9 replies to this topic

[lynne]

Hi all,

I need some advice here. My son who you might remember is a total quad - being C3 complete. He has now left rehab as they said they have done all they can for him. He is now in residential care in a hospital which is totally unsuitable for him. He is only 18 years old and is surrounded by much older people ie.30,40,50 and the older resident is 64. I was under the impression that it was for physically disabled young people but I was informed that once you are under 65 you are considered young!! There is hope for some of us after all!!. Anyway, the problem is that he is a very sociable young man and loves to talk to people but where he is most are too old or have acquired brain injuries. He is sharing a room with two others. One is 24 years old and cannot speak at all and seems to be in his own little world, God help him, I know he is somebody's child and the other is a man in his late 50's who has Huntingtons disease. I voiced my opinion before he ever went there and I was told that it was either that or a nursing home where he would be with really old people with alzeimers - great choice eh! He is quite a happy lad normally and has never really complained about anything right from the very start but I can see big problems starting with him. He is gone from being happy to really very tearful and it is breaking my heart. I don't know how to comfort him. We are trying to get him back into education but it is all only starting off. I am afraid for his mental health at the moment. He is only three days in this place and at first they wanted to put a nappy (diaper to you US people) on him and he told them that he did not wear these and they told him "everybody here has to wear them" and he insisted he would not. He has bowel programme of every 2 days and he always had a shower on that day. There is only one shower day in this new place and he is really disgusted over that. As you all know everything has to have its own order and he is really fussy over his hygiene as he always was. He told me that he does not feel "safe" in this hospital. What do I do. My house is not at all wheelchair friendly and is too small, I only have 2 bedrooms and it is a cottage and all rooms are totally inaccessible. I have had it mesured up by the Occupation Therapist from Rehab and it was suggested that I try to build an extension to include everything sittingroom, bedroom, bathroom to accommodate a trolley,etc. but I have no money. The Government Grant is a measly €20,320 and I reckon the costs will be in excess of €100,000. I have had an Architect draw up Plans but am waiting 8 months to hear back from him to see what it will cost and then it is down to fund raising etc. My son will get no compensation as he was driving his dad's car without his permission when he had his accident. Any ideas on how to keep up his spirits. I talk to him on the phone every day as he has a mobile which is blue tooth enabled. Any advice would be very much appreciated. Sorry for going on so long.

[Bob Clark]

Hi Lynne,

He certainly shouldn't be rooming with two mentally impaired patients. That could be detrimental to his mental health. Seems like the staff might be placing him in that room to help themselves.... so he can look after them!

Even if they need to change or bend their "rules" a little bit and upset the running of the institution (oh God, don't interfere with the way they do things... the way they've ALWAYS done things!) they should be getting him ready for the real world. And that includes a bowel program.... not sitting in his own waste until they find time to clean him up. It may be not be healthy for him to wait until he goes on his own. He may get impacted sitting in a nappy (diaper sounds better... we use napkins to wipe out face with over here!) waiting for his sluggish bowels to work. And if he wants a shower every day he should be allowed. Every other day seems very reasonable. 18 year olds can be fussy about their hygiene and that's a good thing. What would our world smell like without a little vanity? Skin care is very important to your son's good health.

I just saw a movie on HBO... a British movie called Rory O'Shea Was Here. It highlighted the civil rights of the disabled in the UK and how they can and should be mainstreamed into society.

It would be best if he had a friend there his own age that he could more closely relate to. But a catastrophic injury like SCI kinda brings the age groups together. The problems are the same for all. An older quadriplegic, who has head his on straight, could act as a mentor of sorts for your son. But those who are in a residential care facility like the one you describe may not be the best mentors for your son. It would be best to find him someone who has been out on their "own" in the real world and can give him a little hope, encouragement and instruction.

It usually boils down to money, doesn't it?

Hopefully you can speed the architect and fundraising up and get him home ASAP. For a C-3 complete your son sounds like he's really trying to become as independent as possible. And considering his high-level C-3 injury, sounds very well adjusted. You don't want him to lose hope that things will get better. At least a little bit better. Maybe he can enroll in college after he gets home.

Quote

The Government Grant is a measly €20,320 and I reckon the costs will be in excess of €100,000.

€100,000 is almost $180,000 USD. You can buy quite a nice house over here in Florida for that amount. Almost 4 of my houses. And mine was built handicapped accessible for a paraplegic... roll-under sinks and cabinets and roll-in shower. And ramps for the front and back door and the garage. Maybe real estate and construction labor costs are much higher over there.

I wish you and your son the best. I'm sure it's been very difficult on you too. A mother having to watch her young son going through this monster called SCI.

[gazrobsuk]

Hi Lynne,

Wow now I feel lucky having being married already & living in a bungalow & getting compensation after 3 years..

I don't know the Irish system but I would have thought there must be another alternative if he was/is really unhappy in a place. You might also wanna try Andy's forum/message board (sorry Simon) as it has mostly UK folks on & maybe somebody can suggest something.

My only thoughts are if people can visit & take him out most days (some kinda rota) which means he'd only be sleeping there. Would he be entitled to any home care if he was at home like here in England you can get a visit twice a day (but not always the best hours) on the NHS etc?

100k seems way too much (BTW Bob that's euros I think so about 65-70k pounds which is a lot less than $180k) so even with such a pathetic grant & maybe a small loan you might be able to build a single story extension as long as he can get some care either by you or carers.

I also would have thought that you can appeal to the grant folks as the government has some responsibility haven't they? Go to the CAB & ask (if you have it in Dublin) If you don't know Andy's forum/boards I can give you the link but hopefully the good folks here know stuff.

I truly feel lucky now & wish you well.

Gaz

http://www.gazrobs.freeuk.com

Edited by gazrobsuk, 26 January 2006 - 04:12 PM.

[Joed]

Hi lynne....

I don't blame you for being concerned. It just can't be a healthy environment for a youth with a recent disability to be around older, more geriatric patients. Make sure he fully understands that his recovery and potential functional abilities will probably be vastly different from most of his rehab mates.

I'm sure he's overwhelmed by all he's seeing right now, and naturally, he's applying this information to his own life and future. There is still a lot he can learn from them, but ideally he should be with those closer to his own age.

Keep seeking out better arrangements, if possible. If you know of someone his age with a similar disability, see if they can visit with him in rehab occasionally. If you don't know of someone like that, then call local organizations that deal with disabilities, and they might be able to refer you to someone who could help.

I was a kid with a disability, and so much of my successful rehab had to do with having other kids my own age around to help inspire and encourage me.

I hope his circumstances can be improved in time. Tell him from me to 'hang in there' and try not to let himself get too discouraged. It won't always be this way.

~Blessings

[lynne]

Hi all,

Thanks to everybody who replied to me. You are all very special people and the advice you have given me is great. Unfortunately I own my own house but have a mortgage on it and if I sold it I could not afford to buy another one. The cost of property in Ireland and especially Dublin is just off the wall e.g my little 2 bedroom cottage was valued 2 years ago at 270,000 euro - I bought it in 1994 for 38,000 Irish Punts at the time so you can see what I am up against, that is why I have put an estimate of 100,000 euro on the extension and that really is only a guess, it will probably be much more, the extension will be bigger than the house!!! Anyway David is in this other hospital because I have been told by the Health Services that there is no other place for him as he cannot come home because the house is unsuitable. They do not cater for the likes of him you are either old and disabled or young, disabled and brain injured. He is not vent dependant any longer. He is off that about 4 months now and his trachy was removed also before Christmas so basically he is just paralyzed now (does that sound bad?) He needs 24 hour care obviously and I have had to fight the system for everything for him. If I lived in Council housing I would automatically be rehoused with my son but because I have worked all my life - since I was 17 (I am now 48), I am being punished for it. I often thought if I had my children when I was single and stayed that way (not got married, etc.) I would have been better off. Scrounge off the State, never work and you will get everything. Even the refugees here are given top notch houses and these people have never worked in this country - anyway I think that might be for another day's ranting!! His father does not live with me. When we split I paid him off and re-mortgaged the house in my name so I still have loads owing on it. I would not get another mortgage because I do not earn enough even though I earn about 30,000 euro per year - imagine that I can't afford to buy a house on that money, so I think fund raising will have to be my only option to get my child out of that hell hole and get him home. He is ringing me 3-4 times a day crying.

Thanks folks for listening to yet another rant from me.

take care and thanks.


Lynne

[Bob Clark]

Hi Lynne,

I know what you mean about playing by the rules and paying your taxes and getting screwed. It's the same here in the US. I was the youngest guy ever to work at the steel mill that I was hired at... midnight shift of my 18th birthday. Six years later I was hit by a reckless motorist and got paid a mere $10,000 for a lifetime of paralysis. My point is my neighbor. He's always worked under the table ..... doesn't pay any taxes into the system so he gets full drug prescriptions absolutely free and he gets a lot of em. He knows the right doctors to go to in order to get Vicodin and any pain pills that he wants and that he usually sells or trades for illicit drugs like crack. Whenever he gets hospitalized everything is paid for. Even his private doctor visits are all covered from the first penny. He was in a boating accident that screwed his ankle up but he doesn't limp at all and if I pay him enough he can mow my lawn and shimmy up my 50 foot antenna to put my American flag up there without any problems! Bob, the patriot! He spent 7 months in jail for burglary. When he got out he went boating in the hot and sunny Gulf of Mexico and since he hadn't been out in the sun very much while in jail, he got a bad sunburn. It became infected with a MRSA strain of bacteria. They treated him in and out of the hospital and with home healthcare nurses coming to his house... his parent's house... he's 37 years old. The nurses had to wake him up to treat him... those long, long, tiring nights of smoking crack! He was treated with intravenous Vancomycin and oral Zyvox (Zyvox cost $1,400 for 28 pills) to the tune of $50,000. He refused to quick drinking alcohol so the infection still isn't cured. Whenever I get a bladder infection I have to shell out $100 for Cipro! It's insanity. It doesn't pay to work, play by the rules and pay taxes.

Since I worked and paid taxes into the system I need to pay the first $800 for any hospital stay and after paying a $124 annual deductible 80% of my doctor visits are covered. Although not all doctors accept the low payments from Medicare. And I had pay for all my prescription drugs. If I get a $1,000 wheelchair I need to pay the 1st $124 plus 20%. That's if they approve it. Sometimes they don't and I have to keep trying and trying and trying by getting other doctors who know how to fill out the damn forms.... So that's $324 I'll need to pay when and/or if I get approved for a wheelchair.

The new prescription drug plan they just instituted here is a joke too. Actually it's a scam dreampt up by the Republican Party and the Pharmaceutical companies. I need to pay the first $250 then I get 75% off their inflated prices.... that's if my drug plan happens to cover the drugs that I need. They don't cover any diazepan-type drugs so if I want that for anxiety or muscle spasms that all comes out of my pocket. But my neighbor who has never paid taxes and still works under the table gets everything paid for. Plus he gets a check for $700 a month. The check pays for his brand new shiny truck with those fancy rims and his auto insurance.

So if you know how to work or milk the system here in the US you can make out nicely. We have the same problem with illegal aliens here too. They get everything that my neighbor gets all for free too. And if an illegal alien woman gives birth to a baby here it's automatically a US citizen. Go figure. The illegal aliens from South and Central America and Mexico time it right so they give birth just over the Rio Grande on this side of the border. That stupid law needs to change. Sheeeesh.

It's a shame that people who live in the richest countries in the world have to hold bake sales and car washes to pay for a handicapped accessible place to lay their head at night. But both of our countries have plenty of money to nation-build in Iraq.

I needed to rant too.

[Jilly]

Hey a good old rant and rave does the soul good!

Lynne, My heart goes out to you. I feel so sad for you and your son. If its not bad enough that he has been injured like this, he has to live in hell too! And you have to watch!!! Im a mum too and I was bad enough when my daughter broke her foot! I can only imagine the hell you must be going through with your son. If It was up to me I would sling him over my shoulder and take him out of there!! (but Im not big enough and live a bit too far away!!!)
Its a shame you cant get him to a computer so he can talk to us too....there are quite a few young ones here that are good to talk to.

I agree, you need to go to everywhere you can for financial help, Ireland sounds very expensive - I thought NZ prices were bad!! He needs better care than he is getting - he is going to be in a chair for a long long time and needs to know that he is still an important, worthwhile person. being in an place like that isnt showing him that. It makes me mad when disabled people are treated like retards!! (it makes me mad when retards are treated like retards!!)

I swear if I ever win the lottery I will set up a place for people who need some TLC.
Ahhhh....better go and buy a ticket!

Good luck with it all....I will let you know if I win lotto!

[lynne]

Hi Jilly & Bob

Thanks for your lovely messages. I do appreciate everything. I took my son out for the afternoon on Sunday just to get him out for a few hours. We went to a local hotel beside where I live which over looks the sea it was a lovely sunny but cold day and he met up with a few mates and they had a few drinks, lunch and a few laughs, God knows he certainly needed that. He was absolutely exhausted by the time we got him back I hope he finally got a night's sleep - even though it might have been alcohol induced!! Also a friend who he met in Rehab visited for a few hours on Saturday that gave him a lift also.

I got talking guy who I know for years over the weekend - he is a psychiatric nurse and I was telling him my story - he was aware of David's accident - and you will never believe what he said to me! He told me he brought it on himself - the bast????? - would you believe that? I know my son was no angel, he lost his halo a long time ago but I will be the first to admit that. I told him he was a disgrace to his profession and walked away. I would hate to think he would ever be nursing any of my relatives. Anyway thought I would keep you up to date.

Jilly, I bought the Lotto ticket but no luck for me - it was worth 150 million euro, never mind I should have remembered -a fortune teller told me years ago I would never be wealthy - I can but hope she was wrong!!! Maybe it's up to you now!!!


Lynne