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  1. #1
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    Mom as caregiver - depression issues

    Any advice from other moms who have had there last child ready to leave "the nest" only to have them in a serious accident leaving there son/daughter paralized. Instead of a new life beginning for mom, she is left to be the sole caregiver of her son. How do we get through the feeling of loss of her life, or not having one. Not knowing what makes her happy anymore and the time being consumed by taking care of all of the mundane every day activities that caregivers have to provide. Being on call 24/7 - even a simple trip to the grocery store has to be rushed to be back to solve a small problem. And lets not even think about getting away for a weekend or completing a task, such as balancing the check book, amign phone calles, etc., without interruptions. My mother is depressed and feels she has no life and my brother does not want to look at an outside caregiver. She is coming unglued and rightfully so, as even during the sleeping hours she is called on every hour or every other hour to move him, or change his position or get him water, etc., he is a quad. Any advice would be greatly appreciated in getting her life back and feeling fullfilled as a person and not simply a 24 hour on call caregiver. Thank you.

  2. #2
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    Mom is still a person

    How long has your brother been hurt? He needs to realize his mother is still a person and if he doesn't give her a little time to herself, He won't have a choice of an outside caregiver because your (his) mom will get sick and won't be able to care for him. So she really needs to find someone to help with him and he needs to accept she needs help with him. My husband is a C5-7, post 5 months and I was doing all of his needs by myself, raising 2 young children, house cleaning the whole mess. And I found that even having a person come in for an hour a day and get Bob up, do his range of motion, This has helped me alot. I have a little time to take care of the children without running between all of them and not getting anyone done correctly. But your mother will burn out if she doesn't get some time out for herself. Will he even let you take care of him for a couple hours or so? I was close to burning out and it was only a month and 1/2 so it can happen quickly. Ask her to get on line the people on here have helped me alot since I found this website.

    Cara

    "We have to love ourselves before we can love others."

  3. #3
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    Is your dad around? And does he help?

    Im a dad who cares for my son who is C5 functionally.So he needs round the clock care.My wife works full time and I have my own part time business along with 4 other children all who help with him sometimes and we have a nurse aid that comes everyday for 8 hrs.Everybody who loves Mom has got to help and your brother who is a Quad has to know things must change. A family meeting might be in order. Or bring a health care Professional in to talk with everyone.They did that with us a few times while my son was in rehab.All of us learned about Justins care and I talked about the help different family members could give and then as we live it out things may change but everyone helps in different ways knowing how important it is for the main care givers to be relieved. Maybe your brother will wake up to the importance of everyones well being. Developing new freindships are vital as well.Lets him know he has a life. Sounds like he might be really depressed or he wouldnt be as demanding.Just throwing some things out there that might be a help.Of course everyones situation is so different but those basic needs and responsibilitys are common to all of us caring for a loved one that is dependent on us.

  4. #4
    Senior Member TD's Avatar
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    A few questions first

    Before I put my foot in my mouth and offer any suggestions I would like to ask a few questions.

    Is your brother complete or incomplete? How was he injured? Does he have any muscle use and where? Has he been through a rehab center? If he has been through rehab, what did the OT and PT say about your brother's condition and his abilities?

    It sounds to me like your brother is still clinging to Mom. This may be caused by depression and/or fear. It would be helpful for you to step in occasionally and help out. I think you should follow Joseph's example and bring in outside help whether your brother likes it or not. Perhaps his anger will cause him to become as independent as he can be.

    "And so it begins."

  5. #5
    A mother is not a slave, and she and he both need to realize this. Family members may help with care, but most people with quadriplegia (even high vent levels) move away from home and Mommie and get their own places, manage their own attendants, and live an independent life if they can manage it financially and cognitively (it may be different for someone who also has a brain injury).

    A family meeting is in order. Mom either needs to stop doing any care or limit what she provides to no more than 4-6 hours daily (none at night). If his level is below C5, he needs to learn to do more for himself, including turning in bed, or spend the money for a turning mattress. Water can be set up that he can access through a long tube at night. This should have been done long ago.

    He needs to hear that if he kills his mother or makes her sick due to his unreasonable demands that the family will hold him responsible, and then he will go to a nursing home as none of the rest of the family is willing to risk their health like this. Maybe that will wake him up.

    I agree that a social worker or case manager may be needed to help referree this discussion for the family...but don't let him refuse to participate. It needs to be just like a drug intervention...you will have to gang up on him, and tolerate his anger at your for the effort.

    (KLD)

  6. #6
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    Thanks everyone...

    Well to answer some of the questions:
    Yes, I go over there and help/hang out with him when I can adn I do enjoy it. We get to cathc up on everything. But that seems to be the only time she gets the no phone call, non rushed break. Maybe it is not that he calls her everytime, I believe that she worries maybe too.Thinkig about what would happen if there was a fire or someone broke in, etc. I guess there is also the mental restraints that she feels along with the other demands.
    He is C5/6 - complete (others have said incomplete). He was just gettign to the point in therapy where he could learn how to do pressure releases himself and also possibly learn how to help with and maybe eventually do transfers himself. His biceps * shoulders were gettig stronger - UNTIL.. this pressure sore took a turn for the worse adn he had monor surgery and now is layed up for most of the day. So it was a step backwards.
    He has been injured for a year & 3 months. Dad is around but runnig his own business and the sole bread winner. He helps at home when he can with doing excersizes and things.
    I believe he will understand what she needs when she has "the talk" but I agree the caregiver at home is what she adn he needs to keep there sanity.
    Thank you for all of the advice.

  7. #7
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    I am a C4-5 QUAD, 28 years disabled. Your bro needs to stop living the helpless me life and hire an outside caregiver. I remember mom & dad doing it all in the beginning but they were not happy. After speaking with other quads visiting the hospital, I saw it was my problem. Time by myself helped me the best to learn to do for myself or do without. It's called maturing, I finished school and moved out. Not to say your bro needs to move out, but let him start hiring outside help. I saw my parents attitude and love flower again and I felt better too. A good friend of mine(quad), never learned to take control of his life. He still has mom doing his care despite mom's bad health. His siblings don't want the responsability to help him or hire someone, so who suffers? Everyone! Don't let that happen to your family.

  8. #8
    I'm a c5-6 quad complete, post injury 20 years. I've peer mentored many folks like your brother since my injury. From what you've said here my guess is that your brother can't/won't see that life has much more to offer him than what he is seeing. He is clinging onto mom, because she represents safety. As you well know, this is not fair to mom or healthy for himself.

    Your brother needs to see the possibility of an independence that right now he has no knowledge of. First, I suggest that you get hooked up with an independent living center and a GOOD peer mentoring program so that he can begin to see that he has options and can start to seek what his next steps are (school, etc.). You can be vital in this. Load him up in the car, take him down to the ILC/local college (disabled student services office can be a GREAT resource...often much better than the local ILC) and start him down the road of getting on with life.

    Keep in mind that voc rehab will pay for school. I know many a high quad who started their independence by living on campus in student housing and going to school. Campus life can also offer a pool of attendants otherwise not often available because you get college folks who need part-time jobs and have no transportation for off-campus employment.

    Your brother needs to see that life offers more than what he is currently living. You can play a vital part in showing him that. My brother is the one that kicked me in the shorts and said "time to live again." He became my best friend, and I can never repay him for being my bridge to independence. He's the one that started forcing me to go out to clubs and live again...to start living like an 18 year old again. He now lives in Seattle and I'm in Phoenix, but we talk every weekend. And because of him "kicking me in the shorts" I now drive, got my undergraduate degree and law degree, have a beautiful wife, own my own house, and have a business that is doing well.

    I wish you luck...sounds like you have a great family...and that's usually what makes the difference. Be patient...you will overcome this

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