actually there really isn't caregivers around here that can do what I need. The government allows me about 14 hours a day to pay someone to help. Which I have my parents and one friend to help with that. My social worker said that if I lose them and have to go to an agency of some sort I do not get enough hours for the care I need. I need some one here all the time. Sometimes I get a panic attack out of nowhere and if no one is here to help with it. It can be dangerous. Plus I get uncomfortable. Quite often due to my spine curving and need to be adjusted on my trunk whenever I start to slide over. Not to mention the catheters, which is not an exact amount of time. Sometimes it is a different schedule. According to my social worker, the hours I am allotted would not take care of me as needed. She said that with those hours, my only option is a nursing home. And I made this post, mostly to vent. Whatever happens with my parents relationship, I know they will take care of me as long as they are able to. And then I have to really decide where my life will go. When you go into a nursing home, the city takes your house and any property or vehicles or anything and sell it all and that is how you pay for the nursing home. After that money is gone, you go to a low income nursing home that Medicare pays for. I am working on getting new therapy equipment and new therapy with that. And I hope it works enough for I can stay at my house and take care of myself enough where my hours allotted to pay someone will be plenty. I am praying that the new therapy will give me some my body back! Trust me, I am listening to everyone and everything is in my mind, but it is not as easy as it should be!
Monkey, maybe your not getting our perspective on this very well. You gotta understand that we speak from EXPERIENCE when we offer our advice on looking for outside help. I've been in your situation regarding a good caregiver (my ex-wife), who eventually could no longer take the pressure, so she opted out the best way she knew how. Yes, there were other extenuating circumstances on top of everything, but there always are.
Look, you can keep things as they are and continue to listen to the fighting, bickering, and threats of divorce day in and day out, until it will inevitably happen. Or, you can take matters into your own hands and find a decent caregiver now. At least you have your parents there NOW to show a career the ropes. In a few months from now, the way things are going as you describe, who knows how things will play out?
It's ultimately your decision how your care is handled . . . . . But, don't expect to come on here and complain about things being as they are if you have it in your power to change it, but choose not to. Yes, there are bad carers out there, but there are ALSO very GOOD ones, and I just so happened to marry one of them.
Okay, I'm done.
I have talked my parents just as you asked. The argument never gets in the way of my cares. They take great care of me that way. And we have talked many times and they feel that they would never choose not to take care of me. And my mom goes on vacation every year in my dad can get time away whenever he wants. See they are my best friends and we get along great. So they never feel as if I need to go away for a bit. And when you add it all up all the care that is needed is not a lot of tough things. It is just a bunch of little basic things multiple times a day. My mom used to work at every nursing home in this area, and I am not exaggerating about how bad nursing homes are here. If I go to one, it will be very horrible care and will only harm me more than it will help out. I know my parents don't have much time left to take care of me I know I will probably have to turn to my siblings but it is so hard because I don't want them to have to devote their life taking care of me
So what have your parents said about this? One assumes that you've actually sat them down and explained that you're not happy - both as their son whose struggling to come to term with the concept of them not being happy living together (in your house), BUT ALSO as a cripple who NEEDS TO HAVE A LONG TERM PLAN for not just your physical health but also your mental.
If Catmint is correct and the additional strain of caring for you is affecting their relationship that it is even more important that you start finding an alternative arrangement, even if this is only for one or two days of the week so that they can have a break. Hell even a few hours off a day having someone "baby sit" you would be of great importance. Now I know nothing of having to care for a disabled person long term, the closest I've been to this is my own relationship with my parents after my accident, and that as a babysitter who used to care for a disabled child (9 year old with severe CP) whose story I will not share, as awesome as he was, because when I try and add any personal content I am told I am ranting. But I have read on this forum again and again about caring burn out - when the carers just can't cope any more especially when they don't have external support. Are your parents hitting this? They're not getting any younger which wont help and you can't rely on a miracle coming up and saving you when they decide enough is enough, or should one of them fall seriously ill.
Perhaps you could suggest you take a weeks vacation in a nursing home to give them chance to talk through their issues together, to relax and not have to worry about you all day and night, and if needed, for one of them to pack their bags and start looking for alternative accommodation nearby. Of course while you're on holiday you wont be sat on your arse doing nothing - talk to all of the nurses and see if they know any GOOD ones that do personal home visits. Perhaps someone could do the physical stuff like bowls, dressing, washing, (all the stuff that your parents are going to start struggling with sooner rather than later), agencies that the nurses would be happy to work for...
Yes it's not the perfect situation, but of course the perfect situation is where the son can care for the parents.
the marriage was bad before my accident. My dad says that taking care of me is the best thing in his life. He said he would be dead from drinking. If it wasn't for me, and he is sober now. My mom says that I'm the only one who can make her happy and laugh no matter what is going on. We have talked about this specific of taking care of me. If they split up and it will work out. I had a great, great care, the only problem is the arguing which is not constantly but enough to bring tears when it happens.
Wise words indeed from bouncer.
With the best will in the world your parents won't be around forever so it would make sense for you to sort out your care while they are still able to be involved. Why wait until things go wrong and you are in a desperate situation.
I wonder if their relationship troubles stem from the responsibility they have of looking after you. Perhaps the pressure is getting to them. If their marriage is as unhappy as you paint it no wonder they argue. As I see it they are trapped in an unhappy marriage because they are responsible for your care. I may be wrong but if you start to take control of your care you may find that their attitude to each other changes for the better. If it doesn't and they do still split up then it was inevitable. But at least you will have care in place.
It seems to me that you are looking for obstacles all the time. Try thinking positively, find out what's available and make it happen
Edited by Apparelyzed, 04 May 2012 - 08:56 AM.