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Thread: Am I being selfish?

  1. #1
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    Am I being selfish?

    As a caregiver I feel at times resentment towards my husband. Not most of the time but sometimes. I know he didn't create our situation but he was NEVER there for me when I needed him most. Most of the 41 years we have been married he spent on the golf course.This was to be our time to spend time together. But here we are. He has SCI (incomplete). He's somewhat independent but requires a lot of assistance. Now recently a "minor stroke"which has weakened his upper body even more.I'm the cook,the landscaper,garbage man,barber,nurse,housekeeper,appointment maker,chauffeur,masseuse and organizer.And to make matters worse he's critical and always has been.It's a little difficult to accept critisism when you spend your whole day either dealing with his handicap and all the other responsibilities that he can't perform anymore.We have a cruise booked for Nov. It's always been a dream of mine to go on a cruise but will it be more work than it's worth? We waited too long. I feel like a real jerk venting like this when I know most of the caregivers out there are dealing with completes. But sometimes saying "it could be worse" just doesn't help. I think justhaving the opportunity to write these feelings is cathartic. Thanks for listening.... Fran

  2. #2
    Senior Member nevada's Avatar
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    As a new SCI I have been doing alot of thinking and I feel like I have cheated my wife of 14 years out of alot of things and now I feel like I am cheating her out of the rest of her life. She is now just like you the main component of our life as well as trying to be the bread winner and mother to our three year old son. I only wish that I had not been so selfish when it came to our lives together I know that when the cure is found and I hope it is soon that the first thing I plan to do is make up for the lost time that she has had to spend being my care giver as well as all the other duties that she has had to assume sense the accident

  3. #3
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    Hi Franroty

    No, I don't think you are being selfish. I am in the same boat as you and I know exactly what you mean. I just got my SCI husband home 8/30 and trying to get him out of bed and stay up all day is a real task. He wants to sleep all the time and wants me to wait on him, hand and foot. My advise to you, is put your foot down and say "I need to rest for an hour and you leave me alone and mean it!". Also, my back is already killing me and we can't afford help. He was at the VA in Long Beach for rehab and will be going back 3 times a week. Today I put on his condom cath and after I got him dressed, the damn thing came off and wet everything and I had to start all over again. What fun with Sh__ and Pis_ everywhere. I have got to get him in to a routine that is suitable to me. His nights and days or mixed up. Sleep all day and awake at night with too many drugs. Hang in there. I'm cheering for you. Email me at bthesing@juno.com. I live in Costa Mesa, CA.

  4. #4
    Senior Member martha's Avatar
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    Fran & CountryGirl,
    The moderators of this forum are wonderful ladies. I've especially learned a tremendous amount and been given an incredible amount of support by Jackie (Marmalady). However, there is another site for Caregivers that you might want to check out. I only mention it because it seems to be majority caregivers and there seems to be more of a tendency for several reasons to openly express feelings and find that many others share those same feelings, exasperations, resentments, etc. . I think between this site and the other, you might find the support that you need. It is http://www.egroups.com/group/scic and some people from here do post over there as well. Good luck to both of you, I've certainly shared all of your feelings and to a great extent still do.

    martha

  5. #5
    Senior Member TD's Avatar
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    What is your husband's level of injury?

    I am a 50 year old T4 incomplete whose wife is, like you, my caregiver. When I first came home I realized that she was going to have to do everything and that irked me. I told her "you can't do it all! Find someone to help." She felt she was a superwoman and pressed on. It was not until she recognized that she suffers from post traumatic stress syndrome that we both woke up to the fact that I needed to care for myself as much as I can. Your list of "hats" shows that you are trying to do too much.

    My advice to you is to start weaning your care from your husband. The best way I can think of to start is make him ask for your help. Do not jump to his aid immediately and let him try and figure out if he can do it himself. This will possibly start a few arguments but you must be strong. The only way he will know what he can do for himself is to let him try. The next time he criticises you tell him "if you don't like the way I do it then do it yourself." Both of you will be surprised to find out what he can do. He should be making his own appointments consulting with you on your availability. Your lives have been shattered by his injury and stroke and it is up to both of you to pick up the pieces and go on. You should not have to carry the burden alone.

    Your post shows that you still love and care for him. You are just frustrated with having to do everything. There is grieving that must be done by both of you. Once you get through the grieving your life together should become clear. I suggest you make an appointment with a grief counselor or psychologist to help you get through these difficult times.

    "And so it begins."

  6. #6
    No, Fran, you're not being selfish - you're being normal! I think it's time for you and your husband to sit down and have a heart to heart, about what he's capable of doing and not doing. And also time for some 'tough love'; if he's critical of the way you do something - don't do it for a day!

    I found and am still finding that there's a balance of 'power', if you will, when we become caregivers; not only are we parents or spouses or brothers/sisters, but often are seen as the one holding the strings of life for our family members. As caregivers, we need to learn to let go of some of those strings - even if it means a missed appointment, or not ordering meds, because our family member has forgotten to manage that part of their life. Bottom line - it's THEIR life!

    I'd suggest that perhaps you get some couples counseling, as it seems as tho there were 'issues' (gawd, I hate that word!) before his SCI; also that you try to find some help and respite for yourself wherever and however you can.

    Countrygirl- If you're having back problems already, you need some help. Go to your doc, and see if his writing a letter of medical necessity for the VA will maybe open the door a little for some outside help. Did you get the lift?

    And Martha, you always make me blush! I'm in there with all of you (altho my caregiving is my son, not my hubbie), and have been through and am still going through many of the same feelings you all are. And times have changed here on the forums, and I hope that the Caregivers Forum here at CareCure provides an outlet for us as caregivers to share our feelings and thoughts and frustrations, and to help each other figure out solutions to living this new life that's been thrust on us all.

    I've copied and posted a wonderful article that one of our members,BirdeR, wrote about caregivers; it's permanently in the 'articles' section of CareCure, but i thought it appropriate to bring it up to the front again. Lots and lots of food for thought! Jackie


    Caring from a Caregiver
    by BirdeR
    Caregiving will teach you many lessons. One of the most important lessons you learn, is to live your own life more fully. Caregivers face special problems and issues. Caring for another individual is an intimate and personal experience. People who find themselves in the role of caregiver must understand one important reality: You simply can't do it alone! You cannot possibly do this job 24 hours a day, 7 days a week! You cannot be a good caregiver if you can't take care of yourself. You need to know that you can be happy in your role as a caregiver, but not if you always let the illness or disability of others overshadow your own needs.

    What does it mean to be a happy person when you are a family caregiver? How can you gain a feeling of confidence in your abilities and have a sense of pride in your achievements? How do you stand up for yourself, take care of yourself and find a balance between your own needs and those of your loved ones?

    Our inner strength is the gift we have been given. It is the "pay back" for the pain, and although many of us would gladly trade it in for an easier life and our loved one's health and well being, we nevertheless ought to recognize its extraordinary value.

    The problem is I don't think most caregivers do recognize it. I think most caregivers are so caught up in the act of caregiving that they don't step back and look at the extraordinary things they do. I think a great many caregivers don't even identify themselves as caregivers.

    Sometimes we expect too much of ourselves, and we get into a state of constant worry or anxiety because we think we are not doing enough. Know that there is no RIGHT or WRONG way to caregive. It is okay if you do not have all the answers, no one does. I wish caregivers themselves would recognize their value, acknowledge their individual achievements. For the most part, caregivers use their inner strength to help their loved ones and to get through difficult caregiving days. Caregivers need to begin to use it to take better care of themselves, to feel proud, to experience the beauty of self love.

    What is caregiving? How do you define a family caregiver? You define family caregivers by their emotions and their spirit, by the sadness in their eyes, but also by the determination in their hearts. Caregivers are very special people!



    --------------------------------------------------------------------------------


    10 TIPS FOR FAMILY CAREGIVING

    1. Choose to take charge of your life. Don't let your loved one's illness or disability always take center stage.
    We fall into caregiving often because of an unexpected event, but somewhere along the line you need to step back and consciously say, "I choose to take on this caregiving role." It goes a long way toward eliminating the feeling of being a victim.

    2. Remember to be good to yourself. Love, honor and value yourself. You're doing a very hard job and you deserve some quality time, just for you. Self care isn't a luxury. It's a necessity. It is your right as a human being. Step back and recognize just how extraordinary you are! Take time for yourself. All too often, caregivers place their own needs last. Being a caregiver should not mean giving up all activities and relationships with other people. Studies show that sacrificing oneself in the care of another and denying oneself pleasurable activities can lead to emotional exhaustion, depression and physical illness. Taking breaks from caregiving is essential for both full-time and part-time caregivers. You have a right--and even a responsibility--to take time away from caregiving.

    3. Seek, accept, and at times demand help. Don't ever be ashamed to ask for help. You need to realize that asking for help is important. When people offer assistance, accept it and suggest specific things that they can do. Accept what people can give. Resistance to accepting help is a common cause of stress and depression among caregivers. In our culture, with its emphasis on independence and self-reliance, it's not easy to request help. Some caregivers see asking for help as a sign of helplessness, inadequacy or failure. Actually, asking for needed help is just the opposite. Reaching out for assistance before you are beyond your limits is an important characteristic of a strong individual. It also helps ensure quality care for your family member. People can best help if they know exactly what your needs are and how they can participate. Be specific and positive. Friends may feel uncomfortable helping with the bathing and dressing needs. (The loved one might feel awkward as well.) But they could help with running errands, shopping for groceries, preparing a meal or providing companionship. When family or friends ask how they can help, make a specific suggestion. Say, for example, "Could you visit with ___ for an hour so I can go to the store?" or, "When you go to the store could you pick up a few things I need?" If family members or friends live too far away to provide physical support, encourage them to call the loved one regularly. That takes some of the pressure off the caregiver to be the primary social outlet. Tasks unrelated to caregiving may be easier for some people. If you can be flexible, ask what would be the best time and task for them. Accomodating others, when you can, helps prevent their feeling stress and increases the chances that they will help out again. Your pastor or a counselor can provide valuable help, emotional and prayerful support from these people is a good source of strength. Delegate as much as you can. We each have strengths. If you've been designated as the primary caregiver, that doesn't sentence you to doing everything by yourself. Recognize that others may want to help. Find a way to spread the load to other family members, friends, or professionals. Compensate for your weaknesses so you can emphasize your strengths. Quality support for someone needing care can come from many directions. That's something every caregiver needs to know. Don't hesitate to ask. Nobody wants to see you become run down due to the caregiving role. If you need something, feel free to ask. Trying to do it all will only create another caregiving situation -your own. You won't be helping anyone if you wear out or get sick. One way or another, help is there. Be sure to ask.


    Caregiving, especially at its most intense levels, is definitely more than a one person job. Asking for help is a sign of your strength and an acknowledgment of your abilities and your limitations. It's also important to show appreciation for any help received. Let people know how much their support means to you.

    4. Seek support from other caregivers. There is great strength in knowing you are not alone. Many caregivers have found it helpful to share their experiences with other caregivers. Caregivers often mention that other family members who are not the primary caregiver simply do not understand the stress of daily care giving. Other caregivers understand how an off-hand comment given by the patient or other family members can be deeply painful, how draining care giving can be. It is important for caregivers to get respite and the support they need from a network of other caregivers who can empathize and share in experiences. Sharing, even on line with other caregivers helps caregivers cope with the stressful demands on them, enables caregivers to learn alternative care strategies, provides a sense of sharing the burden by expressing their feelings in an open non-judgmental environment with others who can relate to the experience, provides a new perspective, and can provide a vital support system. Community caregivers are also a source of emotional and caregiver support. It is critically important that caregivers seek out and get the support and respite they need.

    5. Stand up and be counted. Stand up for your rights as a caregiver and a citizen. Recognize that caregiving comes on top of being a parent, a child, a spouse. Honor your caregiving role and speak up for your well-deserved recognition and rights. Become your own advocate, both within your own immediate caregiving sphere and beyond.

    6. Trust your instincts. Most of the time they'll lead you in the right direction.

    7. Grieve for your losses, allow yourself to feel the way you feel, and then allow yourself to dream new dreams. Almost every caregiver experiences a wide range of emotions, some of which are conflicting, confusing and ambivalent. You may feel love, sadness, frustration, dislike, repugnance, guilt, grief, fear, resentment, helplessness or despair (and that's all in one day). You may feel angry about the increased dependency of your family member and the many demands on your time, energy and money. You may grieve for the loss of that person as he or she used to be. Feeling unappreciated is sometimes a problem for the caregiver, particularly if the ill or injured person expresses only dissatisfaction or is unable to show appreciation. These feeling are normal. These feelings are neither "good" nor "bad," nor do they reflect the degree of your caring. Feeling angry does not mean you love that person less. Being a caregiver is the fortitude to go on despite the pain. It is the wellspring of hope we always dip into. It is the power to make a difference. It is the clever way we solve a difficult problem. It is the knowledge that we have been tested by fire, and we have survived. Caregivers are allowed to dream! It's true! Don't deprive yourself of your dreams. Dare to dream...it's normal I assure you!

    8. Educate yourself about your loved one's condition. Information is empowering. Take the time to educate yourself about the medical condition of your loved one. If you understand the nature of the problem you may be better able to deal and assist with it. Read not only publications from a physicians point of view, but nursing journals, articles written by other caregivers, and books relating to the injury or illness.

    9. Watch out for signs of depression and or illness, and don't delay in getting professional help when you need it. If you cannot get a grip on yourself, you must seek out professional help. TRUST ME ON THIS! A doctor, social worker, or a therapist can help you to recognize what you can do to change your situation and help you to adjust to your role so that you can meet the challenges with a clear mind, with strength, confidence and an open heart. It is SO important to promptly get professional help when you need it, including assistance with your own physical and mental health. Experience teaches us that the ability to manage care giving over a sustaied period of time is much more emotionally, psychologically, as well as physically draining than sporadic, short term care giving. Providing care at the expense of your mental and physical health or relationships with other family members does not benefit anyone. Remember your own good health is the very best present you can give your loved one.

    10. There's a difference between caring and doing. Establish Your Limits. You have the right to set limits on what you will or can do. It's all right to say no. Doing so, however, can be difficult, especially if you must make painful choices. Consider, and be open to technologies and opportunities to promote your loved one's independence. Find out about programs, services, and new technologies which may help your loved one regain their independence, or improve the quality of their life. Encourage your loved one to do for themselves the things they are able to do. You are not helping or caring for them if you always do these things for them that they are able to do for themselves.

    _____________
    Tough times don't last - tough people do.

  7. #7
    Senior Member BJ's Avatar
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    Am I being selfish

    No, granted I came into this life with a slightly different perspective,
    I met my now husband 5 years after his injury (c5/6) so I learned going in what
    was what. However, we've been living together for 20 years and married for
    16 of those. I started out as super woman, we both worked full time and I
    did it all - wrote this checks, cleaned, scheduled vehicle maintenance, worked
    all the issues with the landlord. When we bought a house I ran around like
    a fool doing the moving, unpacking etc. Well finally one day I ran out of
    gas - had a week from **** at work, my uncle died in Mississippi, hubby's uncle
    had colon cancer surgury, hubby had his re-eval and they told us he had
    osteoporisis (sp) and I snapped scared his doctor when I started bawling and
    couldn't stop.

    After a couple of sessions with the rehab shrink we divided up the
    chores - he writes the check, schedules any repairs vehicle or home, deals with
    the guys who are doing the work, if a car needs work he schedules it, and sends
    me off with a list of what needs to be done and then tells me when to go pick it up. He also schedules his own appointments and if something is too much for me to handle in the yard or around the house he finds someone to help or hires someone to take care of it.

    We both realized I'm not mom and this is a partnership, yes there are things he physically can't do but there are alot of things he can take care of anyway.
    This has worked well for the last 10 years for us.

    Hopefully you can find the right answer for you before you have to pop your top like I did.

    The shrink also gave me a question to apply to anything - Will my worrying about this an losing sleep over it change anything? No - then just put it aside and somehow it will all work out. This is hard sometimes - I've been doing this with his layoff since Dec. wish someone would hire him soon - he's making me nutsaround this house so much.

  8. #8
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    For TD and all the rest of you who kindly responded

    My husband's injury is from C3-7. He had hernaited disc at 3-4 but had such a large amount of osteophytes all along the cervical spine impinging the cord he was fused from 3 to 7. The outcome was expected to be the same as before his surgery ( a slight limp) but he slowly deteriorated. His last MRI films show a lot of scar tissue and more osteophytes impinging the cord once again. They don't reccommend surgery and this will be progressive. He started with mild lower body spasticity and walked with a cane but 3 years post surgery ( to make a long story short) he gets around in the house with a walker (barely) and has an electric scooter for outings. He simply cannot walk any distance.

    I do feel guilty if I don't get things for him because I'm so much faster and I feel sorry for him. But I guess he should do more for himself. He always had a penchant for laziness (except for golf). And I guess not going on a cruise would be punishment for me. I have my sister and brother-in-law who are coming with us and are willing to help getting him dressed etc.I think I am guilty of the sin of pride and independence because they have offered many times to help. I don't ask enough. Now if he can hold his own until November we'll be cruising on Royal Carribean and with his scooter he'll see more of the ship than I will!! Thanks for lending an ear and the advice everyone. Fran

  9. #9
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    burn out

    My husband is a T-4. I get overwhelmed at times. The other day I had to climb a ladder to fix a light fixture and I couldnt get it right and I freaked out!!! I started crying (hysterically) about the fact my husband could not climb up there and get it done (duh!)He is very independent, yet it is a lot of work to keep things going around our place. I think I've learned to let the cleaning go, realizing it doesnt have to be perfect (or even close). Look for help wherever it is available to take some of the pressure off of yourself. Take time just for you. And check out a website called "Wellspouse".com. It's a good place to go for caregiving support.

  10. #10
    Senior Member martha's Avatar
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    As I read each of your posts, I can relate to everything said. I spent the weekend changing lights switches that were bad, replacing the kitchen light fixture, hanging gutter and other "husband" projects which of course left the traditional "wife" chores still to do. I still want to scream and shout and cry and wail. I don't want to be both the man and woman. I won't even say husband and wife because that has no definition in my situation. Something my personal doctor told me really hit home. He cared for his partner for several years while he was suffering from a terminal illness. But he said the difference was that he knew his partner was terminal and the caregiving would be for a finite period. Caregiving for someone who is acute or chronic is forever -- there is no finite time that you know it will be over. Don't get me wrong, I'm not wishing my husband to die at all. I'm just saying that we have to consider that this is it and somehow manage to live with it. And that is not always easy to do. Especially if your husband is as demanding as mine. I'm venting and I hesitate to do so because this is the time I assume those suffering with SCI will jump in as they've done on other posts of this nature in the past and tell me I'm selfish and have no idea what they go through. But this isn't about them. I know they have it horrible. I'm not demeaning that at all. But this is about US, the caregivers in the trenches so to speak.

    martha

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