From Mother to Caregiver

Monica.TMonica.T Posts: 96Member ✭✭
25 Likes 10 Comments 5 Awesomes Photogenic

We've all heard the jokes about a mother being a cook, a maid, a butler, a nurse, a chauffeur, and much more. And being a mother is after all being a caregiver, we give our kids the care they need and want.  But becoming the caregiver of my child after he became paralyzed kind-of striped me of some of the 'normal, everyday' mommy stuff; it upped the everyday stuff to a whole new level.

Those milestones he had struggled to achieve throughout his life, first steps, going potty, dressing himself, brushing his teeth, even the simple task of getting in and out of bed - all those proud moments of independence are now gone. And, those everyday tasks have now been brought back, once again placed front and center in our lives. Only now, he's not an infant nor a toddler - he's a teenager.

I'm no longer the mom that gets to say, hurry up, get up, you're going to be late - instead I am now the mom-caregiver that he needs to help him begin his morning (two hours earlier than we did before). He requires my help to remove his night-time braces, PJs and sit him up, cath him and transfer him from the bed into his chair, dress him, put on his AFOs, and brush his teeth. He no longer gets his books ready for school, I get them ready and into his backpack the night before.

As both mother and caregiver I wonder, am I doing it right, am I doing enough? Am I doing to much for him?  Am I helping or hindering his progress?

Sometimes being mom & caregiver are exactly the same, but at other times the mom part of me has to step aside and let the caregiver take control, such as pushing him through the pain of his physical therapy, making him go into the stander he hates (the mom in me wants to give him and not make him do it, but the caregiver knows it has to be done). At those times the mom in me whispers words of comfort and encouragement, while the caregiver in me, while remaining encouraging must also be firm.

Some days I feel like I have been robbed of just being his mom.

Then I am harshly reminded he has been robbed of just being a teen and has been forced back into an almost child-like existence.

Comments

  • WalkywalkWalkywalk Posts: 3Member
    First Comment
    My son was injured less than a year ago.  This has been the hardest and the most difficult adventure of the life.   Although my son is not a teenage, he is twenty seven-still very young.  He feels like God hates him.  He was a world class athlete when the accident occurred.  Now, he cannot do anything alone.  It is a job to keep him positive about living.  He is more fortunate than most.  He has a wonderful girlfriend.  He is brilliant, a computer whiz, and an excellent speaker- but still cannot adjust to life as he is now. 

    I am his caregiver often, but his girlfriend is usually his caregiver.  I have learned how to do bowel treatments, and using catheters.  I have held him when he just cries.  I also feel I have lost being a mother.  Yet, I feel so bless that he is still with us.  He gets madder at me than anyone one in the world.  But I am mom.  My soul hurt with pain for him.  He has not had outpatient rehab because we can’t get reliable transportation.  When he does, it i terrible for him.  His power assist was stolen during one of this visits.  IT is not like he took if off him chair.  

    Additionally, he is plagued with UTI’s.  He experiences terrible pain and contractions of the bladder.  We have schedule so many doctor’s appointment only to miss them because the transportation cancels.  How can a person go on living when they are in such pain? I am helpless.  All I can do is call the ambulance and met them at the emergency room.  Why can’t doctor’s appointments be soon instead of six or more months away.  When one is in pain-life crawls in misery.
  • Monica.TMonica.T Posts: 96Member ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    Hello Walkywalk Your son's anger is a normal part of the healing process, hating God, hating his situation, hating what he can't do, what he now has to do, and even being angry at you; sometimes I think our kids direct their anger at us (moms) because they know they can vent their frustrations on us and be forgiven for it. My son's injury occurred 20 months ago and we are still trying to sort things through.  

    It may seem far off but as times goes on your son will begin to adjust, it will take time and lots of heartbreak and tears but he will begin to get there. My son broke down several times in great sobbing tears saying he wanted to die, nothing rips a mother's heart to shreds like seeing her child suffer and not being able to fix it. You mentioned your son likes computers, finding the things he can do and encouraging him to continue as many of those activities as possible will help him emotionally to understand that his life is not over, just different, very different but also still very much enjoyable.

    Being an athlete may make adjusting rather difficult for him, right now he is still in the beginning phase of his recovery, as the months pass and his body begins to adjust to it's new way of being, as pain management improves, and as he comes to realize there are still things he can do; his emotional and mental health will improve too.

    Since outpatient rehab is currently to difficult to manage, try talking to his doctors (ALL of them) about arranging for in-home PT & OT therapy , also contact his insurance and ask about what services they cover / offer - explain [in detail] the problems with transportation, pain and other issues. His insurance might even provide transportation to doctor appointments. Ask that your son be assigned an insurance case manager  also find out if his insurance has a case advocacy program, if so, contact them too. Anytime you speak with insurance be sure to write down the name of the person you speak to and request a call reference number, so if you have to call back you won't have to keep going back and forth repeating the problem to everyone there.  Also - please speak with his doctors about your son's 'anger' - depression often disguises it's self as anger.

    Pain hinders healing, make sure his doctors, all of them, understand that his pain is not under control - and that makes everything more difficult, daily life, sleep, productive therapy sessions and makes travel to doctor appointments nearly unbearable. I know your son is old enough to speak for himself but right now he may be to overwhelmed with pain, fear, frustration and anger to express himself clearly, {with his permission} become his advocate, speak up and keep speaking until you make yourself heard.

    "Additionally, he is plagued with UTI’s."    My son suffered from repeated UTIs until his urologist finally order  closed-catheter-kits for him, once his bladder begins doing better he will go back to the ones that are reusable after cleaning. UTIs seem to be an issue with many new cath users. I also learned from this site that cranberry juice and D-mannose can help prevent UTIs.

    He experiences terrible pain and contractions of the bladder.  Be sure his urologist is aware of how painful this is for him and discuss treatment options. Don't just accept 'you have to learn to live with it' as an answer. / The answer for my son was cathing more often, which meant going to war with the insurance to get them to pay for more than four catheters a day.

    We have schedule so many doctor’s appointment only to miss them because the transportation cancels.  Call and speak to whoever is over the transport system your son uses, explain how important it is for your son to keep his appointments and let them know you will file a complaint if it happens again. / Our first year home was at least one doctor appointment a week and therapy twice a week, we were constantly exhausted.  But once his pain became manageable we were able to fall into an easier routine.

    Why can’t doctor’s appointments be soon instead of six or more months away.  If at anytime your son feels he needs to be seen sooner, call the doctor and schedule an appointment, if they say six months, explain the need to be seen sooner.

    How can a person go on living when they are in such pain? My son's first year was an endless nightmare of nerve pain, his orthopedic surgeon explained to us that his body and spine were still recovering from the trauma, as his body & spine healed the pain would lessen (though his spine would never 'heal' enough for him to walk again) the Ortho said it was like any other type of injury, it takes time to heal. Understanding that helped us get through some very dark days.

    You and your son are still in the first stage of 'recovery' , it is what I called the overwhelming learning to cope stage - Hang in there, though it's not an easy path to roll down - things will begin to get easier and better.

    God Bless.

  • Monica.TMonica.T Posts: 96Member ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    Walkywalk I can relate to the feelings of helplessness - It comes in part from being overwhelmed, from a feeling of drowning in to much information, new unknown medical terms and also a sea of misinformation, this site became my life-line - if you haven't requested the information packet yet, please do, it will give you a new sense of direction, of being grounded and of hope. Knowing more about what to expect helps give you the courage to face this new way of life. And it's okay to feel helpless, scary as hell but it's normal ; I still have days where I feel completely overwhelmed and helpless but I am beginning to realize I am not helpless, as much as I want to, I can not cure my son, but I can help him, and even the little things matter.

    A few months ago I was where you are now emotionally, and I confess I still fall into that ugly pit of despair from time to time but now I am learning how to claw my way out and back into the light - and for every bad moment we look for ways to steal even the tiniest good moments. And though it may not seem like it yet, you and your son are moving toward better days. Just take it moment by moment and remember - even though we are expected to be 'strong', sometimes nothing helps to release inner torment like a good cry.  

    You are stronger than you realize.

    God Bless

  • WalkywalkWalkywalk Posts: 3Member
    First Comment
    You have no idea how helpful you have been.I am stuck in a horrendous, awful adventure.  This injury has further pull my family further apart.  I have three children. One boy two girls.  All in their twenties when the accident occurred.  The boy is in the middle.  He was a star football quarterback all of his life in a football town.  The girls were top athletes too. Nonetheless, the girls always felt he was the gifted one-getting all the attention. When their bother got injured, of course both were scared to death.  He was so distraught and in so much pain, that he was often very short and rather mean to them.  Now, neither is talking to him.  I try to explain their brother’s situation, but they still see him as “brother” and not the issues he is enduring.  He yells at them, “Do you want to be me now? Now do you think I am the chosen one?”

    Helpless again.  No one listens.  I find myself crying often even just out of pure frustration.  I am the one who cares for everyone.  Born into a medical family, I never realized how the medical community (and society) help the handicap to feel just that-handicap and disabled.  Still, I keep digging, pulling, scraping, yanking for anything to help my child and family get through this difficult adventure and prosper.  It help to vent to those who understand.  You are the first person I have talked to that has gone through what I have with a child.  Thanks!
  • Monica.TMonica.T Posts: 96Member ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    Hello Walkywalk Your son's anger is a normal part of the healing process, hating God, hating his situation, hating what he can't do, what he now has to do, and even being angry at you; sometimes I think our kids direct their anger at us (moms) because they know they can vent their frustrations on us and be forgiven for it. My son's injury occurred 20 months ago and we are still trying to sort things through.  

    It may seem far off but as times goes on your son will begin to adjust, it will take time and lots of heartbreak and tears but he will begin to get there. My son broke down several times in great sobbing tears saying he wanted to die, nothing rips a mother's heart to shreds like seeing her child suffer and not being able to fix it. You mentioned your son likes computers, finding the things he can do and encouraging him to continue as many of those activities as possible will help him emotionally to understand that his life is not over, just different, very different but also still very much enjoyable.

    Being an athlete may make adjusting rather difficult for him, right now he is still in the beginning phase of his recovery, as the months pass and his body begins to adjust to it's new way of being, as pain management improves, and as he comes to realize there are still things he can do; his emotional and mental health will improve too.

    Since outpatient rehab is currently to difficult to manage, try talking to his doctors (ALL of them) about arranging for in-home PT & OT therapy , also contact his insurance and ask about what services they cover / offer - explain [in detail] the problems with transportation, pain and other issues. His insurance might even provide transportation to doctor appointments. Ask that your son be assigned an insurance case manager  also find out if his insurance has a case advocacy program, if so, contact them too. Anytime you speak with insurance be sure to write down the name of the person you speak to and request a call reference number, so if you have to call back you won't have to keep going back and forth repeating the problem to everyone there.  Also - please speak with his doctors about your son's 'anger' - depression often disguises it's self as anger.

    Pain hinders healing, make sure his doctors, all of them, understand that his pain is not under control - and that makes everything more difficult, daily life, sleep, productive therapy sessions and makes travel to doctor appointments nearly unbearable. I know your son is old enough to speak for himself but right now he may be to overwhelmed with pain, fear, frustration and anger to express himself clearly, {with his permission} become his advocate, speak up and keep speaking until you make yourself heard.

    "Additionally, he is plagued with UTI’s."    My son suffered from repeated UTIs until his urologist finally order  closed-catheter-kits for him, once his bladder begins doing better he will go back to the ones that are reusable after cleaning. UTIs seem to be an issue with many new cath users. I also learned from this site that cranberry juice and D-mannose can help prevent UTIs.

    He experiences terrible pain and contractions of the bladder.  Be sure his urologist is aware of how painful this is for him and discuss treatment options. Don't just accept 'you have to learn to live with it' as an answer. / The answer for my son was cathing more often, which meant going to war with the insurance to get them to pay for more than four catheters a day.

    We have schedule so many doctor’s appointment only to miss them because the transportation cancels.  Call and speak to whoever is over the transport system your son uses, explain how important it is for your son to keep his appointments and let them know you will file a complaint if it happens again. / Our first year home was at least one doctor appointment a week and therapy twice a week, we were constantly exhausted.  But once his pain became manageable we were able to fall into an easier routine.

    Why can’t doctor’s appointments be soon instead of six or more months away.  If at anytime your son feels he needs to be seen sooner, call the doctor and schedule an appointment, if they say six months, explain the need to be seen sooner.

    How can a person go on living when they are in such pain? My son's first year was an endless nightmare of nerve pain, his orthopedic surgeon explained to us that his body and spine were still recovering from the trauma, as his body & spine healed the pain would lessen (though his spine would never 'heal' enough for him to walk again) the Ortho said it was like any other type of injury, it takes time to heal. Understanding that helped us get through some very dark days.

    You and your son are still in the first stage of 'recovery' , it is what I called the overwhelming learning to cope stage - Hang in there, though it's not an easy path to roll down - things will begin to get easier and better.

    God Bless.

  • Monica.TMonica.T Posts: 96Member ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    Hello Walkywalk Your son's anger is a normal part of the healing process, hating God, hating his situation, hating what he can't do, what he now has to do, and even being angry at you; sometimes I think our kids direct their anger at us (moms) because they know they can vent their frustrations on us and be forgiven for it. My son's injury occurred 20 months ago and we are still trying to sort things through.  

    It may seem far off but as times goes on your son will begin to adjust, it will take time and lots of heartbreak and tears but he will begin to get there. My son broke down several times in great sobbing tears saying he wanted to die, nothing rips a mother's heart to shreds like seeing her child suffer and not being able to fix it. You mentioned your son likes computers, finding the things he can do and encouraging him to continue as many of those activities as possible will help him emotionally to understand that his life is not over, just different, very different but also still very much enjoyable.

    Being an athlete may make adjusting rather difficult for him, right now he is still in the beginning phase of his recovery, as the months pass and his body begins to adjust to it's new way of being, as pain management improves, and as he comes to realize there are still things he can do; his emotional and mental health will improve too.

    Since outpatient rehab is currently to difficult to manage, try talking to his doctors (ALL of them) about arranging for in-home PT & OT therapy , also contact his insurance and ask about what services they cover / offer - explain [in detail] the problems with transportation, pain and other issues. His insurance might even provide transportation to doctor appointments. Ask that your son be assigned an insurance case manager  also find out if his insurance has a case advocacy program, if so, contact them too. Anytime you speak with insurance be sure to write down the name of the person you speak to and request a call reference number, so if you have to call back you won't have to keep going back and forth repeating the problem to everyone there.  Also - please speak with his doctors about your son's 'anger' - depression often disguises it's self as anger.

    Pain hinders healing, make sure his doctors, all of them, understand that his pain is not under control - and that makes everything more difficult, daily life, sleep, productive therapy sessions and makes travel to doctor appointments nearly unbearable. I know your son is old enough to speak for himself but right now he may be to overwhelmed with pain, fear, frustration and anger to express himself clearly, {with his permission} become his advocate, speak up and keep speaking until you make yourself heard.

    "Additionally, he is plagued with UTI’s."    My son suffered from repeated UTIs until his urologist finally order  closed-catheter-kits for him, once his bladder begins doing better he will go back to the ones that are reusable after cleaning. UTIs seem to be an issue with many new cath users. I also learned from this site that cranberry juice and D-mannose can help prevent UTIs.

    He experiences terrible pain and contractions of the bladder.  Be sure his urologist is aware of how painful this is for him and discuss treatment options. Don't just accept 'you have to learn to live with it' as an answer. / The answer for my son was cathing more often, which meant going to war with the insurance to get them to pay for more than four catheters a day.

    We have schedule so many doctor’s appointment only to miss them because the transportation cancels.  Call and speak to whoever is over the transport system your son uses, explain how important it is for your son to keep his appointments and let them know you will file a complaint if it happens again. / Our first year home was at least one doctor appointment a week and therapy twice a week, we were constantly exhausted.  But once his pain became manageable we were able to fall into an easier routine.

    Why can’t doctor’s appointments be soon instead of six or more months away.  If at anytime your son feels he needs to be seen sooner, call the doctor and schedule an appointment, if they say six months, explain the need to be seen sooner.

    How can a person go on living when they are in such pain? My son's first year was an endless nightmare of nerve pain, his orthopedic surgeon explained to us that his body and spine were still recovering from the trauma, as his body & spine healed the pain would lessen (though his spine would never 'heal' enough for him to walk again) the Ortho said it was like any other type of injury, it takes time to heal. Understanding that helped us get through some very dark days.

    You and your son are still in the first stage of 'recovery' , it is what I called the overwhelming learning to cope stage - Hang in there, though it's not an easy path to roll down - things will begin to get easier and better.

    God Bless.

  • Monica.TMonica.T Posts: 96Member ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    Walkywalk I am so sorry you are going through such emotional pain and heartache. Sometimes as mothers it feels as if the burden of holding it all together falls on us. Other family members just don't seem to realize the extra worry and stress their indifference places upon us.

    Your son having been very physically active, a football star is going to make being in a wheelchair a difficult adjustment for him, he may need someone he can talk to, a counselor he can vent his frustrations and fears to. He might help him emotionally and mentally for him to be able to express himself to a professional. And in doing so it might help lessen the tensions between himself and his sisters.

    It might help for his sisters to begin to read about being the sibling of someone newly paralyzed, give them a new perspective on what their brother is going through. This site has a leading library, they may have some books on the subject. Their not talking him is not a solution, his injury changed the family dynamics and they need to realize that his anger is not directed at them personally, but at his situation. They need to try to not take his anger personally. He needs their patience and support and so do you.

    It may help to sit down and write out your feelings, your needs, your worries and your needs. Then share the letter with your daughters, let them know what you are going through and what they can do to help make things go more smoothly. Your daughters are probably afraid too, they probably want to help their brother but as young adults they may not be emotionally strong enough to quite know how, they may worry they will say the wrong thing and trigger an outburst from their brother. And they may have guilt they are not even aware they have, guilt that their lives still okay while their brother's life has been so tragically altered.

    I can relate to family issues, my own family is so stand-offish it frustrates me beyond telling. They see no reason to learn Charlie's daily care routine.

    Family can be our biggest strength or our biggest stressor.

  • Monica.TMonica.T Posts: 96Member ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    Hi Walkywalk I am so glad you found this site, it is not only a great source of information but the 'community' here is very supportive, I felt completely alone until I came here, I needed people to listen, to let me cry, let me vent, and help me realize I am not in this alone.

    Anytime you need to talk, or vent I am here to listen :)

    On the Home page have you checked out the : Resources in Your Area link yet?

    There may be programs in your area that can help with transportation, family support and other areas of need.

    I know it's not easy, but with time it will get easier.

    Hang in there.

    :)

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