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

Thread: On Being a Parent of a Young Man Who is Growing Up -

  1. #1
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default On Being a Parent of a Young Man Who is Growing Up -

    Here's the thing about being a parent to a son or daughter who is totally dependent - as you get older, you feel more vulnerable, not less. You begin to give over responsibility for care to others... doctors who are no longer paediatricians, but adult physicians, carers, social workers, pharmacists, agency coordinators, and therapists. All the players in the adult world of care are new because your child has graduated to a new system of care. Like parents of children on their first day of high school, we stand by, not sure of our place - we step forward and then back. We say a prayer of grateful thanks to the Gods who took the burden of care from our shoulders and then we worry and worry again.

    Yesterday I brought Nicholas shopping for new summer clothes. We have an invitation to dinner on Sunday night - one of our neighbours has a daughter who is Nick's age and the two were at school together when they were young. Eleni is now studying towards a Master's degree in Disability Studies - an academic route that she credits to her formative friendship with Nick. We look forward to sharing dinner and memories on Sunday night.

    The van where Nick lives is broken, so we will provide transportation on Sunday and also today when we visit the hospital for a pain pump refill. At today's appointment, we will continue working with our wonderful pain doctor to find funding solutions for the medication in the pump. On our single pension, it is unaffordable long-term.

    Funny how our worries change over time. When Nicholas was little, we worried constantly, "What if he dies?". Then as he survived against all odds, the worry transformed into "What if he lives?". Last night, I woke at 2:38am only to lie awake thinking "What if we die?".

    Small things and big things that break or break down are the stuff of daily life. But changing roles from being the sole and full-time carer for someone completely dependent is very difficult. And even small things breaking can feel like terrible storm clouds looming. My mother is still in the hospital, we have a pain appointment and I don't trust the fates. Today, I am a mother/daughter on guard.

    From my blog at www.donnathomson.com
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  2. #2
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    (((hugs))) I ask myself those same questions...honestly, I think if I were to die, Caitlin would too soon after. I can't really picture anyone else doing all the things I have to do as a caregiver.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  3. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    So. Calif.
    Posts
    318

    Default

    Such valid thoughts Donna. When Tyler was born with Ohtahara Syndrome, he wasn't expected to live beyond six month to two years, much less five years, ten years, fifteen years and now we are looking at 18 years. After our scare last year with my health, we are looking at not what happens when Tyler dies, but when we die and Tyler is left behind. We are his grandparents, so that is much more likely to happen. We know that his mom will step up and take him home with her, but she knows virtually nothing about her son. We have raised him since he was a baby with her visiting when she could. She has three small children to raise and a two story house clear across the United States. So many challenges, so many changes, so much to cope with and to learn, much less taking on the financial responsibility. She couldn't cope when Tyler was a baby, will she be able to cope with him as an adult with severe disabilities? Will it be too much for her and her family to take on? It all seemed to simple when Tyler was little, but not so simple now.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  4. #4
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default

    (((Lisa)))) That's the problem, picturing someone else doing the caregiving and especially when it is so complicated and there are so many judgement calls. (((((Tamie))))) I can't imagine how worried you must be about your own health and ability to care for sweet Tyler. Your are a constant inspiration to all of us here at Braintalk. I guess it just helps to talk about these worries. Hope you all have a wonderful day! It's sunny in Ottawa where I live xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  5. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,040
    Blog Entries
    1

    Default

    ((((((Donna))))))

    The transition to adulthood is a challenging adventure. Everything changes, from attitudes about their care to funding for their care. Losing the safety net of laws and regulations, which we had when my boys were minors, was shocking for me.

    As adults, our children are considered indigent, and we are not responsible for them legally or financially. We do provide for them, of course, but we aren't required to do so. The benefits Jon receives are insufficient to meet his needs, so we must supplement.

    Every parent of younger children should be aware that programs serving adults with disabilities in the U.S. are shrinking, not expanding. They need to be prepared to provide for their children during their adulthood. I recommend saving for those expenses as if you were saving for college tuition/rooming, a car, etc. for a non-disabled child. SSI is certainly inadequate to support anyone, let alone someone with complicated medical issues.

    I will pray that you are able to sort out Nick's funding obstacles, and that you are spared an unwieldy financial burden.

    For many years, Jim and I have battled the "What if we die?" question. Of course, as we age that question tends to increase our fears of such a catastrophe. We have no one among our family or friends, who could possibly take over Jon's care. We aren't nurses, but we do provide skilled nursing care.

    We take some solace in the reality that both of us dying simultaneously is unlikely. Whoever is left will carry on, and that person will need to hire someone to help care for Jon. Jim and I work 24 hours every day with Jon. And many of the things we do for Jon require two people to participate.

    Like ((((((Lisa)))))) and ((((((Tamie)))))) I fear that no one will be able to care for Jon as well as we do, and that he will not survive without our care and our advocacy about his care. However loving or competent a nurse or caregiver might be, if they do not know Jon, they are at a disadvantage from the start.

    I can give a doctor, nurse, paramedic, anyone, Jon's complete medical history, including medications, dates, allergies, and appliances in less than 10 minutes. No one else can do that. No one else will ever be able to do that. Including Jim.

    Unless you are the parent of a child with special needs or complex medical issues, it's likely you can't relate to that scenario with the accompanying fear of: "What if I die before she/he does?"

    It is the most unnatural thought for any parent to have to contemplate. And for that single reason, it is extremely difficult to plan for that possibility. How does any parent balance: I lose my child versus my child loses me? It is a very painful place.

    I pray for strength for you, for all of us, as we wrangle with these dilemmas and glimpses into the future. The path we are traveling isn't easy, and it's riddled with potholes and sharp turns. But, I look at it this way: We've made it this far, we can go the distance.

    I'm sending healing prayers for your mum, and I know that being in the middle of caring for an elder and your child is quite exhausting, so please take good care of yourself.

    Enjoy your dinner and visit with Eleni on Sunday, as I'm sure that you will all have a great time. And Nick will look so dashing in his new summer duds!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  6. #6
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default

    Hmmmm, yes, Rose, everything you say rings true and familiar. I have worked for a long time with an organization called PLAN (Planned Lifetime Advocacy Networks). It's an organization that was started by a group of ageing parents who worried about their children disabilities after the parents themselves passed away. They started by asking "What is a Good Life?" and they decided that loving relationships were the key. So, the organization was born to create personal support networks of friends, family and professionals together who would each take a piece of that child's support for the child's lifetime. BUT and I mean BUT, those families had children with developmental disabilities, not severe and complex physical disabilities. You cannot parcel out THOSE chores! So I continue to monitor everything about Nick's care and I'm sure that I am annoying, but they don't know the history and they can't read him like I can - mothers cut to the chase in giving care and giving histories! Anyway, I'm an optimist by nature and recently I took on a new project of teaching a workshop called "How to Know What you Want and Get What You Need" - the workshop is with an organization called the Advocacy School and its usual job is to teach government relations and best practice lobbying strategies. I really like that we as a community of parents can be as smart as any of the best government lobbyists. After a lifetime of getting what we need for our kids, any of us here could teach this workshop... I sure know YOU could!!! By the way, same is true in Canada of the government. Sure, we have universal health care, but they won't look after our kids very well and certainly not in the style to which we/they are accustomed! And for sure, the government will not LOVE our children. In our province, there are no housing options for our adult children either. And it's getting worse. But one truly fantastic thing that PLAN did was lobby for a Registered Disability Savings Plan - and the government said YES with no tax clawbacks to the disability pension benefits! So when a child is diagnosed, the plan is opened and the government matches up to (forget exactly how much, but it's a lot) and a baby starting a plan now will have half a million by the time they are 30 just on account of modest contributions from the family, gov't contributions and compound interest. It's a great plan and I'm glad we have it for Nick! Anyway, enough of my babbling on. Natalie is making spaghetti carbonara for dinner and it's just us so must enjoy our girls night now! Lots of love to you, Rose, and all my friends here on CN!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  7. #7
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,040
    Blog Entries
    1

    Default

    ((((((Donna))))))

    I do remember your mention of PLAN previously. It's a wonderful concept. But for it to work, you need family and friends, who are willing to make that commitment. We have no remaining family, at least who would be the slightest bit interested in supporting Jon in any way (sadly). And our friends, who are extremely supportive and have offered long term support after our deaths, are scattered around the globe, and realistically, cannot provide Jon with the care and attention he needs. They could hire careproviders. But supervision and intervention is beyond their range.

    I can't imagine you being annoying, Donna! But I KNOW that I can be very annoying to nurses and physicians, especially in a hospital setting. If Jon was in the community, as Nick is, I would probably annoy those people down to their last nerve!

    I often apologize to medical people for my overzealous micromanaging. (Or is it macromanaging?) On Jon's hospital release last year, I apologized to Jon's doctor for being a pain in his neck (or other regions), and he said, "Never. If you didn't do that, he wouldn't still be here," and he gestured around in the air, meaning "alive on Earth."

    Most nurses also get that about me. And I'm sure that they get that about you too. We are completely vested in the well being of our children. We've had to fight for everything that they need, and we've had to solve mysteries about their condition, and that makes us more detail oriented and ... cranky.

    Jon's high school life skills teacher said to me at graduation, "People either think you are a saint or a b**ch." He continued as I stared at him incredulously, "I think you are both. You have to be in order to get the things your children need. You have to be a B to battle the System to get what they need, and you are a saint for putting up with the garbage they throw back at you."

    Being called a "saint" embarrassed me. But for the first time in my life, I wore the B label with pride.

    Our parental role doesn't change when our SN children become adults. It's just a chronological number in many respects, because they are still dependent for their needs and upon us to advocate for their needs, regardless of their age.

    I would love to attend your workshop. I always learn so much from you. I would be honored to co-teach with you. That would be so cool. I hope your workshops will be video taped and put on Youtube. Then we can all access your wisdom.

    The RDS Plan sounds like a tremendous idea, and I'm glad that you have that. How does it work? Are the savings plan funds to be used for specified purposes? Is it limited to any age? How long do you have to contribute to it? What if you don't contribute to it? What happens to the funds in the Savings Plan, if the recipient dies?

    Disabled persons in the U.S. are limited to how much they can possess in assets to qualify for assorted government assistance programs. No life insurance policies, no burial plots, no property, etc. is allowed to qualify for several of Jon's programs. So, it sounds like Canada is doing just the opposite, and I applaud you!

    Before I became a vegetarian, I loved spaghetti carbonara. I'm sure that you and Natalie are enjoying a great girls night. Put your jammies on and giggle a lot.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  8. #8
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default

    Hi Dear Rose (not Saint, not *****, just wonderful mother and wonderful friend!),
    I read your message to Natalie and we both loved just knowing that we feel so connected to someone we feel close to and whom we've never met. Our dinner was delicious and we've lit the fire - it's raining and chilly outside. Here's the link for the RDSP: http://rdsp.com/ (savings plan) - you can't cash it in till after ten years after its creation, but we're working on that for kids who are palliative. If the person with disability dies, the principal (contributed by the family) goes back to the family with interest and the government takes back its contribution. When cashed by the person with disability, it's cashed at that person's tax rate which is very low usually, so that's good. Also, grandparents can roll over their RRSPs without penalty, because they are all registered plans that are tax free. It's a good idea and one that is quite unique in the world, I think. We have a registered education plan for Natalie and I remember thinking, why don't I have a registered plan for Nick's future? That's what I really need! So, we got one and I am grateful. Anyway, more later. Did you read my private message btw? Much love, Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  9. #9

    Default

    Very thought-provoking, Donna.

    I know Nick's situation is very different from mine, but I am still experiencing the transition into adulthood, living away from my parents who now live in an entirely different country, and finding out what it means to be 'me'. It is the most challenging thing I have ever done, and will ever do, but I am loving the experience. I have never felt so free to do what I want, when I want and how I want, but at the same time, that freedom is also very overwhelming at times and all I want is for my parents to hug me and to tell me that I am doing the right thing, or if not, to tell me what to do. I suppose we all go through these things, and life is forever changing indeed. A year ago, I never would have thought I'd be going through this, but I am, so I am trying to embrace every moment of it -- good or bad.

    I really just wanted an excuse to share something on my mind, so, sorry if it doesn't relate to what you've said. Hugs to you and Nick.

  10. #10
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default

    Hi CP Chick, you bet it relates! Thank you for sharing - I can't begin to imagine the courage it requires to break out on your own with your parents abroad. Wow, I hope you have support and friends who are nearby because everyone needs those things in life. Our old pal from these boards, Robin (aka wheeliegirl) moved out of an institution at the age of 47 and is doing really well now on her own in a different state. But it was really hard at first. Congratulations for having the courage and the imagination to reach for your goals and spread your wings. Well done! Have you seen ads for the new TV series about girlfriends who are all w/c users? It's called Push Girls - looks like fun and it's great for role modelling to a younger generation of young women with disabilities.
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


Page 1 of 2 12 LastLast

Similar Threads

  1. Living Options for Young Adults with Physical Disabilities
    By skigirl1689 in forum Child Neurology
    Replies: 7
    Last Post: 06-19-2012, 11:01 AM
  2. Hypertension: A Growing But Often Hidden Problem
    By clouds z in forum Emotional Support
    Replies: 1
    Last Post: 03-21-2012, 11:14 AM
  3. Parent's Suicide
    By britsbff in forum Anxiety Disorders (General)
    Replies: 4
    Last Post: 01-03-2012, 01:32 PM
  4. Young Carer's Initiative
    By CanadianMSer in forum Caregiver Support
    Replies: 0
    Last Post: 10-12-2011, 01:22 PM

Tags for this Thread

Posting Permissions

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


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.