How are you his "caregiver" exactly?

I have a serious chronic illness and was married to a lazy af guy who did nothing but make more work for me to do to deal with him. I was living like a single parent who did it all with a demanding job and so dealt with him as long as I could to protect my child. Now we're on our own, I continue to find ways to outsource things (having groceries delivered is so essential), and I am very serious about lifestyle changes that could boost energy.

I'd just take him out of the equation in terms of life work - it rarely works to try to change other people - and find ways to operate as a single parent with the father who lives in the home. If he's emotionally abusive to you, that's another issue.

Anonymous wrote:OP here. Thanks for letting me vent. He work up at nine and helped me with several things today. I would never divorce him as the kids and I love him and he is a good person with a serious chronic illness (through no fault of his own.). Re being up at 8, we both work full time so weekends are full of errands, bday parties, etc. We do already outsource quite a bit. I will continue to work on communication and will think about counseling/support group. The stress/worry of being the caregiver is tough, so thanks to you who understand.

If he's working full-time, helping when he can, what more are you looking for. Turn down parties if necessary. Order online for things you need. Have groceries delivered. Hire a lawn service every two weeks and a housekeeper even just monthly, if you can afford it.

[quote=Anonymous][quote=Anonymous][quote=Anonymous]I’m not mad at him for being sick, but boy am I tired of picking up all the slack. His defense mechanism is to pretend what I’m doing is not a big deal, which is more infuriating. The only thing he consistently does is work. Aside from that I pretty much feel like I am a single parent with a part time babysitter who swoops in when he feels like it. For example, it’s 8:00 and he is the only person still asleep in our house while I clean and get ready for next week.[/quote]

Is he diagnosed chronically ill like with a condition? Or is he just chronically tired and self diagnosed? [b]Why is he selectively Ok at work but then not OK at home? [/b]Perhaps he needs to hire more help since this is not a good priority.

Either way you need coupled counseling to communicate better and not feel taken advantage of and also whatever he is feeling.
[/quote]

I have two autoimmunue diseases. Both cause fatigue. One is Crohn's. I am also immunosuppressed due to biologics, so I get frequent viruses and infections on top of the autoimmune disease symptoms. I work full time as an elementary school teacher which takes about 3 of my 5 spoons for the day. I have to work in order to receive good health benefits. I would 100% prefer to not work and be able to do the majority of the household work. I don't have energy for both. My husband definitely resents it and truly doesn't seem to fully understand how I feel on a day to day basis. I feel guilty about it and used to try to hide how crappy I felt but that didn't do me any good. I have started to try to communicate more so that he better understands what I deal with.

Sometimes when he's being kind of a jerk about it I ask him what he'd prefer. Me to continue working in order to have great medical benefits where my $10,000 biologic infusions I need every 6 weeks are covered except for a $20 copay but I need to rest when I get home from work, or for me to stop working and have energy to do the grocery shopping, cook meals, do the sports practice runs, clean the house etc but have to be on his extremely high deductible/ high copay medical plan without my salary.

That's a long answer to your question. [/quote]

OP here. This feels very familiar. I thank goodness every month that insurance covers the meds. He also gets sick a ton on the winter. Take care.

Anonymous wrote:

Anonymous wrote:
You have my sympathy, OP.

My mother has been chronically ill her whole adult life, with multiple sclerosis. Chronic illness does something to a lot of patients: it makes then self-centered. If they cannot contribute, they start making light of others’ burdens out of self-defense, otherwise in a busy household they would feel guilty all the time. My father has done everything in the house for many years, was the sole breadwinner as well, and has up til now, at 70 years old, displayed angelic patience. He was rarely appreciated fairly by my mother. Now he is starting to weaken cognitively, losing his filter, and gets upset at her... I feel the next decade isn’t going to be pretty.

It’s SO HARD to get out of that cycle, and it takes humans with a high degree of emotional intelligence to manage the guilt/resentment, especially in periods of stress. I recommend finding a therapist specialized in dealing with chronic diseases, particularly the one your husband has.

Good luck to both of you, and your kids.

That sounds more like dementia and you sound like a pretty mean person. She is not self-centered and you don't really understand it given your post.

Stop. Do not disrespect me in this way. I am a research scientist plus I lived in that household as a child. I know everything there is to know about my family situation and am sympathetic to OP's.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
You have my sympathy, OP.

My mother has been chronically ill her whole adult life, with multiple sclerosis. Chronic illness does something to a lot of patients: it makes then self-centered. If they cannot contribute, they start making light of others’ burdens out of self-defense, otherwise in a busy household they would feel guilty all the time. My father has done everything in the house for many years, was the sole breadwinner as well, and has up til now, at 70 years old, displayed angelic patience. He was rarely appreciated fairly by my mother. Now he is starting to weaken cognitively, losing his filter, and gets upset at her... I feel the next decade isn’t going to be pretty.

It’s SO HARD to get out of that cycle, and it takes humans with a high degree of emotional intelligence to manage the guilt/resentment, especially in periods of stress. I recommend finding a therapist specialized in dealing with chronic diseases, particularly the one your husband has.

Good luck to both of you, and your kids.

That sounds more like dementia and you sound like a pretty mean person. She is not self-centered and you don't really understand it given your post.

Unless you have been married to someone with MS, you have no idea what you’re talking about.

I cared for someone with dementia, far worse for many years. I have a chronic illness so yes, I know how it feels. Thank goodness I'm not married to you.

I have both cared for someone with dementia, and been married to someone with MS. I repeat, you have no idea what you are talking about.

DP. Don't bother. You are right, of course, but the poster you are responding to won't listen to reason. I recognize the poster you are talking to. She believes caregivers should be subject to the worst abuses, and it is fine because the abusing spouse is sick. She lashes out at anyone who even remotely suggests that caregiving can be hard for the caregiver, even when the sick spouse is also abusive. I am convinced she is an abusive spouse.

You haven idea what its like to have chronic illness. No one is talking about being abusive but you as you are looking for something not there.

There are a ton of support groups out there specifically ones for caregivers.

If it is something like RA there are ways to minimize the pain (that don't include lifelong presciptions) which is what DH struggles with (so I totally understand how resentful it can be AND he is such a Debbie Downer about everything since he isn't feeling very well which makes me disappointed and grumpy and than that wears off on the kids).

Have you talked to the doctor to weigh options for pain mgmt?

Anonymous wrote:

Anonymous wrote:I’m not mad at him for being sick, but boy am I tired of picking up all the slack. His defense mechanism is to pretend what I’m doing is not a big deal, which is more infuriating. The only thing he consistently does is work. Aside from that I pretty much feel like I am a single parent with a part time babysitter who swoops in when he feels like it. For example, it’s 8:00 and he is the only person still asleep in our house while I clean and get ready for next week.

Is he diagnosed chronically ill like with a condition? Or is he just chronically tired and self diagnosed? Why is he selectively Ok at work but then not OK at home? Perhaps he needs to hire more help since this is not a good priority.

Either way you need coupled counseling to communicate better and not feel taken advantage of and also whatever he is feeling.

I have two autoimmunue diseases. Both cause fatigue. One is Crohn's. I am also immunosuppressed due to biologics, so I get frequent viruses and infections on top of the autoimmune disease symptoms. I work full time as an elementary school teacher which takes about 3 of my 5 spoons for the day. I have to work in order to receive good health benefits. I would 100% prefer to not work and be able to do the majority of the household work. I don't have energy for both. My husband definitely resents it and truly doesn't seem to fully understand how I feel on a day to day basis. I feel guilty about it and used to try to hide how crappy I felt but that didn't do me any good. I have started to try to communicate more so that he better understands what I deal with.

Sometimes when he's being kind of a jerk about it I ask him what he'd prefer. Me to continue working in order to have great medical benefits where my $10,000 biologic infusions I need every 6 weeks are covered except for a $20 copay but I need to rest when I get home from work, or for me to stop working and have energy to do the grocery shopping, cook meals, do the sports practice runs, clean the house etc but have to be on his extremely high deductible/ high copay medical plan without my salary.

That's a long answer to your question.

OP here. Thanks for letting me vent. He work up at nine and helped me with several things today. I would never divorce him as the kids and I love him and he is a good person with a serious chronic illness (through no fault of his own.). Re being up at 8, we both work full time so weekends are full of errands, bday parties, etc. We do already outsource quite a bit. I will continue to work on communication and will think about counseling/support group. The stress/worry of being the caregiver is tough, so thanks to you who understand.

Anonymous wrote:I’m not mad at him for being sick, but boy am I tired of picking up all the slack. His defense mechanism is to pretend what I’m doing is not a big deal, which is more infuriating. The only thing he consistently does is work. Aside from that I pretty much feel like I am a single parent with a part time babysitter who swoops in when he feels like it. For example, it’s 8:00 and he is the only person still asleep in our house while I clean and get ready for next week.

Is he diagnosed chronically ill like with a condition? Or is he just chronically tired and self diagnosed? Why is he selectively Ok at work but then not OK at home? Perhaps he needs to hire more help since this is not a good priority.

Either way you need coupled counseling to communicate better and not feel taken advantage of and also whatever he is feeling.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:
You have my sympathy, OP.

My mother has been chronically ill her whole adult life, with multiple sclerosis. Chronic illness does something to a lot of patients: it makes then self-centered. If they cannot contribute, they start making light of others’ burdens out of self-defense, otherwise in a busy household they would feel guilty all the time. My father has done everything in the house for many years, was the sole breadwinner as well, and has up til now, at 70 years old, displayed angelic patience. He was rarely appreciated fairly by my mother. Now he is starting to weaken cognitively, losing his filter, and gets upset at her... I feel the next decade isn’t going to be pretty.

It’s SO HARD to get out of that cycle, and it takes humans with a high degree of emotional intelligence to manage the guilt/resentment, especially in periods of stress. I recommend finding a therapist specialized in dealing with chronic diseases, particularly the one your husband has.

Good luck to both of you, and your kids.

That sounds more like dementia and you sound like a pretty mean person. She is not self-centered and you don't really understand it given your post.

Unless you have been married to someone with MS, you have no idea what you’re talking about.

I cared for someone with dementia, far worse for many years. I have a chronic illness so yes, I know how it feels. Thank goodness I'm not married to you.

I have both cared for someone with dementia, and been married to someone with MS. I repeat, you have no idea what you are talking about.

DP. Don't bother. You are right, of course, but the poster you are responding to won't listen to reason. I recognize the poster you are talking to. She believes caregivers should be subject to the worst abuses, and it is fine because the abusing spouse is sick. She lashes out at anyone who even remotely suggests that caregiving can be hard for the caregiver, even when the sick spouse is also abusive. I am convinced she is an abusive spouse.

Anonymous wrote:

Anonymous wrote:DP here. My DH is sole breadwinner and I am SAHM with chronic illness. He has taken care of me, our two kids, and the house for more than 6-7 years. He helped me to get help for my condition and after a long time, I have become somewhat functional again. Yes, we outsource a lot of work and I was able to at least direct the people we hired to help out but it was not a great situation. I am so thankful to my DH for not losing his patience with me and being the most compassionate person. I sympathize with your situation and I know it is tough. The only path forward is to outsource as much as you can and get a lot of insurance for both of you. Hopefully, he will recover somewhat and things will become better.

This is why your situation is nothing like the OP.

How would your DH react if you told him hiring cleaners was NBD and he wasn’t even the one who was home to talk to the handyman and babysitters he hired? Would he still be compassionate with you if you said all the things he did to help you weren’t that hard and didn’t take much time?

My DH would have been extremely happy if I could at least work and hold a job. This would be more than what he got from me for many years. I had a person who came to bathe me because I was unable to take care of me. If I was working then it would have meant that I am able to take care of myself, go to work for at least 8 hours and then drive back home.

Maybe it is a gender thing. DH did not stress if the house was messy as long as I was still alive when he came back each day. My kids would check in to see if I was still breathing. I am sure if the situation was reversed the disorganization of the house would have made me resentful. So, I get it. I am trying to put in another perspective of how many men and women are dealing with a sick spouse and the responsibility of a household and kids - and it is hard on everyone - the sick spouse, the spouse who is bearing the burden on their own., the kids.

My suggestion is to get the help that you can, get insurance and try out different things that can help your spouse. I went from western medicine to eastern and a complete change in diet, supplements, exercise etc. I am trying my best to live a normal life but I need a lot of rest to be able to function now. This is an improvement from being bedridden.

You have no control over sickness or misfortune. You however have control of the peace, happiness and climate of your home - and that is determined by your reaction to things around you. You should do your best to preserve the good vibes in your home.

Anonymous wrote:

Anonymous wrote:Be grateful that you aren’t the sick one.

You sound like someone who has neither had a chronic illness nor been the primary caregiver for someone with a chronic illness.

I have a chronic illness and have been a primary caregiver. Seriously, you should be grateful. Most people take their health for granted, till its too late.

I have an autoimmune issue, as does my mom. She actually had more than I do, causing her to be chronically sick and just tired all the time. It’s tiring being tired all the time. It SUCKS. A few things. Watching my dad take care of my mom for years while she was in the thick of it all, going to doctors, her laying in bed all day, my sisters and I got to see how hard marriage is. We all picked up where we could to help out more. Depending on how old tour kids are, they can help with things too.

Have you heard of the “spoon theory”? It really helped me understand my mom and then help me explain things to my husband once I was diagnosed. Those who are chronically sick have a certain amount of spoons to use each day, you can’t wash them, you only get 5 spoons a day and you have to figure out how to use them and once they are gone, they are gone. Taking a shower? One spoon. Driving to work? One spoon. Going to work? One spoon. So on and so forth. Others get an unlimited amount of spoons and can wash their spoons as many times as they want whenever they want.

I hope this helps. Maybe on the weekends, he can sleep in until 8 or 9, and have him help out with things. Maybe going to the store or taking the kids to the park so you can get some cleaning done. Can you have groceries delivered so you aren’t adding on to your list of things to do?

I also suggest taking time for your self. Plan a day to have a “you” day, get your hair done, mani and pedi, lunch woth a friend.

Divorce. The resentment will kill you.

- someone with a debilitating chronic illness