[MsRriO]

Anyone else out there that has gone through their caregivers burning out?


My husband has enough on his plate with recovering from his heart attack nine months ago, and dealing with his own very stressful job. He is really struggling to cope with all the extra duties since my injury. He does all the grocery shopping, all meal preparation, general cleaning, all laundry, all vehicle maintenance and house/yard maintenance, plus majority of parenting outings, coached hockey, plus his own job and daily workouts.


The guy just falls into bed exhausted every night and I feel so much guilt.


I'm wondering if (even though I'm in a lot of pain) I should just do more and push through it, to relieve him. I hate to see him stressed out and carrying burdens, the biggest of which is me. Is that what you all do to prevent caregiver burnout? Just do more?


I do try to do things when I feel less awful, but every time I try more, in a couple days I hurt more again. Today for example is a typical Sunday. I'm fried by this time because of having to be a family participant all weekend. Once they return to school and work I have some relief in the daytime. (Sweet solitude and silence)


I wish I could repay him or give him a well deserved break. I hate contributing to his stress level. What would you do?

[Brain patch]

Hello MsRrio,
I also worry about being a burden. My poor mom is taking care of my dad with Parkinson's disease and me with traumatic brain injury. I like you feel bad about it all the time.
What I do is I help with housework when I can. I take breaks often but manage to do laundry, clean bathroom, keep my rooms clean. I try to get the pressure off her by being home with my dad and looking after him while my mom gets away and goes shopping or to lunch with her sister and friends.
Just try to do some small thing each day that helps like a few loads of laundry or if your feeling especially good the dishes. You need to get your kids to help more. Have them take out garbage and do anything they can do.
If you have a day or some days when you can't do anything. Don't worry about it so much. Lower your standards. I know it is hard but everything does not have to be all done and clean all the time. Do what you can and don't worry about the rest. There are some activities that your husband is doing that he could cut out. Like the sports coaching etc. He may be dealing with it just fine and it is just you worried about it. Have you asked him?
Hang in there. I know it is hard having to be on the sidelines when your used to doing it all. Remember lower expectations.
Brain

["Starr"]

No advice here, just wondering how you manage to find someone to be a caregiver??

I hit my 1 year anniversary last month and since my injury, I've been the one responsible for laundry, dishes, grocery shopping, meal prep, managing the garbage, chauffeuring... the only household thing I get out of is vacuuming and walking the dogs.

I still run the hobby farm side of things with the goats and chickens, I do all the mucking, snow removal, picking up loads of hay, unloading hay, chores 4 times a day, hoof trimming, etc.

I'm still responsible for schedule the vehicles for maintenance and taking them there, in the summer, I cut grass with the riding mower (sounds easy but the bouncing around and noise is brutal).

We're just about to start a bathroom/laundry room reno that will find me painting, plumbing and installing hardwood flooring.

Clearly, I'm doing something very wrong. I'm exhausted and overwhelmed. Where do *I* find me a caregiver?!
Starr

[cyclecrash]

Finding a "caregiver" would just be more work to add to your list! You'd have to find time in your busy schedule to go out and look for one. They are VERY hard to find, in fact most of them are probably already taken!

don't have one either but my husband has tried a little. Its not the physical stuff I need the most help with anyhow its the brain work! I do all the planning, decision making, problem solving, etc from big stuff down to little minor things (should I eat this with a fork or spoon is a recent example) and sometimes I wish he'd use his brain and let mine rest!

MsRrio, this might be an example of what my neurosurgeon was talking about where you might get more benefit by trying little things instead of resting more. Perhaps you would feel happier/less stressed if you made a simple supper to help out even if it causes a slight increase in symptoms at first?

You will learn workarounds that will help make it easier and you will feel a sense of accomplishment when done. Up until this last month or so it was very strict rule that nobody could talk to me while I was cooking. My husband had to help in silence if it was something he could help me with or go away till I was done! Try and make something huge on a quiet day when they're not home so you have leftovers for busy weekends.

If you have a bit more energy in the morning, put something in a slow cooker so its done when you're tired at dinner time. I find weekends when everyones home exhausting too. Perhaps you need some strategies to get through those days better. More quiet?

I know you still have lots of symptoms but what are the worst ones now and who are you seeing? Are you still seeing the neuropsych or was it just for the test? Any results yet? Are you seeing anyone else (physio, eye dov, etc)

I hope I haven't worded any of this wrong. I'm not thinking too clearly today but I wanted to try to help. Take care
CC

[Su seb]

The only way you are going to get out of doing them, is to stop doing them. Then either they don't get done, you ask someone else to do them or someone picks up the slack.
I like doing everything. But I can't anymore. This weekend I really wanted to go to the grocery store by myself and try to pick up about fifteen things. I couldn't handle it. I cried the whole way home and it ruined my day. The visual and mental stimulation was too much.
Sometimes we need to learn new ways of getting things done. I haven't figured it out yet. It sucks.

[Su seb]

And yes me husband is sick of this. I think he is also embarrassed by it. He is a businessman and we are expected to entertain clients and my brain doesn't work well enough for eloquent conversation.

[MiaVita2012]

I need one but I am already out of the acute stage(thank higher power)My parents are taking care of my love because I have to do me and all the MDs say it's not being selfish...I struggle with this but my love needs me when I get better...

My love is in a safe place and taken care of and loved. My mother takes me to some of my appts like vestibular because I can't drive and she does not trust any community support to drive me...

Otherwise I try to clean which is hard after a hour because I have to put a back brace on and I do not suppose to bend over at all...seems like a very hard task!lol!Never thought any of this....I know when my jaw gets wired shut I will need a lot more help but do not trust some random person in my house like that. Keep you head up

[MsRriO]

I'm very thankful that in this acute stage I have my husband. He is beyond amazing and wonderful. I also think he is using this time almost to thank me for being there for him through his own health crisis.

I just have enormous guilt because I'm usually the caregiver. Brain patch, I have asked him if its too much and he says only sometimes. He always says I'm wonderful and worth it, but I just feel like he's wearing out.

As far as what I contribute... I do some very basic meals, some dishes, clean bathrooms, floors, put away laundry, help with homework, and organize things. The yard (snow removal) is done by a friend of ours. I take frequent breaks and don't do much at once. It's just so foreign to hand over all control of the major stuff, to my partner. So it feels like my contributions are... well... nothing. My main roles are gone.

Thank goodness I have WCB income because without income I would feel like even more of a drain. Four months post injury and I'm struggling to define my new self.

Starr I'm amazed at all you do. How strong you are! I think if my husband hadn't literally died to his old self (twice in the ER) this past year, there's no way he'd be doing all this. So it's a mixed blessing. We've been to hell and back together. If I didn't sound grateful in my first post I certainly feel badly for that, because I am truly indebted to my partner and thank the heavens for him. Thus the worry, for him, and not myself.

CC, as always, good advice. My symptoms haven't changed (in my signature line) the biggest issue is debilitating head and neck pain. The NP I saw was just for WCB satisfaction. On bad days with migraine (today was one) I rest a lot, ice a lot. But even today I organized my son's room between rest periods. On better days, I do household tasks just not like I used to. And I feel so badly for this man who is so wonderful, I never feel as though I deserve him. I'm grateful beyond words. I just hope he is coping... He doesn't let his stress show much because he worries about me, yet I worry about him. Vicious cycle of anxious people I guess.

Su seb, I do relate to your grocery store issue, very much! I hope things start to turn around for us!

MiaVita, I wish everyone had a caregiver like mine! Thank you for your compassion. I hoped I didn't give the impression that I wasn't grateful.

So I take it no one's caregiver ever burned out before because I'm the only one lucky enough to have one?

I noticed no males responded either. That may mean female caregivers don't suffer burn out, or convalescing males just don't notice. (Lol JK JK JK!)

Overall the impression I get is, I best shut my mouth and do something nice for him, and hope it's enough for another week of dealing with a totally changed partner. Okie dokie!

[Brain patch]

Listen people-you do not find yourself a caregiver. You can either rest and yes be out of work and money and have stuff not done or you can push yourself to the breaking point. Trust me you have one. I pushed myself to the breaking point. Ended up taking extra strength Excederin all day and Lortab all night along with Valium so that I could keep working and functioning. One day my mind/body just broke (and I consider myself a badass) hallucinated while driving, crashed car into a wall, took more Lortab and Excederin because oh **** now I am going to really hurt. Ended up in hospital with liver/kidney failure having all my family members coming in to say "goodbye" to me. I did die, had a near death experience and by the grace of god am alive today with nearly fully healed liver/kidneys. My family has had no choice but to help me. It is not like I expect them to nurse me or do anything really other than give me a place to rest and some food. So I tell you that the condition you have is serious. You may have problems for life. I have not returned to anywhere near functioning as before. I have been in pain everyday since 2006. The Neuropsychologists are saying "you know we aren't going to be able to return you to your past life but we can help so that maybe you can be independent again." You have two choices. Rest or something similar to the above experience will occur to you and I cannot guarantee you will come out of it alive. I was too arrogant to rest. Had a high power executive job, high roller, drove sports car, was very smart.
I am sorry for the brutal truth people but here it is. I don't want that to happen to any of you. Please hear what I am telling you.
Brain

[Concussion]

My income was the source of income at home; until April 2012.

My injury was June 2010. I pushed til I couldn't anymore with work, with meds, struggled on auto- pilot, FMLA, etc. and finally lost the battle to the evolution of the symptoms in my nutshell and sig.

My wife has tried to understand, and tried to be there for this, and worked thru some of it. However, my father-in-law is also in the house, and has his own problems - including thinking the world revolves around him, since he is her father, and this used to be his home - we took over years ago when his wife had breast Cancer and passed away over 15 years ago......and his problems center around mini-strokes and debilitating arthritis which he fails to acknowledge and will one day cause an accident from which others will suffer and he also.

She is at her limits, and at times when we have our problems will state - "you know there are two of us in this relationship" - to which my retort , cruel but succinct is " yep, and this one is brain broke" ......if I even give a response other then walking away, crying......

If I don't cry, my rage wins and I will break things, rage filled with no recourse because I was not able to "fix" our world.........

I understand what you are saying, I feel it.......I feel you.



And, of course, there is no Caregiver support from SSA, Medicaid, or any Insurer for our own family members.