13 replies to this topic

[little_one]

Hi,

My fiance who is on this forum has transverse myelitis and is pralysed from the T10 however it is incomplete. To cut a long story short her mother has been driving me crazy, when my partner first came home her mum was very sad and helpful etc, then she went on a holiday to Canada that she didn't want to cancel and was gone for 2-3 weeks (I can't remeber exactly. When she got back she was extremely guilty when she came home and admitted it to me adn apologised profusely for leaving me alone with her daughter as I had already caed for her in Australia in the hospital and on the flight back as her medical aid froom Australia to the USA which took 2 days of flying due to the longer route we took to ensure she had flatbeds on every flight to lie down in.

Her Mum (my mother in Law soon) is now at a stage where she believes her to be very temporarily sick and isn't trying hard enough to walk because she thinks because K can use one leg partially and use crutches around the house in a limited capacity (she looks and sounds like Jimmy on south Park) that she can walk normally if she tries harer and pushes through the pain.

She does not believe she is entitled to any disabled benefits such as parking or welfare etc despite her losing not able to get a job, her mum will not let her get hand controls in a car, K and myself have to keep her pain medication a secret because her mum and her dad don't believe she is in pain and is faking it all the time also! They and especially her mum are completely in denial about the whole thing, I bring it up every so often when K's Mum occasionally will corener me and ask how she is and I will tell her she doesn't sleep, wakes up in cold sweats and is in a lot fo pain, I also mention casually that she is getting depressed about being paralysed. Her mum responds all the time with 'well I think she needs to go to bed earlier and start eating more protein, she doesn;t eat enough protein she always says. Never once have I heard her tell Kaile how sorry she feels for her because fo the situation she's in lso.

Sorry this is not written well I am getting very upset writing this because it is driving me crazy. K needs emotional support not just from me but from her Mum and Dad and they do not think she needs it because they believe there is nothing wrong.

I would just like everyone advice on how I should deal with this because right now I live with K and her parents as they wont let us leave home together and rent our own place because they don't think at 23 years of age each we are capable fo doing that which is very degrading for both of us since I have been living away from my parents since I was 16 years of age.

[Muskie]

Hi Little One,

All I can offer is this, have one of K's doctors make a phone call or if possible a personal visit to educate them. I believe K was an athlete before her SCI, her parents have probably seen her push herself to incredible heights when she was an AB. I'm sure she is working her butt off, I see it everyday with my own son who was a gym rat and now can't pick up a bottle of water. I am only 2 months into this myself and when I have doubts if he is working hard enough I just need to go to the rehab gym and watch him for 5 seconds and I know that I am an idiot. Educating them is the key. As far as you 2 moving out on your own and them opposing it.. hey I am a parent of 4 my youngest is 21 my oldest is 30 and I still think that father knows best. But what do I know I got married when I was 21 and my wife was 20 and are still together. As far as disability payments you are entitled I am sure she would rather have a job and earn her own way, but until then you take the money. Her parents sound old school and sometimes it hurts their pride to take a "handout" which this is definitely not. It is the reason we all pay taxes after all the years her parents have been paying for others it i time for a little payback. Hope this helps a tiny bit.

[kim wright]

perhaps its too hard for them to admit their baby is disabled .
i am t12 complete and my dad found it very hard to come to terms to the fact i would never walk .
he asked every day "have they got you up walking yet " every day i told him "no" .

[Ginny]

I think it's sad that K isn't getting the support she needs from her family. They definitely need to get educated on her condition. I suspect they havem't done so because they don't want to believe it themselves. I'm a bit puzzled, though, about them not letting you move out on your own. It seems as if both of you are of legal age and able to make your own decisions.

[greybeard]

Ginny, on 18 October 2011 - 06:41 PM, said:

I'm a bit puzzled, though, about them not letting you move out on your own. It seems as if both of you are of legal age and able to make your own decisions.

Exactly. Why are you allowing them to dictate where you live?

[KayDub]

Thanks guys for the support (and thanks James for the post and being so concerned). Just to clarify the reason we haven't been able to move out is a financial one. Currently my health insurance is through my dad (Tricare through the military). It covers a lot of things but there's still copays and some payments that he's helping with. Then on top of that when I got sick I lost my job and my finances got screwy. Since I just finished college it was the first time I'd been able to work full time and save for a period of time without having the use my savings as living expenses throughout school. Not a great economy to be a young student, disabled or not! But it still looks like we're moving out together in March, after we spend some time working full time and saving at our ski school jobs and living at my dad's. That way in Australia I can begin the naturalisation process and become eligible for Medicare there and we'll have enough money to travel, find a place and have for living expenses until we're both able to get jobs (although little_one will still be in school full time.

Regardless of where we're living it just hurts to not have my parents support. I found out today my mom's neighbours, who I've known like second parents for years, have been saying how I'm faking it and relying on my parents (even though their daughters are pretty spoiled, travel abroad and shop all the time without working, go to expensive schools to study fashion, etc.) It shouldn't affect my mom's opinion obviously, but it's still hurtful. She just has a lot of her own mental problems stemming from a pretty horrible upbringing and major anxiety issues. I've always tried to be there for her, but also as a teenager we had the typical tumultuous mother/daughter relationship. She still hasn't gotten over some of that and she deflects a lot of the problems she has with my dad and with other things in her life on me. I can look at everything really objectively to get through it but what it boils down to is that she's my mom, I'm still pretty young and going through a lot, and really want her support.

[Tetracyclone]

Kay recently said they were looking for a place but could not find one suitable, so there may be a bit of exxageration, as is allowed in a good rant. Sounds like you are feeling like a kid again, Little one! Haha. Don't worry, just remember who you really are. it also sounds as if Kay's Mom was a real support for awhile, then went away and returned as the MIL from Hell. Maybe her body was snatched by an evil spirit in Canada.

The idea of asking intervention by a Doctor or Nurse is a good one. Perhaps family counseling. Anyway, I am confident you will find a way to get out of her house soon, and to get your own car. All of this could be solved with money, which is so discouraging...

Here is my check for the first $50,000.

[KayDub]

Ha ha tetra, thanks! When I when the lotto or become a super famous awesome lawyer I'll totally pay you back! Hopefully the interest is low ;-)

The thing about looking for a place was originally I was hoping for an on campus apartment like they have, because it would be covered by my scholarship. That's when I found out they only had one and although it was for grad students, it was given to an undergraduate para because his parents complained about the undergraduate housing. That's when I started the search for a new place, wanting to go so far as to take out student loans to pay for rent. My dad has a couple investments for me still that I can't access but count as assets so any of the community services couldn't help me find an affordable place because I didn't qualify as "low income" enough (not that I'm complaining about this, it just made things a bit more difficult). The housing situation was just a mess and because of no places that are accessible (I'm talking just being able to get in the front door and get around, not ADA accessible with roll in showers and cut out sinks, etc.), let alone affordable. But if it meant saving my relationship with my mom and keep my sanity I was willing to find a way to pay for it (as first year law students we can't work more than 10 hours a week but I was willing to try that but working presented a whole new set of problems, since I still get really sick and any minimum wage jobs I got wouldn't really work around that and also if I was still living at my mom's, transportation is a huge issue as she lives in a fairly rural area just outside all the city development).

But then today, ironically after little_one wrote this post, my mom apparently came home and started sobbing to him. I think it finally hit her, going on 6 months since I was first hospitalised. I feel really horrible, she called the adult neighbour saying nasty things about me a b*** (very out of character, she can be negative especially towards me, but she never talks about other people behind their backs or says things like that. She said she now realises I'm not going to get better tomorrow or next week and I got a little better back in late July/early August, but haven't' made any improvement since (but not for a lack of trying and even though the doctor said honestly because of everything he doesn't expect much more improvement, I'll keep trying!). I just gave her a huge hug when she dropped me off for school and told her I love her. Hopefully I can help her through this and then get her to realise it's not the end of the world and (outside of being devastated everyday about my ski school situation) am coming to terms with being in my chair and that I still want to go to school and travel and find a good job and get married. That I still like going out with my friends and playing sports and am finding all sorts of new things I can do in a chair and continue to live my life. It might just take her awhile to get there, I'm just hoping she doesn't regress back into skepticism (she's had problems doing that with important/difficult issues in the past)

I still feel like a teenager sometimes, I started dealing with a lot of major injuries and major surgeries when I was 17 and had finally just gotten past them and graduated undergrad and was able to finally move out on my own. Then this happened and here I am back at home! Also I've always just been one of those perpetual teens in the way that I'm really laid back and easy going and still liked to skateboard and cause havoc with the guys on my hockey team that I'd played with since I was in grade school. I've been pretty mature though because during all that I still had to pay my own way and work multiple jobs and take care of "adult things". I think part of it too is that I was in hospital all alone (except for my fiance, his mom, who up until this point I considered my pseudo-mother when I was living in Australia, came in and visited me once and started yelling out of no where that I was a liar which just made me start sobbing so badly the nurses had to come in). Because of not having my family with me then I think it makes me want to have that experience of love and support from my family.

Once again thanks for the input everyone and for putting up with my insecurities and parent issues.

[wheeliebear75]

Unfortunately I think that because so many of us did get our SCI from trauma of some sort that those of you who got this way from an illness or disease & those of us who have quite a bit of function but aren't "normal" don't fit into everyone's ASS-U-ME-tion of what/who is a SCI.

I'm sorry you're not getting more support....I hope the support you find here helps you to keep your spirits up.

[greybeard]

KayDub, on 19 October 2011 - 01:38 AM, said:

Just to clarify the reason we haven't been able to move out is a financial one. Currently my health insurance is through my dad .

Ah. I can see that's a tricking one to resolve. Your only options seem to be to get the support of your doctor and then to sit them down and MAKE them listen to you until they finally get it. Good luck

[Tetracyclone]

Then, on the long side, you both have this opportunity to work through parent "issues" while you are still young. How lucky can you get? try to mop it up while you wait for my check to clear.

[little_one]

Tetracyclone, on 19 October 2011 - 02:13 AM, said:

Kay recently said they were looking for a place but could not find one suitable, so there may be a bit of exxageration, as is allowed in a good rant. Sounds like you are feeling like a kid again, Little one! Haha. Don't worry, just remember who you really are. it also sounds as if Kay's Mom was a real support for awhile, then went away and returned as the MIL from Hell. Maybe her body was snatched by an evil spirit in Canada.

The idea of asking intervention by a Doctor or Nurse is a good one. Perhaps family counseling. Anyway, I am confident you will find a way to get out of her house soon, and to get your own car. All of this could be solved with money, which is so discouraging...

Here is my check for the first $50,000.

hey, no exxageration, it's both a finacial aspect on our end and an inability on her mothers end to let her daughter live her life again and losing control of her life is a distressing thought for her. ive lived away from my parents for 6 years, would never turn back so this transition has been hard as it is for me to be in a hoe where i am governed and have decisions made for me etc.

[little_one]

Okay everything has ramped up on Kailes mums side of the picture, a complete backflip on her mentality and understanding of Kailes disability, constant pestering to use crutches when they hurt her and she can only use them for very short distances and not in public. Kailes mum keeps telling her everytime we see her that she has to eat protein, there are 20,000 protein bars stacked in the food pantry right now hilarious I know. Verbal harassment such as 'you are causing me all my stress' and 'I can't deal with you anymore i'm moving to the condo in the mountains for a while' she also sent kailes dog away for 4 days to her brothers house 45-60minutes away because it was to much hard work to look after the dog and everything else. Meanwhile Me, I have been not helping Kaile because she doesn't need it but I am there if she needs assistance with getting something off a shelf or pouring a large glass of water etc. She can even get her new chair in and out of the car herself! which I am so proud of her for achieving, such a a huge morale booster as she now doesn't have to wait on other people to get her chair out of the trunk. Needles to say however her mother will not let Kalle put the chair in herself in fear of scratching the upholstery or getting dirt in the car. I am so happy that it cannot fit in the trunk because even when cheryl tries to get it in herself I am certain Kalle will be able to do a much better job with all her practice hahaha aha aha aha
Kai's Mum has completely gone off the rails in terms of ignoring her disability and ignoring the help and support she requires now! instead every word a doctor mentions such as the word crutches is taken out of context and is turned into a treatment that the doctor has made for kai saying to her to use her crutches all the time and you are not allowed to use your chair in the kitchen anymore etc because crutches will help you. number one she cannot use her legs, number two she looks like jimmy off of southpark with the crutches and retarded neighbours legs, no joke we have a great time laughing abut this in supermarkets and grocery stores when passers by are in ear shot I call out JIMMY! and Kaile puts on the sound affects and makes it really obvious, I crack up laughing and shoppers don't know whether to laugh or just walk away, 99% ignore us so we keep doing it till me make them uncomfortable enough to leave their grocery shopping till another day hahahaha. If you can't have fun with your disability and try and make disabilities more of an everyday spoken and talked about occurrence and not something that has to be ignored or has to follow the social norms of being polite and 'don't stare at him jimmy' 'he's in a wheelchair' well yes mrs Kline you taught jimmy to fear wheelchairs and the people in them forever well done, now whenever he sees a quad or a para or anyone that is not 'normal or ab' he will be afraid to look at him/her and walk away. Kays mum is so afraid and I think she is ashamed of her daughter which made me so sad when that crept into my mind, I think this because she never tells anyone what is actually happening as far as her condition or any improvements. She tells family she is in a wheelchair for just a bit longer then she will be walking and she is on crutches most of the time (bullshit) and is ashamed and uncomfortable about bringing neighbours in her street around to the house because she knows Kay will with her outspoken personality fill them in about how she is disabled and it is not curable just wait and see. I think she is in massive denial and is embarrassed and ashamed which i hope is not the case and I am wrong because it makes me so upset. KAY's mum understands the condition now she will not accept it tho and denies that it is really bad and thinks by pushing her into rehab and constant doctors she will one morning walk again. I want someone to so badly sit Down with her and Kay and work through these issues it will be such a better environment for everyone what is the next step am I in a position to get in touch with doctors and semi arrange something at least get it organised then kay can tell her mum that this is what is happening tomorrow, something like that?

Edited by little_one, 22 November 2011 - 12:13 PM.

[greybeard]

little_one, on 22 November 2011 - 12:06 PM, said:

what is the next step am I in a position to get in touch with doctors and semi arrange something at least get it organised then kay can tell her mum that this is what is happening tomorrow, something like that?

My sympathy to both of you for the situation you're in. It must stretch the relationship almost to breaking point. Kay will probably have to arrange any counselling herself but to try and take some of the weight off her, it wouldn't do any harm to make some enquiries yourself to find out what help may be available.

Of course, you could just strangle the old girl. I suspect I would be tempted.

Good luck.