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September 25, 2006 in Caregiver & Family Questions and Discussions
I 'm not debating the cargiver/spouse topic you pose. I'd be stupid .. But it struck me tha many relationship break-ups, particularly in the past, especially among the greatest generation, were governed by the same issues and struggles for the one spouse. I think my mom and dad stayed together unhappily for many years for 4 or 5 of the reasons you bring up and a there were no medical issues involved. And I was sad for them both.
I agree with you 100% I also think a stroke gets blamed for a marriages breaking up when, in fact, the couples more often than not had issues beforehand that weren't dealt with or acknowledged and the stroke becomes the 'straw that breaks the camels back' so to speak. When a person won't or can't admit that, and they allow their anger to building up against a stroke for 'ruining their life and marriage' then it's just that much harder to move on and heal.
It's hard for many caregivers to hear the 'caregivers can just leave' thing on this board because for many of us who stay out of deep love and committment, we CAN'T leave anymore than our survivors can undo their strokes. It hurts to have our caregiver role deminished that way.
My marriage failed, not my caregiver failed. We are still the best friends. We separated because she didn't love me anymore. She would still be will us if I needed her to help me. We still talk and said if anyone of us need help, call. It is hard for me to stay together to just be helpers and not lovers. We will ever be the best friends, we don't need enemies. I called her the other day to talk to her cause see needed help. We are happier better this way.
I just say to all people that help others, THANK YOU!!!!!!!!!!!!!!!!!!
Jenny read this and wanted to add a few comments:
I’d like to chime in on this if I may.
I personally don’t believe that people should marry if they don’t believe in the vows that they agreed to on their wedding day. This is why there are laws to protect individuals in broken marriages.
I believe that everyone on this planet has a responsibility to help each other at one time or another. Some will help more than others. Some but none of us will survive if it’s a one way street.
I wouldn’t want my spouse to be a care giver if they weren’t 100% behind me. I’d fear they’d build a resentment towards me and not serve either one of us.
I apologize for my thoughts being so scattered. As you all know there are various degrees of dealing with stroke. However, when it comes to the caregiver either you’re there or not.
I don't think either of us is disagreeing with anything anyone has said. It's an interesting subject.
Just kickin the can!
I have always felt that the caregiver does not get the credit they deserve, as the stroke survivor, had no choice, but the caregiver, who honors his/her wedding vows, till death do us part, has the choice, but those who stay, like you or my hubby of 23 years are to be blessed -
Frustration can show up in many forms, i. e. resentment of caregiver, but when its all said and done, the survivor would be lost, not just financially , without the caregiver, so let's toast :cocktail: the under-appreciated caregiver
I've always honestly felt we survivors possibly get the better deal. There has NEVER been any question of my husband running away but he gets some delightful jobs. Thank you doesn't begin to cover it. Carers do a fantastic job, 24/7 and face all things mentioned above.
As Veggie's 'caregiver' (although I prefer the term husband) I can honestly say that I've not thought of leaving for one second. I don't stay because of any vow I made or of any sense of commitment, She's the same woman I married 20 years ago, just unable to do a few things now. All the things I do I also did for our kids when they were small and will probably do for our grandkids (if we get any), all of these things are done for love, pure & simple. The 10.5 months I spent visiting her in hospital, the arguing with medical staff, keeping down a job and making sure the kids were ok was the worst time in my life but I'd do it over and over again just to have her home for one day. The last 10 months when my wife has been home have really been the happiest of my life, not sure she believes me though, despite having all the 'nice' jobs to do. Despite what people say the caregiver has it easiest, I can go out when I want to within reason, I can eat what I want to, and I don't have to depend on others, plus I don't have to go away on business trips anymore. Apart from a few things my life is pretty much the same as before.
I've often said said Stroke affects the whole family.. it may happen to the Survivor.. but the after affects go far.. to the family, even to the work place when you can't retutn to your position. (The job issue is not as great, as a replacement can be found and trained).
I think the marriages that fail, propably had flaws, and would not have survived a major crisis anyway. OR some survivors have become abusive and it is not safe to stay in that type of situation.
This isn't about one "up manship" this is about team work and pulling together. The "caregiver has hardships and hurts and feels for the survivor and the survivor is trying to recover... for themselves, but also for the love of them selves and the caregiver.. we all want back as much as we can get. And it does take teamwork, patience and acceptance. It is a frightening time for ALL.
I just want to jump and make a fast reply to Bill, I agree with your comment about marriage failure, not the friendship or in your case caregiving. It's just that you two didn't agree on how certain things should be done under the same roof. Living apart makes for a better life. Of course, your dog didn't have any complaints long as you didn't try to feed him cat food and make him sleep outside.
A lot of mothers and daughters can't live under the same roof with different ideas on house rules and situations.
To: Ross, welcome to the net, your wife is a happy survivor and contributor here. Maybe we will hear more from you as time permits. I want and wish my wife would register and be a member, she declines, but I'm glad I got her in my life, hopefully for ever.
And to Jenny, Tom's wife: I second your beliefs about marriages and the vows, God knows, I've had my share, but they all ended in true friendships and understandings of what was needed. Nothing about sickness, health, beauty or better or worse.
I too think the stroke gets undue blame for failed relationships in some cases. Especially when I hear the echos in my ear of my wife saying "I'm quitting my job to take care of you." Sure we went thru hell together, but we stayed together for the journey thats not over yet.
I just wanted to add to this subject, since most caregivers are spouses, but in my case it's my child. She was born 22 years ago, and not for one minute have I thought about leaving her, or placing her in a home somewhere. In fact those were our options. While at the hospital, the social workers asked us: "Will you be taking Rachel home or do you need help placing her in a nursing home" Immediately, my husband and I said: "she's coming home with us."
Rachel is the light in our life. She's our angel. :big_grin: I became a mother for better or worse. I know she would also do the same for us, if the situation were reversed. So unless my husband or I become ill or too old to take care of our daughter, we are in this for the long hall. Our prayer is that she can become more independent, since she is so young and has a lot of living to do. We hope that her health remains good, so she feels better.
The bond between a mother and daughter can be just as strong as in a marriage, just in a different way. By the way, I would do the same for my husband if God forbid he had a stroke or any other medical issue. :hug:
Life sure changes for both the caregivers and the stroke survivors, but neither party asked to be put in this situation. We must look for strenght and patience. I pray for that everyday.
I just want to say this becomes a more complicated issue when there is more than one person you are taking care of. I still have some guilt about putting Mum into a Dementia Lodge in 2002. But when Ray had the stroke in 2001 and I was hauling Mum around in her confused state back and forth to hospital and then rehab I knew I had no options left. I had to look after Ray and could no longer look after both of them in a way that was satisfactory.
The doctor asked me what I was trying to achieve and what would happen when I broke down? That is a question we need to ask ourselves, particularly when considering temporary respite. It shouldn't be our good health versus their comfort. Is it important to look after ourselves in order to better care for them? Yes, it is. So while we are here for the long haul there still needs to be some forward planning including the answer to the question: "What will happen to the one I am caring for if something happens to me?"
I am a caregiver for my mom and from the moment I got the prognosis I knew I would be caring for her for the rest of her life. It has been hard on my family, my husband has been so supportive and my kids like having grandma at home iwth us instead of the nursing home which terrifeid them. My mom has always been there for me and has made so many sacrifices in her life for me that I feel I am repaying a debt that I am happy I have the means to do.
I also believe that it takes a very strong person to be a caregiver(stronger than I ver thought) and that no one should be faulted if they cannot do it. Sometimes it is better for all involved to let someone else care for your spouse, parent, child etc. That doesn't make you a bad person.
Just my thoughts
This conversation has been very enlightening to me. It is what I've been thinking about my circumstance with Jane. I had ALWAYS believed...or she had LED ME TO BELIEVE...that we were strong and could work ANYTHING out. I had every intention of staying with her, no matter what...would've cared for her 24/7 if need be. But she ran...and for a while I thought I did something to push her...then it was easy to blame the stroke, but really it was her...her issues...her crap...her baggage. I believed in my unspoken vows to her. I always checked in with her...even a week before her stroke we talked about what we'd change in the other person if anything. She had nothing she'd change in me...I told her jokingly I'd want her to change the way she holds her foot on the accelerator of the car...made me nauseous driving with her. But I said in the big picture it was meaningless...I'd really change nothing. SHe had her opportunity then...5 days before the stroke to tell me she had problems and she didn't. She lied to me for three years. My relationship failed because she lied and didn't do her part... I was misled...
Am I wrong here folks...???
The bond between child and parent is much stronger than in marraige, when i had my stroke my wife was quite matter of fact she said very clearly she did not want me back. Do not believe all this rubbish that something has to be wrong before the stroke for the partner to leave, not in all cases. In the hospital a vicars wife said again for all to hear, she did not want him home, i can give you any number of cases.
My elder daughters did not even have to be asked but very clearly said we want to be with you and they still are. They look after me through the mood swings and are understanding beyond their years. The oldest one goes off to university, still staying at home, next year to be followed the next year by her sister.
I think i am truly blessed to have two lovely daughters, pity i did not choose my wife with such care.
i agee i feel that i am committed in a good sense of that to stay. i relate to what you said about leaving cause it entered my mind and out just as qiuck. just tonite i said to myself it i could turn it on me i would. i don't know if jeanette would be strong enough. i think everything happens for reason and for this reason i will persue what ever method possible to help my wife live a happy and fullfilling life togther.
Thanks for this discussion Jean. I have been accused by a survivor on this very forum of clearly resenting caring for my husband and father. It was such a stab to my heart. If we caregivers can't feel comfortable voicing our frustrations without fear of being judged, we will not be visiting or blogging on the site.
We all have bad days when the burdens get to be too much and need to vent to those we think will understand. Maybe we need a site that is for caregivers only and off limits to survivors so we can express our feelings without fear of being judged as unloving or resentful.
I'm not a caregiver yet, due to extreme distance, but I wish I could be. The change has been very depressing and I am still working through it since everything just happened about 3 weeks ago. I did wonder while I was with him how people could do this long term. It hurts so much to see the person you love going through such difficulties. I can't fathom leaving such a special man, especially after just finding him earlier this year. But, every situation is different. I'll just be glad when I can move to be with him. He's the other half of me.
I have been a caregiver for the past 17 months and I am preparing to end the relationship. I appreciate the views of all here, but I have to agree that our relationship was in bad shape before the stroke. As I go through Jean's list of questions, there isn't much that I struggle with. While we have known each other for nearly 20 years, we have lived together for the past four. Of that time, he has lived off of me and my children (six of them) the entire time. He did not work 12 months straight at any time he's lived there and didn't contribute to the household what time he was working. I hate what the stroke has done to him, but it has not changed many of the things wrong with out relationship - unless for the worse. He refuses to do anything that the doctors have told him to do to try to improve his condition. He dropped out of speech therapy and quit seeing his psychologist. He is quite content just sleeping or sitting in front of the television. I know that the sleep is caused by the stroke and I'm okay with it. But his complete lack of effort for anything else is not. I feel guilty for wanting him to leave, but it's not the first time in our relationship. Bad part is he has three grown sons whom he didn't do much in taking care of (left them with his parents) and now they don't want to take care of him. His parents are in their 70's and they don't want to take care of him. I have eight children total, six still at home (2 extended family members I'm adopting), I work full-time for a non-profit, own my home and try to keep it up as best I can. I feel very guilty about asking him to leave, but I also feel very burned out at him sitting there day after day making no effort to do anything. He is on anti-depressants and he is capable of simple household chores (laundry, dishes, sweeping). He just won't get out from in front of the TV - unless I walk in the door. He has cursed at my children, thrown things at them and blames me for everything! It's my fault he had the stroke, I'm trying to kill his parents by asking him to go live with them, and on and on. Oh well, guess I just needed a minute to vent. Caregivers have feelings too. Mine are just expended at this point and I have to look out for my family.
Stroke effects all aspects of a relationship and most in the negative way.
1. Communication (What I miss most)
2. Money (Pills, Drs, Rehab, Nurses, Lack of 2nd income)
3. Sex (Just not the same after stroke or non-exsistant from some posts Iv'e read)
4. Family (Closer sometimes and Others aspects pushed away)
5. Friends (You find out who your true friends are and most of us realize we didn't have as many true friends as we thought)
Now as the topic was started and I quote
I am a caregiver to my husband Dave. He is a stroke survivor since Jan 07. I believe in the vows we took and I do love him deeply.
The problem is his daughter, i understand that she loves her dad and worries. BUT, she is constantly twisting words, lieing and undermining me. Dave ALWAYS believes her, for the most part i just sweep it under the carpet. When she is feeling stressed and upset, I always get Dave to call her to calm her down. BUT this latest episode with her is just the straw that broke the camels back. She is blaming me for things that I have no knowledge of, things she said she told me (which she didn't) once more Dave is believing her, while they were on the phone together just last nite, they were talking about me, she was screaming (i could here her as she was talking) and Dave was saying well you know daughter, Anne is just a stupid B@#!$ she doesn't know anything, she does this and that, all derogatory etc etc.
Now how much of this are you supposed to sweep under the carpet and understand. I talk to DAve about it and all he says, is that he doesn't want to talk about it closes down and gets angry and once more tells me i'm a stupid B!@#$... my nerves are shot, i'm constantly shaking and right now I frankly don't know which way is up. I just spent 2 weeks trying to get him to the hospital because he had congestive heart failure, which he FINALLY listened and went and spent a week almost in hospital.
I am stressed out too, like i said i love Dave completely, and i don't know what to do anymore concerning this situation. There is only so much my emotional well being can handle.
sorry this does sound like a vent but i don't know what to do.
I'm going to insert the Caregiver's Bill of Rights for you to read. Does any of it apply to your situation? I see several that apply.
Caregiver's Bill of Rights
by Jo Horne
Author of Caregiving: Helping an Aging Loved One
I have the right:
To take care of myself. This is not an act of selfishness. It will enable me to take better care of my loved one.
To seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself.
To get angry, be depressed and express other difficult emotions occasionally.
To reject any attempt by my loved one (either conscious or unconscious) to manipulate me through guilt, anger or depression.
To receive consideration, affection, forgiveness and acceptance from my loved one for as long as I offer these qualities in return.
To take pride in what I am accomplishing and to applaud the courage it sometimes takes to meet the needs of my loved one.
To protect my individuality and my right to make a life for myself that will sustain me when my loved one no longer needs my full-time help.
To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.
Please seek some counseling for yourself. Based on Dave's attitude toward the medical community I think you will have an uphill battle right now convincing him to go with you, but I think for your own peace of mind it's time for you take the bull by the horns as it relates to your own peace of mind.
None of us knows all the nuances of how and where the brain is affected by stroke. I know emotions can be affectd and personality traits can be exaggerated. Your stepdaughter doesn't have the same "excuse" as Dave though. I think counseling may give you a strategy for handling her attitude. She sounds rather spoiled and in real denial about her dad's stroke.
Again, I wish I was there to give you a hug. We understand in ways she can't and won't understand where you are coming from because we are in the trenches with you.
Maybe I missed something in the original posts on this topic. I don't remember anyone advising caregivers to leave if they were being verbally abused or if they felt trapped in their situation (if that was case there would be no caregivers left!). I do remember advice being given regarding physical abuse. When I first started caring for my mom, she hit me tried to bite me and was very violent...but she is 80 years old and I could handle the situation even though it broke my heart to see her that way. However, someone caring for their husband who can easily overpower them and cause serious injury or worse, it would not be safe to remain in that situation no matter how much you love them. I don't believe that anyone advocated abandoning the loved one, rather in some cases it may be necessary to advance to another level of care. It is wise to make that decision before someone gets seriously harmed physically. I know everyones situation is different but if a caregiver feels their safety is in danger they need to get help immediately.