Siblings as Caregivers

BrookeUBrookeU Posts: 108Moderator Moderator
25 Likes 10 Comments 5 Awesomes Photogenic
If you're a sibling who plays a role in caregiving, what kind of support would you like to have? What kind of feelings do you struggle with in your role? Do you have any advice for other siblings who might be caregivers?

Comments

  • sasha9125sasha9125 Posts: 4Member
    First Comment
    I care for my 24 yr old son who is paralyzed from a car accident 3 months ago,it has been a challenge I do everything for him but I feel over whelmed at times hes angry he seems depressed I have tried to get him help but he refuses he says hes fine we have had many complications blood clots in lungs,pressure sores on heels, multiple UTI's and right now we are dealing with C Diff from antibiotics it is terrible he feels even worst he has diarrhea all day he doesnt want to get out of bed, I need to know how to motivate him how to make him see that being alive is amazing and that things will get better we are also having issues with bowel program.
  • BrookeUBrookeU Posts: 108Moderator Moderator
    25 Likes 10 Comments 5 Awesomes Photogenic
    edited February 26
    Hi, @sasha9125. I'm sorry to hear about the difficulties that you and your son are currently facing with accepting the new reality. My brother, who has a C6-7 level SCI, is also 24, so I know how hard it can be to watch someone you love of that age being infuriated with having less independence than they'd like to. I suggest contacting the Reeve Foundation's Information Specialists; the team is available to answer questions and provide individualized support. They're on hand to help whether you've sustained an injury, or are getting in touch on behalf of someone else who is impacted by paralysis. https://www.christopherreeve.org/ask
    Best,
    Brooke
  • Monica.TMonica.T Posts: 76Member ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    sasha9125  Being "overwhelmed" seems to be part of this in the beginning - my son is 18, we are 20 months into this new way of life, and at first it is extremely over whelming, the over load of must learn information, doctor appointments, therapy appointments, and just trying to adjust to everyday unexpected occurrences. As a mother we too struggle to cope and adjust, and as mothers we often suffer in silence, put on  a strong exterior so nobody sees that we are barely holding it together on the inside!  The feeling of helplessness, of not being able to fix it or make life better RIGHT NOW drowns us in a sea of emotions. But hang on, with time things will begin to sort themselves out, you two will begin to figure out a routine that works and that will help ease the stress and tension. Don't choke on the tears, let them fall, crying is a great emotional release.

    Your son's emotions are his way of expressing the hurt, anger, fear, frustration, and pain of everything he's going through. My son also struggled with repeated UTIs, pressure sores, and diarrhea; it's the body trying to adjust to this new and very different physical way of being, like most anything else; adjusting takes time. During this time it's important to work closely with his doctors and therapists, making them aware of not just his physical problems but also his emotional struggles. Stress and depression can slow healing and recovery.

    As your son works with PT & OT and begins to gain whatever independence he can, it will help his emotional well being.

    A friend of mine explained this time like going through the grieving process, it's the same emotions, your son is grieving the loss of his former life, and so are you. Allow yourselves time to grieve, there is no time set for this, it will take however long you each need it to.   My son and I are still learning to cope, to adjust, and even accept this new way of life. One of the things that helped my son was doing things he enjoyed before his SCI  (but this didn't come until many months after his injury and not until we finally began to get his pain under control) it helped a lot with his depression.

    And try not to get overly discouraged, we are still trying to sort out a bowel program routine that works, and still have accidents sometimes, but now we don't go into full panic mode over it and I don't beat myself up over not getting it right. We'll get there, eventually and you and your son will too.


  • Monica.TMonica.T Posts: 76Member ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    sasha9125  Being "overwhelmed" seems to be part of this in the beginning - my son is 18, we are 20 months into this new way of life, and at first it is extremely over whelming, the over load of must learn information, doctor appointments, therapy appointments, and just trying to adjust to everyday unexpected occurrences. As a mother we too struggle to cope and adjust, and as mothers we often suffer in silence, put on  a strong exterior so nobody sees that we are barely holding it together on the inside!  The feeling of helplessness, of not being able to fix it or make life better RIGHT NOW drowns us in a sea of emotions. But hang on, with time things will begin to sort themselves out, you two will begin to figure out a routine that works and that will help ease the stress and tension. Don't choke on the tears, let them fall, crying is a great emotional release.

    Your son's emotions are his way of expressing the hurt, anger, fear, frustration, and pain of everything he's going through. My son also struggled with repeated UTIs, pressure sores, and diarrhea; it's the body trying to adjust to this new and very different physical way of being, like most anything else; adjusting takes time. During this time it's important to work closely with his doctors and therapists, making them aware of not just his physical problems but also his emotional struggles. Stress and depression can slow healing and recovery.

    As your son works with PT & OT and begins to gain whatever independence he can, it will help his emotional well being.

    A friend of mine explained this time like going through the grieving process, it's the same emotions, your son is grieving the loss of his former life, and so are you. Allow yourselves time to grieve, there is no time set for this, it will take however long you each need it to.   My son and I are still learning to cope, to adjust, and even accept this new way of life. One of the things that helped my son was doing things he enjoyed before his SCI  (but this didn't come until many months after his injury and not until we finally began to get his pain under control) it helped a lot with his depression.

    And try not to get overly discouraged, we are still trying to sort out a bowel program routine that works, and still have accidents sometimes, but now we don't go into full panic mode over it and I don't beat myself up over not getting it right. We'll get there, eventually and you and your son will too.


Sign In or Register to comment.