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Thread: "Caregivers 10-Step Program for Survival"

  1. #1

    "Caregivers 10-Step Program for Survival"

    I've started a new topic from the 'Kate's On-Line Journal', re tips for caregivers. To start us off, I've copied BirdeR's post on caregiving; the whole article can be reached by the link at the top of the caregivers forum.


    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'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.

    It seems as tho #10 may be a place to start, as the topic is 'up' for a lot of you right now!

    Although I'm a mom and not a spouse, and therefore have some different dynamics going, I think the basics are the same, and they boil down to 'tough love'. Being a mom, you always want to 'do' for your child; I can remember in rehab, we were visited pretty frequently by a rather strident fellow, who was at Matt's injury level. He was pretty indepedent, lived on his own, etc. Whenever he and I were alone, he would preach to me about not 'babying' Matt, that he had to learn for himself how to do things, and how things work. one day matt's drink was at the edge of the table, and I started pushing it toward him - an automatic response, as I'm sure all of you have done! - the fellow knocked my hand off the drink and said, 'let him do it himself!'.

    It's so hard. I've said before that one of the hardest things for me is watching him just put a shirt on. All of my instincts want to go and help him, but I've learned to hold back. And as a result, Matt's learning to do more for himself.

    Conversations with your spouses could start out with, 'I'm not your mother, I'm your wife - you're not my child, you're my husband'. period. Maybe start off by telling them you are not going to continue to do A,B,C - whatever they are, whatever punches your buttons. Let them get used to doing those things, then go on to D, E, and F, and so on.

    If they're resistant and do the 'poor me' routine, let them know that you wouldn't put up with the behavior from a child (would you let a child pee in the living room?), and you won't put up with it from them. Expect a lot of pouting and snitting (word?!). Ignore it, let it slide, or walk out of the room. Use positive reinforcement whenever they DO do something for themselves.

    Looking through their window, they've lost every ounce of self-esteem that they had; maybe it's one of our responsibilities as caregivers to return even a little bit of it to them.

    It's very early in the am, and I'm being a bit rambling here, but I thought this was important enough to start a new topic. Hope we can get some real discussion going here!

    Tough times don't last - tough people do.

  2. #2
    Senior Member KDK513's Avatar
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    Aug 2001
    Cincinnati, Ohio, USA
    Thanks Marmalady, I'd forgotten we already had a plan and it's a good one.

  3. #3
    Feel free to add on, or join in!

    Tough times don't last - tough people do.

  4. #4
    Senior Member KDK513's Avatar
    Join Date
    Aug 2001
    Cincinnati, Ohio, USA
    No good advice from this end. I just finished taking hubby his nutritious lunch in bed. Slap me cause I forgot his straw.

  5. #5
    Senior Member martha's Avatar
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    Jul 2001
    Texas hallelujah!
    Ok, I'll, as usual, be the bitch. When this was first posted way back when, I thought it was a lot of horse manure. And frankly to a large extent I still do. It's so easy to say "don't do this" or "do that". It's a lot harder to put it into action. I can say I'm going to take charge of my life (1), or stand up and be counted (5) whatever that means, but I can only take charge of my life or stand up and be counted or be good to myself insofar as it still keeps him taken care of. Therefore, by proxy, he is still in charge of my life, etc.

    To me, number 10 is the one that I need to work on. I need a 12-step program that just covers number 10.

  6. #6
    Wow..this is a loaded topic, in my opinion. First, Jackie's right: moms and spouses have some very real differences, especially emotionally. But I do believe there are a few similarities.

    Second, Martha's right: so, I'm standing up for myself. Great. I'm still doing the laundry, the dishes, the cooking, the fetching, totin' that barge, liftin' that get the idea!'s my two cents worth. Waiting on your "charge", be it spouse or child, is a habit. When Bri was first injured, she couldn't do so many things for herself; I HAD to do them for her. But as she healed, her ability to care for herself (in some areas) came back, but was ignored because we had gotten into a routine...a habit. We had to break the habit...and all you smokers know how miserable that can be! I made a list of everything I was doing for her, LITERALLY. Then I made two columns. We sat down together, and put items into her column...thus making them HER responsibilities. For example, "Look, I'm not getting up at 4:00 am to wake you up so you can cath. Set your alarm! You cath by yourself don't need me there. So...wake up by yourself!" It was just a habit, held over from the days when I had to cath her.

    Now, I still do a fair share of running and doing for her. She can dress herself, but there are days when her pain level is so high that I can't harden my heart enough to watch her struggle into her pants, with tears running down her cheeks. It's the "mom" in me. I will NEVER get used to seeing my daughter struggle and be in pain. So I help. BUT...she can do it by herself; we both know this. If something were to happen to me, suddenly...she MUST be able to care for herself. And maybe that's the mind-set you might want to adopt. Your spouse may be forced into independence by some new, unforeseen tragedy (God forbid). In my case, I need to know, for my own peace of mind, that if I were to drop dead, Bri could dress herself, do all her personal care herself, transfer by herself, etc. And it was this that motivated both of us to make sure she can do all those things (which she can, thank God!)

    So, let's see. A couple of steps in this 10-step program for #10:
    1. List every piddly little chore you do, and show it to hubby (or whoever you care for). Really. The longer the better...drama is good here.
    2. Evaluate, TOGETHER, the things he could do on his own...and list them under the heading "YOUR responsibilities"
    3. Explain that his independence is necessary, not because you're a bitch, or selfish..but because life is uncertain, and he needs to be prepared. He, of all people, should recognize and agree with the "life is uncertain" philosophy. In time.
    4. Begin humming "We Shall Overcome" as you go around the house...

    And finally, as my grandma used to say: "Free advice is worth what you pay for it" and..."It's a grand life if you don't weaken."


  7. #7
    Senior Member kate's Avatar
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    Jan 2002
    bellevue, wa, usa

    Oh, wow.

    My long and grueling training as daughter, sister, and wife of various alcoholics luckily preceded this present period of life as wife to a man with sci.

    The most important thing for me to remember is that he is still a man, and still the man I freely choose. It's hell to see him feeling frustrated, helpless, or in pain, but he's WAY, WAY better off in the long run if I get the hell out of the way and let him work out how to do things on his own. He'll ask me if he really can't manage, but I try hard not to offer help so that I won't have to watch him struggle.

    It's not an easy thing for me to resist being the one someone counts on--that was the attraction of active alcoholics! They're so wonderfully needy, and it's so easy to make them grateful, but only in the near term. Over time, they start to despise you for your "help", and you start to despise them for needing it.

    There are similarities to the two situations, and, I'm well aware, also many differences. And I also know that Bruce has a lot of function in comparison to others at his injury level, which makes me hesitant to talk about this here at all. I mean, it's easy for me to say, right? He has one working hand, and he can get around with a walker, if there's enough time.

    But I did set my alarm to help him turn over, for months, and I did do his range of motion stuff for half an hour every night for a year, and I read to him when he couldn't hold a book and sit up at the same time. I helped him dress, washed the leg bags, ran endless errands, took him to the doctor, gave him his meds, used the e-stim machine on his hamstrings night after night when I was so tired I could hardly see--all of it.

    If he behaved in the way some of you have described your men behaving, I would not survive for a week. I'd be so resentful and hostile, believe me, "bitch" would be much too mild a word!

  8. #8
    Senior Member krajaxa's Avatar
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    Dec 2001
    New Castle, PA
    Ok, I think I will also need the 12-step program to start #10...

    Since I work full time away from home, hubby and his two attendands do most of the work at home: they clean, cook, shop (50% of times), do some of the docs visit. I end up helping him w/showers (most of the time, sometimes he does it himself), cathing in the morning (he does only once/day), stretching in the morning (if he is not still asleep by the time I leave) and I "run the snack trails". So lots of times I even feel guilty to ask him do something extra... Do you blame me?
    I know once we have a baby he will have to do more... for himself and the baby... But I have to say we like challenge and it seems to me, that whenever we conquer one we find two more to get ready for...
    At times I do get depressed, but I'm really thankfull to my mother-in-law that has the ability of the best psychologists to listen and give the right advice (and she knows how to work hubby's strings too!).

    So in the end, I am not even sure if I want to change anything yet...


  9. #9
    Senior Member dogger's Avatar
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    Jun 2002
    Mitchell , Qld. Australia
    Ladies , i hope you don't mind if i respond here . i have been sitting here rereading Marmaladies post and thinking about it from the other side , i will do my best to put my views down . i will address #10 as it is the one i have the most experience in . i believe if i accept help from someone else or ask them for help with things that i can reasonably easily do myself , i will lose my independence and become dependant through a combination of lack of exercise/inniatitive [particularly in things that are beyond a ''normal ''C5/6 ] and laziness . my mother is a ''smotherer' and during her visits continually says ''i could have done that for you '' , or tries to pre-empt what i am going to do and does it for me . small example , at mealtimes at the table i eat at all the time , salt , pepper , sauces etc. are in a group in the middle of the table , after bringing my meal [ on a hot china plate , because the plastic ( which i use because they don't get as hot to touch and the heat gives me hand spasm which at times has made me throw a plate on the floor ) ones i use are not ''nice'' ] , next she places the salt , pepper , sauces etc in a semi circle around my plate until it looks like it is walled in . if i dare say '' it's ok , i can get them myself '' , there is a spiel about me needing help , how i accepted help from so and so [ normally for some light little task like changing an inside dual wheel on my 15 tonne truck ] , why won't i accept it from her or how she does it out of the goodness of her heart . i breathe big sighs of relief when my mother leaves . another experience comes to mind , i was visiting my old rehab unit and wandered into OT [ there were a couple of Lady therapists there who i reckoned were real easy on the eye ].when i sat down there was a family group , a young bloke [ ex patient longer post than me ] about 20 , about C5 or 6 , and his parents already talking to one of the ''very tidy '' therapists .i had a yarn to another therapist and some new patients , but couldn't help watching and listening [ it was a bit hard not too , mum could have talked with a mouthful of marbles underwater and was loud to boot ] . her monotonous theme was how good the son was doing and how he WOULD walk again ! if she had been mine , i would have somehow regained the ability not to simply walk but to run so i could get away from her . Dad sat there with a resigned , long suffering look on his face [ not saying anything , with mum in full flight there was not a chance to fit a word in ] , the son sat in his w/chair with his head down looking like a dog who has been beaten into submission . when mum thought she had finally got the message through about how the son would be cured through her , persistance , knowledge , ability , courage [ and many other qualities that i forget ] , she turned to her husband and said '' c'mon dad , time for us to go ''. with that dad reached down over the son to the brakes which were about 2'' away from the sons hands , flicked them off and pushed him away in mums wake . after telling the people i was with i would be back soon i followed them out wanting to have a talk in private with the son [ if i could separate him from ''the dragon ] and ask him what he thought . to try to impress on him that if he wanted to gain any sort of independence he had to start to assert himself a bit and do some things for himself . how a good start would be to at least handle the brakes oh his chair himself , pushing his chair himself in areas that are easy going , like the rehab area and to try and loosens mum's grip a bit .when i got outside i couldn't see where they had gone , so i went back and asked the therapist about him . she said that he had been reasonably independant in rehab when mum was absent , but since leaving she had seen him going backwards as mum smothered him and did absolutely everything for him . she also said that she worried what would happen to the son as mum got older and frail and perhaps died . about the only comment i could make was '' that dragons like her never become frail and die , she would still be bossing people around 100 years from now '' .
    sorry for rambling on and i know none of you ladies fit into any of the above but i felt i had to reinforce how important in my opinion #10 is .

    thank you

    every day i wake up is a good one .

  10. #10
    Senior Member martha's Avatar
    Join Date
    Jul 2001
    Texas hallelujah!
    Originally posted by krajaxa:

    ...cathing in the morning (he does only once/day
    I hate to be nosey, but how can he get by with just cathing once a day? If mine could do that, it would solve the cathing in the living room problem.

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