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Overwhelmed and scared

  • By brauckmiller

    Hello all, I’m new to the forum. My wife was diagnosed back in 2006 and has slowly been progressing down the path of losing her ability to walk.

    I’ve been doing everything I can to help her. We’ve installed a stair lift in the house, a handicap accessible shower and recently installed a chair lift outside so she can get outside.

    Very recently, she’s been having more issues. Her left leg has started becoming more spastic. She’s on Baclofen for that, but it doesn’t seem to help.

    It is to the point now where she has trouble standing and transferring from the bed to her chair and chair to the toilet.

    I just don’t know what to do now. I work full time and can’t stay home to care for her and I ear too much money to have the state help with in-home care for her. her sister is eager and willing to help, but we are at a point how where her mobility is causing issues.

    What do I do? Where can I go to get help? I’m so frustrated right now that it is literally bringing me to tears.

    Please help.

    Thank you,

    Craig Brauckmiller
    Shirley, MA

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  • By Erin Rush Moderator

    Hi Craig,
    Thank you for posting. First off, I’m sorry to hear all that you and your wife are going through. As you know, the role of primary caregiver is very challenging. There is a community of caregivers here that might be able to offer support and suggestions. You might be able to ask your wife’s physician about possible care resources. Sometimes, pursuing options through your insurance company can be fruitful. Being the squeaky wheel pays off once in awhile! Our community member, Donna Steigleder, is a caregiver for her husband. She has written many helpful articles on this topic. Here is one — https://multiplesclerosis.net/caregiver/caregivers-perspective-competent-job/. If you type “caregiver” into the search box on the upper right side of the MultipleSclerosis.net homepage, lots of articles on the subject will pop up. Beyond that, it sounds like you are exhausted, physically and emotionally. I am so glad you made the effort to reach out! Self care is vitally important for caregivers! You might post on our Facebook page, too (it’s MultipleSclerosis.net on Facebook). Many of our community members post and read frequently on it. The community here is always available for support or for a place to talk and share your thoughts and feelings. You can also check out this article about the Caregiving Action Network (CAN), caregiving and support network that you might find helpful — https://multiplesclerosis.net/living-with-ms/got-ms-who-cares/. Please keep us posted! Thank you again for sharing. We’re glad you’re here. Thanks, Erin (MultipleSclerosis.net Team Member)

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  • By caregiverX1

    Craig, Sorry to hear about your plight. I was where you are about 9 years ago. My spouse’s MS became aggressive 2 years after diagnosis. My suggestions: Check with the MS Society in your area to see how they may be able to help. They also may be able to connect you with people/resources in your area that can help with in-home care for your wife. Also, it would be worth your while to consult with an attorney that specializes in estate planning. They are very much in the know when it comes to what may be available to you living in the state of Massachusetts and your situation of earning too much to qualify for Medicaid (each state varies with what is available). I would also be proactive with her neurologist and find out from him/her what other medications are available for her if her current treatment doesn’t seem to be stabilizing her.

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  • By caregiverX1

    Craig, (addendum to last message),

    If your sister in law is eager to help, make sure she has the assistive devices/equipment in-house that will allow her to care for your wife more efficiently.

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  • By brauckmiller

    Thanks all for the replies.

    Since I wrote this post, I had to take her to the ER. She was extremely lethargic and didn’t eat for 3 days.

    Well, it turns out that she had a pretty serious UTI and may have taken too much of the Baclofen. She was in the hospital for 5 days and has now been transferred to a rehab facility. We’ve got VNA also lined up for when she is released.

    At some level, I’m relieved this happened because it really did get the ball rolling and a lot of experts have gotten involved and have been very helpful. I don’t feel as overwhelmed as I did, but I still worry for her and it kills me see her suffering. If I could change places with her, I’d do it in a heartbeat.

    Wish us luck and thanks for the advice.

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  • By Erin Rush Moderator

    Hi Craig,

    Thank you for updating us on your situation. While I am so sorry to hear about your wife’s suffering, I am glad that the one ‘silver lining’ you have found in the situation is the expedited care your wife is receiving. I am sorry that’s what it took, but I am glad that she is getting the support and care she need. Don’t be afraid to let her medical team know you are her primary caregiver – they might have some other resources you can use to get a break once in awhile. You sound like a wonderful, caring husband. Please come back anytime to vent or just to keep us posted on you and your wife. Thanks again for being here. Have a good evening, Erin (MultipleSclerosis.net Team Member)

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  • By womaninlove

    Craig, I feel your worry and fear. My husband has MS and it deeply hurts me to see him struggle and I also struggle with how to provide care for him – and for myself. i wonder if you have a church to rely on? Some churches have folks who will come and sit with your wife for an hour or two. Here’s some tactical things I’ve learned over time to feel better about leaving my husband alone. When I have to work (part-time now) or go out here’s how we cope: I have easy to eat foods and a large water jug with a straw in it on a table by my husband’s chair (we bought one of those chairs that lifts him up with a press of a button so he can get up more easily when needed). Also sitting within arm’s reach is what we affectionately call his ‘peepee jug’. I bought one at the local drugstore and my husband just ordered one off Amazon that has a ‘non-slip’ bottom (yes, it got knocked over once!). My husband also had serious UTI and frequent urination is a problem and the peepee jug has been a lifesaver during the day and at night. They’ve got one for women, too. iPad and iPhone with charger also are close by on the table and he’s got a ‘gripper’ that helps him pick up things and a hook thingy made by an OT to help him pull up his pants. If he needs help he calls either a nearby neighbor-dear friend who is at home or 911 if he should fall or be unable to get out of his chair or commode. So far his falls have been when I’ve been there. I can’t pick him up because he’s a big man and so we call 911. We were embarrassed at first but these EMTs are SO gracious and kind and make us feel OK calling. They said they want to help people stay in their homes rather than need to go to assisted living. I also text him when I’m gone about once per hour to check in – more for me than for him. Craig, like most of us you need to work to provide for your family. You are in financial ‘limbo’ where you don’t qualify for financial help yet don’t have enough money to hire in the help you need. We now are hiring someone to come in once in a while from a home health care agency – and that’s not cheap. I hope these hints are helpful in coping with being in this middle ground. We can’t and won’t stop living and so we cry and scream over some of the challenges presented by MS and then get moving and problem-solve, problem-solve ❤️

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