt like i was being selfish for not wanting to help her out at times....i felt like i was going to burst. i dont really know how things changed but they have gotten better and i hope yours do too...good luck
I understand completely about the anger. Its normal. I feel that at times myself and feel like screaming. I've been a career since I was a 16. I'm now 18. I care for my grandmother who has heart problems, arthritis which is wearing away her spine (she can still get about luckily) and diabetes along with a kidney problem. I also care for my mother who has a mental problem (but this is more low key caring) and my father who is terminally ill. I'm also a college student, a qualified counsellor and studying towards 2 more diplomas. I'm putting the counselling off for a while until I know for definite what I want to do. Its hard work and very tireing but knowing your doing this because you love them is what gets you through and knowing your easing their pain or suffering or making life easier for them. Every bit counts.
Forgot to add: My cousins and my aunty (my grandmothers sister and grandchildren and dads sister and nephews) wont help at all. They say I should be able to handle everything myself and dont believe either of the above (grandmother, dad and mum) are as ill as I claim they are. Some family I have, lol.
I can see by your user name that you are feeling frustrated. It is sad that someone as young as you are has to go through this, but I am sure there are many more out there - we just don't know about them. I can relate to what you are going through, and may I say, in a bigger way? I am much older than you are, but I am a parent to two mentally handicapped boys. The older one is 24 years old, and the younger one is 17. Both are in nappies, both cannot talk, the younger cannot walk, and both need 24/7 care. I suffer from fibromyalgia and on top of this I have to work. My husband took a voluntary retrenchment package 3 years ago, so finances are very tight. And, we had a lot of issues with him drinking, but he really does try and control it. It is an extremely difficult situation. However, I have my faith which keeps me going. Some days are worse than others. In this country, putting the boys into an institution is not an option - the government focusses on the family and community caring for people like them. My main concern is that I will not be physically able to care for them indefinitely.
All I can suggest is that you keep posting on boards like this one. There are caring people out there who cannot do anything materially or physically for you, but there are plenty of listening ears and shoulders to cry on!