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Family member looking for answers

Hello everyone my name is Heather and my brother Jason is paralyzed due to a spinal infection from a bed sore he got from a nursing home stay.  He has been hospitalized and sent to nursing homes since September of last year. My family and I have now taken over his care due to his separation with his wife. He is being discharged possibly in 2 weeks. We are working on getting my mothers home ready for him, I have so many questions but I think my min question is, is there any organization or contact I can look into to help us with his specific needs besides the ramps, beds wheelchairs. We just started taking over things the past month so we are very unsure of where to turn. I am not even sure of the specifics of his paralysis all I really know is he is an amputee due to diabetic complications everything was fine for the past 9 years and  in September he was hospitalized sadly due to a suicide attempt. He was recovering but he and his wife decided to send him to a nursing home to finish his recovery that was not the idea we had for him, but after about 2 weeks he had a bedsore, long story short he got an infection and now is paralyzed from the waist down. Please excuse my words I am not even sure how to ask for help right now. Thank you in advance

Comments

  • NoreenGNoreenG Member Posts: 2
    First Comment First Anniversary
    If you contact one of the information specialists, they will help you find resources in your area.  https://www.christopherreeve.org/get-support/ask-us-anything

    Good luck.
  • ambercollieambercollie Moderator Posts: 130 Moderator
    100 Comments 25 Likes First Anniversary 5 Awesomes
    @[email protected] Thank you for sharing your situation about your brother. I also have a brother named Jason,  my daughter has diabetes and yes if goes untreated  amputation can happen. Sad to hear your brother did not receive good care at the nursing home to the point of getting a pressure sore which comes from lack of turning him and getting out of the same position. Very sad to hear it turned into paralysis.
    Which takes me to my son who is a paralyzed quadriplegic.
    So 1st thing...
    Things Can Get Better!
    Sounds like your family is getting things ready or he may already be with you by now. It takes time to adjust but you will find a routine and ways that will work for you guys. That pressure sore NEEDS to heal! Once that is completely healed. I’d recommend physical therapy good for both body and mind. Figuring out bowel program and showering takes time. Make sure he gets outside daily, don’t let him stay in his room or house all day. There is so much more I could say but just remember your Not alone. Your brother Can Have a Good Life, half the battle is mental! I hope you find local support and therapies. Keep posting questions here as well. You are a good sister and you guys will find that new normal.
    (Heather1972) if that’s the year you were born, then we are the same age!
    Hang in there!
    Check out on YouTube:
    Zack Collie he has a channel that is All about living with paralysis.


  • ambercollieambercollie Moderator Posts: 130 Moderator
    100 Comments 25 Likes First Anniversary 5 Awesomes
    @Heather1972
    How are things with your brother?
  • Heather1972Heather1972 Member Posts: 4
    First Comment
    Its very difficult, my mom is trying her hardest. I mean he is very happy he is home but this is a very new life for him and trying to get him what he needs is almost impossible. The nursing home did not send anything for him so we had to search the stores for pads for under him, saline to treat his wound, and all that kind of stuff. They did not give my mom any information on diets, or exercises, they just kind dumped him off. So I have been researching and trying my hardest to help them with whatever I can. He has been kinda moody and just wants to be left alone but my mom wont let that happen. We are now trying to find a regular wheelchair for him ( the electric wheelchair they gave him is a loaner an the one that is fitted for him wont be delivered for atleast 4 months they said. We are trying to build a ramp to take him outside so he can enjoy the weather, he has a little ramp so when they get him out of bed and into the chair he can sit in the living room with everyone. I had no idea how mentally and emotionally draining this is. My hats off to all of you. Thank you for asking how we are doing! I hope you all are doing well.
  • ambercollieambercollie Moderator Posts: 130 Moderator
    100 Comments 25 Likes First Anniversary 5 Awesomes
    @Heather1972 Thank You for the update.
    Can I ask what state your brother is in and how old he is?
    Most of us have tips on most any question so please ask! Yes, the transition home is both “glad to be home” and totally overwhelming!
    Does your mom have help?
    Does he qualify for any caregiving with his insurance plan?
    You can buy portable ramps it’s a must for him to get outside in fresh air if possible. That 1st wheelchair takes Forever!
    He still has a pressure sore??
    Do you know what level injury if complete or incomplete injury? These diagnosis can help with ideas on how to help him. Sorry for all the questions but we’re all here to help. 
    Hang in there this is a huge transition for everyone involved. 

  • Heather1972Heather1972 Member Posts: 4
    First Comment
    We live in Illinois and he is 45 years old. Right now my mom has my other brother who is helping her with Jason and my husband and I go over to help when we can. He is on state insurance and Medicare, we have been trying to get any answers from anyone but unfortunately with this pandemic not many answer their phones. He has been through the ringer with this pressure for he got in the nursing home. It's still a stage 4 on his backside. He cant transfer they tell us until this sore is healed and can only tolerate the chair for 2 hrs. The wound care doctor cancelled on him and said he did not feel comfortable treating him, so mom has been trying to find anyone to treat this sore. My mom is a retired nurse but this pressure wound scares her. All i really know about what's going on medically is #1 hes a diabetic (leg amputated 3 years ago) he had a diabetic emergency (almost died numbers were over 500) was admitted to the hospital in September,  they sent him to another hospital to heal. From there my mom and I tried to get him into another apartment but his soon to be exwife said no and sent him to a nursing home ( the one he got the bedsore at) one we found out we moved him to another facility. Here he was doing great but the infection from the bedsore went to his spine, which one morning he wokeup and could not feel his legs. He was told he could die if they could not get the infection out of his spine, and he would not survive the surgery. Thankfully the antibiotics worked, his soon tobe exwife sent him from the hospital to yet another nursing home. They did not look at his meds and he was taking so many meds and was admitted again to the hospital because all the meds counteracted each other. So mom and i finally said enough your coming home. I'm sorry this was so long, I'm just mentally drained and a little lost on how to help.
  • ambercollieambercollie Moderator Posts: 130 Moderator
    100 Comments 25 Likes First Anniversary 5 Awesomes
    @Heather1972
    You did the right thing in bringing him home. Does Jason have use of his upper body? There are many exercises that can be done in a chair but of course the number 1 thing is that pressure sore! There is a product on Amazon called

    Duo Derm extra thin spots
    ref #187932 I tried attaching a link but didn’t work. It’s worth a shot!

    Glad to hear your mom has nursing experience. 
    In California if have state insurance you can qualify for In Home Support Services (IHSS caregiver help) or a family member can sign up and get paid. Again worth looking into 
    It’s definitely ALOT going on right now, Hang in there. 
  • Heather1972Heather1972 Member Posts: 4
    First Comment
    Thank you so much I'm going to look into that product! He has a little upper strength my moms making him do exercises with bands. 
  • ambercollieambercollie Moderator Posts: 130 Moderator
    100 Comments 25 Likes First Anniversary 5 Awesomes
    @Heather1972 try looking up Illinois Dept. of Human Services (IDHS)
    Home Service Program (HSP)
    800) 843-6154 
    they have a website saying they help disabled people under 60
    Maybe get the process started so when CV lifts he can have extra help?
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