I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: KatieV on July 23, 2012, 12:33:39 PM
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I've been thinking about caregiver burnout over the last couple days...
My mother has been the medical caregiver for our family since the 3 of us kids (out of 6) were diagnosed in 2007. Now with my 2 siblings successfully transplanted and my care "transferred" to my husband, she has been enjoying being mostly free of medical "stuff". However, another sibling was recently in the hospital for 3 weeks with an unknown illness (lost 50 lbs, can't eat). Now they are back home with a PEG feeding tube. It is now apparent that my mom has suffered a burnout. She has gone to spend a few days with her sister.
The situation has been on my mind for a few days. Being that I'm on NxStage and require a partner 5 days a week, the opportunity for caregiver burnout is high. How can it be reduced? Any suggestions? I'm pretty concerned that it could happen to my husband. We both work full-time jobs, leaving the house at 7:15 and returning at 6. Then we start dialysis immediately and then he makes dinner most nights.
Any suggestions from caregivers on what us patients could do to make your loads easier? Any tips from experienced patients? We've been doing NxStage for 9 months, and were only married for 56 days before starting training. It's been a crazy 10.5 months of marriage!
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How is the work for NxStage divided between you two?
I do NxStage and work full time as well. I am the patient. I do everything but pull my needles. If I could figure that part out, I'd do it myself as well LOL DH does tote boxes of supplies around for me, but I do all the ordering, inventory, setup, treatment, charting and tear down. I also make dinner while the machine is priming and clean up the kitchen after I'm done treatment.
I would suggest a 50/50 division of labor as best as possible. In our house, it's about 80/20 (with the 80%) on my side. I'm the one getting burned out because I have to do all the cooking, cleaning and laundry as well as my treatments as well as working. If I could get DH to agree to take on more of the household stuff, I'd be ecstatic.
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I'm afraid I'm the worst person to ask. I do *everything* around the house and Blokey just works full time and earns lots of money. He did haemoD at Hospital so there was no issue with that either (he has a working kidney now) because it meant that I had three evenings a week which were mine, to do what I wanted with. Just be sure to give hubby some 'me-time' if he wants/needs it.
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I am so time poor these days - I am judging how I am coping by how many hooks on my bra I manage to fasten in the morning ! No don"t laugh I am deadly serious !
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I too would like too know what the care givers feel about burn out. I know my wife is frustrated with me about not being (physically) able to help with the yard work, fixing up stuff around the house, etc. Grumpy
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I am burning out at the moment. I think it just gets to you. It creeps up. My husband can not help being ill and I can not stop doing. Such is life. Thank goodness for ciggies and wine.
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Oh I hear you billybags but I dare not touch the wine at the moment !
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I am burning out at the moment.
I think that might just be because of the sun my lovely ... you really should cover up when you're guzzling your wine in the back garden.
;D
All joking aside though, I hope everything is as well as it can be with you and your hubby, billyb. Are you having to spend more time with the horrors grandkids now it's the holidays?
Katie, to add to what I posted the other day, most of us create our own mechanisms for coping with life and thus reducing burnout. Hubby will have his in place.
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Yep, Poppy got the lovely grand kids for the holidays.They are 10 and 13 all they want to do is watch tele and go on the computer, boring boggers..Hubby bought his self a mobility scooter about a month ago, best thing he ever did. I have been onto him for months. because of his heart he can not walk far but he got stuffed in the local town about 5 weeks ago and admitted he needed one. O joy. He now takes his self off for a ride, gives me a break. I tried it and with my weight and a ciggie in hand I looked like Madge off Benidorm. the kids think it is awesome and have goes on it. cheaper than the fair.
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Cattlekide, would my describing how I pull mine help? Where is your fistula? Mine is at the bend of my elbow and the buttonholes are about one inch and one and and a half inch above it. Maybe I can video it. Have you been onto Home Dialyzors United? There is a video that you can access on there of Sharon Whipkey pulling her own needles. I essentially do mine the same way as her.
As regards burnout, do as Cattlekide does if possible. Do the maximum of your care yourself. I do everything except the set up which I can do but my husband does that for me since it is easier for him since I use bags and he is taller than I am. Even with that, I make the connections and set up all the remaining supplies.
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... the kids think it is awesome and have goes on it. cheaper than the fair.
You could let them bring their friends round and charge for having a go ... nice little money earner!
;D
(Sorry Katie, completely off topic!)
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My #1 request for reducing burnout....PLEASE don't put off treatment until 9 or 10 pm ! Patients can snooze a little but caregivers have to stay awake and alert. ( I guess it depends on how much of the treatment you can do yourself. I have to do hubby's canulations and he's prone to BP crashes so no snoozing for me).
I know if you were in-center you would be horrified if your tech was falling asleep on the job.
P.S., Can you tell I was up too late last night? :)
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I don't want this to come off sounding witchy at anyone (except maybe Tony, teehee) but I think one way to help reduce it is to make sure you make an effort to contribute to the household stuff - small things go a LONG way.
Lets take today for example. Tony had D and was out the door at 6 because he needed a ride because his truck died. I had to leave work and pick him up. He was up for most of the day fretting over how he's going to fix his truck (dealer wants to charge $1100 just to tear the engine apart and figure out whats wrong yada yada yada). We had talked on my break at 245 so I texted him at 430 and say "See you in an hour?" because he drove me back to work so he could use my car. I get out of work and say "see you soon"? via text and get nothing, so when I am out of the elevator I call - HE WAS SLEEPING! It was 530. I was done working and expecting to go home, and our son still needed to be picked up at daycare by 6. I stood in the parking lot and waited for 45 minutes for a ride home. When we got home, an hour later than I usually get home, he proceeded to assume a horizontal position on the couch and slept while I cooked, cleaned, washed dishes, started laundry, gave our kid a bath etc. Now he's naturally wide awake and farting around on his computer again. Know what he could be doing? Cleaning (trust me, there is PLENTY) putting the newly washed dishes away etc.
So if there is something small you could do - maybe pick up dinner on the way home, or help with chores when you have a free moment without being asked, do it. It makes a world of difference, I think. The caregiver doesn't come off as a nag, and doesn't feel awful for asking a D patient to do some chores to help out. And believe me, I get that dialysis patients sometimes feel like complete rubbish and can't say mow the lawn or haul 10 loads of laundry per night, but if the small things could get done without asking or invite, that would make it easier, at least I know it would on me. Each one of those small things adds up, and it's one less thing on the caregivers plate.
And I also agree with stringbandbeth - when Tony was on PD nothing burned my cookies more than him waiting until almost friggin midnight to set up and then later to hook up. It would delay me going to bed, and then in the morning it was harder for me because I need to get out the door to work, and if he was on his machine he couldn't chase around the 2 year old.
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I agree with smcd23. If you have the energy, either pick something around the house to do or ask what you can do. Depending on the relative level of burnout, the caregiver may not be able to tell you what to do because their brain is conditioned to just do. They don't even think about it anymore. If the caregiver looks at you with crazy eyes, don't be scared. Just keep asking and offering to do something to help keep the place clean and functioning.
Also, smcd23, I am so sorry about your hubby's last transplant experience. I can't imagine what that must be like. As far as your rant, I feel some of your pain. Luckily for me the boyfriend doesn't gratuitously fall asleep but he is obsessed with drawing his comic (jimmyjone.com). I don't want to squelch his creativity but damn I wish he'd do the dishes just once a week! At least he does his own laundry and we don't have a toddler!
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Depending on the relative level of burnout, the caregiver may not be able to tell you what to do because their brain is conditioned to just do. They don't even think about it anymore. If the caregiver looks at you with crazy eyes, don't be scared. Just keep asking and offering to do something to help keep the place clean and functioning.
Sometimes if you get the crazy eyes, don't even offer, just do. And even if it's something small like drying the dishes or picking up some trash from the coffee table. One less thing for the caregiver to worry about is one less thing, no matter how small. The small things seem to be the things that get pushed aside until the day you realize that small thing has taken on a life of it's own (I am thinking of sweeping the floor here - I always forget and then on a night like tonight I find a dust mammoth where the dust bunny in the corner used to be)
And make sure you show your appreciation! I do a lot and I'm okay with that, most of the time. But when I go days without hearing a thank you, kind word or see a small sign that I am appreciated and valued, I start to lose it, and I think all caregivers need some sort of validation from the one they are taking care of.
I am going to check out that comic, too. I wish Tony would have an outlet of some variety so he would be out of the house, or at least not brooding over things all the time...
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I've been trying to figure this out myself... ::)
My boyfriend of a bit over two years, recently had a bit of a meltdown. And in this whole thing, decided we should break up. Now, this is my partner who was talking to me about wanting to be with me for a long time. The one who when I told the possibility of at some point having to go back on dialysis or other medical crap, said it will be okay he wants to be there. The same guy who was talking to me about trying to find a place after the holidays, so we can just live together instead of going back and forth.
We got back together, but taking things slow. But, now I'm just thinking, all of a sudden I wasn't that woman he told me I was for him. Given, in this post I can't post everything. (The meltdown came from not fully processing his mother's death,Over stressed and he has Aspergers.) Currently we're just taking it slowly.. But I am worried to some degree.
I know my medical stuff can be overwhelming. I was sick for a whole month, and he was my caretaker. He says he didn't mind. Since I help him out too. But, sometimes he does get overwhelmed. Eh. :P
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I've been trying to figure this out myself... ::)
My boyfriend of a bit over two years, recently had a bit of a meltdown. And in this whole thing, decided we should break up. Now, this is my partner who was talking to me about wanting to be with me for a long time. The one who when I told the possibility of at some point having to go back on dialysis or other medical crap, said it will be okay he wants to be there. The same guy who was talking to me about trying to find a place after the holidays, so we can just live together instead of going back and forth.
We got back together, but taking things slow. But, now I'm just thinking, all of a sudden I wasn't that woman he told me I was for him. Given, in this post I can't post everything. (The meltdown came from not fully processing his mother's death,Over stressed and he has Aspergers.) Currently we're just taking it slowly.. But I am worried to some degree.
I know my medical stuff can be overwhelming. I was sick for a whole month, and he was my caretaker. He says he didn't mind. Since I help him out too. But, sometimes he does get overwhelmed. Eh. :P
I think we all get overwhelmed sometimes. Whether it's chronic illness, family problems, work problems, financial problems...the world is an overwhelming place at times. Most of us work so hard at handling everything that occasionally there is a fissure, a crack in the facade, and the result is an emotional outburst that can go anywhere from permanently damaging a relationship to being a healing release valve.
May I ask...what exactly worries you? What do yo mean when you say that you "weren't the woman he told me I was for him." Do you think he sees in you a woman that doesn't really exist? Do you think you are someone he doesn't really know?
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Yes, if anyone can help me figure out to reduce caregiver burnout, I am all for it. short of hiring someone to help me (which costs a lot) all caregiving is left to me. My husband is on dialysis, can't see well enough to read or drive, has pain in his hip, so walking is limited. Has emphysema, COPD, legally blind..., you name it, he's got it. I do it all, and a few days ago i had a massive mental breakdown. I ranted, screamed, cried, and told my husband how all this crap has gotten to me. He can't help it, he is not in a good situation, and he just can't do much. I have been dealing with his medical issues for 17 years now, starting with a heart transplant in 1997. Well, it actually started a few years before that. My entire mid life has been spent caring for his needs. I have no idea what a normal day is. I have not known a normal day since the day before Easter, 1995. that was the day before he had his first bout of congestive heart failure. My personal enjoyments, activities are shrinking to where I really do nothing but take care of him. I used to love photography but no more. I even do not want to go to the market anymore, I hate cooking, I have no desire to do anything. Part of my meltdown last Friday was because I did not even have time to wash my bras (yeah, really) I just want to wake up, not have to deal with his care and needs. I want to get up, go somewhere, enjoy the day, relax, not think about the next damn doctor appointment, dialysis, the hospitals, etc. I want to go places, see my kids/grandkids in Washington, but the work to take him is just too much. I want to go on cruises, go on trips, be normal, go to baseball games, (without figuring if I can go because he has to go to dialysis or doctors) I need freedom from this hell, and really for me it is hell anymore. yeah, i am burned out....thought maybe my rant the other day might have taken off some of the edge, but not really, I am still feeliing blue. Never thought of myself having depression, but now I think I may be experiencing it.
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Just an idea that might help with caregiver burnout. For those on home dialysis as much as you might hate having to go to clinic arrange with your center every couple months to go in center treatment for a week to give them a break. It should be a world of difference for them to get a break from it even though we can't but that isn't there fault. Just be thankful for those that stand by us through this. My fiancé/caregiver/best friend of 4 years dumped me because she couldn't deal with my health anymore so like I said give your care givers a break once in a while and be thankful if there still there and make sure they know there appreciated. Best wishes.
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I've been thinking about caregiver burnout over the last couple days...
My mother has been the medical caregiver for our family since the 3 of us kids (out of 6) were diagnosed in 2007. Now with my 2 siblings successfully transplanted and my care "transferred" to my husband, she has been enjoying being mostly free of medical "stuff". However, another sibling was recently in the hospital for 3 weeks with an unknown illness (lost 50 lbs, can't eat). Now they are back home with a PEG feeding tube. It is now apparent that my mom has suffered a burnout. She has gone to spend a few days with her sister.
The situation has been on my mind for a few days. Being that I'm on NxStage and require a partner 5 days a week, the opportunity for caregiver burnout is high. How can it be reduced? Any suggestions? I'm pretty concerned that it could happen to my husband. We both work full-time jobs, leaving the house at 7:15 and returning at 6. Then we start dialysis immediately and then he makes dinner most nights.
Any suggestions from caregivers on what us patients could do to make your loads easier? Any tips from experienced patients? We've been doing NxStage for 9 months, and were only married for 56 days before starting training. It's been a crazy 10.5 months of marriage!
Katie,
How much of the NxStage setup do you do? Do you cannulate yourself? If not, this is one that that will take major stress off of a caregiver. It doesnt sound like much, it it will be a major difference. Do as much as you can yourself. Since you are NxStage, another thing that sometimes works is switching up your days off or switching the time you do your treatments... just for a change.... We tend to get into the same routine and this can change things up a little...
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Exactly how we do it M3. We are home doing it, and we do it pretty much on schedule, but if it needs tweeking, then we do that too! It definately helps me with burnout! Actually, my body is use to work. Sometimes I get a little exhausted with it, not because Im necessarily "burntout" but just tired from doing. Actually, I have really found doing dialysis boring, no pun intended. But If Im tired, I just find the time to relax & sleep. Now my home may be a wreck, but hey, it aint going with me when I die either. To me, its about the important things in my life, yea, its about people whom I love.
I really do not mind that I have to do alot of things. Im Blessed to do it. And trust me, Im thankful for my health. Others are not so fortunate. Guess Im just wierd that way. I do get frustrated sometimes, but I try my best to be in NO ONES presences at that time. Otherwise, it could get very ugly!!!! lol
God Bless,
lmunchkin :kickstart;
P.S. We found out today, that they have upped the requirements for EPO. John was 11.1 the range has been increased 14-18, that just seems too high to me. So he is starting on Epo again :thumbdown; :thumbdown;
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I agree with the comment that the one thing I woiuld be so thankful to never do again is stick needles in DH's buttonholes. The rest of it, the setup, the cleanup, the supplies, the bloodwork, the meds, are all just chores.
That would reduce the load so much. DH can't do it - neuropathy in his hands and feet means he just doesn't have the feeling in his fingers to put his own needles in, but for anybody that can do it - please do. Your partner will love you all the more for it.
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kiddogal true full time or part time for someone to come in is expensive. BUT what if you could afford one day a month? Then you could get out and relax a bit? Grumpy
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Any tips from experienced patients?
I am on NxStage, 5x/week. I do everything myself - setup, canulation, inventory management, etc. My caregiver's sole responsibility is being around to cover for any emergency that comes up during treatment, or coming in to hold the flashlight while I do a manual rinseback if there is a power outage.
Even so, the stress of having me on the hose for so much time, and dialysis a constant factor in our lives, is taking its toll. I think the toll is higher on the partner since the patient gets an immediate reward with each treatment (another day of not being dead).
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I used to feel like that too Simon Dog, however I 'know' now that the 'extra day of staying alive' is just as rewarding for the partner. Well, that's what I keep telling him anyway.
Love, Cas
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I am as much invested in each dialysis treatment as my wife is. Keeping her alive and feeling ok is worth any amount of time and investment. She always feels so much better immediately after dialysis on Nxstage.
Yes at times it is tiring and I am considering retiring from my remaining medical practice soon due to the demands of taking care of my wife. But I do this happily for her.
We have been doing dialysis for almost 3 years now.
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I am as much invested in each dialysis treatment as my wife is. Keeping her alive and feeling ok is worth any amount of time and investment. She always feels so much better immediately after dialysis on Nxstage.
Yes at times it is tiring and I am considering retiring from my remaining medical practice soon due to the demands of taking care of my wife. But I do this happily for her.
We have been doing dialysis for almost 3 years now.
Dr. O: You and your wife's story motivate me to be a better care partner. I am lousy at it but I do it and will keep doing it and hopefully at some point it won't seem so darn overwhelming (for my mind AND my body).
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I am as much invested in each dialysis treatment as my wife is. Keeping her alive and feeling ok is worth any amount of time and investment. She always feels so much better immediately after dialysis on Nxstage.
Yes at times it is tiring and I am considering retiring from my remaining medical practice soon due to the demands of taking care of my wife. But I do this happily for her.
We have been doing dialysis for almost 3 years now.
Dr. O: You and your wife's story motivate me to be a better care partner. I am lousy at it but I do it and will keep doing it and hopefully at some point it won't seem so darn overwhelming (for my mind AND my body).
Thank you. But I don't think you could possibly be 'lousy at it'". You obviously care a lot from your posts and take it quite seriously. That is really what it is about. Keep up the good work.
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I'm scared I'm already experiencing burnout, and I've only been taking care of my brother for about two weeks, and he's been in the hospital the whole time! Luckily I'll get this Saturday off. It's especially hard because I'm having to move from Florida to Utah, and I miss my home. I hope it will be better once he's home.
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Dear Piano I really can imagine the stress you are under with all the things happening at the moment with your brother. the shock must have been incredible. I remember that my family was in shock when I was first admitted, and when I'm in hosp now it's way worse for hubby than when I'm doing HHD. I read in one of your posts that his kidneys could still kick in, and that your brother is trying really hard to do everything he needs to do, so try and do some 'me' things on your next Saturday off?
Love and strength and luck, Cas
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Thanks Cas, it was very scary and shocking! And this hospital environment is just draining my energy... But I promised my brother I'd be there for him, and I'm going to be there the whole time. This Saturday I'm going to the local amusement park with a friend, so that should really help me wind down, it's just getting to Saturday that's becoming an issue! I keep breaking down and just crying....
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One way to eliminate the type of burnout one feels from fielding repetitive questioning and/or negative remarks from friends and family, is to either do it the time consuming way and slowly cut them out of your life, learn to ignore them, which also can be time consuming (depending on your level of experience) or, if you're really up to it and wanting instant results (notice, I didn't say gratification) and don't think they'll sue you, slap them silly. ;D