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“Being My Husband’s Caregiver is Exhausting”

I am hoping that you and your wonderful community of commenters can help me. I have been married for seven years now, my husband and I are both in our mid-50s, and we each have a grown son. Both boys did their time in the Marine Corps and are on their own elsewhere in the country.

Four years ago, my husband had an accident at work that crushed two vertebrae in his back and broke his hip. Due to multiple complications like a heart attack a year later and long-term diabetes, he is pretty much wheelchair-bound now. While he can take up to 20 steps with a walker, he is incapable of almost all other physical activity. He has lived with constant pain in his right testicle ever since (imagine!!).

My husband is a wonderful man who is as loyal as the day is long, funny and truly caring. Because of multiple surgeries, shocks to his heart over a period of many days, constant pain, medications, and other issues, he does not have the mental capacity he once did. His memory is bad, his mood can swing from week-to-week and sometimes day-to-day. All of it is understandable, but it can be difficult for me to deal with.

Because of that, I would like some words of encouragement — words I can say to myself when his diaper is full and I am late for work, the laundry needs to be done, and the dog just puked on the carpet. I married this man, I love him, and I took a vow that included “in sickness and in health,” but I need some thoughts to remember when things get rough and I start feeling down.

You and your lovely community always seem to have such positive attitudes, even in difficult times, and I was hoping you could all share some ways I can turn my head around when things get dark. I do not have suicidal, or any other morbid thoughts, but I am running out of things to laugh at or smile about.

Understand, I cannot leave my husband for an extended period, our family members are long passed or long distance, and we barely have two nickels to rub together on his disability and my income.

I just need a little encouragement. I have seen how helpful and caring you and your commenters can be. Can I ask for help? — Needs Encouragement

Of course, you can ask for help! And you should — not just from this community, but from your community of neighbors, friends, and family. And you should find new communities to join that will give you the kind of support — if not physical support, then emotional support — that will not only help you get through each day, but also help you find the joy that seems to be missing from your life. Do a Google search for support groups or organizations in your area tailored for family caregivers, and ask about such groups at your husband’s care facilities/ hospitals. If you have trouble finding such groups locally, check out websites like Family Caregiver Support Network. I would also recommend finding your own therapist, social worker or counselor to check in with regularly and to unload some of your burden. If you are at all religious and aren’t already attending a place of worship, you may find that doing so will give you a spiritual life as well as open your circle of friends. Even if you aren’t particularly religious, it may not hurt to search for a non-denominational place of worship where you can congregate with other like-minded people, sing songs and celebrate life together.

I really love all the helpful tips listed in this guide for family caregivers and would encourage you to read them carefully and think about where there’s room in your life and schedule to apply some of them. Maybe you have friends nearby who could be of service to you in some way whom you haven’t yet asked for help. Maybe they’d love to help but don’t know exactly what they could do for you. I like the idea of pointing out very specific ways they can be of service to your and your husband, especially in small ways that may add up over time, like dog-sitting one weekend or driving your husband to an appointment when you have to work.

Beyond the practical suggestions, I know what you really want are some words of encouragement and the best thing I can think to say to you is that it’s OK for you to take time for yourself. It’s not only OK, it’s necessary. You have to fill your well in order to gather the strength it takes to care for your husband. You may not be able to fill your well in the same way you used to, but with modifications, you can still do things that bring you joy, like watching movies, reading books, baking, gardening, doing crafts, writing poetry. Any of these things are inexpensive or free — some could even save or make you some money in the long run (you could plant and harvest vegetables in the summer, for example, to save on your grocery bill and then use the savings to hire a dog-walker or a cleaning service or treat yourself to something you couldn’t otherwise afford).

Still, you want words of encouragement and maybe DW readers will have some that resonate with you. I just keep thinking that if you had some bright spots in your week — things to look forward to — it would make the full diapers and dog puke and hard moments a little more bearable. But you can’t wait for those bright spots to come find you. You have to seek them out. And it may mean expanding your social circle or it may mean carving an hour or two of your week to make time for something you love, but I want you to know that that time away from obligations is the thing that will not only save your marriage, it will save YOU.
***************

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If you have a relationship/dating question I can help answer, you can send me your letters at wendy@dearwendy.com.

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{ 145 comments… add one }

avatar cdobbs July 3, 2013, 9:14 am

can your husband do some rehabilitation therapy? if he can take steps with a walker then can’t he change his own diapers? if he has diabetes i’m wondering if he is overweight? it sounds like he is resigned to the fact that he will spend the rest of his life in a wheelchair, when he should be going to physiotherapy and trying to do things that will help him be more independent. i think its time for some tough love here. your husband needs to take responsibility for his poor health. if he can take 20 steps with a walker today….then he could slowly build up….he could be doing strength training for his upper body, eating healthy. maybe he is depressed in which case the exercise will also help his mood.

avatar sarolabelle July 3, 2013, 9:46 am

I agree. 20 steps today, 21 steps tomorrow, etc. One step more a day and not giving up!

avatar Joanna July 3, 2013, 9:49 am

I haven’t commented lately, but brain/spine rehabilitation is something I have experienced and I wanted to share my thoughts. The chance that he could recover 100% greatly diminishes with age and he is in his mid-50s. Not trying to be a downer but I just want to be realistic towards the situation.

Lindsay Lindsay July 3, 2013, 10:15 am

I don’t think anyone is expecting 100 percent recovery, but any improvement or ability to complete a new task would be good for both of them.

avatar Bunnycsp July 3, 2013, 10:00 am

Yea, and frankly, he needs to be making this decision. To put that on her shoulders as well is not really fair. She is working and a caregiver. Plus chances are, he is very heavily medicated for pain, and that plus pain plus not having the finances to get professional help is very hard and could only add to her stress load.

avatar iseeshiny July 3, 2013, 2:00 pm

+1

I feel like that’s kind of like going up to someone with, I dunno, cancer and asking if they’ve heard of chemo. I’d like to assume that she and her husband understand what options are available for their medical situation. She didn’t write in asking for help with that at all.

avatar Bunnycsp July 3, 2013, 3:56 pm

Yea, My husband and I have had fertility problems for a long time. And people give me their opinion of medical advice with no background on me. Drives me crazy. Like ” oh, it is because you are thinking about it.” or “your should just get drunk, that is when people get pregnant.”

avatar Sophronisba July 3, 2013, 10:12 am

totally agree that rehab might increase his function – and why not 20 steps to the toilet for crying out loud?
the local hospital should have a social worker who can help steer you to community services or groups and there also might be a chronic pain clinic that has therapy options for his pain.
but the most important thing needed is respite care – you need it to recharge your batteries and to take care of yourself, which is the best thing you can do for him in the long run. best of luck!

avatar kerrycontrary July 3, 2013, 10:18 am

Sometimes people just can’t get to the bathroom in time. Or they don’t realize they have to go until they REALLY have to go and they have about 1 min they can hold it in.

avatar Bunnycsp July 3, 2013, 10:19 am

especially with the injuries she is talking about. He might not have the sensations anymore.

avatar lets_be_honest July 3, 2013, 10:26 am

And add in the risks of him falling on the way…

avatar A La Mode July 3, 2013, 1:53 pm

Not to mention that if you’re very weak, it is SO exhausting to walk to the bathroom that you collapse onto the toilet and can’t get yourself back up.

avatar Sophronisba July 3, 2013, 3:00 pm

A standard technique for people who have lost sensation is to make scheduled visits to the bathroom, like 20 minutes after a meal, once every two hours, etc. It’s hard to tell if the poor fellow is completely impaired or if some functionality would be possible if he’s not too depressed to try..

avatar ktfran July 3, 2013, 10:34 am

My grandpa could walk just fine, but had to wear a diaper because he had trouble making it to the bathroom in time.

With this guy’s disabilities, which sound worse than my grandpa’s, I could totally get why he needed help.

CatsMeow CatsMeow July 3, 2013, 11:05 am

I doubt he wears diapers just because he is too lazy to get to the bathroom on his own. He might be incontinent, and I bet his medications increase his urgency. He really doesn’t need to worry about rushing to the bathroom because it will increase his fall risk.

avatar cdobbs July 3, 2013, 12:45 pm

i’m not saying he doesn’t need diapers, but if you can walk with a walker can’t you walk to the bathroom and change your own diaper? i don’t know these people, i’m just basing my opinions on what i am reading….he sounds like he does have the use of all his limbs and so i would think the best thing to do would be physiotherapy to increase his independence, not just sit in a wheelchair and slowly lose what little muscle strength you have….i am really worried about the LW because caregivers often suffer health problems themselves because of the added stress of taking care of a sick relative….if there is any way this man can help himself i think that would be the best thing for the LW

avatar lets_be_honest July 3, 2013, 12:49 pm

For my experience, no. Just because you are capable of walking unsteady with a walker 20 steps does not in any way mean they are capable of anything more than that. If you barely can walk with a walker, you don’t have the physical strength to lift your waist to change your diaper and clean yourself thoroughly. Physical therapy is great to maintain muscle strength, but its not a magical thing that increases it much, if at all. Also, if he were to fall and break a hip trying to do more, she would be in a far worse place, as would he. Its not worth the risk.

avatar Bunnycsp July 3, 2013, 12:57 pm

and if he has spine problems, he won’t be able to curl his back to wipe himself. Try hitting your butt without spinal movement.

avatar A La Mode July 3, 2013, 2:12 pm

If you’re female with a spinal injury, you end up getting a lot of UTIs. Both genders end up seeing some sort of yuckiness happen back there unless somebody else is taking care of it.

CatsMeow CatsMeow July 3, 2013, 1:26 pm

Ooh! The nursing student in me is about to come out.

I am assuming that if he doesn’t do it himself it’s because he can’t. People generally don’t like depending on others for things they used to be able to do independently, especially bathroom-related stuff. He absolutely should do as much self-care as he is capable of, but I’m thinking that getting to the bathroom unassisted is not something he can do right now. She said he’s incapable of most physical activity. He not only sustained injuries, but he had a heart attack and has effects from long-term diabetes. So he’s not only immobile due to his injuries, but there are probably other things going on too. If he takes a lot of antihypertensives, for instance, they can cause orthostatic hypotension so he is at risk of falling if he tries to get up too quickly by himself. He might be on a diuretic which increases his urinary urgency and frequency. Long term immobility will make his bones weaker so he’s at risk of pathological fractures. He might have diabetic neuropathy which will make him even more unsteady on his feet. In addition, we don’t know his weight or range of motion. He’s at increased risk for pressure ulcers so it’s super important to keep his skin dry and clean (especially the perineal area since he is using diapers/might be incontinent) – he might not be able to reach to wash himself properly, or he might need help putting on some powder or a barrier cream after he cleans himself, or do the bending required to get his pants on and off. So yes, PT/OT is a good thing, and he absolutely should maintain as much independence as possible, and do his range of motion exercises, and move around as much as he can – but going to the bathroom unassisted, while it might sound simple, just might not be something he can do at this point.

katie katie July 3, 2013, 2:01 pm

cats look at you go!! get on with your nursin’ self!!

Lindsay Lindsay July 3, 2013, 2:08 pm

Nurses are the best. :)

avatar A La Mode July 3, 2013, 2:12 pm

Doctors save lives, but nurses save doctors.

Amybelle Amybelle July 4, 2013, 7:02 pm

I’ve been a nurse for 17 years and I agree 100% You’re going to be an awesome nurse CatsMeow!

avatar A La Mode July 3, 2013, 1:51 pm

As others have said, it’s very difficult to fully recuperate once you’re in the late stages of middle age and beyond. From what I read, LW’s husband has been through the ringer. As someone who also used to not be able to walk, and had the opportunity to talk to many older folks at physical therapy, it’s pretty insulting that you think that you know more about his physical state and potential recovery than LW and the doctor do.

avatar iseeshiny July 3, 2013, 2:02 pm

Well said.

avatar cdobbs July 3, 2013, 4:03 pm

i don’t know the man or his physical condition….i just think when you look around now there are a lot of people in very poor health….morbidly obese, diabetes, and they are either wheelchair bound or need scooters to get around….i think if more people took ownership of their healthy they would be a lot better off and not dependent on others….a lot of people have bad attitudes and won’t even try to help themselves….i’m just basing this on the fact that the LW mentions her husband can use a walker, meaning he is not paralyzed….but you are right i don’t know his physical state….i don’t think people in their 50′s are that old either and so his age is not that inhibitory to some sort of rehab

avatar iseeshiny July 3, 2013, 4:05 pm

Wow. That’s not really any less judgey.

avatar SoCal-Gal July 3, 2013, 5:35 pm

The letter writter is not asking for your input. All she is asking for is words of encouragement.

avatar A La Mode July 3, 2013, 9:06 pm

- Two crushed vertebrae
- Broken hip
- Heart attack
- Diabetes
- Constant pain in right testicle and elsewhere
- Multiple surgeries
- Had a defibrillator used on him multiple times
- Side effects from various medications
- Damaged memory capacity

Pretty much, cdobbs, you’re being obtuse, offensive, and downright dumb. Please get back to me after you go through what this man has gone through and let me know how you managed to “take ownership of their healthy” and “help yourself”. It’ll either be a miracle for the ages, or you’ll be a big fat hypocrite who better be ashamed of themselves.

avatar bethany July 3, 2013, 9:18 am

LW, I don’t really have any words of encouragement at the moment, but I just wanted to say Thank You for what you’re doing. Thank You for being someone who takes her vows seriously. Thank You for being loyal, and acting in the way that you know your husband would act, if the situation were reversed. You’re one of the good people that this world needs more of. I know your sons aren’t nearby, but they’re going to know what you’ve done for your husband, and it’s going to resonate with them, and hopefully they’ll follow the wonderful example you’ve set for them.

avatar lets_be_honest July 3, 2013, 9:32 am

wBs! You sound like a great and strong woman LW. Hope you can give yourself a break once in a while, if only for a few minutes at a time.

Classic Classic July 3, 2013, 4:32 pm

Yes, what an amazing and wonderful woman.

avatar kerrycontrary July 3, 2013, 9:19 am

I’m so sorry you are going through this! I would really seek out some support from your community, and also speak with your sons. Sometimes people hide how tough things are at home but you need to be brutally honest with them about what the day to day is like. Maybe they can somehow contribute financially so you could get a nurse in 1-2 days a week. If not, they should at least be able to provide you with some of the emotional support. I’m someone who also feels bad for unloading my stress onto other people and I always like to be positive, but sometimes you have to let it out. And that’s what your family members are for. In terms of your husbands abilities, have you looked into Medicaid/Medicare rehabilitation and physical therapy? They can at least teach him how to do stuff like get up and down from the toilet or get in and out of bed. On top of encouraging you to take some time for yourself and develop a hobbie, I would see if you can develop any of your husbands interests. Maybe it’s something you do together like playing cards, or if he has steady hands he could work on model airplanes, or maybe you decide to learn all about a new subject together. This can put some of the joy back in your life. Just know that there are people out there willing to provide emotional support to you.

avatar lets_be_honest July 3, 2013, 9:41 am

Your 1 or 2 day nurse suggestion made me think of medicaid/medicare? (?). There surely are some free services out there provided by the government to give you a little break at least. Maybe volunteer nurses aides? I’d definitely look into that. When my grandmother was very ill, the county (I think) was willing to provide a caretaker a few hours a week.

avatar kerrycontrary July 3, 2013, 9:47 am

Yes my grandma is getting medicare/medicaid/welfare rehabilitation two times a week. She broke her hip and was in the hospital/rehab/and then nursing home for about 2 months. They come to make sure she is keeping up with her therapy and then they practice going to the bathroom, washing herself, and doing normal kitchen tasks. Next they are moving onto going up and down stairs and then walking outside (using a walker). She has my grandfather and my entire family to help, but it’s STILL hard. I can’t imagine doing all of this while being an isolated couple.

avatar lets_be_honest July 3, 2013, 9:54 am

Its possible they’ve drained those resources already, but certainly worth finding out!

Being the sole caregiver is wildly hard. My grandmother (similar to your family) was my grandpa’s sole caregiver (he’s got Alzheimers, among other health issues) and even with all of us helping, it took its toll. Often I would go to their house to help him out, and she would ask if I would just sit and talk to her instead. I really hope this LW gets a break.
(my mom’s a PT and told me more often than not, the caregiver is the one to go first because of the toll that takes on them)

Lindsay Lindsay July 3, 2013, 10:16 am

Maybe the sons could pitch in to get someone who could come by once in a while?

avatar lets_be_honest July 3, 2013, 10:30 am

Really they should be. Even if its once every six months.

avatar MMcG July 3, 2013, 10:44 am

I get the sense that she probably hasn’t even asked them, or really shared how challenging it is for them both.

LW – please open up to your sons, the way you wrote that they served their time in the Corps and now they are long-distance makes me think you don’t expect or want any help from them. Maybe they can’t help physically or be there… but they can help in other ways. Even if it’s just signing up for a meal service that would be delivered to your door, Fruit of the Month club (WINE of the month club ;)) or just asking how things are and making sure to come visit at least once a year.

avatar Bunnycsp July 3, 2013, 10:50 am

Also, they might be better at researching different programs to help. Like “wheel chair clubs”, caregiver support groups, church support, what government programs they might be eligible for, adult day care, or just sending Omaha steaks to you. Honestly, I am much better at internet research than my parents. I am able to help with those places.

avatar MMcG July 3, 2013, 10:54 am

Right on! Although I hesitate to assume that a person of a certain age might be a little less than adept at the interwebs, based on my experience with my parents that is definitely the case ;)

avatar Bunnycsp July 3, 2013, 11:18 am

I don’t mean to be age-ist. But I have said that I grew up “speaking” computers where my parents learned it as a second language. They are good but not fluent.

Lindsay Lindsay July 3, 2013, 2:04 pm

Yeah, my mom had a friend who was very ill and couldn’t leave the house much, and neither of them had any idea that it was possible to order groceries online in some places and stuff like that. The more people thinking about resources, the better!

avatar Bunnycsp July 3, 2013, 2:11 pm

exactly. That is a great example. and people who buy groceries online on average spend less.

othy othy July 3, 2013, 11:26 am

I have a coworker whose husband has Alzheimers. She is his sole care-giver. A couple of months ago, she took all of her kids and grand kids to Disneyworld, and had a couple of her step-children take care of their dad while she was gone. When she came back, all of them were surprised at how much work it was. Since then, they have been pitching in more to help, since they never realized how much work she was actually doing.

avatar lets_be_honest July 3, 2013, 11:32 am

Oh yea, its a huge eye-opener. We’re all doing my grandma’s job now that she has passed and its fucking hard!!! And there are a few of us chipping in. 24 hour care is exhausting, possibly worse than caring for a baby alone to be honest. Its not been easy.

avatar ktfran July 3, 2013, 11:39 am

My mom is the only one of her siblings living in the same town as her parents. My Grandpa (not the one is diapers) had a stroke two years ago and last year passed away. My mom helped my Grandma out, as in was over there every day after work doing thing around the house or just visiting. It is effing hard and she was so beaten down since her siblings weren’t around to help.

My dad had three siblings to help with his parents and it was still even hard on him.

My little sis is the only one still in our hometown. After seeing what my mom went through, I’ll help her and my parents any way I can when it’s time. Visiting, sending money, hiring a cleaning service, something.

avatar lets_be_honest July 3, 2013, 12:51 pm

I think another issue is when people don’t see how hard it is first hand, and the caretaker isn’t one to complain because to them it seems wrong. After all, they are not the ones with the disability. Then when they don’t complain, everyone assumes they have it under control.

avatar ktfran July 3, 2013, 2:24 pm

That pretty much sums it up. I had to tell my mom to ask for help from her sisters, who lived two hours away. They finally started taking turns coming in on weekends.

avatar MsMisery July 3, 2013, 1:05 pm

Also find out what is available from your county or state. Sometimes there are programs aside from medicare/aid available to the elderly and disabled that people don’t even know exist, especially if you are having financial difficulties. My family found this out when my step-mom’s father went through the Alzheimer’s decline. She was able to get some services from Cook County.

avatar Boosker July 3, 2013, 5:21 pm

Yeah, and in some cases, you can get certified so that you are being paid by the state to care for your loved one. Check out this article for more details, LW: http://www.ehow.com/how_5318454_paid-family-caregiving.html

You could at least relieve some of the financial burden and that might free up your time to hire someone to assist you in some small ways. You are such a great person to devote so much of yourself to caring for your husband, but you are allowed to care for yourself, too.

avatar Tara C July 3, 2013, 9:19 am

If you were my mother I would want you to reach out to me. At the very least your sons can listen to you and support you emotionally although they may be unavailable physically. I’m not saying to vent to them about their father or the situation, but to call and chat about other things may be the break you need without having to leave the house. *hugs*

avatar tbrucemom July 4, 2013, 5:44 pm

I was thinking the same thing about the sons. I would think her son would at least be someone to talk to when she’s feeling overwelmed. Maybe his son could visit more often and give her some respite. These guys are both Marines, I’m sure they’re fine, upstanding men who are more than capable of providing some kind of help to their dad and mom.

avatar SasLinna July 3, 2013, 9:25 am

I just want to say: You deserve to continue pursuing your own happiness as well, even if your husband is finding himself in a very hard situation. Don’t sacrifice yourself for him, because you’ll only end up sacrificing both of you in the process. If there is anything your husband could do to lighten your burden, ask him to do that. If you can ask other people to assist you in any way, don’t be ashamed to ask for that help. If there’s a source of happiness outside your relationship with your husband that you could tap into, do that. It will lift you up, and it will ultimately lift your husband up, as well.

avatar ktfran July 3, 2013, 9:25 am

I’m sorry things are so difficult for you now LW. As I’ve never come close to experiencing anything like this – and I’m so proud of you for not taking the easy route out – I can’t offer much encouragement. I do have a suggestion, however. Why don’t once in a while you get a “babysitter” of sorts and take some time for yourself? Read a book at the park, go to a museum, sit at a coffee shop, idk. Something you enjoy and will make you feel like more than just a caregiver. Do you have girlfriends? Go out and have a drink. I know this advice doesn’t help your situation any, but it can help your sanity.

I also agree with cdobbs to an extent. I hope your husband isn’t just feeling sorry for himself and making things harder for you. If that’s the case, and I have no idea if it is, he needs a wake up call. I get that everything that has happened to him sucks big time, but a lot of people go through a lot of shit. My parents included.

avatar Bunnycsp July 3, 2013, 9:38 am

LW – I will tell you that I have been in some very dark places and there are three things that I will tell you that helped me. 1.) sweat every day. I don’t know what shape you are in but walk or run. you can join a walking group on meetup.com for free. But getting that physical sweat really helps that mental stress and this is from someone who gains weight with stress. 2.) Take the list one thing at a time. Take a breath and do one thing than then next. So many things can overwhelm and paralyze. Break down that list and I got things done faster and with a greater sense of purpose. 3.) when watching tv, stick to funny shows. Stay away from crime dramas. I found in a bad mood, I would watch violent dramas which confirmed my belief that the world was a bad place. Start watching funny things and it does help get me out of my funk. good luck.

avatar jbk886 July 3, 2013, 9:40 am

LW, you have taken on one of the most difficult tasks a spouse can do – difficult, frustrating, and sometimes dirty. However, what came through in your letter the most was the amount of love you have for your husband. You love, and you are loved. You display a wonderful empathy for your husband’s situation, even as you struggle with what it means for your own life. I find your patience, kindness, and dedication really inspiring.

I think it’s likely that other people around you notice it as well. What can be difficult about being a caregiver is that it means that you can become isolated from your friends and community. If this is the case, I encourage you to get back in touch with them. Make a short phone call, have mutual friends over for coffee or a game night (bonus: this reduces the likelihood of your husband being isolated as well), maybe even consider setting up his-and-hers nights (he has a couple of friends over to watch a game; you go out for a bit and spend time with your friends away from the house). I’ve found that people are happy to talk and spend time together, even if it has been several months or a year since we last spoke.

avatar Miss MJ July 3, 2013, 9:41 am

I feel for you, LW. Definitely reach out to his son and yours. Also reach out to your community. If there isn’t a support group for caregivers in your area, it almost certainly isn’t because there aren’t caregivers in need of one. Maybe think about starting one. Post a notice online or in the local newspaper or in local churches. You could meet for coffee one day a week or every two weeks or monthly or whatever. Coffee is cheap and relatively quick. And, if you enjoy reading, how about a book club? Or a movie of the month club? Or a once a month potluck dinner club? And I love Wendy’s idea about gardening, if you’re interested in that. There’s something incredibly relaxing about digging in the dirt, planting something and seeing it grow. Point is, one thing many caregivers share is that there is a loneliness to taking care of someone you love, and a powerlessness and sadness and, at times, real frustration and anger, too. Feeling those things does not make you a bad person or a bad caregiver, and you need to get out and be around other people and be taking care of your needs in order to be able to keep giving so much of yourself to someone who, at times, feels like they’re not appreciating what you do. Also, I know you said money is tight, but does your husband have Medicaid or Medicare? Perhaps they can cover the cost of a part time home health aide. Or, as someone suggested, perhaps your sons could help pay for one a couple of days a week. Maybe just a sitter, even, if you cannot leave your husband alone for long. You are not an island, LW and you are not alone. Reach out and I think you will be amazed and touched by the offers to help you receive.

avatar Spyglassez July 15, 2013, 2:38 pm

I also wonder, even if the OP doesn’t have an option for an in home helper via medicare or medicaid, if there is an option to hire essentially a “helper” who could do some of the household work – like the laundry, or help with cleaning, or even cook dinner. If there isn’t someone certified to provide care, even those small things can be a lifesaver. I used to provide home care for a handicapped friend who had a siezure disorder, and while I couldn’t do the actual health part, I did dishes and laundry and vacuumed for him, made sure things were picked up and bleached the bathroom when it needed it. I was there 1-2 times a week, and it helped him out a lot.

avatar sarolabelle July 3, 2013, 9:47 am

Now, this is a LW who actually needs some financial help. I wish we could open up the PayPal on this one.

avatar kerrycontrary July 3, 2013, 9:49 am

That’s a good idea, if the LW is willing to take some financial assistance.

avatar lets_be_honest July 3, 2013, 9:50 am

As opposed to the ones that didn’t? ;)

avatar sarolabelle July 3, 2013, 10:05 am

Sorry for the weird wording. I was trying to generate excitement for donating.

lemongrass lemongrass July 3, 2013, 11:13 am

Wasn’t there that one LW who wanted us to fund her wedding or something like that?

avatar lets_be_honest July 3, 2013, 11:28 am

Really? Haha, I don’t remember that one.

katie katie July 3, 2013, 11:42 am

there wasnt, someone just had that theory in the comments

becboo84 becboo84 July 3, 2013, 10:23 am

Love this idea!

findingtheearth findingtheearth July 3, 2013, 10:35 am

I am in to donate some money to the LW.

avatar Taylor July 3, 2013, 11:45 am

That’s an awesome idea! Wendy, can we do this?

Dear Wendy Wendy July 3, 2013, 1:01 pm

This is a tough one because I can’t imagine there’s a set one-time amount that will really make a longterm impact on this LW. What she needs is a steady stream of financial help and that isn’t something that we, as a community, would be able to give. Now, if there was a specific thing that she needed or that would brighten her life a little — money for a vacation or something like that, that would be one thing. We’d need a goal amount to reach. If the LW pipes in here and gives us an idea of what we could do to help her, I would be open to collecting donations to send to her.

avatar Taylor July 3, 2013, 1:12 pm

That sounds great! LW, tell us if there’s something that could brighten your day.

avatar A La Mode July 3, 2013, 1:56 pm

If LW had an Amazon wishlist of items that would make her day better… maybe a pedi-bath or an array of shower bombs?… I would love to donate to her cause. She is such a wonderful person to do what she’s doing.

avatar ktfran July 3, 2013, 2:31 pm

I’m going out on a limb here, but it almost sounds like it would help the LW tremendously to get a cleaning service to come in once a week, or once every two weeks. I wonder how much that would cost in the LW’s area, if say, we raised enough for six months or a year….

That would free up some of her time to relax or something.

Dear Wendy Wendy July 3, 2013, 2:39 pm

I will email the LW and let her know about the interest to help financially and discuss different options with her.

avatar Taylor July 3, 2013, 3:28 pm

Wendy, you’re awesome.

avatar MissDre July 3, 2013, 3:29 pm

I will donate!

avatar Meredith July 3, 2013, 9:48 am

Darling! You are an inspiration! I haven’t been married 2 years yet, and I hope that if the time comes and I’m in your position, I can be as selfless as you are. The love you are showing for your husband is incredible and rare nowadays. Please know, even when you’re discouraged, that you are an amazing woman.

That said, I completely agree with Wendy. Get some help!!! The burden of caring for a loved one can be overwhelming and you will not be helping your husband, yourself or your marriage if you get burnt out.

When you do have a good day, where you are feeling that incredible love for your husband, your marriage and your life, write yourself a letter telling yourself how luck you are, the blessings you have, the love you feel. Then you can break it out on bad days and hear from yourself why you want to stick with it.

cmary cmary July 3, 2013, 10:14 am

The church I went to in Arizona offered a service called “The Perfect Place.” It offered caregivers a place where the spouse (or whoever it was they were caring for) could spend a little time with volunteers- doing crafts, playing cards, knitting, whatever, while the caregiver had a bit of a break. Whether the break was to run to the supermarker, get your hair done, visit with a friend. Maybe there’s a place like that near you? Sometimes there are neighborhood groups that will do home visits, just to spend some time and give the caregivers a break. Places exist to offer help, you just have to find them.

When my mom was sick my dad and I took on basically full time caregiver roles. I was working full time as well, so he’d be home with her during the day, and then I’d get home and stay with her while he ran errands or whatever. It consumes your whole life and it’s hard to see a light at the end. But please remember that you need to take care of yourself too. Your health and well-being are just as important as all the things you do for your husband, and if you aren’t 100% everything is 1000% harder. Try to stay strong. This too shall pass.

avatar Mara July 3, 2013, 10:17 am

You are doing great! But you also have to take care of yourself as well. Caregiving fatigue is real. I don’t know what area you live in, but if you can afford it, hire someone from a caregiving agency to come in and help you a few days a week. Ask your healthcare provider, they will know of plenty of options for you. In the rural area I live in, I can think of quite a few agencies that can be contracted to come in a few days a week to help with him. As a healthcare provider, I have experienced burnout a few times. After I take a break and come back, I can be more caring to my patients because I have taken care of myself.

Remember, you are doing excellent!

avatar applescruffs July 3, 2013, 10:30 am

LW, I’m so sorry you’re going through this. I echo what other people said about checking on Medicare/Medicaid if you haven’t already. Your hospital might have a case manager who could work with you on applying for benefits, and I hope you’re eligible for something, especially since your husband likely paid into the system for his entire adult life prior to his accident. If not the hospital or rehab center, you can look at your local community mental health agency. You can get services for YOU – having a therapist to talk to could be wonderful for you – and that agency may also be able to get you hooked into resources for caregivers in your position.

avatar Sue Jones July 3, 2013, 10:32 am

Look up Respite Care in your area. Often they have volunteers that help to give you a break. What do you do when you are at work?

avatar Sue Jones July 3, 2013, 10:34 am

…meaning who takes care of him while you are working? Perhaps this can be extended for times you are at home? Or they can come earlier so you can get ready for work? Do you leave him alone while you are at work?

avatar Miss Terri July 3, 2013, 10:37 am

My heart goes out to you. I agree with a lot of the posters about seeking support. Also, others have mentioned, check with your husband’s physician/insurance company about the possibility of a home health aide. Also ask your husband’s physician about a referral to a social worker who can advise you about community resources that you may not be aware of. And definitely ask your sons for some help in caring for their father. You are not alone, and you sound like an incredible person who needs help and support. As Wendy said – seek support, and to improve both yours and your husband’s life.
Please hang in there – alot of us are rooting for you!!

findingtheearth findingtheearth July 3, 2013, 10:41 am

I dated someone who suffered a TBI while we were dating. We ended up ending our relationship after about 6 months due to violence. It is a very very hard thing to take care of another person. Do not beat yourself up if you get mad, or frustrated. Do not isolate yourself.

If he is on disability, is he eligible for any sort of assistance through Medicare? What about Voc Rehab? Is the employer compensating for anything?

Also, talk to his child, and reach out to yours. It might be worth it for you to look into some sort of counseling/therapy groups for caregivers.

avatar Guy Friday July 3, 2013, 10:42 am

Speaking as someone who acts as a guardian ad litem and advocate counsel for protective placement and guardianship cases, you can’t even imagine how grateful the people involved in this in your community are. Doing what you do is a thankless task, and it’s made harder by watching the man you love morph before you.

In many counties there’s a Department of Aging (or something similar to that) that you can call for assistance with financial and physical resources to assist you. Beyond that, while I don’t usually recommend taking legal action — in fact, I almost never do — in this case you may want to meet with an attorney to discuss filing a petition for guardianship and protective placement of your husband. If the courts get involved, they can order the county to provide you with assistance. The downside is that your husband may resent you for it, but given what you’ve described I don’t know that he’ll really remember his resentment, particularly if nothing changes in his life. What’s more, if and/or when you decide that you can’t handle his care anymore, you’ll be able to find a nursing home or care facility subsidized by the county so your finances aren’t drained further.

avatar MMcG July 3, 2013, 10:50 am

RESPITE CARE!!! Whether it’s formal, scheduled time or just taking 20 minutes out of your day to get a manicure or take the dog for a walk in the park. If you work during the day then it must be ok for your husband to be alone for at least a little while. Ask friends and neighbors, even if you feel awkward doing it, for specific help like Wendy said – whether it’s preparing a meal to have in your freezer, running a errand to the CVS or helping cut the lawn – the little things could make all the difference.

It’s like when you are on the airplane, and if cabin pressure fails you have to put your own mask on before you can help your child/dependents… if you get completely run down and break from caregiving fatigue and the stress of it then there will be no one to care for your husband. It is not selfish to want to, NEED TO, take care of yourself. It is the best thing you can do to take the best care of your husband.

avatar MMcG July 3, 2013, 10:52 am

Oh, and you are AMAZING and as a new wife myself I wish I could find where you live and give you a standing ovation.

avatar MissDre July 3, 2013, 3:31 pm

Totally agree about the standing ovation. It’s hard enough hearing my mom talk about how tough her nursing job is caring for quads. I can’t even imagine having to give that care 24/7 to a loved one. Honestly, bravo! This LW deserves all the love in the world.

avatar Turtledove July 3, 2013, 10:58 am

Please remember that it is your strength and resilience that has carried your family thus far. Just because you are bending under the strain right now, it does not mean you are weak. Caregiving is a difficult and often thankless task. So thank-you. Thank you for your strength and love and generosity.

In many areas there will be some resources available to you and your husband. Things like community centers where your husband might go for a few hours every Saturday to play bingo or volunteers who might sit with him or take him to museums. There may be some good enrichment activities that would bring some joy to your husband’s life and enable him to make some new friends. That in addition to the usual host of government and/or religious sponsored resources. If you aren’t church-minded, there may even be an atheist’s group near you that could offer support and community. I believe that it will just take some time and ingenuity to find out what might be available.

But time and energy are the things you are the shortest on. If I were you, this is a call I would put out to my sons and to my friends– people who would be willing to help you. Ask them to do the internet searches, to make phone calls, to get in touch with the local disabilities offices. This is an easy way to help, to put together a list of available resources. Enrichment and support for your husband, and caregiver support for you. I would think that most people who know of you and your situation would want to help. It’s hard to ask, when you’re so used to being the one who does it all, but go ahead and ask anyway.

And be kinder to yourself. Find the simple things that bring moments of comfort and joy to your life. Maybe that’s drawing or journaling or writing poetry. Maybe that’s sitting in your garden or enjoying a cup of really good tea. Treat yourself to a small luxury every day.

lemongrass lemongrass July 3, 2013, 11:06 am

You are such a strong person for taking care of your husband. I can’t imagine how hard it must be for you. Please, please, reach out to those around you for help. Even if all you need to do is vent you can find a friend in just about anyone.

I used to work as a cashier in a smallish town and there was one lady who was a regular. She was always rushed and pretty rude. I just kept being polite and one day she said that her husband had a massive stroke a year before and taking care of him was really hard. From then on she always came through my till and she talked and I listened. She always thanked me for lending an ear. I didn’t mind at all. If you need to confide in someone and you feel you don’t have someone, you do. You just haven’t figured out who they are yet.

bittergaymark bittergaymark July 3, 2013, 11:16 am

Wow. Tough crowd — some of you. “Why can’t he just magically get better!” “20 steps? Why can’t he haul his ass to the bathroom!” “Dump him! Your happiness is all that matters…”

Ladies. Whoa. Just whoa. Good luck if ANY of you ever become seriously ill or injured.

Wendy offers good advice, LW. Reread it extensively. Most importantly, YES! There must be some sort of online support network for people in situations like yours. A place where people will truly understand what you are going through. And not horribly chime in like the cast of HEATHERS in the sequel that shall never happen… A place where you can find strength and support.

PS: Hang in there. I’m holding good thoughts for you…

avatar MMcG July 3, 2013, 12:16 pm

WOW You couldn’t refrain from being a judgmental ass for one letter!?! And since you couldn’t flip out on the LW this time, you decided to pick on all of us “ladies” and infer we wouldn’t deserve to be cared for because we are suggesting that this woman give herself some respite care. Way to be critical of a bunch of commentators that are doing nothing but offering their support, suggestions and encouragement.

avatar lets_be_honest July 3, 2013, 12:23 pm

I was so curious to see his comment today, because I too was like, there’s no way he can say anything mean about this LW. I was actually surprised people suggested that he “try harder” or whatever, seeing as how the man is clearly very, very disabled. So I can’t disagree on that point.

avatar ktfran July 3, 2013, 12:44 pm

Agreed. I’m pretty sure he was directing that comment towards the people telling her that her husband should be trying harder. Although I don’t think anyone said dump him.

avatar Taylor July 3, 2013, 12:54 pm

My goat was gotten (got?) at the “cast of Heathers” part. This set of comments is pretty hard to snark at.

avatar MMcG July 3, 2013, 1:41 pm

I would like to think that the folks that were raising the issue of his care and rehab were doing so out of concern, and raising the flag of depression, because the LW doesn’t mention ANYTHING that her husband does. It could just be that it wasn’t relevant to giving her a boost, but I think that people who have suffered injury or illness can get depressed and/or lazy and it can be very hard to get out of the cycle… and raising the question about his level of treatment and what the future may hold for him is legit. Especially since it sounds like the accident is the major problem, but there were already some health issues present that husband didn’t deal with as well before (diabetes) and may have given up on now.

avatar Bunnycsp July 3, 2013, 12:59 pm

yea, I feel like a bunch of the comments were acting like he was simply lazy.

bittergaymark bittergaymark July 3, 2013, 1:32 pm

There were an alarming number of those at the top. And reading comprehension is lacking around here. I said “SOME”… Moreover, the bitchy cast if Heathers was just three people. And I thought several of the comments were rather naive. And I was satizing that. The comment about the bathroom set me off…

avatar MissDre July 3, 2013, 3:35 pm

Of course you have to pick out the 1 or 2 comments that you don’t agree with, instead of taking a look at all the people that jumped to the LW and her husbands defence, and the 100 or so other comments of people being kind and encouraging and telling her she’s amazing.

avatar Bunnycsp July 3, 2013, 4:01 pm

They are at the top of the page though (I understand that is timing) but still. I was appalled by them. I mean, saying someone is disabled and in adult diapers just needs a little physical therapy and just needs to want it bad enough is really insensitive.

avatar MissDre July 3, 2013, 4:11 pm

Of course it’s insensitive, but it’s 1 or 2 comments out of more than 100, plus a ton of people jump in to defend the LW against that comment. This thread is a wealth of wonderful support and encouragement, but Mark just has to turn absolutely everything into something negative. Instead of responding to that individual comment he criticizes everyone and it’s the same old story every time. I’m just so sick of his negative bullshit all the friggin time.

bittergaymark bittergaymark July 3, 2013, 6:24 pm

Whatever. There were a series of posts basically accusing him if being lazy. They are, I think, in the history of Dear Wendy the most idiotic of posts ever. They REALLY needed to be called out. They were beyond shitty and made by multiple posters… Talk about negativity.

avatar KL July 3, 2013, 7:31 pm

Then reply to the comments that offended you, rather than just doing the “drop in and generalize about women” thing.

bittergaymark bittergaymark July 4, 2013, 3:00 am

There were no generalizations about women — I was specifically addressing the women I said made up a tough crowd…

Lindsay Lindsay July 3, 2013, 1:02 pm

It may have been misguided, but I don’t think anyone was calling him lazy or being malicious about it. I shadowed an occupational therapist briefly, and I think a lot of her patients weren’t aware of what sorts of skills they could relearn or improve upon until actually meeting with her and going through therapy. And I do think many people with disabilities feel better when they are able to do more for themselves. Certainly, this many not apply in this case, but there’s no way of anyone here knowing exactly what their situation is.

Lindsay Lindsay July 3, 2013, 2:00 pm

Actually, I take that back. I went back and reread and this “it’s 20 steps, for crying out loud” and “he needs to take responsibility for his poor health” is pretty bad. Asking if OT or PT would help is one thing, but snarking on his inability to take himself to the bathroom is insensitive.

bittergaymark bittergaymark July 3, 2013, 2:36 pm

Only saw your second post after posting my next post below…

bittergaymark bittergaymark July 3, 2013, 2:19 pm

Eh. In my book suggesting that somebody clearly disabled wears diapers simply because they are too lazy to use the twenty steps the can walk (with a walker, no less!) to get to the toilet is beyond the pale of misguided… Frankly, that my comments on that post are even remotely controversial shock me.

avatar iseeshiny July 3, 2013, 2:20 pm

Nope, I’m with you on this one.

avatar bethany July 3, 2013, 2:29 pm

I’m with you on that, too. This isn’t someone who is lazy or just not trying. We’re talking about a freaking SPINAL INJURY and a broken hip. If you’ve ever thrown your back out, multiply that by about 5,000 and that’s what this poor man (and LW) are dealing with. Suggesting he try harder to make it to the bathroom is inane.

Lindsay Lindsay July 3, 2013, 2:31 pm

Hey, I took my comment back.

bittergaymark bittergaymark July 3, 2013, 2:57 pm

I know. But i was typing mine in between phones calls so I only saw it AFTER my response…

Lindsay Lindsay July 3, 2013, 3:59 pm

Ahh, OK, makes sense. If only the editing of comments wasn’t so finicky on here, or I could have made it easier to see my thought progression!

avatar rachel July 3, 2013, 12:27 pm

I don’t think anyone told the LW to dump him…in fact I think most of us praised her for sticking with him in tough times. I’ll grant you the bathroom comment was a bit misguided, but multiple people then explained why that was so.

avatar temperance July 3, 2013, 12:31 pm

No one suggested that she leave her husband. (In fact in these scenarios, when the woman is the party who suffers an injury, the man is more likely to leave.)

Respite care is not ditching her husband, but providing her with a healthy and necessary break from the constant stress of providing a high level of care.

avatar A La Mode July 3, 2013, 2:03 pm

“Ladies. Whoa. Just whoa. Good luck if ANY of you ever become seriously ill or injured.”

Seriously, thank you. There is nothing more depressing, disheartening, insulting, and enragening (yeah I know that’s not a word but I don’t care) than hearing someone tell you “Uh… you should be able to do THIS or THIS by now, why aren’t you trying harder” when you are recovering from a severe injury. There are very few people in this world who WANT their wives to literally wipe their asses, or to have it be so hard to do anything enjoyable because you don’t have the strength or energy to have fun. Being in a wheelchair and unable to void my own bowels was the most humiliating, horrible experience of my life.

I know I’m probably reacting a bit too strongly, but until someone has really BEEN THERE, they have no fucking clue what it’s like. Even I don’t know what it’s really like for LW’s husband because he has a different set of circumstances and is a different person. I do know though that I had vivid day dreams about punching the living hell out of people’s faces when they would insult my pride by wondering why I kept “choosing” to shit myself.

avatar Exhausted July 3, 2013, 11:46 am

LW here with a HUGE thank you. You have no idea how much your suggestions and support are helping.

A couple of clarifications. My husband’s injury was at work, and due to multiple denials by the worker’s comp insurance company, he did not get the care he needed and most of the injuries were fused as they are. When a judge finally ordered the company to treat him, it was too late. Because the injuries occurred at work, our private insurance won’t treat, and after two years in this state, worker’s comp only gives minimal care.

I can leave him when I work, but I have to get home at lunch to care for him. I go grocery shopping, banking, errands and the like, but with so much to do working, caring for him, laundry, housework etc., there is little free time for myself.

As to getting help. This is the first time I have asked for it. Always having been the one to say, “no worries, I’ll take care of it”, I don’t think I ever learned to ask. You have all given me not just the strength to ask, but positive and concrete things to ask for. You have no idea how much that means!

It’s been a long four years with lots of ups and downs. I finally realized the downs are more than the ups and I need to find a way to change that balance. Going to a church for help, finding a support group, spending time with friends talking about anything but work or housework, and watching comedies will all help more than you can imagine.

Wendy, you and your family here are wonderful. I hope this column helps not just me, but perhaps another reader will see their self in me and learn to ask for help also. It’s a hard thing to learn, but I just took a giant step.

Thank you one and all!

Annie

avatar Bunnycsp July 3, 2013, 1:12 pm

LW – I had a friend who had a baby with severe crying because of a health problem. I once stopped by her house unannounced and she was frazzled, her house was a mess, and both her and the baby were crying. I found that her husband was out of town and the baby just wouldn’t calm down and she hadn’t seen another adult in days. As her friend, I said, “Why didn’t you call me?” she said that she was just so deep into it that she just thought it was easier to handle it than to take the time to ask for help. I sent her to the shower, took the baby, cleaned and she cried because she was so grateful.

I feel like this is the same issue. You have been handling this so well, for so long. It is worth it to do the research. There is so much help out there and this research is a great job to give your sons. Do meals on wheels, look for clubs for disabled people that your husband can go to once a week. Adult care, I know there are government programs available on the local, state, and federal level. Find an online community for caregivers that can show you the path to sign up for all of this. You are not alone.

And rent Bridesmaids…it is so funny.

avatar MMcG July 3, 2013, 1:44 pm

Good luck Annie and we are here if you need up… just start a forum post and we can comment until the sun goes down whenever you need some encouragement.

Bless you, the hardest step is even realizing that you need help – and you are already there!!

avatar A La Mode July 3, 2013, 2:06 pm

Annie, please look into suing in order to secure more funds for better and continuous care. I’m not a lawyer, but it sounds to me like your husband’s extreme state is the fault of his employer.

avatar ktfran July 3, 2013, 2:21 pm

I think most people have to learn to ask for help. It’s not inherent because we think we need to do everything ourselves and like to be in control. That was me, until I learned it was ok. And my life is better because of it. IT’S OK TO ASK FOR HELP! And if people are a holes about it, that’s on them and their miserable lives, not you.

avatar painted_lady July 3, 2013, 2:44 pm

The_attack might know this information a little better, but I know that you don’t have to be or have a kid to avail yourself of a social worker. This might help you sort through some of this mess, if you haven’t done so already. Finding the right agencies, making the right phone calls, using the right terminology can all be really overwhelming, especially when you’ve got so much going on. I would call the nearest hospital or your husband’s primary physician to see where to start with this. If they don’t know the answer, they can usually point you in the right direction.

Also, one of the things that helps me when I’m beyond overwhelmed is to make a list of things that you have to do in priority, as in, things that you MUST take care of immediately, like diapers and dog puke, versus things you can wait on, like a meal – it can wait an hour! – or making your husband more comfortable (not talking pain, just “I need a pillow) whatever it feels like MUST happen. When you’re in go-mode, you’re not really prioritizing but just spinning all the plates as they’re thrown at you. And if you can remember in the moment that not everything is life or death, then it helps you carve out some time for you. And sometimes, you-time SHOULD be on that “must take care of immediately” list. I know you love your husband, but even the best of patients can sometimes fail to recognize that they’re straining their caretakers with requests, and it’s sometimes very difficult for a caretaker to tell the cared-for the word “no.” When my mom ruptured her Achilles’ four years ago and was in a wheelchair for six weeks, I was with her the most, and one night I was leaving a rehearsal for a show at 11pm, an hour away from home. She asked if I would pick up some bridge mix and bring it to her, which would have added a half hour to my drive. I agreed, but then I couldn’t find bridge mix anywhere. After my third store, I finally realized, holy hell, bridge mix, really mom?!?! I called her back and told her I was tired and couldn’t find any and needed to get home so I could get up for work the next morning. And she was not only completely understanding, she felt badly for asking because she hadn’t thought about all that was going to entail. And “no” was fine. I’m not saying abandon your husband and never do anything nice for him, but when the choice is something nice for you (including giving yourself a break) versus something nice but ultimately not vital for him, you get to choose yourself sometimes.

theattack theattack July 3, 2013, 2:53 pm

In Tennessee we have Adult Protective Services that can help find resources in situations like this. Most states should have something similar. Although they typically deal with elder abuse, they might be able to refer you to someone who can help fill in the gaps because they’re experts at area resources. I’m not very knowledgeable of specific services in this area, so I always call someone at that office to ask for advice and referrals. If the LW’s husband has any medical home health care, there should be social workers at that agency that can put her in touch with other caregivers and resources too. There are definitely social workers that can help this LW find help.

avatar captainswife July 3, 2013, 4:56 pm

God bless you, Annie. You are an amazing woman, and your strength just shines through. You’ve really taken on a load here, and I so wish things could be different for you.

I know how it can be when you’re overloaded — you forget to tell anyone how bad it really is. Or you think that they have their own worries and their own lives. The thing is, though, that while everyone has rough spots, there is SOMEONE in your community who has the time and love and willingness to help you out. That person just needs to know that you need him or her. This is why you need to ask — in a way, you’ll be giving that person a gift: the opportunity to help someone who needs it. And you certainly need it.

Don’t be afraid to ask for help. It doesn’t mean that you don’t love your husband. Or that you’re not good enough, or strong enough, or any of those things. You are amazing.

Keep us posted; we’d love to hear how things go for you.

avatar Sally July 3, 2013, 12:01 pm

Here is the weird thing that helped me when taking care of a beloved relative during a severe illness: every day I would ask myself “is there anything better that I could do than this?” Of course, the answer was no 29 days out of thirty. When you love someone deeply it’s almost always easy to see that caring for them is the best thing you can do with your time. Maybe not the most enjoyable but usually the best. Answering that question made me feel like the more onerous tasks (adult diapers, fetching the one millionth trivial item, etc) were ones I had chosen. Because I _had_ chosen them. I owned my choice to serve instead of feeling victimized by having service thrust upon me. My feeling of control, my feeling of choice made the whole thing much easier.

On that thirtieth day? Or that third day during a particularly shitty week? The one when I could think of something better and meant it? I called in another caretaker, and I got the fuck out of there. I went to the movies. I went to the gym. I took a long nap in a hotel room and ordered a pizza. I hung out with friends. I got my hair cut. I sat on a bench under a tree and breathed with my mouth open. You’re a person whom you should care about and a person who needs care too, and it’s okay to make that care one of your priorities. There’s no benefit in becoming a martyr to anyone, no matter how much you love them. They love you back, and they shouldn’t want that from you.

Wendy and other posters have offered really good advice about finding friendships and support systems and so on. Take some of it.

Best of luck and warmest internet wishes, letterwriter.

avatar Datdamwuf July 3, 2013, 12:09 pm

LW, I heart your love for your husband and your amazing strength. Please take at least an hour a day for yourself, set it aside and do something (or nothing) that helps you re-charge. Sit outside and watch the birds, something like that might help. You said he’s on disability, have you checked to see if there are any programs that will give you some amount of home care? Also, I wonder if you contact a hospice they might be aware of programs that could give you help with your husband. Maybe there is a volunteer program, there might be a local IRL, support group you could join that would also be of help. When I’m deepest down I remind myself of the beauty in the world, take a bit to watch the butterfly landing on the bushes, the hummingbird coming to my feeder, even the silly squirrel taking a dust bath. I’m sorry I don’t have any way to give you joy in your life personally.

avatar rachel July 3, 2013, 12:21 pm

LW, I just want to say you sound like an awesome person, and it’s wonderful how much you care for your husband. I hope you can listen to Wendy’s suggestions to find *some* help, because you shouldn’t be shouldering this burden all on your own. You need to take care of you, too. And it’s totally okay to feel overwhelmed and resentful once in a while, I would be surprised if you didn’t. Maybe it would help if you tried to spend a bit of time with your husband rekindling some of your early passion – have a romantic dinner, even in your own home, or watch a movie that you always liked to laugh at together. That way you will have moments to pause and make you smile on those bad days.

avatar temperance July 3, 2013, 12:34 pm

LW – this link may have some helpful information for you. http://www.medicare.gov/caregivers/caregiver-topics-support.html. There are local links included there as well, and I hope you can find a group locally to have your back.

avatar Samantha July 3, 2013, 1:13 pm

LW, you are such a beautiful person. Your love for your husband is evident throughout your letter and your update in the comments.

Asking for help and encouragement here was a perfect first step in asking for help and support from your community. I think, especially since you seem like such a kind person, you’ll find that people will be more than happy to help you and your husband carry this load.

avatar iseeshiny July 3, 2013, 2:10 pm

Hey LW, you are awesome! You are doing great things and for great reasons, and you deserve every word of praise from everyone on here and more.

My advice for is is please do reach out. You really don’t have to go through this alone. Wherever you get support – family, friends, community – you are not at all selfish for using that support. It doesn’t make you weak or a bad person. The fact that you are taking care of someone else makes it that much more important to take care of yourself, too – if you aren’t healthy and sane you cannot manage anyone else’s health or sanity. So please do go get a massage, or take an hour a day to be by yourself, or whatever things you need to do to recharge yourself. I know this metaphor has been used before but you have to put on your own oxygen mask first, right?

You are a brave lady and I admire you a lot.

avatar BreezyAM July 3, 2013, 2:12 pm

This is such an exhausting role. I just want to tell you I care about you and your struggle, and that you’re doing the best you can and more than many would sign up for. Please do reach out to get support because otherwise you will burn out and a burn out is VERY UGLY when it happens. As for words… Just think to yourself “it won’t always be like this. I don’t know when or how it will change, but someday it will, and that help will come, we’ll find a way, we will.” And make sure to keep looking for it and be open to it! Not ALL services cost money! Also, I’m part of a group of people who regularly donate rather significant chunks of change to a friend of ours who is a primary caregiver for a severely disabled child with a terminal illness. We make good use of paypal and shove it forward each to our own means, because we know if we were ever in such straits it would come straight back to us. This has enabled our friend to buy toys, fans, and precious respite services for when he just cannot take it one more minute. Ideally, these services would be provided by health care and society, but we aren’t going to wait while that ship sails. Maybe you’ll find some similarly minded friends?

avatar MissDre July 3, 2013, 3:14 pm

My mother, who has been a rehabilitation nurse for 35 years caring for quads, suggests looking for some kind of respite care. Look for free community services/volunteers or see if there is any kind of government paid respite (housekeeper or respite nurse). My mom does that now that she’s retired. She offers respite nursing care to families who have babies with a tracheotomy. I’m not sure where you are, but in Ontario Canada there is a paraplegic association that offers different kinds of freebies, so look into something like that. A family physician could also line you up with a social worker who can look into community resources for you. You may also qualify for various subsidies. Ask lots of questions and try to find whatever services you can that will assist you, because if you have those services you can give yourself some time to rest.

Other than that, my mother says God Bless You. She knows how hard your struggle is. The rest of Wendy’s advice is fantastic. Seek out moments of joy anywhere you can. I am not Buddhist at all but sometimes I go to the Buddhist centre just to listen to the talks about finding peace. It’s very calming and comforting and it’s free.

We are all thinking of you and wishing you the very best.

avatar Exhausted July 3, 2013, 3:22 pm

LW here again. I truly appreciate the thought of y’all wanting to donate. It’s beautiful that you care so much.

I would ask that, if anything, you donate to Wendy to keep this site going. You have been a godsend to me, and I am sure there are many more folks out there just like me that look forward to reading this column and all the comments every day. It is truly a bright spot in my life!

Thank you!!!!!

avatar Taylor July 3, 2013, 3:34 pm

Annie, you rock. I hope you get all the help you need and deserve. And seriously…housecleaning help, spafinder gift certificate, there’s a lot of people here happy to pitch in…

avatar A La Mode July 3, 2013, 3:55 pm

I can’t think of someone I know right now who deserves some pampering more than Annie. Seriously, I want to send you some shower bombs! They turn your morning shower into a little spa retreat.

avatar Amanda July 3, 2013, 4:23 pm

I love you Annie! You are such an amazing person! I will be sending positive thoughts to you and your husband for a long time.

avatar DatDamwuf July 3, 2013, 9:55 pm

I’d be able to do small amount to get you enough to hire relief Exhausted, I’m sure others would too! If you could give your info to Wendy maybe we could set up a fund on http://www.gofundme.com/donate-online/

Not like a big deal, but enough to give you a break.

Jodie hugs to you :)

avatar DatDamwuf July 3, 2013, 9:56 pm

Um, that should have been “Jedi hugs”

avatar Lucy July 3, 2013, 5:06 pm

I haven’t had time to read all the comments. But reading this letter reminded me of this article I read the other day which is unsparing in its explanation of how shitty pain management practice is these days:

http://well.blogs.nytimes.com/2013/06/26/the-problem-with-pain-pills/

My husband died a couple months ago of complications of cancer treatment. For the last month of his life he was in constant, near-excruciating pain, and consequently was taking large doses of opioids. It was amazing (and not in a good way) how the pain and then the pills turned him into a different person than the man I’d known for over ten years. I’m not sure this encouragement, exactly, but I would just suggest the LW keep encouraging her husband to push forward, attempt to make some progress in rehab so he feels more independent and capable, and try to find different ways of managing his pain with a doctor who doesn’t just prescribe pills. Sorry if this is repetitive of what others have already said!

mrmidtwenties mrmidtwenties July 3, 2013, 6:52 pm

What an awful and terribly painful situation to be in. My mom is in a very similar situation. Though my dad’s personality has changed very little, he is definitely still mentally very there. We’ve slowly been watching my dad get worse for years, and he’s now bed confined and can’t walk at all. He’s also in constant excruciating pain, and can’t even feed himself. The biggest thing I can tell you from being apart of this, is ask for help. My mom hates asking for help, but every time she does, something that lifts the burden happens. There’s so many services available, but it can be so overwhelming. If you start by accessing one service, they will often help you with accessing other services. My dad now has a nurse that comes twice a day for an hour, a hospital bed, and now a lift and a wheelchair that allow him to go outside (he went outside for the first time in 2 years the other day and it was amazing). All these things only happened because my mom asked for help. The great thing about these services is that they want to help you and will do most of the work for you, you just have to get started. So my two pieces of encouragement would be, ask for help and give yourself something to look forward to, whether it’s an hour with a friend each week, or playing with the dog, or a phone call with your kids. My other piece of advice is to anyone who knows a caregiver, offer to give them a hand, and be willing to do the less than “glamorous things.” Everyone wants to cook, or spend time with you, or bake you something. These are often don’t make life that much easier for a caregiver. Things like cleaning, yardwork, and home repairs and maintenance are often things that caregivers need.

avatar Lucy July 4, 2013, 8:35 am

Here’s some more info the LW might find helpful : http://opinionator.blogs.nytimes.com/2013/06/26/in-networks-for-people-with-disabilities-a-good-life-is-the-goal/

avatar Crazy in Love July 5, 2013, 1:43 pm

I truly feel for your situation. I am a mother of two special needs children (both adopted). I understand being in a high stress caregiver role and feeling frustrated, angry, hurt, and unappreciated. Being a caregiver is one of the hardest roles you can have. The most important advice I can give you is to take care of yourself first. Make time for you. If you’re on empty, you aren’t any good to those around you. Find someone to come sit with your husband once a week for several hours. Go to a movie, walk in the park, read or listen to a book, go shopping, get a pedicure, go to the gym, etc… Have time for you to unwind from all the stress. Maybe seek out a community group in an area that you are interested in (a community choir, sewing, book club, etc…). I would also recommend long, hot bubble baths with soothing music. Every night if you have to. And if your husband is unable to fulfill you sexually, buy yourself a great toy and use it as often as needed! Releasing sexual tension will have a great impact on how you feel.

My heart goes out to you. But it’s time to take charge of YOUR life and not let circumstances dictate your future completely.

I wish you well.

avatar Kate July 8, 2013, 10:43 am

Annie, something no one else seems to have mentioned so I thought I’d put it out there. It sounds silly and trivial but I’m a Yankee and was raised with the concept of busy fingers and it’s something that might help your husband a little.

A hobby for him.

Doesn’t have to be big or expensive– some watercolor kids’ paints and paper from the dollar store, or some jewelry parts to assemble into something pretty for you, or knitting, or whatever. Something to keep his hands busy a little.

I’m a chronic pain patient myself and it helps. Maybe it will help him a little. And it might be something a little silly you could do together, even.

avatar 1sunnyday July 9, 2013, 10:02 am

You know, I’ve been on this site for a couple of months now (thoroughly enjoying it!) but haven’t had the urge to submit a comment until now.

Something touched me about this writer. I’m a grown woman in my late 20′s with parents who’ve just divorced and in spite of my age, it’s been really hard (you think as an adult you’ll deal better). I’ve just been really examining what family truly means, unconditional love, commitment, vows, personal happiness (at what cost), and more. And I have to say I really admire this woman. She shows remarkable strength, courage, perseverance, and loyalty.

It’s GOTTA be hard to be in that situation with her husband, yet in a world where everyone is basically looking out for themselves, she is demonstrating REAL,TRUE love for her husband. How rare is that!?That is SUCH true character. You don’t see it enough these days…or at least I don’t hear about them enough.

So writer, I don’t have specific encouragement (in fact, you’re more of an encouragement to me!) but hang in there. Faith personally helps me get through challenging times. Faith and reading! A good book is like an escape to momentarily be in my own little bubble.

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