Page 1 of 2 12 LastLast
Results 1 to 10 of 11

Thread: advice and support

  1. #1
    Junior Member
    Join Date
    Mar 2005
    Location
    salem,ma
    Posts
    5

    advice and support

    my name is melissa i am 31 yr old . On 2/11/05 my 33 yr old cousin went into the hospital to have a rare tumor removed from her spinal cord.She is now only able to move her arms and hands and head. She can feel from her breast and up. She is a single mom of 3 children ages 15,12,and 9. She lives on a 2nd floor apt.I have spent the pass 7 days making phone calls and searching the net for any resources that can help with a stairlift. Because her stairs curve at top they tell me it has to be custom made and cost 8000.00 and above.I visit her daily only to see the sadness in her eyes. I feel so bad being able to walk.Because she has state medical they dont pay for much. And she can not go home without a stairlift. Her children miss her dearly.It breaks my heart when she calls me and I tell her no lucky in finding any funding... I wrote to christopher reeves. And received information I have sent aplications wrote to state senator Oprah Maury.She is due home 3/15 rehab says insurance wont keep paying.I am so lost as to how to help her.I pray everyday that I will get that one email or phone call that will come through for herthanks for reading this I appreciate it.
    God Bless
    Melissa

  2. #2
    Meli, I am so sorry about your cousin. Spinal cord injury or disease is a club that no one wants to belong to.

    Is the social worker at the rehab center where she is currently helping with this? Most people who have a new injury like this have to move if they live in an inaccessible place. Landlords are unlikely to approve installation of a stairglide in a rental, and the risk of breakdown and being trapped is very real. In addition transfers are usually still required, and as you know, the expense is high. If you install it in a rental, it also becomes the property of the landlord and she would not be able to take it with her once she moves.

    I would think helping her find a first floor place to live and helping her move would be the best thing you could do for her right now. Who is caring for her children?

    Has she really maximized her rehab potential? Just because insurance says she must leave does not necessarily mean she is ready. Talk to her physician and case manager. Ask them to help you file an appeal to extend her stay. It will be difficult but critical to prevent her being sent to a nursing home. She will also probably need help after discharge. Can you help? Does she qualify for attendant care?

    (KLD)

  3. #3
    Melissa,
    Please take KLD's advice and start with the Social Worker at the hospital. If he/she can't help your cousin then ask who can. Maybe Salem is known for witches, but there must be a group that can give some immediate support. Since she is your cousin are there any other family members who can also help with her children and the apartment? I agree that rehab is very important to getting back as much function as possible.
    Good Luck,
    Carl

  4. #4
    Junior Member
    Join Date
    Mar 2005
    Location
    salem,ma
    Posts
    5
    SCI Nurse,
    The casework handed me a flyer for equipement I went to the place all their stair gliders are for straight stairways.The landlord is a friend of her brother. He is allowing the bathroom to be redone and a ramp to be built. He seems like a real nice guy. She has had 2 extensions. Since being at rehab.She entered the rehab on 2/17 or 2/18.She is on Housing through Boston Ma But lives in Peabody. Housing has handicap apartments but the are single bedrooms in elederly building.We most live on 2nd or 3rd floor or our bedrooms are on second.her mom lives in the building where it has elevator and handcap apts but only 1 bedroom. Her ex husband is keeping an eye on the kids til she comes home then they can visit suring day and sleep @ his place at night til she is able to keep them all night.I suggested a new place but she says she the kids like their school and dont want to more to bad areas.She called me excited that she felt her passing gas. Sorry to say it like that.The doctors tell her that is phantom pain or something like that.they also said she might be able to feel sensation to go to the bathroom because now she can not tell.I told her about this website and how I spent 3 hrs reading posting. I told her this would be the place for her to make friends and ask questions that maybe her familycan not answer.I am confussed as to what they call rehab at the hospital she is at. They help her in the wheelchair and she sits for 4 hrs talks with family ,goes to gift shop, plays cards.I thought they would do more.can I ask when she will not have as much pain? She is controling her medicine for pain instead of every 2 hrs she waits 5,6 or 8 hrs.I think it is called methadone.She takes a blood clot preventer and steroids and neronten(misspelled).Her sister from NH is coming to help her for as long as it takes.She will live with her. She is coming this week to learn things need to care for cath and other things needs.She has 2 sisters and a brother.All have families but all said they will help.I go to college but I am only taken 2 classes. I can help as much as needed. I just dont handle the sight of blood or needles well.I see her daily talk to her when I am not up at hospital. I bring her magazines and I am organizing the benefit dance. And trying to find resources for the stairlift. I just do not want to let her down.My heart breaks when she cries.I am unsure if she qualifies for attendant care or health aid. The mass office of disability told me have her evaluated. I am not on her paperwork her sister that lives in Peabody is. But I thnk I can make an appointment for them to visit her. Thank you so very much for writing back..
    God Bless you all
    Melissa

  5. #5
    Is she in a nursing home with therapy, or in an acute rehabilitation center? If the latter, she should be getting a minimum of 3 hours of therapy daily. If in the former, she needs to get out of there and into a decent rehab program, even if as an outpatient. She may need to look at the reality of her situation...I fear she will end up in a nursing home if she does not flex on moving, and her children may be taken away from her if she is unable to care for them. This does happen. The case manager and social worker need to do much more to help her find alternatives....giving you info for equipment she cannot afford is not a solution or appropriate professional assistance. Talk to the patient representative or ombudsman if needed.

    (KLD)

  6. #6
    Junior Member
    Join Date
    Mar 2005
    Location
    salem,ma
    Posts
    5
    KLD,
    She is at rehab hospital that has in patient and out patient. They told her that she would be picked up from home and brought to there for therapy m-f.We are trying to avoid the children being taken away from her, because her children are what is making her fight and not give up.I feel the same way the case worker needs to help her but she seen her 2 times.I am going to tell my Aunt to ask to speak to the patient representative.i am unsure what a ombudsman is.I want to thank you for helping me and giving me good advice.
    thanks alot
    Melissa

  7. #7
    Is this center CARF accredited for spinal cord injury rehab? You can look it up here: www.carf.org

    CARF accreditation is voluntary, and an excellent measure of excellence in qualify of a rehab program.

    (KLD)

  8. #8
    Junior Member
    Join Date
    Mar 2005
    Location
    salem,ma
    Posts
    5
    Kld
    It shows the hospital on the list says 3 yrs accreditation. The hospital is called: Shaughnessy-Kaplan Rehabilitation Hospital.In Salem,Ma.
    She spent more time in her chair today.More than 3 hrs I think 5 or 6....
    Thanks for the help.
    Melissa

  9. #9
    That program is accredited only for general medical inpatient rehab, not specifically for SCI rehab. The only non-VA SCI program in MA that is CARF accredited is HealthSouth New England Rehabilitation Hospital.

    (KLD)

  10. #10
    Senior Member amanda's Avatar
    Join Date
    Sep 2003
    Location
    Arkansas, USA
    Posts
    959
    meli- I am so sorry to hear about your cousin. you've found a great place to get the information you need to help her through this rough time. if there is a place at the hospital where she can have internet access, try to encourage her coming here and learning about her situation. it is most definitely a new way of doing things. but, her life isn't over. she is lucky to have caring and supportive family. my thoughts and prayers are with your cousin and all her friends and family.

    " The best way to predict the future is to invent it."
    - Alan Kay


Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •