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I have been watching an ongoing discussion on another site and thought that I would ask the same questions here.

 

Do you go on caring for your partner/parent/ child out of love or a sense of duty? Do you plan to continue "forever"? How long have you been in the caregiver role?

 

Sue.

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Dear Sue:

Very good topic.

My hubby is my Caregiver and has been since I came home from Rehab ..... I am a Brain Stem Stroke Survivor and everyone knows my story of my journey. He has been my Caregiver since May 2004.

 

I read your question to him and this was his response.

 

"I do it both. Out of love and because you can't do it for yourself. Because out of the Marriage vows I took, "In Sickness and In Health."

 

I know it has not been easy for him. But, it could have been a lot worse. I was one hundred per cent paralyzed .... now, at least, I can do more. With prayer and lots of positive energy, I hope to continue on the road of recovery.

 

Thanks for sharing your post with us. I am shocked he actually answered me and I asked if I could post his answer/response and he said go ahead. I shared with him that it might help others.

 

WOW, this is a new part of recovery on my journey.

 

God Bless,

Love n Hugs, Jan

 

Believe In Miracles and SOAR

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I agree that it is both. I would not care for my Mom if I did not love her- but sometimes and some things feel like duty. At the time of the stroke, because of her many health issues, my mother had only a 50% chance of surviving the year. I kind of felt like a year- I can do a year. It has been a little over two years now. I honestly don't know how long I can continue. It is very stressful and while it has brought me closer with one sister, it has pretty much destroyed my relationship with another. Balancing work and care giving and life and finances is very hard, and I don't think "forever" is an option for a lot of reasons. If I had to decide now to do it forever or even commit to five more years I don't know if I would or could.

 

I suspect her health or financial reality will mean a change in the next year or two so I am currently just trying to gut it out and make a difference for as long as I can. I try to take week by week. More than that is overwhelming.

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Do you go on caring for your partner/parent/ child out of love or a sense of duty? Do you plan to continue "forever"? How long have you been in the caregiver role?

Sue,

 

Without hesitation, I go on caring for my grandchild out of love and yes, as long as I am able to care for Tootie, I will do it forever.

 

Although Tootie is 5 1/2 years post stroke. I have only been her "caregiver" for 3 or 4 years; I think. I honestly don't remember. If I don't write it down, it's gone! I just know I promised her I would be there for her and I intend to keep that promise <3

 

 

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I think too often caregivers give up on their loved ones. I am not pointing a finger at anyone!! Im just stating my opinion. I was discussing empathy with someone earlier and I truly believe some people are not wired to see other point of views or they cant put themselves in someone else's shoes. All caregivers need to remember that although it is EXTREMELY tough for you, just remember, it's 10x's harder for the survivor and no one misses the old them more than they do!!!

 

 

 

 

If your caregiving feels more like a duty then you're not doing it right. I am a stroke survivor and I work as a caregiver for a young man with MD. He lives with his girlfriend and most of the personal things like showering are left to me, because I am the one who gets paid and that way when she gets home to make dinner, she isnt doing it cuz she has to. This is her life. If you are feeling burnt out, get help. I urge you.

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Hmm. . .I can see both sides of this--caregiving out of love or duty. I agree that it can be both. Although I am a stroke survivor, I'm addressing this as more of a caregiver as my mom and I were caregivers for my dad who'd suffered multiple heart attacks and was a diabetic in denial.

 

My mom was a caregiver for almost 10 years. She did it out of duty, most of the time, because my dad was a mean (and ill) SOB who demanded it of her. It isn't so cut and dry that she gave up on my dad. Unfortunately, he gave up on himself. . .and that made her caregiving situation that much tougher. The stress was so thick you could cut it with a chainsaw. I never saw someone age so quickly as my mom in her caregiver role. My mom (as I'm sure many of you feel) felt very lonely and isolated. Although she sought help from people in her church, it didn't alleviate all the emotions that go along with caregiving--guilt, anger, anxiety, depression, etc.

 

Quite frankly, I think it is tougher to be the caregiver than the survivor, and I know because I've worn both sets of shoes. The demands, both physically and mentally, are always challenging and often burdensome. Sometimes, you don't know if you're doing the right thing for your loved one. Sometimes, you feel like no matter what you do that you can't win. Other times, it's exhilirating to see any smidge of progress. But most of the time, being a caregiver is just terribly exhausting.

 

I applaud all caregivers for their patience and dedication. It would be so easy to cut and run, but you stick it out and it doesn't matter if it's out of love, duty or both. All of you are heroes in my book.

 

Karen

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I am the caregiver to my husband Dave for 2.5 years...

 

I am here for him out of love.... Dave didn't ask for stroke and heart issues. Yes, it definately is extremely hard at times and overwhelming , but I simply tell myself as hard as it is for me, I am not in his body and to get off my pity pot.

 

hugs to all, Anne

 

 

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Shadow, I dont think its fair for you to say you think one job is tougher than the other. That is an opinion you should keep to yourself and just because it was easy for you and tough for you as a caregiver in no way makes you an expert. You have said "I have no residuals except some emotional scars from the whole event." So you dont know how tough it can get for real survivors. I am sorry but your statements really bothered me. I am a survivor and I work as a caregiver so I KNOW just as much as you do and I disagree with your post 1,000%!

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It is NEVER about who it is harder for as we all have our own levels of coping and caregiving for some people is a chore, added to the many other chores they do while for others it is a joy and a privilege and what they do fulfills their life ( I am thinking here of mothers and grandmothers of small children rather than those caring for a spouse or a parent).

 

This thread isn't meant to be about "who has it worse, the caregiver or the survivor" it is about our motivation and our attitudes and our intentions. Why did we take on being the "caregiver" especially if it meant giving up a career, adding caring to working full-time or maybe even changing all our lives around to do so?

 

As for paid carers, like those we have who come for an hour to give Ray the shower and exercises or those who provide me with two hours of respite, well they get paid for their labors. It is good to welcome them in when their friendliness is a bonus. Some we have here are like friends, some simply do the job and go. When they go after the hour or so the caregiver stays on.

 

As a friend of mine who cares for his bed-ridden mother says : "If I have two hours help a day I have twenty-two hours when I have to cope alone."

 

Sue.

 

 

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Like you said, who has it worse is not the question at hand. I can see how caregiving can feel more like a duty at times. Although you love the individual sometimes you just are not in the mood. ie. I have a friend of mine that is dating a young man with a disability. She loves him, but sometimes it feels like a job when she has to wake up at 3am to reposition him. Bottom line: its not easy for anyone; nor is it tougher for either.

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This is an easy question to answer. The reason I continue to want to care for my husband is NOT out of duty. The love I feel for Bill has not changed since his strokes, anymore than it would have changed had he been diagnosed with cancer. When I repeated my marriage vows they contained the words, "in sickness and in health". Interesting that those vows don't say "In health and in sickness....depending upon the afliction", isn't it?

 

The question that seems to be recurring has always been frustrating to me. Who has it "worse"? Of course no one wants to have a stroke. Of course the results are devastating. Of course we can all feel sorry for ourselves that our circumstances are unpleasant. Each personality is different and the process of acceptance is different for each one of us. Attempting to categorize who has it worse is a useless effort. Who cares? I'm not trying to be flippant or to minimize anyone's circumstance. It is much more important, in my opinion, to focus on the positive aspects of our lives than it is to sit and analyze why I am more to be pitied than another.

 

Don't get me wrong, please...I don't mean to be harsh or uncaring. Nothing could be further from the truth. The fact is that it is there is so much support and good to be accomplished on this site that I don't ever want any of us to lose signt of the importance of love in all we do. If we get to the point where we feel our caregiving is only done out of duty, we really do need to get some help from a pastor, doctor or psychiatrist/psychologist.

 

Housecleaning is something I do out of duty...not much love involved there, aside from the fact I do love my house and want it to be clean!!

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Ann, I agree with what you posted today, It's the love that got you together, the parents, and the child you care for out of the same love, I say amen!

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I agree that it is not about who has it worse, and that it is not a helpful discussion.

 

I am a little surprised at some of the responses. I don't think too many people would be a caregiver of someone who is fairly limited due to stroke solely out of duty - or at least I hope not. It seems to me that this would be a pretty dark life for both parties. However, I am surprised at the people that say that it is solely out of love- no sense of duty.

 

Maybe those people are just better folks than me. Or maybe the real question is how we define "love" and "duty".

 

This is how I see the difference:

 

If there were someone who could care take for my Mom and do as good a job as me, and make her as comfortable and we could afford it -- I would care take less. I would spend time with her as her daughter and not as her caretaker. Someone else could give her her shower, change her if there is an "accident", help her on and off the toilet when there is not., shop for her groceries, clean out the fridge.... The things that I would not choose to do if there were someone else, I consider to be the things I do out of "duty".

 

Now, there are other things, sitting with her and watching a movie, giving her a massage, having her sit next to me while I am cooking teaching me her recipes, sitting outside on her deck in the sunlight and talking to her while I prune her plants... those things I would do even if there were a wonderful caretaker available. Those things I do out of love, and I would be angry if someone tried to take those things away. To me those are never duties.

 

Because I love her I want to keep her home as long as possible- and with as much movement as possible. Doing that, at least for me, involves doing some things that I do out of love and some that I do solely out of duty. And as I said before I don't know if I can do it forever.

 

I do get the help I can-- and I am lucky that I have help and am only a part-time caregiver. But because of financial reasons, and in order to keep my Mom as happy as possible, my life currently consists of work and caretaking- with very little else. I am not saying that I have it harder than my Mom or that I should be pitied more-- just that it can be overwhelming. It is not a lack of empathy for her or a lack of love but a lack of time and energy.

 

One of the posts said that if you are caretaking out of duty you are not doing it right, and I could not disagree more. I am making sure my mother is at home, and safe and as content as she can be-- that, in my opinion, is doing it right whatever my motive.

 

 

 

 

 

I would say that some of those things i do out of duty. mening by that if there were someone else who could do them, I would not. those th

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Because my husband is now fairly independent, I am no longer considered a "real caregiver". Regardless of whatever title I should have instead, I "caregive" because I love my husband and I strongly believe he would have made the same sacrifices for me if the roles were reversed. When he had his stroke, the fight or flight instinct hit hard (leaning strongly toward flight). That was just the knee-jerk reaction. I was scared. That reaction didn't last long. I knew I loved my husband and could not leave him when he needed me most. Four years later the sacrifices continue, but that's what marriage is all about .

 

Kristen

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I am a little surprised at some of the responses. I don't think too many people would be a caregiver of someone who is fairly limited due to stroke solely out of duty - or at least I hope not. It seems to me that this would be a pretty dark life for both parties. However, I am surprised at the people that say that it is solely out of love- no sense of duty.

mekelly, my mother-in-law fell and broke her hip last year.

 

So, my husband & I had to assist in her care; now that was a duty :o:lol:

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Hello All,

 

Maybe the difference between out of love and out of duty is our relationship with our survivor. I promised my dad when he was in his last days I would care for Mom when he was gone. As their only daughter and the only one of three siblings who maintained a close relationship with my folks I felt it my duty (out of my love and respect for my folks) to care for them as long as I was able.

 

I really don't feel my caregiving of my husband is done as a result of feeling duty bound to do so. I have often said my caregiving role may change should his condition deteriorate to a point where I can no longer care for him at home. In that case my day to day hands on responsibilities change. My caregiving takes on a different dimension, it doesn't end. I think it it is my duty, if I say I care for him out of my love for him, to ensure I provide the best care I can.

 

This is a great discussion!

 

Ann

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I really don't know why my husband decided to stay with me right after my stroke when I needed him most. though I never felt I was deserving of love he showed me during my helpless period. when I asked him why he chose to stay instead of taking flight. his simple reason was because I married you, and you and our son is my responsibility till the day I die. I get choked up even now thinking about his selfless love. he shows his enormus love through his actions. today after 5+ years I am now I am caregiver of my family in wife and mom's sense.

 

Asha

 

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Sue,

 

I am a survivor, as you know, as such I try to read most of the topics and comments there too!...I see most of those who answered didn't answer part of your questions in this topic.

 

1. Do you plan to continue "Forever"?

 

2. How long have you been in the caregiver role?

 

I know you have been care giver for a number of years, probably the most years of any care giver currently here.

 

I learned so much from you and Jean about caring for family especially your spouse. That's why I have so much heart for care givers on this site. I just don't know where I would have been without my wife's concern for my recovery and God knows I feel the same way about her should I become her caregiver whenever.

 

I love to see concerned caregivers whether Love or duty, just being there part time or full time will mean so much to any survivor in my mind. :notworking: :Good-Post: :I-Agree: :You-Rock: Sue! Tell Ray hello from Fred!

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when I asked him why he chose to stay instead of taking flight. his simple reason was because I married you, and you and our son is my responsibility till the day I die. I get choked up even now thinking about his selfless love. he shows his enormus love through his actions.

Asha, I am now choked up as well :Sob:

 

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March 19th would have been Steed's 3rd anniversary, unfortunatly he did not make it that long. In answer to the question yes I would have done it forever. Even at his worst I would still look at him and just melt with love. Going through Steed's death these last few months, I can honestly say that I would never change being a caregiver for him, not out of duty but so much out of love. He did not ask for the stroke, and no matter how difficult it was at times I was all he had and him I. For those who feel as if it is a duty, all I can recommend is to step back and really look at the survivor. Image if they were no longer here would you think it was a duty then?

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I am a survivor now, in the past I had been a caregiver.. To a child and my husband.. who both passed away. I never thought of myself as a "caregiver" I'm not sure then I had even heard the term.

 

There are so many great answers here.. I agree you take care of your loved one.. the best way you can. Some things are "duties" and are not favorite things to do. You do these duties out of Love and respect for your loved one. If the loved one goes to the hospital or even has to go to a nursing facility... you will still look after them.. making sure they have the best care. Care Giving does not end ... because someone is not home. You know you are doing the best and making sure they are looked after properly.

 

doing laundry ... house hold chores.. are duties, but we do them for Love and Respect.. for our selves and our loved one.

 

 

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.

Doesn't love naturally breed 'duty'? According to my dictionary duty is: "An action required by one's occupation or position, a moral or legal obligation." As a daughter to my dad I shared his care with my brother for five years both out of a profound sense of love AND a strong set of values that says that family helps one another in their time of need. i.e. you care for children when they are young; they care for you when you are old. Call it duty if you want but if you love someone there really is no choice, you do what needs to be done and accept your luck of the draw. Maybe the concept of 'duty' is differs with different nationalities? All I know is this is the example that was set for me growing up by my parents, aunts and uncles and without exception, all my cousins stepped up to the plate when it was their turn to care for a sick parent or spouse.

 

With my husband, I've been his caregiver for over 9 years now and him being wheelchair bound and with severe language disorders, it's a 24/7 job and I've never had even one hour of outside help. (Except for the week I had my knee replaced and we had a friend care for both of us.) We've known each other since 1970 and have been through tons of life events together---both good and bad. From my way of thinking how is a stroke any different? We've gone through life meeting challenges, defeats and triumphs together. Why stop now? After all, life and loving someone comes with no guarantee that it will always be easy. I don't think of caregiving as a 'burden' or 'sacrifice' because it's just the luck of the draw that my husband is in the wheelchair and not me. This is our lives now and we do our best to make the best of it.

 

As for Sue's original question on how long I will continue being Don's hands-on caregiver, the answer is for as long as I'm able. But each of us has a different breaking point where we can't mentally and/or physically do the job anymore. The key is to know where that breaking point is without throwing in the towel too early or too late. Of course, just because a long-term caregiver turns over the job to a managed care facility doesn't mean that caregiver is then care-free. It doesn't work like that; it just becomes a different kind of duty born out of love that keeps you overseeing their institutional care. My brother's wife just died after being in a lock down nursing home for violent Alzheimer's patients. He spent three years going there every day to make sure she ate. I didn't consider his caregiver role any easier than mine just because his spouse was institutionalized and mine wasn't/isn't. In fact, his emotional turmoil was 10 times worse than any I've experienced in the past 6-7 years.

 

The bottom line for me is that I can't separate duty from love. If I didn't love someone I wouldn't feel duty bound to care for them. And I don't consider 'duty' a dirty word in caregiver circles. I do, however, feel sorry for those caregivers who have forgotten the love that once past between themselves and their care recipients. That's sad. There is a dialogue in a movie where someone asks a guy why he still goes daily to a nursing home when his wife no longer remembers him. The guy answers, "Because I still remember her." We should all be so lucky as to have someone who remembers what we once were when we can no longer be that person.

 

Jean

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Sue, this is a great topic. Thanks for raising it. And a very heartfelt and honest discussion.

 

I'll answer the easy questions first. I've been a caregiver for 6 months. How long will I do it? As long as necessary. I should clarify that my mother and brother are in a nursing facility. My mother's in a coma, my brother has difficulty walking.

 

Now to the meaty question: "Do you go on caring for your partner/parent/ child out of love or a sense of duty?" For me, there need to be a little clarification on the term "duty." I think "love" is pretty clear. Maybe instead of "duty," a better word for me is "obligation." This will be clearer when I talk about my mom and brother.

 

My brother and I have had a difficult relationship. He estranged himself from me and my family for decades. He has said hurtful things to my mom and I over the years. But I do have love for him as a person and my brother. I would say I care for him more out of a sense of obligation. I am the only one left in our immediate family. At one point, he asked if I'd move into our mother's condo and take care of him. Well, I'm looking for work and would not be able to care of him 24/7. And we'd probably drive each other crazy and be miserable. And honestly I don't feel he's earned it. He has never been there for me. There is some love in there, compassion, but there's a lot of feelings of obligation in my brother's case. It's complicated.

 

Now my mother is a different story. I care for because I love her. Plain and simple. We used to go to the movies and dinner together. She used to say: "Even if the movie is bad, I know we'll always have a nice meal afterwards." My friends love her. She makes me laugh. She has been there for me every step of the way and supported me in becoming happy. And she brought me into this world and cared for me when I couldn't care for myself as a baby. And now she's helpless in a coma. And I hope she will come out of it. But I could also say in a good way, I care for her out of a sense duty. I feel it is my son's duty to care for my mom. But I wouldn't say I do it out of a sense of obligation. I hope you can see what I mean.

 

:cloud9: :chat:

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Honestly, I am at my mother's house simply because between this horrible economy and my own bad planning, I have nowhere to live, no money in the bank, and have been able to find only part-time work (though optimistic this will change soon) and can't afford to pay my own rent, et cetera. I hate caregiving and feel very trapped, resentful, and angry about this situation. I am young, educated, and was on a good career track before my mother's aneurysm. While I know that she did not ask for her situation and has suffered quite a bit, I nonetheless find nothing good or positive about this role I never wanted. Fortunately, Mother is pretty strong now, and 13 months past a category 4 SAH, she is able to do everything but walk unassisted and drive, and I have been assured she'll be able to do both by year's end. She doesn't really need me for anything now, and since she came home from rehab at the end of January, she's been able to afford some day-time homecare, who are wonderful women. So I don't have to do everything, and never really have.

 

Still, so many things set me off but mostly it's her asking the same, endless questions (she REFUSES, no manner how often I ask -- plead! -- to keep a daily journal and record what happens). I feel like my life is over and will never go back to normal, and I wonder when I'll be able to move out. I am often snappish and impatient with her and when I am, she gets really upset, and I feel bad. But I am verbal and emotional and never learned how to keep quiet. This, and that she was a lousy parent to me as a child, well, it's a hideous combination.

 

I care about my mother but no longer feel I should be sacrificing my life/health/freedom for her. This isn't love, but it's not duty. It's just circumstance and bad luck. I will leave as soon as I can afford to do so, and she'll have to figure things out on her own.

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My son is 11 months post stroke and its both love and duty for me as his caregiver. He is 39 and didn't ask for this. He wa a cyclist, kickboxer and so fit. He was a vibrant indivdual and I know will be again. I definetly have meltdowns but usually take a walk or cry. It does get better. But I feel the alternative would have been that he didnt make it so I would crawl over a bed of nails for him. We have our differences and sometimes I feel very guilty if I've responded harsely or he was mean to me and vice versa. After all I'm ok what's wrong with me for arguing. My husband who retired in Jan 0f 2008 and we had such plans that went to heck...feels I baby him too much and that I am at his command all the times. But I am the one who is with him all the time. His wife does help but he is here at our home ( we do live walking distance apart though). I have two sons and I pray that nothing happens to me because I would do whatever it took for both of them.

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